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!
Subscribe to:
Posts (Atom)