Today marks the first whole month of school I've attended since all this mess happened.
I'm have a busy, but not overloaded, course schedule and have classes Monday through Thursday, with dialysis on Monday, Wednesday, and Friday. I usually get out of dialysis a little before 2 pm, and I have class in Sacramento, about 30 minutes away, at 3. Sometimes traffic is good, sometimes it's not. That's just a game I have to deal with. I try to get something to eat in between that time too. If I don't, I wouldn't get to eat from somewhere between 9 am and 8 pm. Not good for a dialysis patient! Eating on Monday and Wednesday can be a bit of a struggle too in the sense that I'm not really suppose to eat fast food that often.
I'm glad to be back in school. It's so great to have something to do after having nothing to do for a year. I know I won't prefer that when all the work is piled on, but it's better than being miserably bored. I'm doing okay I suppose. This past month has been extremely exhausting for me though. I'm not used to being up and about and out all day long day after day. At the end of the day, I'm so worn out when I get home. Hopefully this will improve as I build my stamina back up. I guess I have an excuse with going to school and dialysis on the same days. Sometimes on Monday and Wednesday, I just want to put my head down and nap in class, having just gotten off treatment plus just eaten. Nap time please. Nope, no rest! I should probably learn to go to sleep much earlier at night than I do also though.
Sometimes I regret having to take so many classes my first semester back after my troubles, but I'm making it through. Hopefully I'll get adjusted soon and will power through. Now I just need some new music to listen to on the way there and back, hmm...
Thursday, September 29, 2011
Thursday, September 22, 2011
Live Donor Clinic
Last night, UC Davis Medical Center hosted a Live Donor Clinic in a conference room in a hotel next to the hospital. The head of the transplant center had a talk (with a horrible slideshow, poor people had no idea how to use computers lol), followed by the head transplant surgeon. It was a little informative, mostly boring, and quite hard to understand since they both had heavy accents lol. That's all fine, they know what they're doing in their main jobs and that's the important part. The lead of the live donor center talked a little next and then we were all introduced to a panel of 4 sets of donors/recipients. There were a pair of young brothers, a husband and wife, a brother and sister, and an older pair of brothers. Each person talked for a bit about their experience throughout the process, as well as saying many good things about UCDMC. They were very emotional, which is understandable considering how big of an event it is, and all very encouraging. Having done my own research over and over since all this happened, I didn't really learn anything last night, but seeing the emotional aspect of it from the donor/recipient point of view did help. I was able to talk to a few of the panelists afterwards also and discuss how dialysis affected them, among other things.
Thursday, September 1, 2011
A year ago
Last night, a year ago, all this kidney mess reared its head. It's been a crazy year, but I made it through. Thanks for all your thoughts and prayers. Keep them up please. Still need to make it through the daily struggles with dialysis and need to get a transplant.
Tuesday, August 2, 2011
Update
Today, my mom and I were in Sacramento, down the street from UC Davis Medical Center, where the transplant center is. We decided to stop in just to see if we could find out anything new, as we hadn't heard anything from anyone in a while. We walked in expecting to have to make an appointment and come back. The receptionist made a couple of short phone calls and said if we could wait about ten minutes, someone would be out to talk to us. We moved the car from the 15 minute parking into the parking garage and came back in. A minute or two later, a lady comes out and introduces herself to us and leads us to a part of the room where we could talk privately. I didn't catch her title but she has worked for the transplant center for over twenty years. She talked to us for almost a half hour, talking to both of us, not just one or the other, making sure to answer any questions either of us had. She was very personable and spoke in terms we could understand instead of all crazy medical terminology. She talked about how the transplant list worked and how the donation process worked, explaining both in several different ways. It was very easy to talk to her comfortably instead of feeling rushed or having unanswered questions. She treated me like a real person instead of a patient or a number/name on a chart, made sure that I was comfortable with what she was saying, and tried her best to see things from my point of view of having to go through all of this. Upon leaving, we didn't really know anything more about where I am in relation to the transplant list but we felt much better about the whole process and understood more than we have before. We were also given a donor information packet that explained things about donating a kidney and were told that someone from the donor system at the transplant center was going to give us a call to answer any further questions or to reinforce what we already found out.
I'm asked at least once a week if I've heard anything new about the transplant list or anything of the sort. I usually just say no, as it is an extremely system and it's not just a numbered list of names that you progress up. They don't call you and say "Hey, you moved up a spot!" Today was the first time I've talked to anyone from the transplant center in months. I usually thought when asked if I had heard anything, that if I had heard anything, I would be in the hospital having the surgery. This isn't necessarily the case as there are backups for the best match, backups for the backups, and all kinds of things. There are several different things that have to be tested and matched for a kidney transplant. There are blood types, tissue types, all number of different kinds of antigens that have to be there or not be there. The lists from each center are put into a registry combining all of the different centers and when a kidney becomes available (as they are not just on a processing line. A kidney doesn't just show up. It has to come from a donor or a person who has died.), the people on that registry are checked against the available kidney to see what different things match that particular kidney. The registry is narrowed all kinds of which ways then and only when people have the same match for the available organ, does the time spent on the list even come into effect. At that point, there are still many different factors to look into, such as if the top match on the list is available to get to the hospital in the set amount of time, have they been sick recently or in the hospital?, is their information up to date? Then the person has to go to the center, get an even more extensive series of tests done than have ever been done before to make sure everything will work with the information from the available kidney. If not, it goes to the backup person, who has to have all these things done, and so on. All of these progressive tests have to be done in a very limited time frame as a kidney for transplant is only able to be used within a very short span of a few hours.
It's not an easy process at all, but the people at the transplant center definitely know what they're doing and although it may feel more comfortable to know that you're a certain number on a list, it certainly doesn't work that easily. The person we talked to today explained this in several different ways and I probably just explained it in a pretty confusing way, but it's a lot to take in at one time. I'm really glad we did decide to stop into the transplant center today, as even though we don't really know anything more than we did before going in about the time I have to wait, I feel much better about the whole process and the donor idea.
I'm asked at least once a week if I've heard anything new about the transplant list or anything of the sort. I usually just say no, as it is an extremely system and it's not just a numbered list of names that you progress up. They don't call you and say "Hey, you moved up a spot!" Today was the first time I've talked to anyone from the transplant center in months. I usually thought when asked if I had heard anything, that if I had heard anything, I would be in the hospital having the surgery. This isn't necessarily the case as there are backups for the best match, backups for the backups, and all kinds of things. There are several different things that have to be tested and matched for a kidney transplant. There are blood types, tissue types, all number of different kinds of antigens that have to be there or not be there. The lists from each center are put into a registry combining all of the different centers and when a kidney becomes available (as they are not just on a processing line. A kidney doesn't just show up. It has to come from a donor or a person who has died.), the people on that registry are checked against the available kidney to see what different things match that particular kidney. The registry is narrowed all kinds of which ways then and only when people have the same match for the available organ, does the time spent on the list even come into effect. At that point, there are still many different factors to look into, such as if the top match on the list is available to get to the hospital in the set amount of time, have they been sick recently or in the hospital?, is their information up to date? Then the person has to go to the center, get an even more extensive series of tests done than have ever been done before to make sure everything will work with the information from the available kidney. If not, it goes to the backup person, who has to have all these things done, and so on. All of these progressive tests have to be done in a very limited time frame as a kidney for transplant is only able to be used within a very short span of a few hours.
It's not an easy process at all, but the people at the transplant center definitely know what they're doing and although it may feel more comfortable to know that you're a certain number on a list, it certainly doesn't work that easily. The person we talked to today explained this in several different ways and I probably just explained it in a pretty confusing way, but it's a lot to take in at one time. I'm really glad we did decide to stop into the transplant center today, as even though we don't really know anything more than we did before going in about the time I have to wait, I feel much better about the whole process and the donor idea.
Friday, May 13, 2011
Another procedure
Yesterday, I arrived at the hospital at 7:15 in the morning. I was supposed to have a procedure done on my right arm at 9:30. I went into pre-op, got the IV set up, and waited for them to come get me, and waited, and waited, and waited. The nurses/techs came to get me right before 2 pm. I was taken into a room with a bed in the middle and 3 monitors hanging on the left side of it, with a small xray machine over my right arm. I watched the whole thing on the screens through the xray. The doctor numbed the area over the fistula then inserted a wire which he pushed up to my shoulder. Watching that on the monitor and feeling it was quite unnerving, although it didn't hurt, just a little poking. There was a narrowing at the upper end of the fistula that was causing the branches to occur in the lower part. The doctor inserted 3 different sizes of balloons over the whole procedure and blew them up in the fistula. OW OW OW OW OW. He put in a stent to make sure the fistula doesn't narrow again at that location. This all took around 15 minutes, really quick considering I waited for hours.
The doctor says that the branches should go down in a week or two and he wants to see me sometime next week to see how it's doing. My arm stings a bit over the insertion site and kinda pokes me in the upper arm but it's not terrible I guess. I'm glad the procedure's over though. Now I can add right arm fistulogram to my repertoire.
The doctor says that the branches should go down in a week or two and he wants to see me sometime next week to see how it's doing. My arm stings a bit over the insertion site and kinda pokes me in the upper arm but it's not terrible I guess. I'm glad the procedure's over though. Now I can add right arm fistulogram to my repertoire.
Tuesday, April 26, 2011
april
I realize I haven't posted anything for over a month now, oops. There's not really anything going on health wise. I've been feeling well over the past month or so and have been relatively stable.
In terms of getting a transplant, it's all about the wait now. I'm waiting the time until they find a match and I'm at the top of the list, which according to the center may be 3 to 5 years. Thinking about being on dialysis that long isn't really appealing, but looking at it another way, it's better than what would happen if I didn't have it, so I think I can deal with it.
The alternative to waiting the time is to get a live donation from a friend or family member. This is able to be done even if the person isn't a match, as the transplant system is set so if someone has a willing donor, they are bumped to the front and a swap can be done with someone else's donor that does match. Getting a live donor would be the best in relation to health and to the wait time, but it's kinda hard to just ask people "Hey, can I get a kidney from you?"
In other news, my best friend is flying out from South Carolina next month, pretty excited for that. I'm still trying to figure out what to major in for school in the fall. I think I'm getting close though.
I'll try to update more often, even if nothing is really going on.
In terms of getting a transplant, it's all about the wait now. I'm waiting the time until they find a match and I'm at the top of the list, which according to the center may be 3 to 5 years. Thinking about being on dialysis that long isn't really appealing, but looking at it another way, it's better than what would happen if I didn't have it, so I think I can deal with it.
The alternative to waiting the time is to get a live donation from a friend or family member. This is able to be done even if the person isn't a match, as the transplant system is set so if someone has a willing donor, they are bumped to the front and a swap can be done with someone else's donor that does match. Getting a live donor would be the best in relation to health and to the wait time, but it's kinda hard to just ask people "Hey, can I get a kidney from you?"
