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| | From:  Katie437 (Original Message) | Sent: 8/25/2003 12:42 AM |
| Hello everyone, well I thought I would tell you my story but grab a cup of coffee or whatever you like because this could take a while. lol I am 46 years old and was born on Christmas Day. I have 3 brothers and 1 sister. My mother is still with us and I can hardly keep up with her but my father passed away almost 7 years ago. They were married 47 years. I had a wonderful childhood and always feel blessed about that. I was married at age 19 to my childhood sweetheart and we had a little girl two years later. We had a great life together and were as happy as could be but then he died in an accident at work when our daughter was 3 years old. I was pregnant with our second child at the time but that was not meant to be either. I buried him on Friday and lost the child on Monday. Needless to say it was a terrible time in my life. It has been 22 years since then and I can honestly say now that I can look back at the memories of my life with him and think of it only with smiles, not tears. I don't ever dwell on the death but only the life. I was alone for about 3 years and then met a wonderful guy for the second time in my life. I have been so blessed to have had 2 such wonderful loves. When I first met my current husband he told me that he had the possibility to have a genetic kidney disease that he had not been tested for yet. It ran rampant in his family and he felt that he needed to know if he had it. He did not want me to be widowed twice before I was 30 (he did not know much about the disease yet) and felt I had a right to know before our relationship progressed. Of course being in love, nothing else matters. His father had passed away from it, also his fathers only brother, his grandfather, and who knows how many before them. Of the living relatives, of which there are only my husbands brother and his cousins, all of them have it. It is called Polycystic Kidney Disease or PKD. You have a 50% chance of inheriting the disease when one parent has it. If you do get it, 60% of the people progress to kidney failure and the only treatment is dialysis and or transplantation. There is no cure and the only treatment before failure is treating the symptoms of the disease such as high blood pressure and then all of the renal failure symptoms as they come up. There are many. We also needed to know so that we could make an informed decision as to whether or not to have children together knowing of the 50% chance that our child would have it. We of course found out that he did have this disease and back then he was told that there was nothing they could do and for him to just go live his life doing whatever he wanted to do until the disease progressed. We decided not to have children together since every member of his family had not escaped having the disease. Some with PKD decide to go on and have families and hope for a cure if they pass it on or at least some form of treatment but our genetic counselor helped us make the decision that was right for us. I still believe that it was. His brother chose to have children and that was right for them, there is no right or wrong, only what is best for each individual case. Together we raised my daughter from my first marriage. Our lives were very normal for 19 years and happy as could be until the disease reared it's ugly head last Christmas when he became ill. He had a few problems over the years with kidney cysts rupturing and being very painful but not many. It progresses so slowly that your body makes little adjustments along the way until it can't take it anymore and you go into renal failure but as it progresses you don't notice major changes to alarm you. Now the disease was in full force and he was very ill. We walked into the doctors office knowing that he would have to start on some medications but never dreamed that we would walk out knowing that the time for a transplant was here. We now had to start thinking about all of the testing as well as trying to keep him comfortable. He was able to work for a few months longer until the doctor said no more. The doctor set up all the testing that needed to be done and we went off to the Cleveland Clinic for the tests to be done. When my brother found out that he was in failure, he was my hero and offered to get tested to see if he could donate. Once my husbands tests were all done and he was accepted as a candidate for the surgery, my brothers testing started. We could not beleive when we got the call that they were a match. Since Jan. my husband has been very ill and they have decided that his original kidneys have to come out as well as putting in the new kidney. This is usually not done for a normal transplant but with PKD patients it is sometimes, due to the sheer size of the diseased organs. They crowd the abdomen and cause all kinds of problems. The numerous cysts also can bleed and get infected and it is very painful to have the bleeds. Most of the time when the decision is made to take both kidney's...called a bilateral nephrectomy...they do that surgery about 6 to 8 weeks before the transplant takes place and then the person is on dialysis