he had back in April/May. He had dialysis the night before the appointment and came home and went to sleep as he usually does. I woke him up to go to the appointment and he complained he was not feeling well. This is also usual after dialysis - so I pushed to the point we had a big fight - but got him out the door. Whe...n he got to Emory Midtown (that's where the Drs office is) he pulled up in front of the parking deck and just about passed out. Security came over - pulled him out of the car and took him around to the ER. Apparently dialysis had taken an extra kilogram of fluid off - the result of this is that the blood pressure goes dangerously low. He ended up missing the doctor's appointment and staying in the hospital overnigh for them to get his BP back to normal. The addtional hospital bill - big thanks to dialysis for the goof up - and never mind the stress and duress - were two things we really didn't need. Jumping ahead to July 29th dialysis session Scott woke up Monday morning to realize they had not taken all the fluid off that they discussed the previous evening. It's a joint effort between patient and the tech. So he had an addtional 3 kilos of fluid on him plus whatever he would put on prior to his return on the next Tuesday night. Normally no big deal...except tha...t before he returned to dialysis Scott was scheduled to take the Pulmonary Stress test and having an extra 3 to 6 kilos of fluid on him might in fact mess up the results of the test! ARGH!!!!! I spent Monday afternoon on the phone with his current clinic, his previous clinic as well as his nephrologists trying desperately to see if any of them could fit him in before his test on Tuesday. The answer was an resounding no. Meltdown management is a course I think I could tech at this point in my life. So we called the pulmonary office to reschedule (they did confirm that the extra fluid would skew the test results). Luckily the were able to get Scott resceduled for that Friday...just three days later...just three more days to wait. Thanks Dialysis!! That was last Friday. We went, Scott took the test and we were told the results would be in the Emory records system (they're computerized so any Emory office can pull ALL of Scott's records at any time - LOVE THIS). The techs that administered the test said that Scott did really great and the results of the test were great results. So Monday...no news. Tuesday no news, Scott asked if we should call. I suggested we wait till Wednesday. Wednesday afternoon the transplant team called to let us know that the test results still had not been posted. Okay, should we call...would that help. We tried Thursday to call and we couldn't get through to the right person. This morning the transplant coordinator called to let us know they STILL did not have the results. It's been another week!! ARGH. I did get in touch with the correct person this morning and she told me that the results of the test had to be retranscribed and then signed off on by a doctor. She promised though that it would be completed today and faxed over to the transplant coordinator. So that's kinda where we are today. A few other bumps along the road during the past three weeks. Because we are so close (at lea...st we keep trying to tell ourselves that) I've not picked up any freelance work. Our power company notified us that our power bill will be increasing $60 a month starting in August. Well I can certianly tell you that the extra $60 is not &60 we have right now to budget in. Thye won't work with us at all - oddly all of the utility companies offer no programs for disabled people - which I find a true shame. I will be tackling this once we're on the other side of this. Another incident that happend just the other day was the city notified us that the grass was getting to long in our front yard. Well the last thing I want to do with it 90 degrees outside is cut the grass. We have a neighbor kid who wants to cut it for us...but we don't have the money to pay him. I actually feel worse for him because I remember being his age and wanting to earn the money. On the better side of everything we've had a month of parents visits. Scott's parents were here for about a week with us and then right behind them being here my Mom has been here for a week. Always great to get to spend time with them when we can :)
So this is why I've not been posting the past four weeks...I hope everyone understands.
Friday
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))
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))
August 7, 2009 (I)
Let me see if while it's quiet I can get a little done here...
The sunday, July 5th, we got called into the hospital was one of the longest days for both Scott and myself. We arrived at Emory at 2pm and the rest of the day was spent running tests and meeting various people with the transplant team. They wouldn't tell ...us if the organs had arrived at Emory yet, so we spent from 2pm until 8:15 pm waiting (let me stress the waiting part) for them to let us know if the transplant would happen that day or be postponed until the next morning. Finally (FINALLY) at 8:15 it was decided that the transplant would happen first thing Monday morning. In the mean time Scott's parents and sister were doing the first part of their drive from Florida and Scott's local aunt and uncle were on standby waiting to see when they needed to leave to arrive at Emory for the surgury. I was able to leave the hospital once the decision was made, to come back to the house to pick up the dogs and get them dropped off with my friend Tonya since we expected the next few days to be grueling. It was my Mom that pointed out to me that we needed to do something with them...and she was right. Thanks Mom and Tonya! I arrived back at the hopital around 10:30pm Sunday night. Mind you - Scott was asleep when Emory fir...st called Sunday and since we didn't know when the transplant might happen he didn't eat or drink anything. When I left the hospital he was one grumpy grump because he's not eaten since Sat night. The hopital wouln't let him eat until it was decided he would have the tranplant the next morning. On a personal level I noted that Emory realizes that family can be a great resource for information about the patient. One of the things I've encountered moving through the past three years is that most doctors only deal with the patients, excluding family most of the time when it comes to the illness. I think they for...get that family usually ends up being the sole caretaker for the patient - and in Scott's case that's me. I know his illness and history better at this point then he does. Emory's transplant