In other news, my best friend is flying out from South Carolina next month, pretty excited for that. I'm still trying to figure out what to major in for school in the fall. I think I'm getting close though.
I'll try to update more often, even if nothing is really going on.
Thursday, March 24, 2011
Wahoo
The financial coordinator assigned to my case called me today to answer any questions I have and to let me know that I can call her if anything new comes up.
And
She let me know that as soon as we got off the phone she was going to approve the financial standing for the transplant list, which means that as soon as she did that, I would officially be on the transplant list.
Woohoo!
And
She let me know that as soon as we got off the phone she was going to approve the financial standing for the transplant list, which means that as soon as she did that, I would officially be on the transplant list.
Woohoo!
Sunday, March 6, 2011
Update time
This week has been soooooooooooooooooooooooooooooooooooooooooooooo much incredibly better than the past 2 weeks. Physically I've felt almost completely better, my blood pressure is slowly but steadily going back down to around normal, and I've almost got my normal energy level back. Mentally, I've felt much better too, more relaxed, more at ease. It's definitely been a much better week. Getting back to normal finally.
I found out last week that my disability stuff will be starting on the 23rd. Woohoo, finally. It's nice to have some red tape out of the way. I still won't be able to work with it I don't think, but at least it will help me be able to live a little. If I don't have to spend it all on these insane gas prices, that is.
Also, I found out this week that I've been admitted to California State University, Sacramento for Fall. I've been trying to get into various schools for a while now (having trouble with the stupid government budget cuts messing up the acceptance numbers at the schools), and since I can't really be too far from Sacramento for any length of time for the transplant things, this works out extremely well.
I could still use some people to talk to, but this has been a very good week. Keep it up.
I found out last week that my disability stuff will be starting on the 23rd. Woohoo, finally. It's nice to have some red tape out of the way. I still won't be able to work with it I don't think, but at least it will help me be able to live a little. If I don't have to spend it all on these insane gas prices, that is.
Also, I found out this week that I've been admitted to California State University, Sacramento for Fall. I've been trying to get into various schools for a while now (having trouble with the stupid government budget cuts messing up the acceptance numbers at the schools), and since I can't really be too far from Sacramento for any length of time for the transplant things, this works out extremely well.
I could still use some people to talk to, but this has been a very good week. Keep it up.
Faith
I've always been a Christian and believed in God and Jesus, but all of this that has gone on in the past few months has really made me rely on faith even more. I can't even fathom how someone could make it through all of this without some type of reliance on God.
The physical aspect of it all is rough enough, having tests done, being hooked to a machine for 3 hours every other day after having 2 GIGANTIC needles stuck into your arm. I've been extremely blessed in all of this that that's the only real pain I've had to deal with. Yeah, I said blessed to have two nails stuck in my arm 3 times a week. It's so much better than it would be if I was in pain all of the time, and I have constantly thanked God since this all started that I've been able to get by with just the poke of the needles.
The mental side of things is even crazier. It's a great deal of things to have to deal with. No one ever really expects to be saddled with these kinds of things in day to day life before they're elderly. Going to dialysis and being the youngest one there by far, so much that the social worker whose job it is to relate to the patients can't even relate to you is tough. I try to keep a positive attitude and smile and things like that, but it's really hard sometimes. My family does all they can to help. None of my friends really understand though. I don't expect them to, it's not something anyone would normally understand when they're young. I'm still learning about it all even months later. It's a day to day process. Without my family and faith, I don't know how I'd be able to deal with it all.
I've never really been one to ask why me. I've always accepted since I was a little child that this is just something I'll have to always deal with. Since all this came up last August, I haven't really been angry about any of it at all. What is there to be angry about? It's not like it will help anything. I'm not upset with God for sticking this stuff on me. It's just my situation. Being angry with God wouldn't do me any good at all.
I have to thank God constantly for giving me such a wonderful family to help me through all everything. It does make me feel terrible to think sometimes that I'm dragging them through this everyday and hurting them with it, but He helps me to realize that that's part of what families are. I'm blessed for having such wonderful, caring parents and brothers.
I also am very blessed to have a fantastic team of doctors, nurses, and technicians at the dialysis clinic. They do their absolute best to make every patient feel the best they can and to give the best treatment possible. Sometimes talking to them totally changes my attitude around. I know it's not coincidence that I was put into this clinic instead of a different, possibly closer one. God knows what's best in every situation.
I've always believed in the power of prayer. Having so many people praying for me is so very encouraging. I've certainly prayed more in the past few months than I ever have and I don't intend to stop. Not only is it talking to God, thanking Him, and asking for healing and other things, it's also a very helpful stress relief. I'm constantly praying whenever, wherever now.
I have also started reading the Bible a bit at a time to try to read the entirety of it. Getting through the Old Testament can be a little tough, but if there's a book worth getting through, this is the one right?
I have to thank God for everything, honestly it could be a lot worse.
Usually with faith related things, church is one of the first things people think of. I've been going to church a bunch more in the past few months, although I still don't think we've found the right one to go to on a regular basis yet. Some are too big, some just don't feel right. I'm sure we'll find the right one soon enough.
I think this all has also changed my outlook on people and things in general quite a bit for the better. It's easier for me to give people chances and not immediately think badly of them for insignificant things. I'm never going to really be a people person (like my crazy brother who is wonderful with people!), but hey, I can always work on how to handle people a bit better.
Overall, I don't know how I would have made it this far through this without faith in my life. I know I just have to trust God and know that He has everything under control.
The physical aspect of it all is rough enough, having tests done, being hooked to a machine for 3 hours every other day after having 2 GIGANTIC needles stuck into your arm. I've been extremely blessed in all of this that that's the only real pain I've had to deal with. Yeah, I said blessed to have two nails stuck in my arm 3 times a week. It's so much better than it would be if I was in pain all of the time, and I have constantly thanked God since this all started that I've been able to get by with just the poke of the needles.
The mental side of things is even crazier. It's a great deal of things to have to deal with. No one ever really expects to be saddled with these kinds of things in day to day life before they're elderly. Going to dialysis and being the youngest one there by far, so much that the social worker whose job it is to relate to the patients can't even relate to you is tough. I try to keep a positive attitude and smile and things like that, but it's really hard sometimes. My family does all they can to help. None of my friends really understand though. I don't expect them to, it's not something anyone would normally understand when they're young. I'm still learning about it all even months later. It's a day to day process. Without my family and faith, I don't know how I'd be able to deal with it all.
I've never really been one to ask why me. I've always accepted since I was a little child that this is just something I'll have to always deal with. Since all this came up last August, I haven't really been angry about any of it at all. What is there to be angry about? It's not like it will help anything. I'm not upset with God for sticking this stuff on me. It's just my situation. Being angry with God wouldn't do me any good at all.
I have to thank God constantly for giving me such a wonderful family to help me through all everything. It does make me feel terrible to think sometimes that I'm dragging them through this everyday and hurting them with it, but He helps me to realize that that's part of what families are. I'm blessed for having such wonderful, caring parents and brothers.
I also am very blessed to have a fantastic team of doctors, nurses, and technicians at the dialysis clinic. They do their absolute best to make every patient feel the best they can and to give the best treatment possible. Sometimes talking to them totally changes my attitude around. I know it's not coincidence that I was put into this clinic instead of a different, possibly closer one. God knows what's best in every situation.
I've always believed in the power of prayer. Having so many people praying for me is so very encouraging. I've certainly prayed more in the past few months than I ever have and I don't intend to stop. Not only is it talking to God, thanking Him, and asking for healing and other things, it's also a very helpful stress relief. I'm constantly praying whenever, wherever now.
I have also started reading the Bible a bit at a time to try to read the entirety of it. Getting through the Old Testament can be a little tough, but if there's a book worth getting through, this is the one right?
I have to thank God for everything, honestly it could be a lot worse.
Usually with faith related things, church is one of the first things people think of. I've been going to church a bunch more in the past few months, although I still don't think we've found the right one to go to on a regular basis yet. Some are too big, some just don't feel right. I'm sure we'll find the right one soon enough.
I think this all has also changed my outlook on people and things in general quite a bit for the better. It's easier for me to give people chances and not immediately think badly of them for insignificant things. I'm never going to really be a people person (like my crazy brother who is wonderful with people!), but hey, I can always work on how to handle people a bit better.
Overall, I don't know how I would have made it this far through this without faith in my life. I know I just have to trust God and know that He has everything under control.
So I heard kidneys kinda do sorta important stuff maybe huh?
Everyone knows they have two kidneys (usually). You can survive perfectly well on one kidney. I was perfectly fine with one kidney for years. Most people don't truly know what kidneys do, although they know they are important. What's a kidney? What's it do?
Kidneys are bean shaped, fist sized organs located on either side of the spine in the middle of your back, just under the ribcage.
They clean and filter your blood to remove waste products. This includes ridding your body of toxins as well as creating urine.
Blood pressure is regulated through the kidneys. If your kidneys are damaged, your blood pressure can be messed up. On the other hand, if you have bad blood pressure, you can damage your kidneys.
Production of red blood cells is also stimulated by the kidneys. The primary reason I went into the hospital in August/September was because I was severely anemic. My hemoglobin was very low because my one kidney that I had wasn't functioning properly any longer. Bring on dialysis and fix it all.
Kidneys help regulate various substances in your blood. Minerals such as potassium, phosphorus, sodium, chloride, calcium, and many very important others are all controlled through the kidneys.
They keep the volume of water in your body constant also. Damaged kidneys may cause swelling caused by too much fluid, also known as edema.
These are the most important functions of the kidneys. They can also have part in a person feeling tired too often, having cramps, loss of appetite, having trouble concentrating, itching (I had this problem when I was younger, but it wasn't ever diagnosed as a kidney issue, but now that I look back on it, it's obvious that was the cause.)
Now that you know they're not simple organs that you should take lightly, make sure to take care of your own kidneys! There wasn't anything I could do about my situation since I was born with it, but most of the people that have kidney problems get them from other reasons. High blood pressure, bad diets, diabetes, and other things are all causes of kidney disease. It's easy to dismiss the things you see that say check for certain health issues, but this is definitely one that no one should pass up. All it takes to check is usually a simple blood test.
Kidneys are bean shaped, fist sized organs located on either side of the spine in the middle of your back, just under the ribcage.
They clean and filter your blood to remove waste products. This includes ridding your body of toxins as well as creating urine.
Blood pressure is regulated through the kidneys. If your kidneys are damaged, your blood pressure can be messed up. On the other hand, if you have bad blood pressure, you can damage your kidneys.
Production of red blood cells is also stimulated by the kidneys. The primary reason I went into the hospital in August/September was because I was severely anemic. My hemoglobin was very low because my one kidney that I had wasn't functioning properly any longer. Bring on dialysis and fix it all.