until the transplant. Lately however, they are trying to do both surgeries on the same day but there are only a few hospitals that will do it. Cleveland is one of them. They have done 12 of them so far. Most hospitals still will not do it like this and I don't think any other country will either. It can take up to 11 hours and problems can arise that can make it a difficult surgery. Every case is different of course so it could be less time. We have waited since the beginning of the year for everyting to come together. I know it has been hard to have both teams of surgeons and all of the other ppl needed to get their schedules together and free for a day after all of the testing was done and all of the meetings were over but it has been hard to wait. It is hard seeing him so ill. Sometimes I feel like they are letting him get to the brink of death and are going to try to pull him back. I know thats not true but it feels that way sometimes. Everything was in place and then last week they called my brother and wanted him to have one of the tests redone. They said that it was in the high end of the normal range and they want to take another look to make sure that they did not miss anything. They would never do the surgery if it would cause health problems in the future for a donor. He did the test last Wednesday and we will find out next week if it is ok. If it is then the surgery will go ahead and is scheduled for Sept. 24th. It has been a long journey with a lot of pain. It has been so stressful and also during this time was when my daughter was carrying the twins and was on bedrest since the 26th week. I have been so worried for all of them...husband, daughter, babies....it was overwhelming at times. Thank God, she was able to carry them and deliver them by C section a month ago today. Everyone is doing fantastic. Soooooo, *told you this was going to be a long story* I am just waiting for all of this to happen and I will update as things go along for anyone who is interested. It is nice to be able to take ppl on this journey with me and not feel so alone. I don't like to talk about my fears at home, he does not need the stress so this is my outlet. If your still reading then thanks for listening to me. I hope this story will have a happy ending....or should I say a new beginning! | |
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Thank you so much Shelley! The prayers and well wishes were truly what kept me going through all of those dark months. I really believe that the prayers are what pulled him through the year. You are in my prayers as well. So after the 3 months in ICU we spent the next three months on the 11th floor just fighting infections, placing drains when needed, doing dialysis and just trying to get him stronger. He was having some physical therapy to help him try to walk again but for various reasons he was not physically able to do much with the therapists. His bowel was still open and with all of the other drains it was difficult. He was also weaning off of the ventilator little by little. By the 6th month he was ready to have the trach removed. His hard work had paid off and he was able to breath completly on his own. By this time we had become very close to all of the ppl who cared for him. They just are not use to patients staying that long. Heck, three of our friends had been waiting for a heart transplant and two of them got them and were released ....one eight days after surgery, the other 10 days after surgery. My friend Sue's son Ricky did not make it. He was 20 and passed away on June 25th. We spent months together. She is a wonderful friend. During this time on the 11th floor my daughter came up and told us that our smallest dog named Sam who was a 2 lb Yorkie had died. He had shown no signs of problems....just grief I think. Two weeks later our other one died too. They could not live without us or each other it seems. Sam the small one was 7 and Max was 10. It was and is really sad but we just had to do what we had to do at the time. Nothing could be done about it. The next weeks bad news was that a pipe had burst in our house and had been leaking flooding our house. Ruined all the hardwood floors and a lot of other things. Craig getting better was all I cared about. I could do nothing about the dogs, and the house....well those were just things....some things could be replaced, others couldn't but it didn't matter. We were finally ready to get released from the Cleveland Clinic to a nursing home where he could start better rehab. The rehab was in Columbus so we left Cleveland and I stayed at my mothers house since she was about 15 minutes away from rehab. Our house was about an hour further so it was just easier on me. I had not been home in six months, what were a few more? After 3 days there the docs sent him to a hospital in Columbus for some problems with infection and low BP. He stayed there a week, came back for one day and was back in the hospital for another 15 days. When he was released from the hospital it was back to the nursing home. Sorry I have to stop again. More tomorrow. This is really helping me to get this off of my chest so thanks for giving me this chance. |
