August 7, 2009 (II)

Continued from August 7, 2009 (I) Post:

This seemed like a good time to leave - since they were getting closer to taking him off to the OR. Plus I had to call Scott's cardiologist and have the records faxed. Plus I was about to fall over from being so very tired. I went outside to make the six or so phone calls and then went to the cafe to get some breakfas...t. The whole time I'm having conversation in my head to make sure all the "t" were crossed and the "i" were dotted. Once I was settled with what I needed to do I turned it over. I took breakfast back to the room and ate. Once I ate I made up Scott's bed and promptly laid down. It was only a short time later that the surgeon popped in. I knew instantly that something was wrong. He must have read it on my face because the very next thing he said was that Scott was just fine. He then went on to explain that the donated pancreas was not up to standard (pancreses are actually hard organs to transplant - we're currently learning) and he was not comfortable moving forward with the transplant due to the risk of rejection. As the disappointment washed over and I continued to listen to what he was saying my admiration of him was growing. His concern is for the patient. As much as he might understand how hard it is for us to wait longer - he's more focused the success of the ...tranplant. He left and I started making phone calls again. I had to tell Scott's parents to turn around and go home - how very hard that was. About an hour later they brought Scott back up to the room. Let me back up a bit...they had taken Scott into the OR and started to sedated him. During this time it is customary for the surgeon to inspect the donated organs and it was at this time the surgeon made the call. So they had to bring Scott back out of the anesthesia and then back to pre-op to monitor him for a bit. He says when he woke up he immediately realized there was no pain. They then told him that the transplant did not happen. About an hour later they wheeled him back up the room. From there we asked for him to get dialysis at the hospital since he had missed his session the night before. This is another thing I don't understand. When the call came in Scott was at his heaviest wet weight Wet weight for dialysis patients is the amount of flui...d they put on in between dialysis treatments. For those that don''t know what kidney failure does as a whole - when you kidneys stop working the person stops urinating. Urination is a way for the body to expel fluid from the food we eat and the beverages we drink. When you can't urinate you can't get rid of the fluids. As the body breaks down what it's given all of the nutients from the food build up and become toxic...and deadly. If kidney patients did not get dialysis then every single one would die within a seven day period. Back to Scott So Scott was at his highest wet weight because he get's dialysis on Tuesday, Thurday and Sunday overnights. On Sundays he's not had a treatment for almost three days. One of the first things they did when he went in for the transplant was to weigh him. He was 12 pounds over his dry weight of 203. At the transplant team...s request Scott had just lost 10 pounds the previous few months to get to the 203...that they requested. We tried to explain that this was Scott's wet weight, not his dry weight, but we could tell they were concerned about it. I do not understand that once the decision was made at 8:15pm to wait until the next morning for the transplant why they did not give him dialysis at the hospital? If the surgeon was concerned a 2 to 4 hour dialysis session overnight there would have taken care of the extra fluid. The only response I got was on Monday and I was told that once they put the new kidney in it should start working immediately to remove the extra fluid. So once Scott got back to the room it took a couple of hours for them to come and get him to take him to dialysis. By the time he returned to the room it was going on 6pm. I tried to get some sleep, but to no avail. At that point he was released and back home we came. I think we were both in bed by 8:30pm and slept for... at least 12 hours. The next day was tough on me because I started going through the "why's?" of it all.I took me a couple of days to make peace with it. About the time I made my peace with it Scott started. It's just like anyone else going through a grieving process; shock, guilt, fear, depression, denial, anger and then finally (finally) acceptance. I say it only took a few days for each of us...that's probably an understatement. I think really until it was time for Scott's parents to arrive (second week of July) that we "snaped" out of it. The joy of it is that time does not stop to allow you to go through those seven steps. I don't think anyone really ever gets that time...and that time is needed to heal. So during this time after the first phone call we had things to take care of. Some of it to our advantage, but nonetheless gruelin...g. The transplant team called that first Friday we were home and was STILL having problems getting records from Scott's cariologists office. So I had to jump on that and get it taken care of. Once that was done the surgeon had to review all the records again for Scott's transplant. It was at this time that our transplant coordinator called us back, that next Monday, to let us know about the Pulmonary Stress Test. Scott has been an on again off again smoker for years. It was a given that they transplant team said he would have to quit. He quit last May and has been very successful in quitting. He had to wait six months after quitting to retake some of the pulmonary stress tests the transpant team wanted him to do. So last Nov, maybe Dec he went in to take the pulmonary test and he passed. That was when we were notified (three days before Christmas) that he was cleared for the transplant. Well what all of us had forgotten was that there were 2 pulmonary tests scheduled, not just the 1 he took. So we called to double check that Scott had in fact not taken it and sure enough he had not. At the time, late last year, the machine was broken. So we got it scheduled, but the earliest they could do it was two weeks out, Tuesday July 28th. Okay - damn - okay - damn!!! So were back to waiting. Now to most two weeks really doesn't seem all that long to wait...well when you're in hell, both physically and emotionally) two weeks can seem like an eternity. during these two weeks we still had all the other stuff going on. Emory offers a "Charity" program to it's patients if they qualify. They had called and asked if we would like to try and qualify - a resounding yes from both Scott... and I on that one. So we received the 18 page packet from them. all 18 pages had to be filled in and we had to collect tax documents and other stuff to submit with it. Mind you too, both Scott and I are still realling from the firt transplant call and being sent home. So I asked my Mother to help me collect everything and we had to ask Scott's parents submit to us a noterized document that they needed too - so this packet became quite the family affair. About a week later (a week past the deadline Emory sent) we had everything collected and I went down to turn it all in. On the 14th of July Scott was scheduled for a follow-up for the tonsillectomy (continued in next post August 7, 2009 (III))