Part One...

Well...it has only been like a whole year since I posted, so I thought I would share a little bit with you!

My kiddo asked if I was going to write a blog post about my experience in being a living kidney donor.  I thought about it and asked my brother-in-law, Russell, the recipient, what he thought and he was in favor of the idea.  I can't tell his story, but I can tell you my little part in it.

Just a little note here - I am still recovering from the procedure, so this has been written in phases.  I have tried to make it flow, but if there are steps or jumps that happen, this is the reason.

So, I really have no idea where to start -- the beginning I guess.

In May 1968 ... What?   Oh...not that beginning.... Okay!

I will start in April of 2017.  This is the month that both of my brothers-in-law, Russ and Bruce, came to visit Trenty and I in Las Vegas.  Along with their beautiful wives, of course.  It was at this visit that Russ had confided a bit with Trent and I and had told us he was having "some" kidney problems.  He talked of an incident at school (he's a teacher at UofU) that was concerning, but then said that he was doing better.  He really didn't make it seem like a huge big deal.  But, later we found it, it really was a big deal.  Ilene, Russ's wife, said they were simply in denial at that time and really could not bring themselves to say he had kidney failure and needed a kidney.

So, let's jump to about June of 2017.  Trent gets a call from his sister and asked how Russ was in April when he visited us.  Trent told her that he seemed fine, why?  She stated at that time that Russ was in need of a kidney.  We were shocked, really!  Both Trent and I thought back on our conversations with Russ and Ilene from their visit, and we could not really think of any clues they had given that he was in that kind of trouble.  It appeared that Russ had been on dialysis for a few months and was in search of a donor.  His children and their wives all went through the donation process and were eliminated for one reason or another.  His wife, Ilene, was not a terribly good match, but they were going to go ahead and use her kidney because it was the best option they had.  Though, not being an exact match, would mean extra treatment before and after for Russ and the outlook was not as favorable.

Trent said that he wanted to donate his kidney.  I immediately said, "Absolutely Not!!!"  Not with all the trouble Trent had just a few years ago.  I could not watch my husband go through another hospital stint and another recovery. Besides, as it turned out, he would have been eliminated as a candidate right from the start.  So, we talked about it a bit and I went on my own to think about it.  Later that day, I went to Trent and I said I wanted to see if I could donate.  He was shocked, I think.  But he said that Russ was in trouble and if this was something I thought I could do, well then I should.  I talked with my children about it as well, before coming to the final decision, and they were both okay with it as well.  I thought a little more about it and prayed about it and I felt this was the right decision.  So, I asked Trent to text Russ and get the information on how I could become a living donor.

A side note here - Trent told me at that time that if I went through with this, he knew in his heart I would be a match and that I would donate.  He just knew.

Russ, shocked!, sent us the information.  I waited a day or two, just to make sure it still felt right.  I went to the online site and put in my information.  I got a call back shortly after (I cannot remember the time line here) and we started the process.  This was in July 2017.

The process starts off with a questionnaire.  In this, you are asked what health conditions you have, what health conditions are in your family, what medications you take, and a few other health-related things.  The first question that eliminates most people is high blood pressure.  If you have any kind of any kind of HBP, you are out.   I sailed through this first part with flying colors!!  Next steps were blood/urine tests.

The first step was, of course, to find out my blood type and if it was compatible with Russ's.  We, remarkably, have the exact same blood type.  Onto the next step.  The next two steps were all kinds of blood work for compatibility and antigens and antibodies and diseases and counts and....it just goes on and on!  There was a small problem with my WBC in that at one point it appeared I had a bit of an infection (I had a root canal that messed with my numbers) and that my eosinophils were elevated (I have TERRIBLE allergies).  So, once these  were figured out and cleared with the physicians, I had to undergo some personal health tests to find out if I was healthy enough physically.  I underwent a routine woman health evaluation.  In this testing, my mammogram came back with some abnormalities -- but it always does!  I had to undergo a sonogram and a magnified mammogram.  These finally came back okay and showed normal dense tissue findings.  Finally...we were ready to move on.