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The nursing home stay was for four months and it was very difficult. It was a sad place but at the same time could make you so very thankful. I use to sit outside in my car at night before I would go back to my moms for the night and just pray for all of the souls who had lived their lives in there, for the ones who were there now and for the ones to follow. I just could not understand how God could let these poor people live day after day like a vegatable, then one night I made peace with it....could have been God answering my questions but all of the sudden I thought....Who am I to even question this? When I get to heaven I might come face to face with some of these ppl who, when I tell them how sorry I was that they lived their lives like that would say....Oh no! Don't feel sorry. God gave all of us a special place on earth that you or others like you could not come. Not of heaven, not of earth but a special place. It may sound silly but that is how I dealt with the people I passed every morning, noon and night. All I can say is that I spoke to each and everyone that I passed so that in some small way they would know I cared. Craig worked in the mornings doing physical therapy trying to learn how to use all of his muscles again. He was so weak but since he was still on IV nutrition there was only so much strength he would get back. What he needed most was to get well enough to go back to Cleveland to get the surgery to fix his bowel so that he could eat again and also so they could take out the failed transplanted kidney that was causing so much infection. It was breaking down, liquifying and tunneling it's way out through old drain sites. We needed to get him strong enough. We thought we had a surgery date and finally left the nursing home for Cleveland thinking that we would go up for the surgery and then go home for the first time from there. We told everyone goodbye and went on up. They ran some tests and decided that it was just too dangerous to do any surgery on him because he had become so malnourished. I did not understand how that was possible since all the nutrition he was getting through TPN was prepared by a pharmacist who made it according to what his body needed as shown by his lab work. They told me that TPN can only do so much and then ppl can hit a plateau and that is what Craig had done. Now we were told to go back to the nursing home for a few more weeks and we would see what happened with some extra nutrients they were going to try to give him by mouth. Just the ensure type drinks only more suited for ppl with no kidneys. We did that for a few weeks and when it was time for us to go back up to Clev. he told me that no matter what happened, he was not coming back to the nursing home, that he wanted and NEEDED to go home for awhile. I agreed that we would do what ever it took to get him home. The next trip to the hospital still revealed that he was not well enough for surgery so after about ten days in the hospital things were in place for us to come home for the first time. I had been changing bandages, packing incisions, building pouches, just generally doing everything for him because of the nurses being gracious enough to take time to teach me all of the things through the months that I needed to know. It was more that I just watched everything but I did have the ET nurses that took care of his pouch teach me how to build them. They were much different than the regular stoma pouches because the area or opening was so huge. When we left the hospital I had all of the supplies delivered for me to hook him up to his nutrition every night for 12 hours through his hickman catheter in his chest. I cleaned the site and injected the vitamins into the bag, flushed his catheter with heparin, primed the pump, connected him, hung the bag and he would be good for the night. It was not hard at all as you can see, just time consuming with all of the other things I had to do for him. Each pouch took about an hour to build and attach. His doctors all thought that he still needed too much care for me to handle at home but I knew I could do it. We had a home nurse that came in twice a week to keep me in supplies and check on how things were going. Through all of this time I was also getting him up at 4 in the morning to get him ready to go to dialysis which was an hour away three times a week. I would sit in the car during his four hour treatment because they don't allow anyone in. They said the state was cracking down because dialysis is a proceedure where blood and blood products are involved. They would let me come in to unhook him from his TPN and flush his catheter during his treatment but then I would go back out to the car and wait.................... Have to stop again.....more later and I hope it is alright to make such long posts....Hugs to all |
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Katie, I hope you can print this after you have it all written down. It's something your family would treasure. It's a beautiful love story you are telling. I found the passage describing the "special place" not of heaven and not of earth where the nursing home patients were dwelling especially touching and something I will always remember. Who knows, it may help me or someone else get through having a loved one in such a residence. Thank you very much for the gift of your story. God bless you and your husband. Chevy Gal PS--Please keep writing. You have a gift. |
