Pictures

This is my original fistula. The actual fistula place itself is on the inner side of my elbow area. This goes all the way up into my shoulder. That's just from having great blood flow through the fistula. My arm looks pretty messed up to say the least. Hulk smash!

This is where the new fistula was created. Hopefully it doesn't do the same as the first one.

I haven't put up any pictures dealing with any of this in a very long time. Here you go. Wahoo.

Long awaited update

I know I said I'd try to update this more and I completely failed at doing that. Oops. I'm going to try to make up for that with a major update right now.

The past two weeks or so have been incredibly stressful.  I've had 4 or 5 doctor appointments and a surgery.  Back in December, I was told that I needed two tests done before I could be put back on active status for a transplant.  I had both of these tests in the past two weeks.

The first one came out fine without any issues whatsoever.  The second one was the one I was very worried about.  After a dreadful couple of hours, I found out there were a few minor issues, but nothing to worry about at the moment. Everything overall seemed okay.  The doctor said that he sent a message to the transplant center giving his okay.  That's those two issues/worries out of the way.

This Tuesday I had a new fistula put in my arm because the one I've had is actually too strong.  The flow rate of the blood through the original fistula is something like 8 times what it should be.  The doctor said the new fistula has to mature for 6 weeks or so before I can start using it for dialysis. If everything is fine with it through dialysis, then he will take out the original fistula. Woohoo.

But wait, there's more!

I was called by the coordinator of the transplant program on Thursday.  He said that everything was clear for me to be put back on active status on the transplant list.  He said that a living donor, especially one closely related, would be much better than any from the list, so we should go ahead with our plan but that he would keep me on the list just in case something came up between now and summer. 

This means that basically everything is good to go to have the transplant surgery this summer, just need to schedule it.  Oh my.

Soooooooo.......

Sometime late last Wednesday I came home from dialysis and saw that Parker was home. He had news that the results from his day long series of tests had come in and he had heard from the person in charge of the living donor side of things. This was interesting timing as I had a checkup scheduled the next day with UCD Med Center.

They had found a very small, almost invisible blip just above one of his kidneys on one of the scans and wanted to do a MRI on it to check it out.  They were 99% sure it was nothing and would not even have found it if they hadn't been doing tests for donation. 

As long as the MRI turned out ok, everything would move forward very quickly.  There would be a 4 hour Pre-Op day on the day after Christmas, which is also my birthday.  Parker and I would be talking to doctors, having various tests done, talking to the anesthesiologist, and all kinds of other things.  Not exactly what I had originally planned for my birthday, but it would work. The transplant surgery itself would be on January 8th.

Needless to say, I was excited, but extremely nervous.  I let dialysis know but I held off from posting about it here or on Facebook in case something came up on the MRI. I started going about the other things that would add stress to the situation, rescheduling holiday dialysis days around the Pre-Op, figuring out how to cancel my classes for Spring semester, etc. 

Today, well I guess yesterday now, I was called by the coordinator of the transplant program.  He had talked to the doctor I saw last Thursday, presented my case before the jury for the final go-ahead for the surgery.  They were concerned about something from the doctor and want to have me see a doctor for a test.  There's no timetable for when I could be able to see this doctor so the surgery is being postponed. It's most likely going to be happening in the summer now, given that the test comes out ok. 

Not exactly the relaxing first week of Christmas break that I was expecting, and today's news is pretty disappointing.  We did find out that Parker is fine though, there was nothing on his MRI. 

I guess it's just back to things as normal, or as close to normal as things can be for me right now.  At least I'll be able to get through this semester of school I guess.

Oh boy.

I haven't posted an update in a bit, oops. School's pretty busy this semester, and along with dialysis, that sets up for a strange schedule of free time. School is going well so far though. My fistula got even bigger post-surgery but it's not all branching out anymore, so that's good.  My arm hasn't been bothering me whatsoever since I got the staples out.

Possible big news today. My brother, Parker, recently decided that he wanted to see if he was eligible to be a kidney donor. He's been really gung ho about it since deciding to look into it and has met with the UC Davis Med Center people, taken a few tests, etc. Today, he texted me that he was called by one of the people and she told him that he passed the compatibility test. That's pretty huge. That was the major obstacle that might have stopped it from going through. Parker still has more tests and such to take, but it's looking like it might be possible now. I don't even know how I feel or what I think about it all. It's a bunch to take in. It's exciting though, hopeful.