Kidneys help regulate various substances in your blood. Minerals such as potassium, phosphorus, sodium, chloride, calcium, and many very important others are all controlled through the kidneys.
They keep the volume of water in your body constant also. Damaged kidneys may cause swelling caused by too much fluid, also known as edema.
These are the most important functions of the kidneys. They can also have part in a person feeling tired too often, having cramps, loss of appetite, having trouble concentrating, itching (I had this problem when I was younger, but it wasn't ever diagnosed as a kidney issue, but now that I look back on it, it's obvious that was the cause.)
Now that you know they're not simple organs that you should take lightly, make sure to take care of your own kidneys! There wasn't anything I could do about my situation since I was born with it, but most of the people that have kidney problems get them from other reasons. High blood pressure, bad diets, diabetes, and other things are all causes of kidney disease. It's easy to dismiss the things you see that say check for certain health issues, but this is definitely one that no one should pass up. All it takes to check is usually a simple blood test.
Monday, February 21, 2011
Do dah do dah
This past week has been pretty rough. Last Monday, the tech that was setting me up for treatment didn't know that my dry weight was supposed to be bumped up a little bit. I had evidently gained a couple of pounds for the first time in a long long time, and the papers hadn't been updated to adjust my dry weight. Therefore, the tech put into the machine to take off more fluid than usual, which ended up taking off WAAAAAAAAAAAAY too much. This basically somewhat dehydrated me and threw my whole system off. I got a gigantic headache that I couldn't really do anything about since it wasn't anything medicine could fix, and I felt pretty crappy for the next few days. My blood pressure has been up since then and only really settled down yesterday and today, although it's back up a bit tonight. It should go down after the medicine kicks in. After feeling fine for so long, a week of feeling blah is pretty down in the dumps. Hopefully, I'll get to feeling back up to par in the next day or so.
Otherwise, no news really. Transplant financial stuff is still going through its process, as is Social Security / Disability.
By the way, I could always use someone to talk to, if anyone has spare time to give me a call. Not being able to work right now, and not having classes this semester, I get pretty bored. I'm free just about any time. (916) 960-9781.
Otherwise, no news really. Transplant financial stuff is still going through its process, as is Social Security / Disability.
By the way, I could always use someone to talk to, if anyone has spare time to give me a call. Not being able to work right now, and not having classes this semester, I get pretty bored. I'm free just about any time. (916) 960-9781.
Wednesday, February 2, 2011
Nuuzzzzzz
Yesterday, February 1st, 1 day less than 2 full months after the evaluation process, I found out some news.
I called the Transplant Coordinator but he evidently wasn't in his office. The receptionist asked why I was calling and said she was able to help me even though the coordinator wasn't there. She said they were waiting on a certain type of blood work. It turns out that it's the blood work I did last week and sent in. She said they had received it and that it would probably take up to two weeks for processing. The real news is that she said she was able to tell me that the transplant evaluation committee met and approved me to be eligible for listing. There's various little things I'll have to do, such as set up the financial stuff with MediCal, and do a monthly blood work which the staff at dialysis will take care of, but most of all, it's just waiting for a kidney now.
This is the news we've been waiting on for two months or more. I've been so worried that I wouldn't be eligible for some reason or another even though everyone told me I wouldn't have a problem with it. I'm so glad to get good news, but I think I'm somewhat in shock. I don't know if I don't believe it or what. I just feel all confused. I guess I worried about it for so long that having positive results is overwhelming.
Thank you so much everyone for all the support you've given me and my family through all of this. Major hurdle number 1 taken care of, moving on to step 2!
I called the Transplant Coordinator but he evidently wasn't in his office. The receptionist asked why I was calling and said she was able to help me even though the coordinator wasn't there. She said they were waiting on a certain type of blood work. It turns out that it's the blood work I did last week and sent in. She said they had received it and that it would probably take up to two weeks for processing. The real news is that she said she was able to tell me that the transplant evaluation committee met and approved me to be eligible for listing. There's various little things I'll have to do, such as set up the financial stuff with MediCal, and do a monthly blood work which the staff at dialysis will take care of, but most of all, it's just waiting for a kidney now.
This is the news we've been waiting on for two months or more. I've been so worried that I wouldn't be eligible for some reason or another even though everyone told me I wouldn't have a problem with it. I'm so glad to get good news, but I think I'm somewhat in shock. I don't know if I don't believe it or what. I just feel all confused. I guess I worried about it for so long that having positive results is overwhelming.
Thank you so much everyone for all the support you've given me and my family through all of this. Major hurdle number 1 taken care of, moving on to step 2!
Wednesday, January 26, 2011
Davita Antelope
The dialysis clinic I go to is called Davita Antelope, it being off of a bigger road named Antelope. There are a bunch of different people there, including different ones on different days.
In the lobby, there's the receptionist's window. Kathy is usually there. She takes care of all the receptionist duties, as well as most of the scheduling and transportation issues for the people that need help getting to the clinic.
In the main room, there are a bunch of patients, techs, and a few nurses. Most of the patients are elderly. There's a couple of people that might be in their 40s or 50s. I'm by far the youngest, so sometimes I do feel a bit out of place. It's really difficult to get to know the other patients or even talk to them at all because the dialysis stations are spaced far enough apart as you would have to talk really loudly to be able to have a conversation while on treatment. I do have to admit that it really bothers me when I see some of the other patients that break their renal diets so easily over and over and over again by eating fast food everyday or asking for cup upon cup of ice or water. This is at the clinic, I can only imagine what they do when they're out on their own. I felt bad eating normal food maybe once a week lol. I am getting better with that though.
Martha, Marlena, Arnecia, and Biba, and Irena are the nurses. I don't think there are any others, but there might be. They all know exactly what they're doing and do their best to make you as comfortable as possible. Martha is always joking around. Marlena loves my crazy socks. Arnecia and Biba are always asking what I've done on my off days and how I've been. Irena is the go-to nurse for questions about the fistula/access.
There's a bunch of techs. I would name them all, but I might leave someone out. All of them are very helpful and very good at their jobs. They're all very friendly and we often talk about movies or whatever random subject is available while they're setting me up or unhooking me from the machine. I don't get to talk to them too much during treatment as they're always busy doing something with one patient or another.
All of the staff is extremely friendly and knowledgeable about the field they're working in. If one of them doesn't know an answer to a question, they will almost immediately look it up or get another person to talk to me who does know the answer. Everyone does their best to make me as comfortable and happy as possible considering the circumstances of why I'm there. I received a paper this week about a program they're running to award a favorite caregiver at the clinic. I have no idea who to vote for because they're all so awesome.
One of Mel's favorite things to say to me is "We all like you, but we really hope we'll be getting rid of you soon." If someone said this under normal circumstances, this might be pretty insulting. In this case, it's a really good thing. They're all hoping that I get to get a transplant soon so I don't have to have dialysis any longer. I really hope that day is soon too. I have a feeling when I'm able to do that, I'll still visit every so often just to say hello, and thank you for all the work and help they've been.
There is one member of the staff I'm not very pleased with however. This would be Kasha, the social worker. Things haven't exactly clicked at all between us since the very first time we talked. She's really nice, of course, but in no way has she done any of her job to help me. The first day I met her, when I asked her if I would be able to work while on dialysis, she said I wouldn't have to, I could just be disabled and not worry about it. I understand she's elderly and used to working with elderly patients, but I'm not! There's nooooooooooooooo way I want to just be labeled disabled and just sit around. If you didn't know I had chronic kidney disease, you couldn't even tell by looking at me. I would love to be able to work. She hasn't been able to relate to me whatsoever, and it seems like she does the least possible to get by. She told me over a month or two ago that social security disability papers were on her desk and she was sending them in so I could get the benefits from it. I thought it was strange since I hadn't applied but I figured since this was her job, she would know much better than me since I had no clue about any of this. Fast forward to this month, I ask about it, and she says I should call Social Security to find out what's going on. I call them and am told that they don't have anything in the system about me at all. The next dialysis day, I tell her this, and she's like "Oh well, I thought that's what that was. You should just apply again. I have no idea what that was on my desk then." WHAT?!?! Isn't this your job!? How am I supposed to know any of this if the person I'm supposed to find out from has no idea what she's doing? I did apply online and through some paperwork in the next few days, but that's a ton of wasted time, and now I have to wait through the whole process again. It was just very frustrating and I think it would help a lot to have a real social worker to help me through that process as well as the general gist of having to deal with dialysis.
The other patients are mostly elderly like I've said, but they're all kinds of different people. Some are usually happy, some are grumpy, some are extremely loud and complaining, some are silent and don't make a peep. It can be interesting, and some might be interesting to talk to if I ever get a chance. I have to admit I really feel out of place though. I've read online that maybe dealing with it so well at a young age might provide encouragement for the other patients but honestly, I'm not really sure how I'm supposed to deal with everything. I'm not really sure how to help myself, much less the other people. I do my best to stay positive and in good spirits, although it's not easy sometimes.
Overall, most of the people, especially the staff, are all really nice, and having such a good group at the clinic helps tremendously. The techs and nurses are a real blessing from God, and I hope they realize how much their attitudes, knowledge, and overall helpfulness means to the patients.
In the lobby, there's the receptionist's window. Kathy is usually there. She takes care of all the receptionist duties, as well as most of the scheduling and transportation issues for the people that need help getting to the clinic.
In the main room, there are a bunch of patients, techs, and a few nurses. Most of the patients are elderly. There's a couple of people that might be in their 40s or 50s. I'm by far the youngest, so sometimes I do feel a bit out of place. It's really difficult to get to know the other patients or even talk to them at all because the dialysis stations are spaced far enough apart as you would have to talk really loudly to be able to have a conversation while on treatment. I do have to admit that it really bothers me when I see some of the other patients that break their renal diets so easily over and over and over again by eating fast food everyday or asking for cup upon cup of ice or water. This is at the clinic, I can only imagine what they do when they're out on their own. I felt bad eating normal food maybe once a week lol. I am getting better with that though.
Martha, Marlena, Arnecia, and Biba, and Irena are the nurses. I don't think there are any others, but there might be. They all know exactly what they're doing and do their best to make you as comfortable as possible. Martha is always joking around. Marlena loves my crazy socks. Arnecia and Biba are always asking what I've done on my off days and how I've been. Irena is the go-to nurse for questions about the fistula/access.
There's a bunch of techs. I would name them all, but I might leave someone out. All of them are very helpful and very good at their jobs. They're all very friendly and we often talk about movies or whatever random subject is available while they're setting me up or unhooking me from the machine. I don't get to talk to them too much during treatment as they're always busy doing something with one patient or another.
All of the staff is extremely friendly and knowledgeable about the field they're working in. If one of them doesn't know an answer to a question, they will almost immediately look it up or get another person to talk to me who does know the answer. Everyone does their best to make me as comfortable and happy as possible considering the circumstances of why I'm there. I received a paper this week about a program they're running to award a favorite caregiver at the clinic. I have no idea who to vote for because they're all so awesome.