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Thank you so much Chevy Gal for your kind words. I have books of daily journals through all of this. There is definately a novel in them. lol It touches me that my words about the nursing home residents is something you will keep with you. I know that it will always stay with me and I sure hope that it really turns out that way in the end. It gives me comfort anyway. I will be back later this afternoon to write more about our journey. Hope you are having a great day. Katie |
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The time I spent waiting in the car was spent writing and thinking about all of the things that were going on in our life. When we left for Cleveland last September our new twin grandchildren were just a few weeks old. Our oldest granddaughter who was six when we left and just starting first grade could not understand any of this. I explained to her when we left that her "Poppys" kidneys were broken and that her great uncle Gary was going to let him have one of his. She wanted to know what kidneys were and I told her they were like washing machines for our blood and that we all needed to have clean blood so we could feel good. She knew that we would be gone a few weeks but didn't understand why those weeks were turning into months so I had her mom and dad bring her up and I showed her where I was. I could not do that for the first couple of months because he was so near death and was not able to talk with her. He was on total life support with all the tubes, drains, pumps, machines and all that goes with that as well as having the situation just be so tense. I did not want her to see him like that. I let her walk the halls with me and showed her where her grandpa was. I took her to my room in the surgical center where the transplant families can rent rooms just like hotel rooms, and let her stay with me for a night. Now at least she could picture where I was and that I was not just out there somewhere. Later her twin brother and sister as well as her 5 year old step brother were brought up. We got to see the twins a few times through the months. The nurses in ICU would let us bring them back to hold up to let Craig see them. This was towards the end of the ICU stay. He still was on life support but he was awake and able to communicate some. So funny too they smiled right on cue. Two babies with one minute to make their impression. First one was held up, a big smile for grandpa, then the other with some baby coo's thrown in for good measure. When we were first in the nursing home the kids were brought over and it was so bittersweet. It was so good to see the babies who were within weeks of being one year old but so sad that they did not know us and shyed away. It about broke our hearts even though we knew that it was only normal and that we would remedy that as quickly as possible. The older kids were not quit sure about their grandpa either. He still had a lot of equipment and "things" on him. I remember being little and being afraid of my sick grandma so we made it as easy on them as we could.
After we got to go home sometimes when Craig would come out of the dialysis treatments he would be so weak that I didn't know if I should take him home or just go to the emergency room thinking something was really wrong again. I let him be the judge and he would always feel a little better after a few hours home. I knew that this was about as good as he was going to get until he had the next surgery. He still was a walking infection from what was left of the kidney and had drains coming out of his back and belly catching the infection. He still had a G tube in his stomach with a gravity drain that caught most of the fluid that he drank. What did not come out of there was passed along until it came out through the fistula pouch which also was attached to a gravity drain. The gravity drains are like the ones that are attached to foley catheters where you see the urine caught in a bag. He had a hickman catheter for nutrition as well as for medication that was on the left side of his chest and a quentin catheter for dialysis coming out of the right side of his chest. He had incisions that were still being packed. Still you what you always noticed first was his smile that he was never without. I was so proud of how incredible he was through all of this. He never had an unkind word for anyone through all of the months in the hospital. They all loved him and could see easily why I did so much. Taking care of him at home was a huge job because of all he needed done. I was pretty tired when it came time to finally go back up to Cleveland to get the surgery he so desperatly needed to get any better. It was hard for me to realize after seeing him so close to death for all of that time to look at him now walking a little and not to think he was so much better, but in reality he was still a very sick man and it hit me hard sometimes. He was coming up on his 43rd birthday.
