Back to life as we knew it ...

It's been a little while since I posted an update.

I haven't officially gotten my letter from UAMS stating that I am not currently a candidate to be posted on the 'the list'.    I have talked with my transplant coordinator who I like very much, her name is Diane.   So with the fact that I am not needing a transplant as soon as I thought, we will be going back to life enjoying my own kidneys.   Any day with my own kidneys while avoiding dialysis and anti-rejection medication is a blessing.   I am still holding out hope that my kidneys will just miraculously stop deteriorating.   It happens, they don't know why, but it does.   I have a pretty good suspicion why it happens and that's what I'm praying for.   My doctor says I could live a long enjoyable life with just 25% kidney function, and I can absolutely be happy with that if that's God's will.   To the medical world they fully expect to see me again at some point.  My nephrologist (kidney doctor) will be deciding how often he wants to measure my kidney function and we will see how it progresses from there.

Besides my kidneys, the tests found a couple of things that we will work with my doctor to investigate further.  I don't know much about either one, but I assume I'll be learning soon enough.  One was an elevated PSA (Prostate-Specific Antigen).  I know that it's normal to have some PSA in my system but an elevated number can indicate other issues that I'm not knowledgable enough about to even speculate.   My other issue that they suggested looking into is that my liver seemed to have some very small cysts in it. She said that it's not un-common it's just something else they would want to figure out before any further discussions of transplantation.

I've had a few people ask me about who to talk to about being a living donor.   Before they told me I wasn't ready to be put on 'the list' they had a person to call who would start the investigation into whether a donor was a match for me.   But now that I don't need to be on 'the list' they will not be accepting any living donor candidates for me.   I very much appreciate those that have asked about being a living donor, it's hard for me to understand how or why someone would do that for me, but I am very grateful all the same.

So, I guess for now we just go about our lives and do our best to maintain the kidney function that I do have.

Thanks to everyone for the encouragement and support.   Not a day goes by that I don't hear from multiple people saying that they are thinking and praying for me, and while I'm not used to that, I very much appreciate each and every one.

Until our next kidney appointment in August ... stay tuned

Almost Speechless

I had a very long weekend.   We started out driving to Ft. Smith to attend my nieces wedding.  It was beautiful and we had a good time seeing family that we rarely get the chance to see.  I got to see my great-nephews which I have never met because they live in Minnesota.  Soon after the wedding we traveled back home in hopes of getting to watch Ben's (my youngest son) all-star team play in a tournament in Dumas.  They were playing very well and kept on winning.  About the time we got home we found out that they won again and I had an hour and a half to drive the hour and 15 minutes to Dumas to catch his next game, which I did.   He ended up winning all of those games and also the championship game which didn't start until after midnight on Father's day.  They won and that was a good Father's day present.   Sunday was catching a little bit of sleep after arriving home at 3:30 am.  We had to get up and going by 10:00 in order to get Jake (my middle son) to a baseball tournament, thankfully only about 10 miles from home.  They played very well in their game and Jake hit the game winning 2-run home run, for my second Father's day present of the day.   They didn't play as well in the second game that afternoon, that's baseball.  It was a good Father's day.

I can talk all day long about how proud I am of my boys, that's not why I'm almost speechless.

I was sitting at my desk this morning trying to catch up from being away from the office on Friday and my phone rings.  It is Diane from the transplant team.   She is returning my call from last week asking how my results to all my tests turned out.   She went through most of my tests being fairly normal.   I had a few very small cysts on my liver which she said was not abnormal and we will probably be looking into that further in the future.  She also said that my PSA was high, I don't know what that means but she mentioned that it was related to my prostate and they might want to investigate that more as well.   I found out that my blood type was A+ (I read that as A plus), which I seem to remember is one of the more common types which expands my universe of potential donors.  My echo-cardiogram was normal, so I'm glad my heart is healthy.

I'm still not to the speechless part...

She ended by saying that she would take all my results to the transplant committee this afternoon, but that she didn't think that they would be putting me on the transplant list any time soon.  That's when I lost my speech.   She said that my blood work indicated that my kidney clearance (which is how they measure how well my kidneys are functioning) went from 20% function to 27%.  Think of it as flow through a water hose, if you are only getting 20% of your water out through the hose because it is kinked, it's much better to get 27% of the water out when you release the kink, increase is very good. They only put people on 'the list' when they have 20% or less kidney function.   I asked her how that could happen and she said they couldn't predict it, but that she has seen it happen only a few times.   I give complete credit to God and to all of you for your healing prayers, thank you.

That's the best Father's day present that I've received in a long time.