One of Mel's favorite things to say to me is "We all like you, but we really hope we'll be getting rid of you soon." If someone said this under normal circumstances, this might be pretty insulting. In this case, it's a really good thing. They're all hoping that I get to get a transplant soon so I don't have to have dialysis any longer. I really hope that day is soon too. I have a feeling when I'm able to do that, I'll still visit every so often just to say hello, and thank you for all the work and help they've been.
There is one member of the staff I'm not very pleased with however. This would be Kasha, the social worker. Things haven't exactly clicked at all between us since the very first time we talked. She's really nice, of course, but in no way has she done any of her job to help me. The first day I met her, when I asked her if I would be able to work while on dialysis, she said I wouldn't have to, I could just be disabled and not worry about it. I understand she's elderly and used to working with elderly patients, but I'm not! There's nooooooooooooooo way I want to just be labeled disabled and just sit around. If you didn't know I had chronic kidney disease, you couldn't even tell by looking at me. I would love to be able to work. She hasn't been able to relate to me whatsoever, and it seems like she does the least possible to get by. She told me over a month or two ago that social security disability papers were on her desk and she was sending them in so I could get the benefits from it. I thought it was strange since I hadn't applied but I figured since this was her job, she would know much better than me since I had no clue about any of this. Fast forward to this month, I ask about it, and she says I should call Social Security to find out what's going on. I call them and am told that they don't have anything in the system about me at all. The next dialysis day, I tell her this, and she's like "Oh well, I thought that's what that was. You should just apply again. I have no idea what that was on my desk then." WHAT?!?! Isn't this your job!? How am I supposed to know any of this if the person I'm supposed to find out from has no idea what she's doing? I did apply online and through some paperwork in the next few days, but that's a ton of wasted time, and now I have to wait through the whole process again. It was just very frustrating and I think it would help a lot to have a real social worker to help me through that process as well as the general gist of having to deal with dialysis.
The other patients are mostly elderly like I've said, but they're all kinds of different people. Some are usually happy, some are grumpy, some are extremely loud and complaining, some are silent and don't make a peep. It can be interesting, and some might be interesting to talk to if I ever get a chance. I have to admit I really feel out of place though. I've read online that maybe dealing with it so well at a young age might provide encouragement for the other patients but honestly, I'm not really sure how I'm supposed to deal with everything. I'm not really sure how to help myself, much less the other people. I do my best to stay positive and in good spirits, although it's not easy sometimes.
Overall, most of the people, especially the staff, are all really nice, and having such a good group at the clinic helps tremendously. The techs and nurses are a real blessing from God, and I hope they realize how much their attitudes, knowledge, and overall helpfulness means to the patients.
Friday, January 21, 2011
Vroom!
This past week I went to a vascular doctor to make sure my fistula was in good shape, since it seems to be branching out around the access area. The doctor did an ultrasound on my arm from my elbow to my shoulder. He said that there's so much blood going through there with that rapid flow rate that it's normal that the veins and arteries surrounding the fistula would enlarge also. He said that it's working "Too good" and that it's nothing to worry about. The doctor made a comparison to an elderly person whose blood vessels in their arm may be withered and damaged, and he might have to fix it to ensure proper blood flow for dialysis. He said mine is the extreme opposite of that, it runs so well and there's so much going through. There's nothing to worry about at all. He finished by saying that my arm is basically a Ferrari.
I can't say I've ever been called a Ferrari, so that was pretty funny, but good lol.
I can't say I've ever been called a Ferrari, so that was pretty funny, but good lol.
Monday, January 17, 2011
In Search of the Nom Noms
I've always eaten somewhat healthily. My family hasn't cooked things with salt for years upon years. In the past few months, I've had to learn an entire new definition of healthy eating.
A renal diet starts with sodium and the three P's: Potassium, Phosphorus, and Protein. I have to limit potassium, phosphorus, and sodium(salt).
When a person has kidney problems before they reach stage 4 or 5, they need to limit their protein intake. Since I've been on dialysis, I've had to completely change that and begin to eat even more protein than normal. The reason for this is that among the other things dialysis removes from your system, is a good amount of protein. To make up for this, I have to make sure to eat protein with every meal and preferably every snack.
Too much potassium can cause heart problems and muscle weakness. Dialysis is able to remove potassium somewhat easily. I still need to watch the amount I eat though.
Sodium is somewhat the same as everyone. Too much salt will cause your body to hold onto excess fluid and cause your blood pressure to go up. Out of all of these, this is probably the easiest and the hardest to watch at the same time. Just about every food container in any grocery store will list the amount of sodium it has. This is difficult because so many foods you think would be healthy actually have an incredible amount of salt. This is compounded several times by just about any restaurant. I dare you to go out to eat and ask for their nutritional information. The odds are the food will have waaaaaaaaaaay more salt than you're supposed to have.
Phosphorus is the trickiest one of them all. Too much phosphorus can cause mineral deposits in the blood, joint problems, and weak bones, among other things. I have to take a pill called a phosphorus binder before I eat regular meals or a sizable snack. This medicine binds to the phosphorus in the blood and allows it to be gotten rid of easier. The worst part about phosphorus is that everything you eat or drink has some amount of it, but 99% of the nutritional labels don't list the amount of phosphorus the item has.
I'm still learning what I can and can't have. It's a difficult process, since nothing really says the amount of phosphorus it has. Anything tomato based is out of the question. Any type of nuts are out. No oranges or dark soft drinks. Very limited amounts of any type of dairy. Bananas are particularly bad because they are high in both potassium and phosphorus. One of the hardest parts for me I think is the fact that chocolate is also high in phosphorus.
A renal diet is completely different than what anyone would expect of a healthy diet. White rice, not brown or wild. Hamburgers are acceptable in moderate amounts (Yay In-N-Out for being able to cook without salt!). Turkey is probably the best meat for a renal diet.
I also have to limit my fluid intake, although because of the lack of sodium, I'm not as thirsty as I used to be, so it works out.
There's a bunch more intricacies involved but this should do for now. I'll put up some more as I think of them.
A renal diet starts with sodium and the three P's: Potassium, Phosphorus, and Protein. I have to limit potassium, phosphorus, and sodium(salt).
When a person has kidney problems before they reach stage 4 or 5, they need to limit their protein intake. Since I've been on dialysis, I've had to completely change that and begin to eat even more protein than normal. The reason for this is that among the other things dialysis removes from your system, is a good amount of protein. To make up for this, I have to make sure to eat protein with every meal and preferably every snack.
Too much potassium can cause heart problems and muscle weakness. Dialysis is able to remove potassium somewhat easily. I still need to watch the amount I eat though.
Sodium is somewhat the same as everyone. Too much salt will cause your body to hold onto excess fluid and cause your blood pressure to go up. Out of all of these, this is probably the easiest and the hardest to watch at the same time. Just about every food container in any grocery store will list the amount of sodium it has. This is difficult because so many foods you think would be healthy actually have an incredible amount of salt. This is compounded several times by just about any restaurant. I dare you to go out to eat and ask for their nutritional information. The odds are the food will have waaaaaaaaaaay more salt than you're supposed to have.
Phosphorus is the trickiest one of them all. Too much phosphorus can cause mineral deposits in the blood, joint problems, and weak bones, among other things. I have to take a pill called a phosphorus binder before I eat regular meals or a sizable snack. This medicine binds to the phosphorus in the blood and allows it to be gotten rid of easier. The worst part about phosphorus is that everything you eat or drink has some amount of it, but 99% of the nutritional labels don't list the amount of phosphorus the item has.
I'm still learning what I can and can't have. It's a difficult process, since nothing really says the amount of phosphorus it has. Anything tomato based is out of the question. Any type of nuts are out. No oranges or dark soft drinks. Very limited amounts of any type of dairy. Bananas are particularly bad because they are high in both potassium and phosphorus. One of the hardest parts for me I think is the fact that chocolate is also high in phosphorus.
A renal diet is completely different than what anyone would expect of a healthy diet. White rice, not brown or wild. Hamburgers are acceptable in moderate amounts (Yay In-N-Out for being able to cook without salt!). Turkey is probably the best meat for a renal diet.
I also have to limit my fluid intake, although because of the lack of sodium, I'm not as thirsty as I used to be, so it works out.
There's a bunch more intricacies involved but this should do for now. I'll put up some more as I think of them.
Sunday, January 16, 2011
Random update
Random middle of the night update about not much in particular.
This past week went by pretty quickly. Physically, I've felt decent, maybe a little tired. However, that may have to do with not sleeping properly also. My numbers are all still "golden" according to the dietitian and others at the clinic, so that's good/encouraging.
Mentally, the past few days have been pretty rough. I have no idea why. Nothing's going on to make me think any differently. I've just been in a funk. I keep worrying about things, even though everyone says everything is going absolutely as well as it could be. I keep thinking about the worst outcome of everything too, and freaking myself out about that. Blah, I've handled everything pretty well so far, where's this coming from? By the way, sorry for the lack of posts or updates this past week, guess this kinda suffered from all this too.
In related news, they were supposed to have the kidney transplant eligibility meeting this past Thursday, so we should hear something this week. Please keep me and my family in your prayers as we wait for hopefully some good news.
Also, I asked the social worker this week when I could expect to hear about disability benefits since it had been a while since she said she had the stuff on her stuff. She told me to call Social Security and find out because it had definitely been long enough. I called, and they said they had no record of me filing for disability. I personally didn't, but when she told me she had it all on her desk and she was sending it to them, I took it for granted that she had done it. I don't know how these things work yet, and honestly I wouldn't expect to have any idea. I told the social worker they had nothing, and she told me that she has no idea what was on her desk at that time in that case. To quote Julian "WHAT THE CRAP!?". Isn't that her job? She's supposed to be one of the best people I can go to for help with all of this and she's been totally useless so far. I know being frustrated doesn't help anything, but come on, I can't really help it with that kind of a response. Luckily, I was able to keep it together until I got home, but grrrrrrrrrrrrrrrrrr.
Outside of all of this, my family and I went to Tahoe today. We drove around, had lunch, and found a place to play in the snow. It was pretty fun. It was definitely nice to be able to get out of the house for something besides dialysis. The weather was really nice there, although it was extremely foggy when we came back down into the valley.
Anyway, I'll try to get some more stuff up here about everything this week. If you ever feel like having a chat, feel free to send me a message on here or Facebook, or give me a call, 916-960-9781. Anytime is fine with me.
This past week went by pretty quickly. Physically, I've felt decent, maybe a little tired. However, that may have to do with not sleeping properly also. My numbers are all still "golden" according to the dietitian and others at the clinic, so that's good/encouraging.
