I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kellyt on May 21, 2008, 03:32:34 PM
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Those who have seriously offered, anyway. They are not going to send my brother to the "committee". Good thing he stopped smoking and got tested. I hope he takes it seriously.
So my husband will definitely admit Tuesday morning. It feels different when you know or a FACT that you're down to your last voluntary living donor. The pressure is on. :-\
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I have blood type O, the most common. But of the three people who offered to donate to me and were tested, one had blood type A, another type AB, and the third type B. The odds against that ill-luck happening were high, but then again so were the odds against my developing the type of renal disease that I did, since Wegener's Vasculitis has occurs once in 100,000 persons per year.
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Jenna had 9 donors over 3 years who offered. Then we had the internet donors to weed through. It's a daunting task. I hope you get good news about hubby!
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I really hope it all works out for you and your husband Kelly. It sure is nerve wracking, the whole process. We're just at the beginning. First blood tests for 5 of us June 3rd. I'm keeping everything crossed for you.
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I have gone through 7 who have tested, I feel your pain. Good thing they see a match already though, better than I have gotten. Why did they deny your brother, I thought it was looking good???? Praying it all goes well with your hubby.
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Good Luck kelly, We didn't have any one to get tested, so Len only knew being listed. Hope it goes smoothly for you. :cuddle;
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I am very appreciative that my brothers tested without question or hesitation. Both were a good match, but just found some unforeseen medical issues. My 2nd brother is the one who had the 24-hr BP test. Apparently, they feel he is in "stage 2" hypertension. I've never heard of hypertension noted in stages. But they feel he needs to be seen by his PCP and possibly begin medication if they can't control it with diet modification.
I thought both my brothers were in "tip top" shape and both have been declined. I'm scared because I also feel my husband is in "tip top" shape. Who knows what they'll find.
Hemorrhoids? Hangnail? Cavity? I really down. :'(
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Hang in there sister - you are on this rollercoaster and the ride is gonna continue so hang on!
:grouphug;
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My father was a match and donated a kidney to me - unfortunately, it failed three years later. My mother tested, but can't donate due to health problems. My younger brother is in denial that I have a problem. He doesn't do well with illness and hospitals.
I don't think anyone's under any obligation to test themselves or give me a kidney. It's my problem, you know? I hate to think of my relatives as a kidney farm.
~Steve
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Good luck Kelly. I hope your husband passes with flying colors. :bestwishes;
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I am hoping for the best, Kelly. Looking for a donor is one of the hardest things ever. 6 donors and no one either matches or is ruled out. Very frustrating. So, I really do hope your husband is a good match. The not knowing is so very hard. :cuddle; Lots of prayers for both of you :cuddle;
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Wishing for the best for you :cuddle;
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My father was a match and donated a kidney to me - unfortunately, it failed three years later. My mother tested, but can't donate due to health problems. My younger brother is in denial that I have a problem. He doesn't do well with illness and hospitals.
I don't think anyone's under any obligation to test themselves or give me a kidney. It's my problem, you know? I hate to think of my relatives as a kidney farm.
~Steve
I totally agree! That's another thing I'm struggling with. I hated asking my brothers. They have their own lives, families and struggles. And although I would love to get a kidney from my husband, there are several things that really concern me.
1) Both of us being in the hospital at the same time. We are self employed and we'll have to ask someone or hire someone to watch over our employees while we are in the hospital.
2) Both of us recovering at the same time. We will have to ask someone or hire someone to come by and help with certain things.
3) I'm nervous that my husband will not take the proper time to recover fully. He is Mr. Macho and although he says that he understands all the complications that we have discussed, I'm nervous he'll wake up one week after surgery and say "I'll feel great" and go back to life as "normal".
4) I'm scared that he'll have complications (major or minor). He is the money maker in this family and if he's out we could find ourselves in financial trouble.
5) I'm scared that this retarded law suit we're involved in will disrupt recovery for me and/or him.
Other than #5, I'm sure these thoughts, or similar thoughts, go through all our minds. We're all different and we're all the same. It is not my intension to demean or belittle anyone else's struggle with this frustrating process. Thank you all for reminding me that I'm not the only person who has ever, or will ever, go through this. I just haven't 100% accepted the fact that I may be on dialysis for a long time. I think I had accepted that I might have to be on dialysis for "a while", but not for a long time or even forever.
Thanks again everyone. :grouphug;
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Kelly, you have such a great attitude. Once you know if your husband is a "go", you will find the answers to all your questions. Everything will fall into place. I want you to get a new kidney so much. I'll keep saying little prayers for all to go well. :cuddle; :cuddle;
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I can't wait to meet you, Paris. :cuddle;
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Don't fret Kelly, it only takes 1 donor to be the match and your prayers iwll be answered. I pray that over all of us. IHD - we all do.