Not so pretty

I had the staples taken out of my arm yesterday.  It's feeling much better, although still not back to normal.  The incision is certainly not something nice to look at, but I guess it could be worse.  While I was in the office, after getting the staples out, one of the nurses did an ultrasound on the rest of my arm to check out the other veins and such.  There wasn't a followup appointment scheduled so I suppose it's just wait and see time now to see what the doctor wants to do in terms of a new fistula.  I agree with the thoughts of the techs at dialysis in that, if it's still working fine without any problems, don't mess with it.  I'd rather not have the rest of my arm all crazy. 

To sum it up: al;fl;kajsjd;lkfakj;lsdfjkl;asd;flkjajkl;sefj;aisefjask;lef;jklae;lkj

Sooooooooooooooo... the past week and a half has been pretty rough. It could have been much worse, pain wise, but overall, it hasn't been pleasant.  This post will probably be scatterbrained as I'm thinking of a million things at once. 

The pain medicine bothered my head for quite a while.  It stopped doing that after a few days though. My arm was hurting a great deal for a few days. I haven't been able to move it much either. Good news with those last two topics, I didn't have to take any of the pain medicine today, my arm barely hurt at all. That was a very welcome change.  Hopefully I won't have to take it any longer and I can get it out of my system quickly and go back to feeling as normal as I get to feel these days.

This past Monday was my post-surgery checkup.  The crazy doctor didn't even take off the bandage to look at the incision.  He poked my arm a couple times.  He then mentioned something  that I had said earlier I really would not like to happen.  The doctor said that since the fistula is getting so large in my upper arm because I have such good blood flow, we should probably look into setting up a fistula in my forearm, a little bit above my wrist.  He said that fistulas in that area usually don't grow large like ones in the upper arm.  He would put the fistula in and let it mature for a few weeks before using it, then if it worked properly, he would take out the original one.  I don't really like the idea of having to get another fistula but if it means that my arm would be a manageable size again, would be safe, and not have any issues, I suppose I'm for it.  I'd rather just have a transplant that works properly so I can be fully healthy again and get past all of this.

Most days I can handle everything well.  I don't put up a front or pretend or anything like that. I usually just deal with things fine.  Some days though, especially late at night since dialysis makes my insomnia worse, I just get so frustrated.  I can't do anything to make any of it any better.  I've always taken mostly good care of myself.  I don't smoke, I don't drink, I eat relatively well.  I follow my renal diet closely now.  If there was anything I could do to improve my condition I would be all over it.  I can't exercise to get better or anything.  I just have to deal with it. It's very aggravating.  The techs and nurses at the dialysis clinic are great and I'm blessed to have gotten such a great crew but I don't want to be there.  I mean, I'm thankful it keeps me alive and I'm usually able to go out and do things, but not having any energy half the time is really annoying, so is having to schedule everything around treatment 4 hours 3 times a week, not being able to travel, not to mention going to the clinic in general is just depressing having to see all the elderly people that don't even try to take care of themselves.  Don't get me wrong, I'm very grateful to be alive, to have the technology to be able to have dialysis, to have such great techs, nurses, and doctors, and to have such a wonderful family supporting me and helping me with everything.  I think it's ok if I bitch a little bit to get some frustration out.  Sorry you had to read all that. 

Blah.  Whatever though.  I'll get through all this mess.  None of this crap can hold me back.  It'll just be more interesting stories to tell later.  Thanks to everyone for your prayers and support, keep em coming.  Hopefully I'll be getting a transplant one day real soon that works out and I'm able to put all this behind me. Yeah, that transplant will be real nice.

Ow, ow, ow.

It's Friday, my fistula revision surgery was midday Tuesday.  My head is feeling better, I'm not as woozy anymore, although I am still getting a little dizzy.  My arm is hurting like crazy though.  Dialysis is working fine.  There have been no issues related to the procedure with that, so that's good.  I was able to look at the incision when the nurse at dialysis changed the bandage.  It's really scary looking.  The vascular surgeon is really good at what he does, but definitely not so good at making it look decent afterwards. I'll have another big scar to go along with the one I already have from the original fistula surgery.  At the moment, there  are 7 very large staples holding the incision together as it heals. Certainly not a pretty sight.  I have a checkup with the doctor Monday morning.  Let's hope my arm starts feeling a bit better by then.