Mentally, the past few days have been pretty rough. I have no idea why. Nothing's going on to make me think any differently. I've just been in a funk. I keep worrying about things, even though everyone says everything is going absolutely as well as it could be. I keep thinking about the worst outcome of everything too, and freaking myself out about that. Blah, I've handled everything pretty well so far, where's this coming from? By the way, sorry for the lack of posts or updates this past week, guess this kinda suffered from all this too.
In related news, they were supposed to have the kidney transplant eligibility meeting this past Thursday, so we should hear something this week. Please keep me and my family in your prayers as we wait for hopefully some good news.
Also, I asked the social worker this week when I could expect to hear about disability benefits since it had been a while since she said she had the stuff on her stuff. She told me to call Social Security and find out because it had definitely been long enough. I called, and they said they had no record of me filing for disability. I personally didn't, but when she told me she had it all on her desk and she was sending it to them, I took it for granted that she had done it. I don't know how these things work yet, and honestly I wouldn't expect to have any idea. I told the social worker they had nothing, and she told me that she has no idea what was on her desk at that time in that case. To quote Julian "WHAT THE CRAP!?". Isn't that her job? She's supposed to be one of the best people I can go to for help with all of this and she's been totally useless so far. I know being frustrated doesn't help anything, but come on, I can't really help it with that kind of a response. Luckily, I was able to keep it together until I got home, but grrrrrrrrrrrrrrrrrr.
Outside of all of this, my family and I went to Tahoe today. We drove around, had lunch, and found a place to play in the snow. It was pretty fun. It was definitely nice to be able to get out of the house for something besides dialysis. The weather was really nice there, although it was extremely foggy when we came back down into the valley.
Anyway, I'll try to get some more stuff up here about everything this week. If you ever feel like having a chat, feel free to send me a message on here or Facebook, or give me a call, 916-960-9781. Anytime is fine with me.
More dialysis pictures
Here's a couple more pictures from the dialysis clinic.
This is the standard screen on the dialysis machine. It had just taken my blood pressure, top right. I'll go over most of the other numbers when I make a post about how dialysis works.
This is the artificial kidney itself, the dialyzer. This is what does most of the work.
This is the standard screen on the dialysis machine. It had just taken my blood pressure, top right. I'll go over most of the other numbers when I make a post about how dialysis works.
This is the artificial kidney itself, the dialyzer. This is what does most of the work.
Monday, January 10, 2011
Dialysis Clinic Pictures
This picture gives you the general idea of how the clinic is laid out. There's another 2 rows of chairs like this behind the one on the left as well.
This is taken from my chair today. Kim, a tech, is checking on another patient's machine.
A standard dialysis chair and dialysis machine, the clamp looking thing on the right of the machine is what holds the dialyzer.
This is what is on the right side of the chair when they're ready to set me up. Those are the needles that are used with the tubes that hook up to the longer tubes going to the machine. When the nurse showed me those needles in the hospital, I couldn't believe how big they were, sheesh.
This is the best shot I could do while sitting in the chair and only being able to use one hand for the camera. It gives a basic idea of the setup. The blue scissor looking thing is a clamp used on my shirt to hold the tubes up out of my way so I can read or watch a movie/tv, or use my netbook. You can also see the blood pressure cuff on my left arm.
A close up of my arm during treatment. The tape is there to keep the needles in place. After the needles are placed at the beginning of treatment, I don't feel anything from the process at all besides the blood pressure cuff doing its job every so often.
Sunday, January 9, 2011
September Hospital Stay
A month in the hospital is a long time for anyone, especially when you don't see it coming. I went into the hospital just after 9 pm on August 31, 2010. I was in an ICU room for a few hours, during and directly after receiving a blood transfusion. I was then transferred to my own room, which I would reside in for the next full month, until I was released on October 1st.
It doesn't look too bad at first, but then you stay in the same small room for weeks, and it gets to be a bit much. You can see some of the board games I had in the room to play, and the bottom of the tv. Considering I don't watch tv at all usually, this tv was very helpful. There were a few simple card games and very limited internet access. The best part about the tv however was the movies! There were like 30 movies on there that you could watch for free. I watched every single one of them throughout the month I was there, some even two and three times.
I had a couple of books, and a few magazines to read also. I couldn't read for the longest time though, because after I had such a bad reaction to the first (and following few) dialysis treatments, I couldn't really focus at all for basically the first 2 weeks I was in the hospital.
The first two weeks were pretty scary. Besides the dialysis treatments being so rough, I had to have numerous tests to really figure out what was going on and what could be done, if anything, to fix things. I might list all the kinds of different tests that were done at a later date. I wasn't able to do much more than sit up in bed without being exhausted.
I started improving a little after the first two weeks. I was still really weak, but I could at least think straight somewhat, which was a huge improvement. Things weren't all clear yet, but it was getting there. I had physical therapy every other day, and was able to gradually go from just sitting up in bed, to standing, to walking to the hall, to eventually walking all the way down the halls. In this time, I saw an insane number of doctors and nurses.
What happens when you're feeling better in the hospital but you can't go home? Extreme boredom sets in, that's what. I was laid off from my job in July, and I was 25, so I had aged out of my parents' insurance the previous December. To be able to get a chair at a dialysis clinic, you had to have insurance. There was a crazy mess of red tape and going back and forth setting me up with MediCal, and I wasn't allowed to do dialysis in the hospital as an outpatient. I had to stay in the hospital for an untold amount of time until all of the paperwork went through, I was approved for MediCal, AND they found an open spot at a local dialysis clinic. The first guess of how long it might take was anywhere from a month to 45 days. Oh boy.
By this time, I basically felt fine besides getting tired easily and being a little weak. When I wasn't resting or watching movies, I would play card games with my family, or if it was too early for them to be out of work/school yet, I would just wander the hospital aimlessly, just for something to do.
The hospital food was decent I suppose for hospital food, although I did have to have them change what they served because of my diet a few times. All of the staff, nurses, and doctors were extremely nice and helpful. The nurses repeatedly referred to me as their favorite patient on the hall because I never gave them any trouble, and never really asked for anything besides maybe a cup of ice or some snack pack jello.
Speaking of giving the nurses trouble, patients in the room next to me, and all over the hall would often start randomly yelling at the top of their lungs. Sometimes it was in English, sometimes I had no clue what language it was. Sometimes it would only be for 2 or 3 minutes, in the afternoon. Other times, it would be for hours upon hours, starting at 5 am, and going all day.
Someone would come in and check my blood pressure and temperature every couple hours. I would have bloodwork drawn usually every other day, sometimes every day though. The lab technician would usually come to draw my blood at 6 am. What a wonderful thing to wake up to! I would have to have a various assortment of medicine at each meal too, which was not always the same. On certain dialysis days, I would have to get an EPOtin shot, which helped boost red blood cells so I wouldn't be anemic. I still get those at dialysis, although it's given through the machine instead of a shot.
It definitely wasn't easy going from what I thought was perfectly healthy to being in the hospital for an entire month. It was pretty hard on me at times, especially when I just wanted to go home, or at least get some new scenery. All of the nurses and doctors did their best to make my stay as decent as it could be, and my family was there almost constantly, which couldn't have been easy for them, but it made my day every day, just to have someone there to talk to. I appreciated everyone that visited and called too.
I was released from the hospital October 1st. Of course I couldn't get away without some farewell shots, thrilling! I was so happy just to be able to go for a car ride.
I might have missed some things that I'll think of later, but I'll add them in new posts as I think of them.
It doesn't look too bad at first, but then you stay in the same small room for weeks, and it gets to be a bit much. You can see some of the board games I had in the room to play, and the bottom of the tv. Considering I don't watch tv at all usually, this tv was very helpful. There were a few simple card games and very limited internet access. The best part about the tv however was the movies! There were like 30 movies on there that you could watch for free. I watched every single one of them throughout the month I was there, some even two and three times.
I had a couple of books, and a few magazines to read also. I couldn't read for the longest time though, because after I had such a bad reaction to the first (and following few) dialysis treatments, I couldn't really focus at all for basically the first 2 weeks I was in the hospital.
The first two weeks were pretty scary. Besides the dialysis treatments being so rough, I had to have numerous tests to really figure out what was going on and what could be done, if anything, to fix things. I might list all the kinds of different tests that were done at a later date. I wasn't able to do much more than sit up in bed without being exhausted.
I started improving a little after the first two weeks. I was still really weak, but I could at least think straight somewhat, which was a huge improvement. Things weren't all clear yet, but it was getting there. I had physical therapy every other day, and was able to gradually go from just sitting up in bed, to standing, to walking to the hall, to eventually walking all the way down the halls. In this time, I saw an insane number of doctors and nurses.
What happens when you're feeling better in the hospital but you can't go home? Extreme boredom sets in, that's what. I was laid off from my job in July, and I was 25, so I had aged out of my parents' insurance the previous December. To be able to get a chair at a dialysis clinic, you had to have insurance. There was a crazy mess of red tape and going back and forth setting me up with MediCal, and I wasn't allowed to do dialysis in the hospital as an outpatient. I had to stay in the hospital for an untold amount of time until all of the paperwork went through, I was approved for MediCal, AND they found an open spot at a local dialysis clinic. The first guess of how long it might take was anywhere from a month to 45 days. Oh boy.
By this time, I basically felt fine besides getting tired easily and being a little weak. When I wasn't resting or watching movies, I would play card games with my family, or if it was too early for them to be out of work/school yet, I would just wander the hospital aimlessly, just for something to do.
The hospital food was decent I suppose for hospital food, although I did have to have them change what they served because of my diet a few times. All of the staff, nurses, and doctors were extremely nice and helpful. The nurses repeatedly referred to me as their favorite patient on the hall because I never gave them any trouble, and never really asked for anything besides maybe a cup of ice or some snack pack jello.
Speaking of giving the nurses trouble, patients in the room next to me, and all over the hall would often start randomly yelling at the top of their lungs. Sometimes it was in English, sometimes I had no clue what language it was. Sometimes it would only be for 2 or 3 minutes, in the afternoon. Other times, it would be for hours upon hours, starting at 5 am, and going all day.
Someone would come in and check my blood pressure and temperature every couple hours. I would have bloodwork drawn usually every other day, sometimes every day though. The lab technician would usually come to draw my blood at 6 am. What a wonderful thing to wake up to! I would have to have a various assortment of medicine at each meal too, which was not always the same. On certain dialysis days, I would have to get an EPOtin shot, which helped boost red blood cells so I wouldn't be anemic. I still get those at dialysis, although it's given through the machine instead of a shot.
It definitely wasn't easy going from what I thought was perfectly healthy to being in the hospital for an entire month. It was pretty hard on me at times, especially when I just wanted to go home, or at least get some new scenery. All of the nurses and doctors did their best to make my stay as decent as it could be, and my family was there almost constantly, which couldn't have been easy for them, but it made my day every day, just to have someone there to talk to. I appreciated everyone that visited and called too.
