I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Tabby on February 13, 2008, 12:04:15 PM
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I lost my kidneys due to Hypertension,
Ok, well just the name of this site brought me here. I hate dialysis!!! Where to start... I am 36 and am waiting for my 2nd transplant. I started dialysis Nov. 8th 1995 (notice how you never forget the dates of everything) I was on dialysis for 21 months and on the transplant list for 17. I had a graft in my lower left arm but it clotted almost everyother week. Then I had a fistula in my upper left arm until I got my transplant on July 17th 1997 it lastest 5 & half years. Never was a great match it was a cadaver my creatine was always like at 2.0. I gained 40 pounds in 3 weeks after the transplant and was like a big balloon. I went back on dialysis on Dec 23rd 2002 (Christmas Eve, nice) I had a graft put in my left upper arm and it has worked off and on until May 2007. Then I had a cafeder that had to be changed at least 5 times in the 5 months that I had it. I have sensitive skin so it was a miserable time. My doctor gave me a choice of a graft on top of the other graft on my upper left arm or go for a fistula in my right arm and do the botton hole procedure. I went for the fistula and it was not a great experience. The botton hole on the arterial worked great from the get go but the venous just would not mature. Finally it is going alright right now but every treatment I hold my breath until I see the blood flash back after she puts the needle in. Anyways, I know this is long and not really written well, but it feels nice to just write it all out.
I have been on the transplant list since Nov. 17th 2003. Last time it took 17 months to get a kidney, this time I am on month 51 and counting. The doctors say it is longer this time due to my blood type B- and that my body had built up antibodies and since I already had a transplant it knows how to fight it.
Well I guess I came here to see if anyone else has been waiting a long time too. I have learned so much from my first transplant that I can't wait to get the next one and for one not gain so much weight but for another to really respect the gift I get. I truly did not the last time I was all poor me but now I know it is better me than someone else in my family or elsewhere that may have not been able to handle it. Well, I still poor me sometimes but I say shut up and go on.
Ok, So that's my story, Thanks for listenig
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Welcome Tabby, good to have you aboard.
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Since I got my transplant, I had been told that I would gain a bunch of weight, so I bought a treadmill. Sine January 1st, I have walked over 90 miles. iI also work out every other day (on the treadmill everyday, weather permitting) I live in Springfield, Illinois, so sometimes weather can be a problem. I wish you luck.
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Welc,e. Tabby, to the IHD Family.
Hope you get your transplant soon.
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:waving; Welcome
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:waving;
You're among friends who know and care. I've learned gobs and gobs! Take the time to look around and read some posts. You'll be right at home!
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:welcomesign;
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:welcomesign; I hope you get the call soon.
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:welcomesign; to IHD.
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:welcomesign;
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:welcomesign; Tabby to the board, it's good to have you here.
Sluff/ admin
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:welcomesign;
Hi Tabby, my mom is pre-dialysis. You've landed in a great place - lots of supportive and caring people here.
My sister lives in Palm Bay, Florida. Lots of weather stories!
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:welcomesign; :waving;
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Hi Tabby...welcome to IHD!
I can't even get on the list for another 4 years, so the waiting is extreme...but know that you aren't alone and that there's a great community of folks here you can vent to, ask questions of, or at least talk the same language we all talk!
Take care of yourself...
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Hi Tabby - Greetings - I really like your name for some reason.....
Sounds like you have really been through a lot of stuff. You'll find a ton of support on this forum plus lots of good information.
Take care and hang in there.
Sandyb ;D
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:welcomesign;
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:welcomesign; Tabby. Glad you found us.
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Welcome, Tabby! This is a great site.
My husband (Marvin) is also waiting on his second transplant. He was on the "list" from March 30, 1995 until July 26, 2000 (I remember dates, too) -- and then he didn't even get one from the list (got a living donor). He's been back on the list since October 21, 2003. He has a very common blood type (O Pos) and he, too, has a lot of antibodies because of his first transplant.
You'll find lots of info here and the greatest people in the world -- I am so glad I found IHD and these wonderful folks took me in. It helps when you're talking to someone who actually knows what you're talking about!
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:welcomesign; aboard
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Welcome from beautiful, balmy Florida. Love your avatar! He(?) looks just like my previous cat, Reggie Jackson.
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Hey Tabby,
It seems I have missed you as your intro was posted before I joined. You story reminds me of myself I started very young and had a failed transplant. I actually had to go back on dialysis the day before my birthday. I also had to treat on my birthday (the next day) because of an incompetent case manager. I waited 6 years for my 1st Transplant and I am waiting to be evaluated for my second.
Well I am sure you have heard enough I am glad to have found your intro and hope to read more of your posts soon.
CW
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Welcome to the IHD boards. I know you have lots of experiences to share with us. So get to writing! Just kidding. Be sure to visit the transplant section and share your story of your transplant. There you will see stories of people who have had transplants. There is a lot of information here.
kitkatz,moderator
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:welcomesign; We are glad you are here. You will find people going through the same problems and can be a great help. And I am sure we will learn much from you. You have been through quite a bit.
