Count down is started

So I got the call today that we are 100% cleared to do the final test. I keep hearing “the last tests”. And then there’s another “last test” . So now we are officially on the books for a August 28th surgery with my final “final tests” scheduled the week before.

We also get to meet my surgeon. That will be nice. To meet the person who will have their hands inside my body. I keep trying to come up with questions they haven’t heard yet…

So 3 weeks from now I will be about 8 grams lighter and really doped up, I’d assume. Hopefully they don’t keep me all goofy too long after the transplant. I’m not a wimp when it comes to pain, but I’m not the world’s greatest either.

Getting more real

I think this is starting to become more real in my mind. Up till now I have just been thinking it was simple and far off. Now we have the date scheduled and it is closing in. I’m not worried or anything, it just really hit me as I typed the words into my calendar. Reading Todd’s post yesterday also put the time out into perspective. Just 25 more days, which is less than the number of days since my trip to Indiana. Seems like that was just a few days ago.

An interesting point, it is amazing the number of people I have spoken with that have someone in need of a kidney. From people at work who have loved ones on dialysis to even the insurance companies phone people. Really amazing to me.

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.