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.
Tuesday, April 26, 2011
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!
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