....will write more later
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| | | From: Dan | Sent: 9/1/2004 1:50 AM |
This really is a remarkable story. Don't stop, hon. We're all pulling for you and your husband. By the way, I'm Dan, one of the managers here. Sorry I didn't post sooner to respond to you. I should have, but I've been mesmerized by the story. You're in my prayers. Healing hugs and lots of love, Dan |
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Thanks Dan. It is so nice to know that you are all pulling for us. So we tried to get into a daily routine so that things would not seem so crazy. I learned a lot and was also so glad to be home again. It was a difficult adjustment not to have my two little dogs here with us. We loved them very much. You all know how they become such a part of your family. It was, and is, very sad. Our next trip to Cleveland was to do more tests to see if the surgery could finally take place. So I packed up all of the medical equipment that he would need and we headed out hoping to hear that the surgery would be soon. The doctor that was going to do his abdominal surgery finally felt that he could withstand the surgery but just barely. The lab numbers that he goes by were spot on his cutoff point. One point lower and we would have to wait longer. From his point of view, he felt that what we should have done first though, was for the transplant surgeon to go in and remove what was left of the transplant and clean out all of the infection and then we would talk about the other surgery. Craig was so disappointed. He wanted more than anything to get his bowel closed up. He felt so disgusting. The pouch smelled so bad and no matter how clean we kept it or how tightly we sealed it the odor was still awful. Remember, this was not like a regular ostomy. It was very unusual. I felt so sorry for him. He had infection flowing out into drains that had to be emptied and the pouch on the front of his body that had to be emptied and cared for....who would't feel awful! All of those smells. He hated that I had to be the one doing all of this stuff for him, at the same time he was glad because it was all so embarassing to have strangers care for you like that. I just kept reassuring him that I was fine with it and that having him here to be able to care for him was such a gift that nothing would bother me. It was an honor. He wanted a shower in the worst way since it had been almost a year.......can you imagine. You can keep someone clean but it is just not the same. He was worried that the time between surgeries was going to be weeks and he felt as if he could not go another single day like this. We went home and the transpant surgeon called and told us that he felt differently about doing two surgeries and felt that they should do them both at one time. I trusted him so completly..he had been the primary doctor taking care of him through all of this and I am just sure that Craig would have died without his care. He was also always there for ME every step of the way. He truly made me part of the team to get Craig through this. He treated me with such respect and care through all of those months. He is truly my hero. He talked with the other surgeon and the decision was made to go ahead and do them both at the same time. We did not know if it would be successful and if the bowel surgery would even work. They scheduled the surgery for the 22nd of July. They said that they wanted the whole day set aside just for Craig and would do no other surgeries that day. They warned me that they thought that it could be an all day thing. I was not looking forward to him being wheeled away from me again. He was still so weak. We got all packed up and there we were again. Back in the place that we had spent so much of the year. I knew soooo many ppl there it was ridculous. Nobody should ever have to spend that much time and get to know so many people at any hospital. The fountain out in the front started to feel like my own backyard. I would sit there in the evenings before going back to my room. I watched the seasons change. I watched buildings go up around us, yes, even in the Cleveland winter, and I watched the cafeteria get closed down and remodeled. I spent all of the fall, Halloween, Thanksgiving, Christmas, New Years, Valentines Day, and St. Patricks Day up there. (Memorial Day and the 4th of July was in the nursing home.) I was so thankful in a weird way that Craig was asleep for most of it. Of course I wanted him well but since he had to be there I am glad he does not remember much. Know what I mean? Now here we were again. Since he had been released to the nursing home we had been sent up a few times and it probably totaled about a month of stays. I was so nervous knowing that this was for another big surgery. I have to stop for now and I promise I will finish this up soon. I am sorry it is taking me so long. Hugs |
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Oh my goodness, Katie, you have made my life seem like a paradise! I feel soooo sorry for Craig,  I can't even imagine how badly he must have felt throughout this ordeal! I should be ashamed for ever feeling sorry for myself! YOU ARE A HERO. God will certainly bless you in His time. A newbie, K. |