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Thanks. I pray for you guys, too. This site is always on my mind in one way or another. I'm either repeating what I've read like I'm some expert or I'm wondering where someone has been lately. :)
But this stress....aarrrgghh! I just got off the phone with my coordinator. My husband is scheduled for Tues a.m. When he talked with my coordinator over the phone he gave her his height and weight. At that time his BMI was 29.8. Cut off is 30. She said "I can't tell you to lose weight, but they will not accept you with a BMI of 30 or higher". Fine. As of this morning he's down 5 lbs and his BMI has gone to 29.2 I think. I'm super excited, right?
HOWEVER, we all know that those freaking scales at the hospital and doctor's offices are NEVER the same as home. I'm always 1.5 - 2 lbs heavier when I go to the doctor or hospital. Now I'm even more nervous because she said that come Tuesday morning when they weigh him at the hospital if his BMI is 30+ they will tell him NO and they will NOT consider him as a donor again. That's a little harsh, don't you think? It's not like he's 25-50+ lbs overweight!!! WTH?
Calgon take me away!!!!!!!!!!!!!!!!!!!!!!!!!
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My sister is a match for me, however she wants to wait. My other family members have not offered nor do I expect them too.
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Thinking of you, Kelly. This is such a roller coaster ride. Hope all goes well with your husband's tests.
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I'm sorry about all of this stress kellyt! I hope things look up soon. :cuddle; :cuddle; :cuddle;
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kellyt --
We have exhausted the list of "potential" donors for Marvin. This second time he's been on dialysis, four people tested to see if they matched (my brother, my brother's wife, my sister, and a man that Marvin coached in youth baseball as a little boy). My sister got the farthest in the testing -- she made it all the way to the last test they do here before she, too, was ruled out. My dad (71, overweight, and diabetic) threw an absolute fit when they wouldn't even test him! I told Daddy they wouldn't consider him, but he thought he could talk (or bully) his way into being tested. He's a dear man, and he loves Marvin very much. We now know that it's going to have to be a cadaveric donor for Marvin, and that's a long and hard wait. However, there's a chance, so we're hanging on to that.
I was Marvin's donor the first time, and I understand your concerns about your husband being your donor.
And although I would love to get a kidney from my husband, there are several things that really concern me.
1) Both of us being in the hospital at the same time. We are self employed and we'll have to ask someone or hire someone to watch over our employees while we are in the hospital.
2) Both of us recovering at the same time. We will have to ask someone or hire someone to come by and help with certain things.
3) I'm nervous that my husband will not take the proper time to recover fully. He is Mr. Macho and although he says that he understands all the complications that we have discussed, I'm nervous he'll wake up one week after surgery and say "I'll feel great" and go back to life as "normal".
4) I'm scared that he'll have complications (major or minor). He is the money maker in this family and if he's out we could find ourselves in financial trouble.
5) I'm scared that this retarded law suit we're involved in will disrupt recovery for me and/or him.
Other than #5, I'm sure these thoughts, or similar thoughts, go through all our minds. We're all different and we're all the same. It is not my intension to demean or belittle anyone else's struggle with this frustrating process. Thank you all for reminding me that I'm not the only person who has ever, or will ever, go through this. I just haven't 100% accepted the fact that I may be on dialysis for a long time. I think I had accepted that I might have to be on dialysis for "a while", but not for a long time or even forever.
Thanks again everyone. :grouphug;
(1) Being in the hospital at the same time -- Of course, Marvin and I were. We were put on different floors (I was on the surgical floor, and he was on the nephrology floor). We checked in the same afternoon and had the surgery the next morning. On the morning of the surgery, I went to his room at 4 a.m. and talked him into going with me downstairs and outside for one last cigarette. I'm a smoker, and I had cut down considerably before the surgery (they wanted me to totally quit, but I just couldn't). After the smoke break, I walked him back to his room (we both had IV poles in tow -- that was a site!). Then I went to the hospital chapel and prayed. When they came to get me for surgery at 7 a.m., I had been on the phone with him for about an hour (they refused to let me go anywhere that morning because they were giving me some strong stuff to flush out the kidney). Our family members spent a couple of days running back and forth from one floor to the other. I went to the ICU to see him the day after the surgery (this was also our wedding anniversary), and he looked great. I felt and looked like shit! I came home three days after the surgery, and Marvin came home the next day. We aren't self-employed, so I don't have any help to offer there. We don't have children, so that wasn't an issue, either. Advice -- this is not as bad as you might think (it was worse on our family than on us -- they had to do all the walking between rooms).