I was released from the hospital October 1st. Of course I couldn't get away without some farewell shots, thrilling! I was so happy just to be able to go for a car ride.
I might have missed some things that I'll think of later, but I'll add them in new posts as I think of them.
Saturday, January 8, 2011
Abbreviations, definitions, and terms
I've said a bunch of different terms throughout the posts I've made so far and not everyone may be familiar with what everything means. In this post, I'm going to try to list some of these terms and their definitions, etc. I might make full posts on some of them in the future to go into more depth. If you still have any questions, just let me know, and I'll try to clear it up.
Dialysis: A process of running a patient's blood through a machine with various filters and chemicals to clean out toxins and unwanted particles that couldn't be cleaned by malfunctioning kidney(s).
Dialyzer: The part of the dialysis machine that does most of the work. The simplest way to explain this would be to call it an artificial kidney. It has a huge number of microscopic semipermeable membranes through which the blood flows. On one side of the dialyzer, there is a chemical solution bath that is used to clean the toxins out. Depending on the patient, the bath can be changed to add in various things that are needed. There are various types of dialysis also.
CKD: Chronic Kidney Disease
ESRD: End Stage Renal Disease
Hemodialysis: Dialysis: Dialysis using a central line catheter or a fistula access to pull the patient's blood through a dialyzer. This is usually a 3 to 4 hour treatment 3 times a week. This is what I use.
Central line catheter: A tube put into the patient's neck/shoulder area or upper chest that goes into the jugular vein close to the heart. It has a port having 2 small tubes sticking out through the skin and has to be cleaned at least once or twice a week. This is very prone to infection. I had this put in the first day I was in the hospital and it was removed in November once my fistula had matured and was working properly. I'll go into more detail on this later.
Fistula: A vein and artery are connected in a person's arm or leg to increase blood flow rate in that particular area. A fistula has to mature for 6 to 8 weeks before it can be used. The veins/arteries by the fistula get bigger and has an intense pressure flow. I'll explain more of this later also.
Graft: Sometimes a patient doesn't have good enough veins and arteries for a fistula, so an artificial graft has to be inserted into their arm or leg, acting as a fistula, but with a synthetic connection. This is more prone to infection as well since it has something that's not natural in the body.
Hemoglobin: An iron containing protein in the red blood cells that transports oxygen from the lungs to the cells of the body and collects carbon dioxide and takes it back to the lungs. My hemoglobin was very low when I first went into the hospital, making me anemic and needing a blood transfusion.
EKG: Electrocardiogram, a test that checks for problems in the electrical activity of the heart and comes out as a line graph on paper.
Davita: The most influential company working in the field of kidney disease, operating many dialysis clinics and other things.
UC Davis Medical Center: A medical division of the University of California, at Davis, the med center is in downtown Sacramento. This is where I did the transplant evaluation and where the transplant procedure will take place if I am eligible and am able to have a transplant.
Urea: A chemical compound produced when the body metabolizes protein. Urea levels can be tested to find kidney problems.
BUN: Blood urea nitrogen test is a measure of the amount of nitrogen in the blood in the form of urea. My BUN was very high at first because of the years of living with one kidney, and the lowering of the BUN was the major reason that caused the disequilibrium problem.
Disequilibrium: An imbalance of chemicals in the brain/body leading to a loss of steadiness, similar to vertigo. Also resulting in an inability to focus thoughts properly.
Phosphorus binder: A medicine in the form of a pill taken before a meal that goes into the bloodstream and latches onto phosphorus particles, allowing them to be taken out of the bloodstream easier.
Renal: dealing with kidneys
Nephrology: dealing with kidneys, a nephrologist is a kidney doctor.
Lidocaine: a numbing cream that I put over my fistula access up to 2 hours before a treatment that numbs the area where I'm stuck with needles.
There's many more but this should probably handle the basics for now.
Dialysis: A process of running a patient's blood through a machine with various filters and chemicals to clean out toxins and unwanted particles that couldn't be cleaned by malfunctioning kidney(s).
Dialyzer: The part of the dialysis machine that does most of the work. The simplest way to explain this would be to call it an artificial kidney. It has a huge number of microscopic semipermeable membranes through which the blood flows. On one side of the dialyzer, there is a chemical solution bath that is used to clean the toxins out. Depending on the patient, the bath can be changed to add in various things that are needed. There are various types of dialysis also.
CKD: Chronic Kidney Disease
ESRD: End Stage Renal Disease
Hemodialysis: Dialysis: Dialysis using a central line catheter or a fistula access to pull the patient's blood through a dialyzer. This is usually a 3 to 4 hour treatment 3 times a week. This is what I use.
Central line catheter: A tube put into the patient's neck/shoulder area or upper chest that goes into the jugular vein close to the heart. It has a port having 2 small tubes sticking out through the skin and has to be cleaned at least once or twice a week. This is very prone to infection. I had this put in the first day I was in the hospital and it was removed in November once my fistula had matured and was working properly. I'll go into more detail on this later.
Fistula: A vein and artery are connected in a person's arm or leg to increase blood flow rate in that particular area. A fistula has to mature for 6 to 8 weeks before it can be used. The veins/arteries by the fistula get bigger and has an intense pressure flow. I'll explain more of this later also.
Graft: Sometimes a patient doesn't have good enough veins and arteries for a fistula, so an artificial graft has to be inserted into their arm or leg, acting as a fistula, but with a synthetic connection. This is more prone to infection as well since it has something that's not natural in the body.
Hemoglobin: An iron containing protein in the red blood cells that transports oxygen from the lungs to the cells of the body and collects carbon dioxide and takes it back to the lungs. My hemoglobin was very low when I first went into the hospital, making me anemic and needing a blood transfusion.
EKG: Electrocardiogram, a test that checks for problems in the electrical activity of the heart and comes out as a line graph on paper.
Davita: The most influential company working in the field of kidney disease, operating many dialysis clinics and other things.
UC Davis Medical Center: A medical division of the University of California, at Davis, the med center is in downtown Sacramento. This is where I did the transplant evaluation and where the transplant procedure will take place if I am eligible and am able to have a transplant.
Urea: A chemical compound produced when the body metabolizes protein. Urea levels can be tested to find kidney problems.
BUN: Blood urea nitrogen test is a measure of the amount of nitrogen in the blood in the form of urea. My BUN was very high at first because of the years of living with one kidney, and the lowering of the BUN was the major reason that caused the disequilibrium problem.
Disequilibrium: An imbalance of chemicals in the brain/body leading to a loss of steadiness, similar to vertigo. Also resulting in an inability to focus thoughts properly.
Phosphorus binder: A medicine in the form of a pill taken before a meal that goes into the bloodstream and latches onto phosphorus particles, allowing them to be taken out of the bloodstream easier.
Renal: dealing with kidneys
Nephrology: dealing with kidneys, a nephrologist is a kidney doctor.
Lidocaine: a numbing cream that I put over my fistula access up to 2 hours before a treatment that numbs the area where I'm stuck with needles.
There's many more but this should probably handle the basics for now.
A normal day on hemodialysis
My regular schedule is a 3 PM PST on time and roughly a 6 PM PST finishing time every Monday, Wednesday, Friday. I need to get there around 2:40 to make sure I'm hooked up and ready to go by 3.
Two hours to an hour and a half before hand, I put lidocaine numbing cream over my fistula access in my right arm so I won't have to feel the needles that badly. I drive myself there and walk into a small lobby with my Davita (The biggest/best kidney care and dialysis company) bag with my blanket, since it's usually cold in there, along with whatever entertainment I've chosen for that day. There's an assortment of chairs, a standard receptionist window, a tv, landline phone, and an electronically locked door that leads to the main room. I take a seat, and wait until someone comes out into the lobby to tell me they're ready for me.
Inside, there's a large room with something like 24 reclining chairs with dialysis machines beside each one. I put my things down for a moment while I stand on a walk on scale to check my weight so they can know what to adjust on the machines. I grab my stuff, walk over to whichever chair they tell me I'll be in for today treatment. Depending on what form of entertainment I chose to bring that day, I plug in the charger for the netbook or dvd player if I'm using those. The tech that is working to set me up puts a blood pressure cuff on my left arm. (Since the fistula is in the right arm, no blood pressure cuff or blood work can be done on that arm) Standing and sitting blood pressure is taken. There's a short discussion on whether to take off fluid or not. Most of the time, I have no fluid gain at all, which is good.
The tech wipes off the lidocaine cream, and prepares their gauze and such. I always look away at this point because no matter how many times I go, I just don't like needles lol. I have to get poked twice, one for the venous (vein) and one for the arterial (artery). I'll explain more in depth how all of this works in a later post. Sometimes I can feel the needles, sometimes I can't. I was sooooooooooooooo nervous the first time they were going to use the fistula. While I was in the hospital, one of the nurses that was running the dialysis machine showed me the needles used when using a fistula. (I was using a central line catheter while the fistula matured) Those things looked HUGE! It was so scary. A RN usually checks my lungs and heart, as well as whether I have fluid on my legs, while the tech is setting up. After inserting the needles, or cannulating as the medical term, tape is placed over them to make sure they don't come out. 2 small tubes are hooked up from the dialysis machine to the ports on the outer ends of the needles. One tube is where my blood flows out of my body and into the machine, the other is where the cleaned blood flows back into my arm. Besides the needles, I don't feel a thing during the entire process. It doesn't hurt or anything at all. The tech or nurse starts the machine and treatment begins.
I spend the next three hours however I chose, keeping my right arm up on the side of the chair. The blood pressure cuff checks my blood pressure at set times throughout treatment. Nurses and techs make various checks throughout the time.
At the end of the 3 hours, the machine starts all sorts of beeping, letting them know it's finished. The tubes are unhooked, tape removed, and the tech removes the needle, covering the insertion points with a small piece of gauze and tape. I apply pressure over both places for 10 to 15 minutes, making sure it's not going to bleed. This is probably the most boring part of the entire process since I have to sit there holding the access.
After the 10 to 15 minutes, someone puts a few more pieces of tape over the access. I pack my things up, check my weight on the walk on scale again, let one of the techs know what the weight is, and I'm good to go.
I know of a bunch of this is still very confusing without being able to see it, or without knowing what some of these words mean. I'll try to clarify some things in a post soon and also see if I can get some pictures up.
Two hours to an hour and a half before hand, I put lidocaine numbing cream over my fistula access in my right arm so I won't have to feel the needles that badly. I drive myself there and walk into a small lobby with my Davita (The biggest/best kidney care and dialysis company) bag with my blanket, since it's usually cold in there, along with whatever entertainment I've chosen for that day. There's an assortment of chairs, a standard receptionist window, a tv, landline phone, and an electronically locked door that leads to the main room. I take a seat, and wait until someone comes out into the lobby to tell me they're ready for me.