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 Geez Katie, I use to live in Cleveland (grew up in Wadsworth, about 30mi. south of Cleve.) so I am fully aware of how much driving this whole thing has entailed. . . especially in the winter!!!!!  That's a 3 hour drive from Cleveland to Columbus, let alone all the rest of the traveling . . . I am so sorry this all has happened to your husband & you . . . I'm really glad you have found us to lean on . . . we don't care how long your story becomes, we'll read it . . . I agree that when you finish, you should print it off to save for posterity . . . I certainly hope after all of this that Craig is doing better . . .  . . . Patiently awaiting the rest of the story, Magic Lizzy  |
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Thanks K and Magic Lizzy. It is so weird that when you hear about things like this you just can't imagine how you would deal with it but you do. I think God just gives you the strength and you take it minute by minute. Also Magic Lizzy I did not have to drive at all because I never left him. I stayed right in the hospital with him for the six months that he was in Cleveland. I rented a room in the surgical center so I could just walk through the hospital every morning, spend the whole day and evening with him and walk back at night. The first 3 months in ICU though we were only allowed to be in the room from noon to 3, 4 to 7 and 8 to 9. So I would sit outside in the hallway between visitin hours waiting to go back again. Still I got to sit with him for seven hours a day. The next three months were easier because when he had a regular room I could stay all day. The surgical center had a Transplant Hospitality Unit that you could rent rooms in. They were just like hotel rooms but you took care of your own things like trash, towels, bedding and such. They charged $40.00 a night which was so much cheaper than the hotels. They had a family kitchen and laundry facilities too. Sooo that is where I lived. When we came back to Columbus and he was in rehab I stayed with my mother because it was close to the nursing home. Our house is about an hour southeast of Columbus. I lived there for four more months. When we came home neither one of us had stepped inside our house for a little more than ten months. |
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Soooo, we had 3 weeks at home after being gone for ten months and it was back up there again. We both wanted this surgery done so bad but that was how we felt about the transplant and getting his original huge kidneys out and look how terrible all of that turned out. No matter how bad he wanted to be fixed, he and I were still terrified. Things do go wrong. He knew that he could not live like this though so it was going to have to be just a huge leap of faith. Once again we would hold hands and jump into this together. We got him settled and found out that they wanted to do yet more tests before the surgery so they would not be taking him to surgery until Thursday. We got there on Monday. Tests always scare us because that is where they always find reasons not to move forward with things, or find out more is wrong than they thought. This time would be different. All of the tests came back that the surgery would be a go. His hospital room was like the lobby. People from all over the hospital were stopping in to see him. He had captured so many hearts along the way. He was such a miracle to have survived this. One of the doctors told me that we must have a lot of people out there praying for us because that could be the only explanation for him making it through. When some of the medical people would tell me what usually happens, what clinically should happen, what probably would happen I would just think to myself that God will be the one to decide....none of you will. If any of you have ever been a patient in the Cleveland Clinic you know that they have teams for everything. When he was in ICU, for the seven hours a day that I visited him there was always someone coming and going. He had the transplant team, nephrology team, dialysis techs, infectious diseases team, cardiology team, TPN (liquid IV nutrition) team, ICU specialist team, ET team for his pouch, respiratory team for his respirator and later his trach, dermatology team, psychiatry team for long term ICU patients and I am absolutely positive that I am forgetting some. So with meeting so many people through the months they were all anxious to come in and see how he was doing. It was really something to see! You don't realize how many lives you touch until you get away from it for a while and then go back. Surgery day came and I let him go through those doors once again. This time I knew everyone so well that it was a more peaceful feeling of him being with friends and people that I knew without a doubt were pulling for him with all of their might and wanted to do this for him in the worst way. They had told me it would be an all day thing. The hours ticked by and finally about five o'clock they were done. Much sooner than I thought they would be. I was so nervous that they had not been able to do what they needed to do since I thought the surgery would not be finished until late in the evening. Thank God they came out and told me that they were finished early because everything went SO well! He was supposed to go to ICU after the surgery for a day or two but he was so stable that they were thrilled to tell me that they could not admit him to there because his condition did not warrant it!!!!!! I could not believe it. They took out the old transplant and cleaned out all of the infection and then went