We will keep measuring to see how my clearance changes over time.  Please continue to pray.

... stay tuned

So What Now?

I'm thankful that yesterday went well.   I've had people ask me what the next steps are, so I'll try to lay those out so that they make sense.

• After 4:00 today I will be done with my to-do list of tests and procedures.  I will call Diane our transplant coordinator and she will pull all the results and package them up for the transplant decision committee to review.   That supposedly could happen as soon as next Monday.   If they don't see anything of concern in my results then they will put my profile of information into the UNOS (United Network for Organ Sharing) database and I will officially be on 'The List'.    What this means is that if a donated kidney comes available that exactly meets my profile (blood type, antigen/antibody combination, plus alot more that I don't understand) then they will call me and the very fast process of getting me ready to accept a new kidney will kick into action.

In the meantime ...

• We wait ... the general wait time for a new kidney in Arkansas is shorter than it would be if I lived in California or New York.  The metropolis areas average close to 10 years on the waiting list, but in Arkansas we average from 1 to 3 years.    So the next step is to wait.  
• There are alternatives to waiting for a donated kidney which generally come from someone who has had a brain related accident, is on life-support and has indicated that they are an organ donor.   The alternative to waiting for a donated kidney is to find a living donor.   A living donor is someone who designates me as the recipient of one of their kidneys.  We talked about this yesterday at length and it is not a small decision.  I will post another entry talking about living donors and how all that works, I'll have to read up on all the information they gave me again to be more accurate.
• We learned a lot about life after a transplant as well.   The drugs to keep your natural immune system from rejecting or fighting the new foreign object that is now keeping you alive, are very strong and make people susceptible to new risks.   The big risks are diabetes (which I'm lucky that I don't have them in my close family history), some forms of cancer (skin cancer being the biggest) and infection (from internal and natural things as well as the normal external things).  Skin cancer alarmed me some because we spend a lot of time outside and I will then have to be addicted to sunscreen and wear sleeves in the summer and protect my bald head all the time.   I guess I will turn into a germaphobe but it really hit home when she mentioned that I couldn't bite my fingernails any longer. How am I supposed to kick that habit, I've been doing that all my life?   So another thing to do in the meantime is to start practicing like I have a new kidney and kick my finger nail biting habit.  
• We talked at length with the financial coordinator and I'm very thankful to mention that between my company insurance policy and Medicare, which has very specific clauses for dialysis and kidney transplantation, a transplant will cost us next to nothing.   I don't understand how that is possible but apparently Medicare is awesome at helping kidney failure patients.   I'm going to chalk that up as a huge praise as that was a big burdening unknown to me. 
• I need to get with my dentist for a pre-transplant screening as apparently a majority of infections enter our bodies through our mouth and gums and when the anti-rejection drugs lower my immunity the mouth will be of bigger concern.  I guess I will have to go to the dentist more often than I do now, it's nice to have a dentist in the family.

That's all that I can think of that still needs to be done.

Thanks again for all of the thoughts and prayers.

... stay tuned

Evaluation Day - Update 1

Just a quick update on our day for those that have been praying and now wait on news of how effective their prayers were.   Of course, they were very effective.   I was at peace all day and I don't think it could have gone any smoother. We met many very kind and compassionate people everywhere we went.   The day opened my eyes to the whole process of kidney transplants as well as gave me an encouraging feeling on my own health situation.   The main goal of the day was to educate us on transplantation and evaluate us on our health and make a decision on whether I am actually a candidate for receiving a new kidney.   There are far fewer donor kidneys than there are people who need them, so they are very protective of those donor kidneys and they will not take the decision to give someone a new kidney lightly.   The criteria and decision to put someone on the national transplant list is complicated and only the healthier patients who have a higher chance of acceptance of a new kidney will make it to the list.  

The day began a little bit after 8:00 this morning with us and 4 other potential recipients sitting with the social worker learning all there is to know about pre and post transplant life.  I knew some of it but some information answered some questions that I had.   I'll go back through some of that information and post it in a different blog later.    It was very interesting to me to see the different type of people who were wanting to be a kidney recipient.  A couple of patients were definitely in full kidney failure and desperately needed a kidney.   They would prefer to transplant a kidney to a patient that wasn't already on failure which drastically increases the chances of long term transplant success.   They will be on my heart as I hope they can figure out a way to get them a kidney.

After lunch we were in one-on-one meetings with each of the transplant team leaders asking and answering questions about my health current and past.    They were interviewing us as much as we were interviewing them.   The outcome of the day will be them deciding on declaring us as a viable kidney transplant candidate, or not.  The alternative to transplantation is dialysis and while it's fine for some, I don't think my lifestyle will lend itself to that solution.  