Inside, there's a large room with something like 24 reclining chairs with dialysis machines beside each one. I put my things down for a moment while I stand on a walk on scale to check my weight so they can know what to adjust on the machines. I grab my stuff, walk over to whichever chair they tell me I'll be in for today treatment. Depending on what form of entertainment I chose to bring that day, I plug in the charger for the netbook or dvd player if I'm using those. The tech that is working to set me up puts a blood pressure cuff on my left arm. (Since the fistula is in the right arm, no blood pressure cuff or blood work can be done on that arm) Standing and sitting blood pressure is taken. There's a short discussion on whether to take off fluid or not. Most of the time, I have no fluid gain at all, which is good.
The tech wipes off the lidocaine cream, and prepares their gauze and such. I always look away at this point because no matter how many times I go, I just don't like needles lol. I have to get poked twice, one for the venous (vein) and one for the arterial (artery). I'll explain more in depth how all of this works in a later post. Sometimes I can feel the needles, sometimes I can't. I was sooooooooooooooo nervous the first time they were going to use the fistula. While I was in the hospital, one of the nurses that was running the dialysis machine showed me the needles used when using a fistula. (I was using a central line catheter while the fistula matured) Those things looked HUGE! It was so scary. A RN usually checks my lungs and heart, as well as whether I have fluid on my legs, while the tech is setting up. After inserting the needles, or cannulating as the medical term, tape is placed over them to make sure they don't come out. 2 small tubes are hooked up from the dialysis machine to the ports on the outer ends of the needles. One tube is where my blood flows out of my body and into the machine, the other is where the cleaned blood flows back into my arm. Besides the needles, I don't feel a thing during the entire process. It doesn't hurt or anything at all. The tech or nurse starts the machine and treatment begins.
I spend the next three hours however I chose, keeping my right arm up on the side of the chair. The blood pressure cuff checks my blood pressure at set times throughout treatment. Nurses and techs make various checks throughout the time.
At the end of the 3 hours, the machine starts all sorts of beeping, letting them know it's finished. The tubes are unhooked, tape removed, and the tech removes the needle, covering the insertion points with a small piece of gauze and tape. I apply pressure over both places for 10 to 15 minutes, making sure it's not going to bleed. This is probably the most boring part of the entire process since I have to sit there holding the access.
After the 10 to 15 minutes, someone puts a few more pieces of tape over the access. I pack my things up, check my weight on the walk on scale again, let one of the techs know what the weight is, and I'm good to go.
I know of a bunch of this is still very confusing without being able to see it, or without knowing what some of these words mean. I'll try to clarify some things in a post soon and also see if I can get some pictures up.
What to do, what to do...
3 hours, every Monday, Wednesday, Friday. 9 hours a week sitting in a chair, with my right arm all but unusable.
What to do, what to do?
Probably 75% or more of the patients there are sleeping during their treatment. When I was first there, I couldn't sleep whatsoever. I'm getting better with that now, but it's still not easy to sleep there unless I'm fully exhausted.
Sometimes I read whatever book currently is holding my interest. It's a bit difficult sometimes to get completely involved in a good book while on treatment however because there's always all kinds of alarms going off, or nurses and techs checking there, etc.
Many days, I'll bring a portable dvd player and set up a movie or tv show to watch to occupy my time. It's easier to deal with interruptions with that than a book because you can just hit pause. I never thought I'd be wanting to watch more things, considering I don't watch television at all.
Most of the time I'll waste time looking around the internet on my friend's netbook that he let me borrow or on my phone. I would play a game that I usually play but there's some port issues with the router that I can't fix.
Next post, I'll describe the process I go through each treatment.
What to do, what to do?
Probably 75% or more of the patients there are sleeping during their treatment. When I was first there, I couldn't sleep whatsoever. I'm getting better with that now, but it's still not easy to sleep there unless I'm fully exhausted.
Sometimes I read whatever book currently is holding my interest. It's a bit difficult sometimes to get completely involved in a good book while on treatment however because there's always all kinds of alarms going off, or nurses and techs checking there, etc.
Many days, I'll bring a portable dvd player and set up a movie or tv show to watch to occupy my time. It's easier to deal with interruptions with that than a book because you can just hit pause. I never thought I'd be wanting to watch more things, considering I don't watch television at all.
Most of the time I'll waste time looking around the internet on my friend's netbook that he let me borrow or on my phone. I would play a game that I usually play but there's some port issues with the router that I can't fix.
Next post, I'll describe the process I go through each treatment.
Friday, January 7, 2011
Doctors, nurses, and techs
I've seen more doctors, nurses, techs, and general health related professionals in the past few months than I've seen in yeaaaaaaaaaaaaars.
I saw a few doctors and an uncountable number of nurses in the hospital, but since then, I've been followed by one main nephrologist. A nephrologist is a doctor focused on the kidneys. My nephrologist sees me at the dialysis clinic usually around once a week. Since there's nothing poking and prodding can do, it often feels kind of strange to have him usually just look at my labwork and then say hello and ask how I'm feeling and walk off. He seems to know his stuff however, even if he might be a little kooky.
The funny story I mentioned earlier was dealing with this doctor. When I was in the hospital, he saw me once, and when he was walking out, he noticed my aunt sitting in a chair in the corner of the hospital room, reading a book. He proceeds to ask her if she works at the hospital and is on break. My aunt was not wearing scrubs or anything resembling the sort, and was reading a book. How he came to the conclusion she worked there was beyond me. It was quite hilarious though, especially when I was at the dialysis clinic the first day and I saw him walk into the room. I had to restrain myself from laughing outloud when I saw him talking to other patients because I knew that he was going to be my doctor. Since then though, he seems to be really on top of things, and I've been doing well, so I have only good things to say about him.
There is usually one to two registered nurses on duty at the dialysis clinic, and 4 to 8 techs, depending on the time and how many patients are present. Everyone that works there is extremely nice and helpful. They will go out of their way to help you and make sure you feel your best. I think the best thing is that they'll try their best to treat you like you're a real person and have real conversations with you, and try to be friends even, rather than keeping everything about the medical situation. They, in addition to my great family, really help me keep a positive outlook through everything.
Biba, Marlena, Irena, and Martha are all the RNs I think. I could be wrong. They don't go around with "RN" or "Tech" written on their gear so I can't be sure who is what, but it doesn't really matter.
Andi, Mel, Geneva, Beau, Marie, Sabu, Raychell, Celisse, Kim, Crissy, Andrea, Robert, Kamni, Mike, and probably a few others, are all awesome. Thank you all for doing what you do for all of us patients, even if it is your job.
I have a dietitian following me at the clinic as well. She sees me every Wednesday. The first Wednesday I was there, we had a very long chat about things I can/cannot have, what's good for a renal (Renal is medical terminology for kidney) diet, my fluids, etc. Nowadays, she brings me the results of my most recent labwork, asks how I'm doing, and if I have any questions for her. My labwork has been basically perfect every week so far, which is VERY encouraging. That certainly helps keep my head up. The dietitian, Michelle, is also extremely nice and helpful, and always ready to laugh about my most recent question about the renal diet, or to tell me that I can relax on some foods a little.
I'll try to get a more thorough post up about how things are at the clinic soon.
I saw a few doctors and an uncountable number of nurses in the hospital, but since then, I've been followed by one main nephrologist. A nephrologist is a doctor focused on the kidneys. My nephrologist sees me at the dialysis clinic usually around once a week. Since there's nothing poking and prodding can do, it often feels kind of strange to have him usually just look at my labwork and then say hello and ask how I'm feeling and walk off. He seems to know his stuff however, even if he might be a little kooky.
The funny story I mentioned earlier was dealing with this doctor. When I was in the hospital, he saw me once, and when he was walking out, he noticed my aunt sitting in a chair in the corner of the hospital room, reading a book. He proceeds to ask her if she works at the hospital and is on break. My aunt was not wearing scrubs or anything resembling the sort, and was reading a book. How he came to the conclusion she worked there was beyond me. It was quite hilarious though, especially when I was at the dialysis clinic the first day and I saw him walk into the room. I had to restrain myself from laughing outloud when I saw him talking to other patients because I knew that he was going to be my doctor. Since then though, he seems to be really on top of things, and I've been doing well, so I have only good things to say about him.
There is usually one to two registered nurses on duty at the dialysis clinic, and 4 to 8 techs, depending on the time and how many patients are present. Everyone that works there is extremely nice and helpful. They will go out of their way to help you and make sure you feel your best. I think the best thing is that they'll try their best to treat you like you're a real person and have real conversations with you, and try to be friends even, rather than keeping everything about the medical situation. They, in addition to my great family, really help me keep a positive outlook through everything.
Biba, Marlena, Irena, and Martha are all the RNs I think. I could be wrong. They don't go around with "RN" or "Tech" written on their gear so I can't be sure who is what, but it doesn't really matter.
Andi, Mel, Geneva, Beau, Marie, Sabu, Raychell, Celisse, Kim, Crissy, Andrea, Robert, Kamni, Mike, and probably a few others, are all awesome. Thank you all for doing what you do for all of us patients, even if it is your job.
I have a dietitian following me at the clinic as well. She sees me every Wednesday. The first Wednesday I was there, we had a very long chat about things I can/cannot have, what's good for a renal (Renal is medical terminology for kidney) diet, my fluids, etc. Nowadays, she brings me the results of my most recent labwork, asks how I'm doing, and if I have any questions for her. My labwork has been basically perfect every week so far, which is VERY encouraging. That certainly helps keep my head up. The dietitian, Michelle, is also extremely nice and helpful, and always ready to laugh about my most recent question about the renal diet, or to tell me that I can relax on some foods a little.
I'll try to get a more thorough post up about how things are at the clinic soon.
Currently
Physically, currently, I'm feeling pretty well. I'm never really in pain thankfully, and haven't been this entire time, if you don't count out getting stuck with needles 3 times a week. It's taken a long time, but I'm gradually regaining my energy and stamina back. I still get tired more easily than I used to but it's getting better every day. I take 2 blood pressure medicines, 1 once a day and 1 twice a day, and one phosphorus binder, which I take as 2 pills before every meal and 1 before a big snack. Besides my upper right arm looking kinda monstrous when I pull up the sleeve, you can't really tell there's anything going on with me. That can be a good and a bad thing, because sometimes you do want people to be more knowledgeable about the situation. Of course I have good days and some off days, but most days now I'm feeling fine.