on to fix the bowel. Everything went so perfect. The horrible pouch was gone! The drain in his back was gone but was replaced with one in his belly that was huge. It was an irrigation pump that pushed saline through the cavity and was sucked out through wall suction. They were trying to keep the pocket where the kidney was, deflated so that the infection would not build up again. The incision had 3 open sections that were being packed along with the big drain. The belly incision was huge too. Kind of shaped like an anchor. He was one sore pup when he came back but so thrilled that he was alive and fixed like a normal person again. We both remembered the incision from the last surgery. There were four big holes.....big enough to stick your fist into that were being packed. When he was still in ICU and mostly asleep he would wake when they were packing it and think that he was shot a bunch of times and those were the holes. Weird dreams all the time in there when he came to. The next couple of weeks were spent with him in bed because of the big drain. It was just too much for him to move. The pain was horrendous and the docs did not want him moving. I was afraid that all the work he did to get to be able to walk again was going to go down the tubes. I was prepared for them to want to get him up and walking the day after the surgery like they do with most surgeries unless your in the ICU. So that was bothering me. We fell into our old habits and daily routines and just waited for things to heal. One by one things were starting to be pulled out. He had some problems in the beginning with keeping anything liquid down so they had hooked him back up to his liquid nutrition. The day he didn't need that anymore was really thrilling. It had kept him alive so we had a love hate relationship with it. Finally the big drain could come out and he could move some. The physical therapist came in and had him walk to the door. She said "well I think I am going to recommend that you go back to the nursing home for some rehab for awhile". Craig just about #@$%. He looked at her and said "I am sorry but there is no way. You come back tomorrow and I will walk down the hall with you. I just had the drain out this morning and this is the first time I have been up in two weeks. I still was not back to normal yet when I came in for this surgery so give me a minute!" LOL He said "please, we have been gone from home for almost a year in hospitals, just give me a chance. We need our home and family." So, she did. The next day he did his best and walked a little down the hall. After 15 days we were ready to go home to stay. Of course we would have to come back in a couple of weeks but who cared. It would just be a day trip to get staples out and his hickman catheter pulled out. They wanted to leave that in just in case. Sorry but I am really tired and have to stop again. Thanks for reading and thanks for caring. Hugs |
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Katie, I'm sorry it has taken me so long to reply to your post but I have been very busy in school. That probably seems like a normal thing for a 24 year old, but I had a liver transplant last year after being sick for just 48 hours total. I had a very rare form of liver failure that happens from taking tylenol (they are not completely sure but its the only thing they found in my body that could possibly cause it). I want you to know that while I dont know what YOU went through I do have a great understanding of what HE went through. I am most certain that it was harder on you, because with me I had no clue what was going on. I only had to stay in the hospital for 3 1/2 months but that was long enough. I got extremely blessed that the man who donated his organs died at just the right time. They disconnected him from life support five days before he died. If he would have died when they disconnected him I wouldnt have even been sick. I know how people whose oran fail from natural causes look upon people whose organs fail from medications but I want to assure you that I did not OD, my body just couldnt handle the tylenol. Physical therapy was the worst. After waking from a coma I was told for the first time that I was no longer a normal 23 year old that I had a transplant and my life would always be different. Ofcourse I didnt start physical therapy until after those 3 months but when I did it was horrible. I'm sure your hubby has more scars than the normal kidney transplant recipient, the liver tp scar goes from side to side and from belly button to sternum (I call it my mercedes benz cause its that symbol). It was torture to sit. The reason I wrote this is because I want you to know just how great I'm doing. As you know from your friends who had transplant, things get alot better. You havent posted whether he had a second transplant or is still waiting. I am praying that things are good, I know first hand how good prayers work. The drs said I wouldnt make it because livers arent available that fast but I had hundreds of people praying for me and a miracle happened. I was wondering if you go to a transplant support group site, they are a great help to me. If you want to email me feel free, I love to tell my story just as much as I love to hear others. If your hubby has any questions about meds or anything else just ask. Take care, Cece p.s. please visit the photo album and look at the pictures of my donor! |