Okay, so not to make it sound like such a cake walk... I started testing in July and my last testing was finally done in late October.  It was not a process which can be done in a day or two, nor a month or two.  It was a lot of testing and a lot of waiting.  This was one of the reasons we didn't tell people what was going on.  The process was long and at any time, I could have been eliminated for any reason.  Trent and I just felt it was best to keep this just between us, our children, and Russ.  I did eventually tell my family as we got closer and I did have one really terrific friend who talked me down a few times through the process that knew earlier on.

On a side note here, Russ and I were really not allowed to talk.  It was against the "rules."  It makes sense, in that I wasn't to feel any pressure, but then again, he is my family and it seemed stupid that we were not talking about all of this.  I would text Ilene on occasion just to keep her up-to-date on where I was in the process.  I felt it was important for them to know I was still continuing on.  His physicians were not allowed to really tell them anything about me or my process; just that there was a healthy, compatible donor in the testing process.  Trent would occasionally text Russ and tell him the same.  Also, I think it is important to mention here that Every. Single. Message. from Russ or Ilene to either Trent or I included the phrase, "Of course, if this doesn't feel right at any point, you can back out.  There will be no hard feelings."  Or something of that sort.

So...now we are to late October 2017.  At this point, things were at almost a stop.  All the testing had been done, so there was a bit of a stall.  At this point, I found out the Russ was dropped to Category 7, from Category 1, from UNOS, because he had a potential living donor.  This freaked me the heck out!!  I was like...if this is the case, we need to hurry the hell up!  I can't be the one responsible for him losing a kidney donation from a deceased donor.  At this point, Trent said it was ridiculous that we could not have any contact; he felt that the initially process was complete and that we could, should, be talking with Russ and Ilene. He called Russ and broke the rules!!!  Together, we got the ball rolling!

I had to travel to Salt Lake City in late October for an examination by the clinic.  This whole time, I was doing the testing in Las Vegas and they were sending the results to SLC.  So, it was time that they do an evaluation.  So, I flew alone to SLC for this evaluation.  This was a 2-day process.  I had to get blood work done, radiological testing done, EKGs, and a psych evaluation (I was worried about that one!!).  There was not a moments rest in those two days!  I stayed with Russ and Ilene..so the whole "no contact" thing was blown out the window!  On the day I was flying home, I got a call stating that there was a problem with my liver.  I had to do one last test on my way out of town to test the liver.

Then the wait.  Yeah, I know, you would have thought that the whole 4 months was the wait.  But, no!  The wait was for the board to evaluate the case and to decide if this was a go or not.  The board meets on Thursdays, so we had to wait.  The first Thursday rolled around and no call.   I waited patiently (ha ha ha).  I finally called my nurse in SLC to find out what had happened.  Did we get approved?  Declined?  She said our case was not reviewed.  Oh my gosh...are you kidding me!!!!  The next Monday the nurse called and said there was still an issue with my liver and told me I needed to go to St. George for further testing.  We finally worked this all out and we were on, again, to the board.

WE GOT THE GO AHEAD!!!!  Now, let us schedule a date and let that date be soon!!

Through various hiccups and scheduling problems, we were finally put on the surgery schedule for November 21!  Yeah, two days before thanksgiving.  I had to go to SLC the week before for preoperative work (it really was a never ending testing story).  Trent and I drove to SLC.  We had a wonderful, wonderful family gathering on Sunday.  Russ has the biggest, bestest family ever.  Including us, there were 29 people at their house that Sunday.  It was really a great time.  I got to see family I haven't seen in a long time and I got to meet new family members!  There were six (6!!) desserts!  I know!!  The meal was spectacular but the company was even better.  I went to do my testing the next day and Trent and I returned home.  I had to get the M&Ms a caregiver (LOL) and get that scheduled and I had to get the house ready and clean and I had to prepare, mentally, for what was going to happen....

I think I will stop here and continue on another post for the surgery.  Stay tuned!!!



XOXO