Mentally, I'm doing okay I suppose. Good and bad days. I think I've handled everything pretty well so far. I've looked at it as if I've known for a long time that I might eventually have to be on dialysis. All the techs and nurses at the dialysis clinic, and all my doctors, have all said that I should have no problem getting a transplant, and therefore getting of dialysis and back to a normal life. That helps out with my thought process too, although I would be lying if I said I was never nervous about the whole situation. I'll be able to relax about it more when I find out the eligibility results. My family has been very supportive, which has helped tremendously. My friends don't really understand I guess so they've been kinda quiet about it all, which I guess is understandable, but you guess shouldn't be intimidated by the whole thing. I don't mind talking about it all and honestly, I could really use some people besides my immediate family to talk to. They're wonderful, but sometimes you just want to be able to talk to someone else about what's going on. There's no one I can really relate to at my dialysis clinic so I kinda have to rely on you guys to keep me up. (I'll make a post later describing the dialysis clinic too)
No real major side effects from the medicines or dialysis that I've noticed. Well, besides maybe it being harder to make myself go to sleep, which isn't really any different than before anyway, lol.
Mentally, I'm doing okay I suppose. Good and bad days. I think I've handled everything pretty well so far. I've looked at it as if I've known for a long time that I might eventually have to be on dialysis. All the techs and nurses at the dialysis clinic, and all my doctors, have all said that I should have no problem getting a transplant, and therefore getting of dialysis and back to a normal life. That helps out with my thought process too, although I would be lying if I said I was never nervous about the whole situation. I'll be able to relax about it more when I find out the eligibility results. My family has been very supportive, which has helped tremendously. My friends don't really understand I guess so they've been kinda quiet about it all, which I guess is understandable, but you guess shouldn't be intimidated by the whole thing. I don't mind talking about it all and honestly, I could really use some people besides my immediate family to talk to. They're wonderful, but sometimes you just want to be able to talk to someone else about what's going on. There's no one I can really relate to at my dialysis clinic so I kinda have to rely on you guys to keep me up. (I'll make a post later describing the dialysis clinic too)
No real major side effects from the medicines or dialysis that I've noticed. Well, besides maybe it being harder to make myself go to sleep, which isn't really any different than before anyway, lol.
History
Since I'm starting a blog about dialysis, kidney disease, and other such things, it would only make sense to give some detail as to my history with kidney disease, how I first started dialysis, and what's going on now.
I was born with a posterior urethral valve which led to a bunch of other problems, crazy medical words no one besides the doctors can really understand. (Note: if you really want to know the specifics, send me a private message and I'll let you know) When I was 18 months old, my right kidney was removed. I was in and out of the hospital for a few years when I was little. When I got a little older, everything calmed down a bit, and I was able to be a normal kid. I had a reaction to a decongestant when I was 19 but it worked out with just some physical therapy and some tests. I moved across country with my family the next year, everything was fine, I appeared to be in perfect health for the next 5 years, no symptoms or anything.
On the night of August 31, 2010, I was at a restaurant with my family, and I wasn't feeling well, but I didn't think much of it. I got up to go to my car to go home and I promptly fell over. I didn't pass out but it sure wasn't fun. EMT's came with an ambulance and fire truck and took me to the hospital. I had a central line catheter put in in the morning for immediate dialysis. I had a fistula put in my right arm later that week for later use, but it had to mature before it could be used.
The immediate problem was that my hemoglobin was 5.4 and I was very anemic. My only kidney wasn't really working properly any longer. A bazillion different tests were run throughout the next two weeks, trying to find out what all was going on.
I had a severe reaction to the first 3 dialysis treatments. It was called disequilibrium syndrome, and it just might have been the worst thing I can remember ever going through. Dialysis is taking your blood out of your body and taking the toxins out, but some of these toxins had been in my body for years. Having this buildup (High BUN, among other CKD terms I'll let you know if you really want to), when dialysis started to remove it, it created an imbalance in my body and in my brain. This basically acted like a vacuum, with my brain being like "Whoa, what do I do now that all of that is gone?" and trying to immediately adjust to the lack of it. What I felt though was terrible. I couldn't focus or think straight at all. I tried to grab the rail of the bed with one hand and missed, then I tried to grab that hand with my other and missed! Whenever I tried focusing on something, I would finally be able to grasp the thought, and then my mind would totally switch gears to something else, leaving me to spend a long while trying to catch up again. Of course, the best solution to deal with this problem would be sleep right? Yes, but I couldn't sleep. I would lie there for what seemed like forever with my eyes closed, then just pop them open, wide awake as I was the fist minute. I was told this situation would only happen once, MAYBE twice, but not likely at all. I had it happen the first 3 times, with a slight effect the 4 time, and dizzyness with the 5th and 6th treatments. The dialysis nurses told me they had never heard of such prolonged effects of this. Thank God, it finally went away. I did not handle that happening very well at all, having a panic attack once or twice, among other things.
I got used to the dialysis treatments, and gradually leveled out. I was released from the hospital October 1st, after a full month in the hospital. It would be a long time before I began to regain my energy and stamina back. (Still working on this actually, but it's going much better now) I started dialysis at a local Davita clinic the Monday after I was released. I see the nephrologist (kidney doctor) at the clinic about once a week, although all he really does is look at my charts. Funny story about him at a later date. I've been on dialysis at the clinic for 3 hours every Monday, Wednesday, Friday since then. I'll go over my feelings about the clinic and the people there in another post.
At the end of October, they were able to begin using the fistula in my right arm. (I'll set up another post describing this and some other basic things soon) The fistula works much better than the central catheter.
December 2nd, I went to UC Davis Medical Center in downtown Sacramento for a kidney transplant evaluation. We arrived around 10AM, filled out some forms, then sat in a room with a few other people for a short class describing the basics of a transplant. Basically going over a packet we received in the mail about it earlier. After the class, a doctor checked me over, and asked a long series of relevant questions. He seemed to hit every logical topic very concisely, while still being nice. Following the doctor, I had a meeting with a social worker, going over all kinds of aspects of my life, and basically evaluating my mental state, opposed to the physical. After lunch, I had a chest x-ray, an EKG, and bloodwork done. By that time, it was approaching evening, but we were finished. A long day, but hopefully it will lead to good news. We were told we should find out my eligibility within 10 to 12 days.
Today is January 7, 2011, and I still haven't heard. I called the transplant coordinator a few days ago and he told me they still needed my medical records from the hospital. The person at the records office said there was no request for my records. I picked them up from the hospital and personally hand delivered them. I know the right people have them now, and while I was there giving it to them, I was able to talk to the coordinator in person. He said that everything I did during the evaluation day camp back good, and that he'll go over the records, and should be able to have the meeting to determine eligibility next Thursday. Hopefully we'll find out something shortly afterward.
I was born with a posterior urethral valve which led to a bunch of other problems, crazy medical words no one besides the doctors can really understand. (Note: if you really want to know the specifics, send me a private message and I'll let you know) When I was 18 months old, my right kidney was removed. I was in and out of the hospital for a few years when I was little. When I got a little older, everything calmed down a bit, and I was able to be a normal kid. I had a reaction to a decongestant when I was 19 but it worked out with just some physical therapy and some tests. I moved across country with my family the next year, everything was fine, I appeared to be in perfect health for the next 5 years, no symptoms or anything.
On the night of August 31, 2010, I was at a restaurant with my family, and I wasn't feeling well, but I didn't think much of it. I got up to go to my car to go home and I promptly fell over. I didn't pass out but it sure wasn't fun. EMT's came with an ambulance and fire truck and took me to the hospital. I had a central line catheter put in in the morning for immediate dialysis. I had a fistula put in my right arm later that week for later use, but it had to mature before it could be used.
The immediate problem was that my hemoglobin was 5.4 and I was very anemic. My only kidney wasn't really working properly any longer. A bazillion different tests were run throughout the next two weeks, trying to find out what all was going on.
I had a severe reaction to the first 3 dialysis treatments. It was called disequilibrium syndrome, and it just might have been the worst thing I can remember ever going through. Dialysis is taking your blood out of your body and taking the toxins out, but some of these toxins had been in my body for years. Having this buildup (High BUN, among other CKD terms I'll let you know if you really want to), when dialysis started to remove it, it created an imbalance in my body and in my brain. This basically acted like a vacuum, with my brain being like "Whoa, what do I do now that all of that is gone?" and trying to immediately adjust to the lack of it. What I felt though was terrible. I couldn't focus or think straight at all. I tried to grab the rail of the bed with one hand and missed, then I tried to grab that hand with my other and missed! Whenever I tried focusing on something, I would finally be able to grasp the thought, and then my mind would totally switch gears to something else, leaving me to spend a long while trying to catch up again. Of course, the best solution to deal with this problem would be sleep right? Yes, but I couldn't sleep. I would lie there for what seemed like forever with my eyes closed, then just pop them open, wide awake as I was the fist minute. I was told this situation would only happen once, MAYBE twice, but not likely at all. I had it happen the first 3 times, with a slight effect the 4 time, and dizzyness with the 5th and 6th treatments. The dialysis nurses told me they had never heard of such prolonged effects of this. Thank God, it finally went away. I did not handle that happening very well at all, having a panic attack once or twice, among other things.
I got used to the dialysis treatments, and gradually leveled out. I was released from the hospital October 1st, after a full month in the hospital. It would be a long time before I began to regain my energy and stamina back. (Still working on this actually, but it's going much better now) I started dialysis at a local Davita clinic the Monday after I was released. I see the nephrologist (kidney doctor) at the clinic about once a week, although all he really does is look at my charts. Funny story about him at a later date. I've been on dialysis at the clinic for 3 hours every Monday, Wednesday, Friday since then. I'll go over my feelings about the clinic and the people there in another post.
At the end of October, they were able to begin using the fistula in my right arm. (I'll set up another post describing this and some other basic things soon) The fistula works much better than the central catheter.
December 2nd, I went to UC Davis Medical Center in downtown Sacramento for a kidney transplant evaluation. We arrived around 10AM, filled out some forms, then sat in a room with a few other people for a short class describing the basics of a transplant. Basically going over a packet we received in the mail about it earlier. After the class, a doctor checked me over, and asked a long series of relevant questions. He seemed to hit every logical topic very concisely, while still being nice. Following the doctor, I had a meeting with a social worker, going over all kinds of aspects of my life, and basically evaluating my mental state, opposed to the physical. After lunch, I had a chest x-ray, an EKG, and bloodwork done. By that time, it was approaching evening, but we were finished. A long day, but hopefully it will lead to good news. We were told we should find out my eligibility within 10 to 12 days.
Today is January 7, 2011, and I still haven't heard. I called the transplant coordinator a few days ago and he told me they still needed my medical records from the hospital. The person at the records office said there was no request for my records. I picked them up from the hospital and personally hand delivered them. I know the right people have them now, and while I was there giving it to them, I was able to talk to the coordinator in person. He said that everything I did during the evaluation day camp back good, and that he'll go over the records, and should be able to have the meeting to determine eligibility next Thursday. Hopefully we'll find out something shortly afterward.
Starting the blog
Hey, I'm Christian, I'm 26, and as of September 1, 2010, I'm a dialysis patient. Sometimes I need to jot some thoughts and feelings down or a place to keep some news posted, and I'm going to use this blog for that, and other related things.
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