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CeCe thanks for your encouraging words. You have really been through it for someone so young. I am sorry that something like that had to happen to you. We are hoping that Craig won't need a liver someday also. He has Polycystic Kidney and ppl who have that genetic disease can have multiple liver cysts too. Most times ppl just live with it as it does not usually impair the function of the liver. Craigs liver is very cystic but the docs have told us that it probably will not have to be transplanted. Usually it seems to me that women have more problems with the PLD. The liver can get so huge from all of the cysts. Sometimes it starts to interfere with other organs and starts pushing things around making it difficult to eat or breathe. Just like Craigs kidneys. A normal kidney weighs about 8 ounces each but his were about 25 lbs. They took them out thank goodness. What meds are you on for rejection? Craig was on his for only nine days after his transplant and then his complications started. They had to discontinue them so that his immune system would come back up. He needed that so that he could help fight the massive infection to live. I do believe he was on prednisone for a while in ICU but that was all and that was stopped about 3 weeks into the ICU stay. We are supposed to call the transplant team this week to have him re listed. I am scared to death. He will be at the top of the list so it could come soon. I hope you have a wonderful long time with the gift of life that you received. It was such a blessing the way things worked out for you. You now have an angel hero watching over you all the time! God Bless you and hope to talk to you soon. P.S What organ transplant group do you belong to? |
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I meant to say "Polycystic Kidney Disease" in the above post...... |
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Back to the story......They also wanted to keep his hickman catheter in so that he could get IV antibiotics for the next month or so. We got home and it was so exciting. Of course he had a lot of surgical pain to work through but he felt like he could do anything in order to be home again and so happy just to be alive! I learned to pack all of the new incisions. We were happy that he had the G tube out that was surgically put into his abdomen for the last year. We were happy that I no longer had to hook him up to his nutrition for 12 hrs each night. No more fistula pouch!! No more drains! Well, just one but no big deal. lol So many things were left behind. He had come to hate the very things that he needed to keep him alive. They were all saving his life while at the same time keeping him a prisoner from it!! I felt the same way. A real love hate thing. After we were home we would just sit and look at each other not believing that his body was so free from everything and that he was really here! We tried to slowly adjust to a new schedule. He was able to get into a dialysis treatment center that was only a half an hour from our house so that made it much easier for me. I could drop him off and come back home for awhile. I felt like I had just worked for a whole year without one day off. It was true. I would get up in the morning, shower and go to him and stay until late in the evening.....everyday.......all year.......whew. We made another appt to go back to Cleveland to get the stitches and staples out and hopefully to have the hickman pulled out. It turned out that the people in dialysis gave him his antibiotics right through dialysis and the second one after his treatment so it wouldn't get dialyzed out. The first one was matabolized through his liver the second one would be lost through dialysis so it was after. They used his dialysis access to give it, so his hickman just became something to keep clean and flushed and was not used for anything. It was a big risk for infection. The docs agreed when we saw them so they did take it out! The last drain was pulled so for the first time in a year he only had his dialysis access in his chest and nothing else except for the packing in his incisions. He was more free than ever! Every day he is getting stronger. The transplant team wants us to call them next week to get him back on the list for a new kidney. It is such a shame that my hero brother gave a kidney that was never destined to work for my Craig. My brother assures us that he would do it again in a heartbeat. The kidney is gone but not the love that he gave it with. Craig has good days and bad ones. Life with no kidneys is very difficult with all of the fluid restrictions because of no urination. He is still recovering and trying to get some stamina. He still gets so tired. Dialysis days are the worst. He is exhausted after. Today he is feeling really bad and getting sick so I don't know what that is about yet. I am always terrified when things come up because we never know what could be happening. I am really worried right now. But we will get through whatever it is. So this story is still ongoing. I will keep you all up to date and let you know next week what the transplant team wants to have him do to be listed. Thank you all for reading this far. There was just no way to cut this short.....soooooo much has happened that you would not believe how much I have left out!!! Thank you again for being here and letting me have a place to come. Hugs to all~ |
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