(2) Both recovering at the same time -- This was us, too! My mom and dad came to stay with us for a week to "take care" of us. They were great help, but we probably could have managed without them (don't tell them that). Before the surgery, I had done all the "big" stuff around the house (mow grass, grocery shopping and meals in the freezer, etc.), and, actually, Marvin was "up and moving around" better than I was that first week. Mom and Daddy went home for the week-end and came back on Monday. They stayed with us a second week, but that week was mostly just "visiting." We were fine. We had lots of friends dropping by with food, and I didn't need any of the meals I had frozen. My mom didn't have to cook a single thing while she was here. The second week, Mom was bored and got all of Marvin's tee-shirts out of the dresser and ironed them! I said, "Mom, if that's all you have to do here, it's time for you to go home." Advice -- do as much as you can beforehand. Have everything organized and ready for a couple of weeks of no serious cleaning or household chores. If friends or family volunteer to help with chores, food, etc., let them! If you need to, ask for their help. Most people want to help, but they just don't know what to do to help you.
(3) Recovery time for him -- I am "Mrs. Wonderwoman" and jumped back as soon as I could to "normal" life. I went back to work after three weeks, and I haven't slowed down since. The first couple of weeks I was back at work, I did come home every afternoon and nap for a little while. My body bounced back quickly, though, and I didn't have a single problem.
(4) Complications for him -- I honestly never thought about this one. Marvin did, though, and he worried about ME ! I just jumped in feet first and said, "Let's do this!" Marvin constantly reminded me beforehand that I would be taking a risk with my life and my future health. All I could think about was what HE would gain if it worked. Advice -- Think positive thoughts. He will be fine. He will be fine. He will be fine.
Before the surgery, I thought that my being a living donor would only benefit Marivn, but I was wrong. It did something wonderful for me, too. It blessed my soul. If your husband wants to do this for you, let him. He, too, will gain something terrific from it (in addition to a non-dialysis YOU). Don't deny him the opportunity to do this for you -- and for him.
The kidney from me lasted for a little over three years in Marvin's body (no rejection) before it contracted the same disease that destroyed his original kidneys. That was a wonderful, wonderful three years. If I had it to do over again, I would -- in a skinny minute! If I could give Marvin my remaining kidney, I would -- tomorrow! I think I've done some good things with my life (I'm a teacher and also a 23-year volunteer youth baseball coach), but being a living donor is, by far, the most important thing I've ever done.
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Thanks so much, Petey. You don't know how much that helps. I know my brother and SIL will watch the dogs while we're in the hospital. I'm not sure who, if anyone, will bring by food, but I do plan on making some items that freeze well. I was also planning on hiring a maid service to come do a thorough cleaning prior to admission and maybe pop back in over the next two weeks or so. I know my husband will return to work as soon as he feels okay, but I'm afraid he'll go too early. I don't mind if he goes, but he HAS to get someone to assist him so he doesn't lift anything heavy. We don't have any children together, but he has three daughters that are all over 18. They will probably help as much as they can.
Did Marvin sleep alot when he came home or was he just ready to go? It's hard to imagine having that sort of energy right now. I'm totally used to staying home and just lying around, so that won't be a shock to my system in the least. Having the treadmill at home will also be good.
If you can think of anything else, please don't hesitate to tell me. The "committee" doesn't meet again until June 11th, so we won't know anything for sure until then.
Thanks again!
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Kelly, my prayers are with you. :grouphug;
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kellyt -- The day after the transplant, Marvin was up and going. They put him in ICU right after the surgery just as protocol. However, he wouldn't stay in his ICU room -- much less the bed, so they moved him back to a "regular" room the next day (in ICU the morning after, his surgeon came to make rounds, and Marvin was standing up at the nurses' station chatting with the nurses!). When he came home (Wed was surgery, he came home that Sunday), he was go-go-go. I was sore-sore-sore. A lot of that had to do with our different incisions. His was small (about four inches) in the lower abdomen (fatty area). Mine was in the middle of my stomach (MUSCLES there) around to my side (about 9 inches). I had the "open nephrectomy." I understand the lap surgery is much easier. The first two weeks, he really moved around a lot better than I did (of course, I had never been in the hospital before that, never had surgery, never had an IV, etc.). His energy level increased tremendously the day after the surgery! He felt and looked GREAT! It probably took me about four weeks to be totally back to "normal." Except for my scar (which is faded greatly), I can't tell that I only have one kidney now. But, I do still have yearly check-ups to make sure all my kidney function is good, but I haven't had any problems. (By the way, the day after the transplant, my creatinine level was 0.9, but Marvin's was 0.8 -- he told everyone that I gave him the "good" kidney!)