Unofficially official

The test results are in and we are clear.  The transplant has been scheduled for Monday August 28.  Clay’s coordinator will report to the committee on Tuesday and then it will be final.

Its relieving to have a date.  Scary and exciting to think it is only 3 weeks away.  Think back 26 days, it’s not long at all.  It was just 26 days ago that Clay came up to Indy for his day at IU.

For anyone looking at coming to Indy, the hospital has arrangements with surrounding hotels for reduced rates and shuttles to the hospital.  We should have info on that next week.  It is probably the same info Clay was given when he came up for his day of testing.

No news is not good news

A week ago Clay’s coordinator presented his case to the board for final approval.  Everything is a go, except they decide they want him to take another nicotine and drug test.  He gave up smoking completely a couple months ago to become my donor.  I guess they want to double check.  Well, he did the screen last week and we haven’t heard anything from the transplant team.  We were hoping to get results and a transplant date last week.  Knowing that they have a weekly meeting on Tuesdays to discuss, I figured they wouldn’t make a decision until today’s meeting.  I talked to my coordinator and she agreed, but she is kept separate from his account for all the hipaa laws and what not.  We were really hoping to get a call this afternoon to set  up the date and nothing.  Just frustrating.

How we got here.

I can still remember my first real hospital visit.  I believe I was 6 yrs old.  As I understand it, I had a hernia and there was an issue with my kidney tubes being twisted.  That is my first memory of knowing I had a kidney issue.  I was told that my kidneys didn’t develop properly and one may not have developed at all.  It wasn’t until much later, 19 I believe, that it started affecting my life.  I was planning to have my first child and I attempted to get life insurance only to find I had high protein in my urine and they put me in the high risk category.  I’ve been seeing a nephrologist regularly since then.

For the next 20-25 years, my visits increased from yearly to quarterly as my blood test continued to show a slow decline.  I began taking blood pressure medicine to prolong my kidneys.  My doctor occasionally would talk about doing a biopsy, but always decided it would be better to just leave them alone.  A biopsy may give us a name of the condition, but wouldn’t change the treatment, so there wasn’t much point.

In 2015, my GFR dropped in to the teens and we began the process of kidney transplant.  At this point, I just started to notice the affects of my condition.   Late nights had a greater impact on me and I find myself getting short of breath easily.  Not the funnest thing to realise when you are used to being full of energy and not easily tired.  I remember following a group up 5 flights of stairs to look at a project.  The pace wasn’t too fast, but by the time we got to the top my head was spinning.  I about had a panic attack, I couldn’t pay attention to what was going on, it was all I had to remain calm and recoup my breathing.

So, now that my GFR is under 20, I am officially placed on the transplant list. I start having monthly blood tests and get a full work up once a year.  Overall, still mostly healthy, working full  time and taking trips to Great Britain and Punta Cana.  It wasn’t really until spring of 2017 that I really knew things were not right.  Pretty much never feel rested.  Even after 8 hrs of sleep, I feel like I didn’t sleep at all sometimes.  I get light headed, sometime dizzie.  My kidney function varies and I can tell it now.  Some days I’m just in a haze, overall something is not right feeling, never really sick like the flu or anything, maybe more like a mild pain killer foggy feeling.  I get exhausted easily.

I’ve had several of my family member offer to be my donor.  All 3 of my kids and my cousin Erika showed interest.  Lorean was originally my first donor option.  In the second round of testing, they determined he had an irregular heart beat and took him off the list.  Then my brother, Clay, tests and comes up a perfect match.  It took a little while for things to progress for his testing, but once they did, they seem to have really taken off and we are hoping to have the transplant done next month.

The closer it gets, the more real it all becomes.  I look forward to it now.  I know it will be a real life change being on all the anti rejection meds, but the only other option is dialysis and thanks to my brother, I get to skip that boat.  I am very fortunate to have the support of my family and option that Clay is giving me.  This will not be easy for him and I truly appreciate the gift that he is giving me.

Kicking this thing off

My brother Todd has had kidney disease for most of his life. So about a year ago, he asked the family to get a simple blood test done to see if we could be potential donors. Since the wait list can be as long as 7 years, it helps to have a direct donor. It also helps to avoid the dreaded dialysis to get this done earlier.

I happened to be a match! Well, not just A match, but a “perfect match”. So not only can I donate, but his recovery time will be shorter and there is a significant reduction in the chance of rejection. This also means less drugs he will have to take!!!

So I started this quest almost 1 full year ago. Along the way there have been bumps and sidetracks, but for the most part it has been rather decent.

I will say that anyone looking to do this should be prepared to put up with some red tape and paper pushing issues. For instance, I was told by 2 of the hospitals here in town that they would not perform the 2nd round of testing. This consisted of a chest x-ray, an EKG, as well as about 9 vials of blood work and one giant container of urine(24 hours worth). The first hospital said they were afraid they would not get paid. This is ridiculous, as I had an insurance card provided by the hospital doing the transplant! That hospital then referred me to the University of Kentucky hospital. They informed me that, unless the transplant was being done there, they wouldn’t do any of the testing. They told me to just go do it at the Indiana University Hospital in Indianapolis, since they were the ones doing f the transplant. I thought that was insane, so I decided to go ahead and retry the first hospital. I prayed on the way in that if this was the time God wanted this to happen he had better get me some help. It worked. It just shows that if you talk to the right person (or deity) you can get anything done.

The results from the 2nd test came back in about a week or so. I had a nice clean bill of health! Next step, schedule a trip to Indiana to meet with the fine folks at IU Hospital.

I got to meet with all kinds of people. A psychologist, a social worker, a donor advocate, and a doctor. I also got more x-rays and a CT scan.

For those of you who have never had a CT scan, I’ll try my best to describe it. They put an IV in that will inject a dye to show up on the scan. You lay down, grab ahold of a bar hanging above your head, and the table slides in and out. Sounds fun! Then they explain that the dye will give you a warm sensation and you will feel as though you need to use the restroom. Upon hearing this I think “It’s a kidney scan, so I’ll feel as though my bladder is full and need to pee. No big deal. I’ll just empty mine before the scan.” So I’m all comfortable, shorts pulled down to my mid-thigh, towel laying over my personal spot on a swinging table with a trapeze to keep my arms up above my head. Then I hear a voice say here comes the dye. It started right behind my ears, this hot, flushed feeling, then the whole back of my skull. I thought “Odd, the scan is of my kidneys, why am I warm in my head?” Then the warm moved…. down. Have you ever had diarrhea, been in a car and know it was coming, holding on for dear life that last mile. Then you finally make it home, run in, open the bathroom door, struggle with your belt. Ya know that intense feeling in your lower area through all that. That’s as close a description as I can put on it. Then, as quickly as it showed up, it was gone. The whole process took about a minute,from what I was told. Felt like about 5 if you ask me. So to say “A feeling as though you need to use the restroom” is misleading just a bit.

Then I’m told I can’t go pee until after the x-ray so that the dye stays in and they can see it on there. When it was all over, The x-ray guy let me see mine. He informed me I was going to need to pee soon and showed me a half filled bladder and more on the way! He was right, i did. For the first time ever I literally got to say I could see I needed to pee!

So now here we are. A month after my visit and our case was presented to the board. I was told that they wanted me to do just one more test. They wanted to make sure I was still nicotine free. I was a smoker for over half my life and they wanted to make sure I didn’t fall back on old habits. I took that test last Wednesday morning and the results will be back in a week. After that comes back clean, we will schedule a date for the transplant and get my brother back on the road to feeling more like himself again.