On August 21, we visited IU Hospital to finalize the process for getting Aaron on the transplant list. We drove down after work and stayed at the hotel I'll stay at during the transplant process. It was nice, had big rooms so that the kids can stay and we won't all be crowded. The best part is, that there is a shuttle to the hospital, so I won't have to navigate the crowds, parking, etc. I was excited about that part. Then, in the morning, we went to the hospital to have some blood work and tissue typing done. Then we met with the nephrologist on staff there at the hospital. They will do the monitoring and medicine regulating for Aaron from the transplant on--he'll be on anti-rejection medicine for the rest of his life (I'll have to write more about this visit later.) Until then, we still visit his Dr. in Fort Wayne. This doctor informed us (which we already knew from our own research) that the wait for a kidney from a deceased donor, with Aaron's blood type is 4 to 5 years (he has type O blood). The reason for the hold up is that there is such a demand for his blood type. His report is important to the transplant process, because he gives his recommendation to the nurse coordinator and she presents it to the transplant board. After that, we met with the social worker. We spoke with her about our family, finances, insurance, etc...it was really fun... err...not fun. We felt the weight, the breadth of the entire process that day, it was a bit overwhelming--This kidney thing, it effects every area of our lives for the rest of our lives. Next, we went to a kidney education class. It was a group class--with everyone else that was working on finishing their work ups that day. We watched a video that described how the transplant is done--do you know that Aaron will end up with 3 kidneys after the surgery? --they will not disconnect the dead kidneys, just add a new one in the front. It minimizes the risk of infection and all kinds of other things that are associated with surgery. But, as I sat in that class, the weight of how my life is so hinged on the kindness of another person is overwhelming. You see, my husbands kidneys are dead--they function at 19 percent at this point and that is considered renal failure. Since it is best, on his body and other organs that he not have to endure dialysis if he doesn't have to, or for as short a period of time as possible, we are holding off at this point. He will need to be on dialysis by the time his function is down to 10 percent-- but when he starts is up to him at this point. As long as he can endure his symptoms--he won't do dialysis. (His kidneys have not behaved well and his kidney function has declined 10 percent since we started this process less than 2 years ago.) Dialysis only filters certain things from your blood. It doesn't/can't do all that your kidneys do. For that reason, dialysis-though it saves lives, is also very hard on your body. One of the statistics that they showed during the educational class said that only 20 percent of people on dialysis are still alive after 5 years...and a large percentage of the time, they die of a heart attack. It's not hard to do the math on that one--
The day we were in Indy, Aaron's parents met us there and went through the day with us. His mom was also blood and tissue typed to see if she would be able to be his donor. Thankfully she was a match--so she will be testing to see if she is a viable donor. It's all just super scary.
Tuesday the 27th of August Aaron's nurse coordinator presented him to the transplant board and he was okayed to be listed. She then submitted him to our insurance for his 2nd approval--it is a complicated process. We got word Friday, August 30 that he received his insurance approval and will be listed this week. He has to be on the official list, and through the official process to begin testing his mom to see if she is a viable candidate for his donor.
Please be with us in prayer in these ways--
We are praying that Aaron's kidney function will level out--not drop off like it did earlier this year. (We need these things to last as long as possible)
We are praying that God will provide the right donor, with the right kidney for him. (we are hopeful it would be his mom--but if it isn't we need the right donor kidney)
We are praying that with this recent move, and the stress of the kidney situation, that God would give us peace, that he would calm our anxious hearts.
We are praying for our Decatur house to sell--we have a contract, but it seems shaky--we are currently paying 2 mortgages, 2 electricity bills...you get the picture. With the looming medical bills--we really need to just be done with it.
Thanks! (sorry if this is one great big run on--it's hard to write these things down, ya know...)
Blessings,
Amanda
Tuesday, September 3, 2013
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)
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 too...in 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 here...it 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,
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 too...in 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 here...it 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,
Amanda
Wednesday, June 12, 2013
A little catch up!
It seems hard to believe it has been a year and a half since I last wrote here on the blog. It seems like just yesterday I was writing constantly. What a difference a year and half can make! Our family looks differently than it did then--In July of 2012, we added a baby boy to our family.
Simeon Joel
7/11/12
Levi was excited it was a boy! We didn't find out what we were having, so it was a surprise for all of us. He said all along that he thought we'd have a boy, and was excited he was right!
I didn't think that Lydia would love him as much as she did! She thought he was born just to be "her" baby and when someone tried to take him away, would squeeze him tight and say-- "no, MY baby". To this day, she loves him lots and still squeezes him constantly!
Here is a picture of the crew! Levi and Lydia were very excited to have a new baby brother. Silas...he wasn't excited-- he thought we needed to have a girl, so we would have 2 boys and 2 girls and it would be even. He didn't want to hold Simeon at the hospital, but warmed up to him when we got home. To this day, he still says he hopes that next time it will be a girl...to help even things out. Love him!
Lydia helping daddy tend to Simeon. There wasn't a moment she didn't want to be near him!
The sign our children (and our moms) made to welcome Simeon home.
He has been a great baby, and an easy fit in our family. As we speak, he is 11 months and is a giggly, busy, happy baby.
Our Crew at the Zoo!
Praying that you have had a great 1 1/2 years too!
More updates to come!
Blessings,
Amanda
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