Friday, August 2, 2013

Kidney Disease...

(We've had a lot of people find out that Aaron is sick, and ask us what is going on--it is obviously a long story and I thought putting it to words, on here was the easiest way to tell the masses)

 My husband Aaron and our big kids, Levi, Lydia, and Silas.

Life is funny sometimes....and then sometimes it's not.  In October of 2011 Aaron went in for a routine wisdom tooth extraction...and ever since, nothing has been routine for my little family. Right now, less than 2 years later, Aaron is in kidney failure...waiting to be approved for the transplant list and trying desperately to avoid dialysis. We don't do anything, without considering the kidneys....

Let's back track a moment...

The summer of 2011 was great! We were riding bikes a lot, doing family rides--20 to 30 miles every weekend and participating in lots of organized events.  Aaron was riding with a "team" from work and doing quite well building up speed and endurance.  Because he likes to keep track of that kind of stuff, and because his work had a convenient blood pressure machine--he started to keep track.  He noticed his blood pressure was going up, and we noted it and decided we would have it evaluated at our physicals that year that were coming up in July.  During that appointment, Aaron mentioned that it was high and she noted it was, and made plans to see him in 6 months, but that his job must be stressful and hopefully it would get better.  Needless to say, we fired that doctor... she was mediocre at best..

In September, Aaron was complaining of headaches. He decided that, since for the last 5 years or so he needed his wisdom teeth out, and just hadn't done it--that this was the culprit and he would just have it done.  Knowing that there are good and mediocre people in every profession, and I didn't want to have to do the work to find one where we lived.  So, we traveled to our hometown and had them done there...our family was there to watch the littles while I took care of Aaron, so it was a win win! Post surgery the Doctor came to speak with me regarding Aaron.  He expressed concern regarding the level of his BP and explained that though they expected some nerves to raise the BP, that his was very high and it almost prevented them from doing the surgery. 

At that point, I called our former doctor--Dr. B (from when we lived in town)--who is amazing--and we saw her right away.  Needless to say, she was concerned--Aaron hadn't had a history of high BP or anything like this.  After working hard to lower his BP she ordered some blood work.  When that came back with a high creatinine level, we knew something was wrong--we just didn't know what exactly.  That weekend was a whirlwind as we found a new family practice physician (because there was no way we were going back to the mediocre one who shrugged of the BP issue and we couldn't very well travel 5 hours to our home town every week to see Dr. B), got tests done, and medical records transferred, and took care of my sore, falling apart husband. 

In the days, weeks and months to follow, we saw our new family doctor, had a ton of tests and scans, and ultrasounds, visited often with Aaron's nephrologist, an oncologist, and even had a visit to the ER (I'll spare you all the details).  Just know that it has been scary and has a way of making you feel very vulnerable.  In May of 2012, while I was pregnant with Simeon, Aaron had a kidney biopsy.  They had already decided that his kidney disease had come first which causes the high BP--they kind of play off of one another.  Most of the time, however, it is the high BP that causes kidney disease.  They sent the results of his biopsy to Mayo to 1. Rule out a disease that is causing the kidney failure, 2. To find out how the kidney behave, 3. To try to determine what actually caused this, 4. The actual condition of his kidneys.  When we got the results, it seemed to leave more questions than answers.  That his how this process has been all along--there is a lot of testing and then some guessing, and then waiting and more testing.  They did determine, however, that Aaron's kidney disease was not an actual disease--meaning that he didn't have cancer, or poly-cystic kidney disease, etc.  His kidneys were damaged at some point by, what they assume was a medicine that he took.  Medicine is filtered my his kidneys and they assume that either when Aaron was a kid and took a bunch or medicine for Asthma (lots! his whole childhood) or his car accident when he was 16 and they were trying to save his life (they pumped him with a lot of antibiotics).  It gave us some answers, but also left us going to the nephrologist every couple of months to see if his kidneys had failed all they would fail, whether they would fail rapidly, or slowly decline.  Aaron did a long, 6 month stint of prednisone to encourage his kidneys to behave, if you saw him during that time, he gained 30 pounds and looked like a different person--it worked short term, but then his kidneys decided to show us what they were made of.  In the first few months of this year (2013), Aaron had his kidneys tested once again and the following day I received a call from his nurse asking how he felt and if he was sick.  I was confused and she proceeded to explain that Aaron was officially in kidney failure.  His numbers had dropped dramatically and he would need a transplant.  Needless to say--I pretty much lost it!  She explained that if he started to feel sick, weak, etc (general flu symptoms) that he didn't have the flu--and he needed to go to the ER immediately and let them know he was in kidney failure--the symptoms of end stage kidney, renal failure are similar to symptoms of the flu.  They did give him a few weeks dosing of prednisone this time hopes to avoid dialysis before transplanting.  It helped, but is probably only temporary.   We are proceeding with the transplant.  I will go ahead and end this post is already way too long, but will continue soon with where we are now.  If you have questions, ask--I'll do my best to answer them as well as I can.  In the meanwhile, please continue to be in prayer for our family.  We appreciate it! 

With Love,


1 comment:

Anonymous said...

Amanda.... We will keep Aaron in our prayers. I know someone else who went into kidney failure because she took Tylenol daily. She went through dialysis until she was fit enough for a transplant. Thank god Aaron stayed fit and is eligible so soon. I know this is scary, but this can turn out ok. Contact me if I can do ANYTHING. I now live only a few hours from you and will be right there if you need me...... Leah