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!
Thursday, March 24, 2011
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.
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