After the meetings, each patient received a 'to-do' list of procedures and tests that need to be done before the team makes their final decision.   My 'to-do' list consisted of an Echo Cardiogram,  EKG,  blood-work, chest x-ray, kidney/liver ultrasound and a secondary blood-work.   We knocked out everything except the ultrasound and the second blood-work, which I will be doing tomorrow.   So the 'to-do' list that they said normally would take 3 months we knocked out in two days.  That is a big praise!  That means that I am healthier than most and they need less information to make their decision.   The coordinating nurse mentioned that they might make up their mind and let us know their decision by the middle of next week.  

I have a mountain of material to digest and read so the next posts will probably be just sharing any information that I've learned from the material.

If anyone has specific questions, post them in the comments and I'll try to figure out the answer.

Again, thanks to everyone who prayed in the last two days I am convinced that our day could have gone a completely different direction without God's leading hand in the whole process.

... stay tuned

Prayer Works

I was afraid this was going to happen.   I shared my situation with a lot of friends in the last couple of days.  I am horrible at the skill of face to face sharing of anything personal, so I used my favorite method: email.   I received many replies from good friends promising their prayers and support whenever I need it.  I am very grateful for everyone's sincere responses.   What I feared also happened, people are assuming that I am getting a transplant tomorrow, and that is not the case.   All I am doing is talking with the team that does transplants.   This is my fault for using email, it's easy to forward and people tend to see keywords that give them alarm.    Rest assured I am very healthy (besides the fact that I have weak kidneys).  I have no symptoms and I intend to keep it that way by being proactive, which is why I'm talking to the transplant people tomorrow.   

So, tomorrow is the day that I get to learn all about transplants and all that goes into it.   I'll have to say that I have less anxiety about the whole day.  I'm going to give credit to all of the prayers from my family and friends in the last couple of days since word of my situation has gotten around.    Prayer is awesome and I appreciate and feel it.

People have been asking questions about the whole process, and I don't have any answers yet, but I'll take good notes tomorrow and share what I learn.   We can all become smarter together.

... stay tuned

History to Present

For my first blog I thought I would just share my current situation up until today.    

I discovered about 10 years ago as my mother was going through the final stages of her own chronic kidney disease that I get to follow in her footsteps.   I remember attending the first meeting with her transplant team to learn about the different options.   My mom started her testing to get on the transplant list at that time.   I immediately chose to start my own testing to see if I could be a living donor for her.   It was in that testing that I found out that I could not be a donor because I also had kidney disease.    So my journey began right then.  I started seeing a kidney doctor.   I don’t remember exactly what my function was at the time but I do know that it was close to 50%.   I learned that there is not much you can do to slow my type of disease besides trying to slow the process by watching my blood pressure and eating right.   I admit that I’m good at the blood pressure part but the eating right was much harder.  

Fast Forward to last year’s doctor appointment.  I learned that my Creatnine number (the number that doctors use to gauge how much kidney function I have) had doubled which means that I have half the function that I had at the first visit.  So basically I have only 25% kidney function.   It’s weird to think that with 25% function, I feel fine.  I don’t have any symptoms whatsoever.   I’d like to blame my out of shape-ness on my kidneys but I’m just flat out of shape.   I got checked a couple extra times in the past year thanks to a good friend of my wife who is a pathologist and I now know that there are other areas of concern based on what I eat.  

Today is June 9, 2011.    At my last appointment my doctor recommended that I start the process of looking at my options for maintaining my kidney function as it is apparent that  I’m headed toward the point where a transplant or dialysis is needed to clean my blood properly.   If too many toxins are allowed to build up I will start seeing those symptoms that I’ve been blessed to not experience so far in my journey.  

The next phase is about to start because I am scheduled to meet with the UAMS Transplant Team on June 15.   It’s an all-day event with education and I assume testing.   I admit that I’m more than a little bit anxious about the day.   I have a lot of questions.   What if I am not a candidate for transplantation?    What kind of tests do they have to do to make that decision?  If I’m a candidate, what’s the next step?   If I make it onto the list, how long do I have before I need dialysis.  I’m not crazy about dialysis and want to avoid it as long as I can.  

I’m not typically the worrying type, but this is hanging over my head more than I care to admit. 

I would appreciate your prayers for my kidneys to miraculously stop deteriorating.  I believe in miracles and I know that God can if he is willing.  If that’s not God’s desire then I pray for his grace all along my journey.

Until next time ....  stay tuned