team (all 8 or so that we met during our day and a half there) listened to me, asked me questions and then asked if I had any questions...I was floored. After three years I just got to the point that I thought all doctors and various medical staff personal were the same. Emory also have the transplant room set up for family. The room was very large. It included a full bathroom with a shower and a reliner that pulled out into a bed. This may all sound selfish on my part...but put yourself in my shoes. If it were your husband or wife, your child or a parent wouldn't you want to stay as well. Truely these small things make such a difference for the whole experience. when I returned to the hospital Scott updated me on the few staff visits he hd while... I was gone. I got the bed/chair ready and we were lights out by 11pmish. We knew the next day was going to be really, really long. As expected (no matter how comfortable the bed/chair is) the staff was in at least once an hour checking various things. Scott can sleep through just about anything, I however am a light sleeper (probably more so since Scott went into kidney failure) so I think I got one solid hour of sleep between 2and 3 am. Otherwise I was up everytime they came in. Scott and I both woke up around 5:30 expecting them to come and get him for the surgury at any time. I called his parents at 5:30 to let them know that they should continue heading north. About 6:15 they came to collect Scott to go to pre-op. I went down with him. It's always a bit sureal in the pre-op and post op areas. So much activity going on. With Emory the staff is doubled because of the students. for those of you that may not know Emory is a teaching hospi...tal. So always so many doctors, techs and students running around. Once we arrived we had an onslaught of people coming over and doing their specifics with Scott and I getting him ready for the transplant. We found out during this time that some of Scott's cardiologists records were missing from his file at Emory - and the surgeon wanted these resuts. Then the surgen came in to see Scott - this was the first time either of us had met him. One of the very first things I noted was that he wore a pin on his color that was a "Donate Life" logo - Loved it!! (continued in next post)
The sunday, July 5th, we got called into the hospital was one of the longest days for both Scott and myself. We arrived at Emory at 2pm and the rest of the day was spent running tests and meeting various people with the transplant team. They wouldn't tell ...us if the organs had arrived at Emory yet, so we spent from 2pm until 8:15 pm waiting (let me stress the waiting part) for them to let us know if the transplant would happen that day or be postponed until the next morning. Finally (FINALLY) at 8:15 it was decided that the transplant would happen first thing Monday morning. In the mean time Scott's parents and sister were doing the first part of their drive from Florida and Scott's local aunt and uncle were on standby waiting to see when they needed to leave to arrive at Emory for the surgury. I was able to leave the hospital once the decision was made, to come back to the house to pick up the dogs and get them dropped off with my friend Tonya since we expected the next few days to be grueling. It was my Mom that pointed out to me that we needed to do something with them...and she was right. Thanks Mom and Tonya! I arrived back at the hopital around 10:30pm Sunday night. Mind you - Scott was asleep when Emory fir...st called Sunday and since we didn't know when the transplant might happen he didn't eat or drink anything. When I left the hospital he was one grumpy grump because he's not eaten since Sat night. The hopital wouln't let him eat until it was decided he would have the tranplant the next morning. On a personal level I noted that Emory realizes that family can be a great resource for information about the patient. One of the things I've encountered moving through the past three years is that most doctors only deal with the patients, excluding family most of the time when it comes to the illness. I think they for...get that family usually ends up being the sole caretaker for the patient - and in Scott's case that's me. I know his illness and history better at this point then he does. Emory's transplant team (all 8 or so that we met during our day and a half there) listened to me, asked me questions and then asked if I had any questions...I was floored. After three years I just got to the point that I thought all doctors and various medical staff personal were the same. Emory also have the transplant room set up for family. The room was very large. It included a full bathroom with a shower and a reliner that pulled out into a bed. This may all sound selfish on my part...but put yourself in my shoes. If it were your husband or wife, your child or a parent wouldn't you want to stay as well. Truely these small things make such a difference for the whole experience. when I returned to the hospital Scott updated me on the few staff visits he hd while... I was gone. I got the bed/chair ready and we were lights out by 11pmish. We knew the next day was going to be really, really long. As expected (no matter how comfortable the bed/chair is) the staff was in at least once an hour checking various things. Scott can sleep through just about anything, I however am a light sleeper (probably more so since Scott went into kidney failure) so I think I got one solid hour of sleep between 2and 3 am. Otherwise I was up everytime they came in. Scott and I both woke up around 5:30 expecting them to come and get him for the surgury at any time. I called his parents at 5:30 to let them know that they should continue heading north. About 6:15 they came to collect Scott to go to pre-op. I went down with him. It's always a bit sureal in the pre-op and post op areas. So much activity going on. With Emory the staff is doubled because of the students. for those of you that may not know Emory is a teaching hospi...tal. So always so many doctors, techs and students running around. Once we arrived we had an onslaught of people coming over and doing their specifics with Scott and I getting him ready for the transplant. We found out during this time that some of Scott's cardiologists records were missing from his file at Emory - and the surgeon wanted these resuts. Then the surgen came in to see Scott - this was the first time either of us had met him. One of the very first things I noted was that he wore a pin on his color that was a "Donate Life" logo - Loved it!! (continued in next post)
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