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Welcome to our community! I am sorry for the late welcome, but you joined at a time when we were going through some stuff here at IHD, with the loss of our Adminstrator Goofynina (Susie). But better late than never! so glad that you joined us. This is just the place to be. People here understand what you are going through. There is lots to read here, and I am sure you have lots to offer too. Maybe you can help someone who is going through the same as you are. so read, read, read and post, post, post. :grouphug;
Bajanne, Moderator
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:welcomesign;
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I lost my kidneys due to Hypertension,
Ok, well just the name of this site brought me here. I hate dialysis!!! Where to start... I am 36 and am waiting for my 2nd transplant. I started dialysis Nov. 8th 1995 (notice how you never forget the dates of everything) I was on dialysis for 21 months and on the transplant list for 17. I had a graft in my lower left arm but it clotted almost everyother week. Then I had a fistula in my upper left arm until I got my transplant on July 17th 1997 it lastest 5 & half years. Never was a great match it was a cadaver my creatine was always like at 2.0. I gained 40 pounds in 3 weeks after the transplant and was like a big balloon. I went back on dialysis on Dec 23rd 2002 (Christmas Eve, nice) I had a graft put in my left upper arm and it has worked off and on until May 2007. Then I had a cafeder that had to be changed at least 5 times in the 5 months that I had it. I have sensitive skin so it was a miserable time. My doctor gave me a choice of a graft on top of the other graft on my upper left arm or go for a fistula in my right arm and do the botton hole procedure. I went for the fistula and it was not a great experience. The botton hole on the arterial worked great from the get go but the venous just would not mature. Finally it is going alright right now but every treatment I hold my breath until I see the blood flash back after she puts the needle in. Anyways, I know this is long and not really written well, but it feels nice to just write it all out.
I have been on the transplant list since Nov. 17th 2003. Last time it took 17 months to get a kidney, this time I am on month 51 and counting. The doctors say it is longer this time due to my blood type B- and that my body had built up antibodies and since I already had a transplant it knows how to fight it.
Well I guess I came here to see if anyone else has been waiting a long time too. I have learned so much from my first transplant that I can't wait to get the next one and for one not gain so much weight but for another to really respect the gift I get. I truly did not the last time I was all poor me but now I know it is better me than someone else in my family or elsewhere that may have not been able to handle it. Well, I still poor me sometimes but I say shut up and go on.
Ok, So that's my story, Thanks for listenig
Hi Tabby,
I hope you get a second transplant soon. Your story touched my deeply. I wish everyone on this board and everyone in kidney failure would get well from a new medical discovery, which is not out of the picture with all the progress in medicine today.
I have to say keep your chin up and try and make the best of it we can.
I'm sorry it took so long to answer but I work long hours because I know that very soon I most likely I will be on disability. I try and not think about it but I see my doctor in 3 days which is when I will get my fistula or whatever approach my Nephrologist thinks best for my particular situation. I have so many complications there may not be a chance of even keeping my alive? Only 3 months after being diagnosed with CKD I was diagnosed with Heart failure also. Seems like it's one thing leads to another to another to another.
I have recently discovered using oxygen therapy one a day and believe it or not it is helping my stamina. Due to my anemia and heart failure I get so out of breath so quickly it's almost unbelievable. But a friend of mine gave me a case of 12 cans of 93% pure oxygen and after using it for 40 breaths in a row once a day after the third day I can all of a sudden take a full lung of air now and don't get fatigued, or get so out of breath so quickly as I have been for over a year now due to the severe anemia and heart failure. The oxygen is not cheap ($10 a can/day) and won't be able to afford to do it when I run out of the case my friend gave me, but with my hematocrit at 31.5 (even with 40k units of procrit every two weeks) It's like I'm suffocating even when I'm relaxing just sitting in a chair watching a movie.
Anyway, I just had to reply to your post welcoming me into the group.
Thank you for sharing your story. I want everyone to know that I am a great listener and if anyone wants to rant or vent I will gladly listen to you and do anything I can to help with moral support. I know I am going to be one that needs someone to vent to when I start my dialysis.
I'm 56 years old and lost my mother to renal failure when she was 56 years old and my grandfather (my mom's father) when he was lucky enough to last until he was 86 years old with kidney failure.
I am type II diabetic since 2000 and have a hard time keeping my glucose under control even though I try and do my best in following my doctors instructions and diet. One thing I don't get enough of is exercise because of my quick shortness of breath.
Best of luck to you and thank you again for sharing your story,
Rick
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:welcomesign; I know some of the answer you seek can be found here.
EDITED: Fixed smiley icon - okarol/admin
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Welcome Tabby!
You will find that this site is a wealth of information, comfort, and quite a few laughs. There is a lot of reading to catch up on, so you better get busy and then jump in anytime!