Yesterday we traveled up to Stanford for the appointment with the kidney doctor.
He really didn't tell us anything that I wasn't already expecting. There is a fine line between the heart and the kidneys and living 36 years with a bad heart and then going down hill fast in the last 3 years, we knew this was a possiblity.
I love this doctor. He fits in perfectly with our team of doctors. He walked in and immediately started joking around with Tin Man and totally agreed with me that Tin Man seems to feel the need to make everything extra complicated.
He sat down and wanted Tin Man to explain as much as he could about his health in the last 3 years and everything that's happened at Stanford so far.
He told us that he had skimmed through his medical records, but he likes to hear most of it from the patient because it gives him a better understanding of what type of patient the patient is. He said a lot of people come in having to clue why they are there and can't really give much detail about what's wrong with them in general. Then you have the patients like Tin Man that have a complete understanding of everything.
He went over the results from the blood tests (twice a month) for the last year. He then explained to us that his kidney function has decreased by 50% just in the last year. Right now his kidney function is at 35%. He told us that this wouldn't be much of a worry if we were dealing with just the kidneys, but because of how bad his heart is, there's a huge worry that the kidneys are going to get worse before he gets his transplant.
A little detail on Tin Man's heart. He was born with Transposition of the Great Arteries. When he was 18 months old he had a baffle put in to help the 2 loops of blood pool together. For whatever reason, this caused his heart to pump backwards, and his blood flows backwards. Blood from the heart flows to the body, through the lungs, and back into the heart. Now the baffle in his heart is narrowed. He had a stent put in in July 2010, but even with that its still narrowed. This narrowing and the fact that his heart isn't strong enough to pump normally causes the blood to back up into the lungs causing pressure build up in the lungs.
The doctor yesterday explained to us that the blood flow backing up into the lungs and the pressures are affecting the kidneys. That the backup doesn't just stop in the lungs, but goes back into the kidneys too. Which is what is causing the damage to the kidneys.
He said that in some cases the kidneys will repair themselves after transplant and all is fine and in other cases they won't and then things get really serious because bad kidneys and a new heart will only cause the new heart to over work and put us back in to a bad situation.
So he ordered a bunch of blood tests, urine tests, and kidney ultrasound. Then once he gets those results back he will sit down with the other doctors on the team and figure out what will happen next.
Most likely a kidney biopsy and if that's the case, then he will need one done ever couple of months until he had his transplant so there aren't any surprises with the kidneys when that time comes.
The worst case scenario would be he would need a kidney transplant along with his heart transplant. He did tell us to prepare ourselves for that because of his heart condition and the fact that his kidneys are declining so fast, that may be the route the team and transplant committee may decide to take.
I know God only gives us what we can handle, but seriously, he needs to stop thinking so highly of me and give me a little bit of a break. At least just for a couple months.