I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: livecam on August 02, 2006, 05:12:03 PM
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It is always so nice to meet someone who has had a successful transplant and is back in the swing of things. It is really funny where you'll find people with kidney disease and those who have had transplants. For lunch today I went to a restaurant owned by a little central American lady who is also a transplant patient. She had it tough with a restaurant to run and dialysis as well. She used to dialyze in the morning, then show up at her business to make sure everything was allright the rest of the day. When I went in today I just wasn't thinking about kidney stuff until she came up to me to ask how things were going. It turns out we have alot in common. Her transplant surgeon is the guy who evaluated me for listing at UCLA. She's had her transplant for a year now and is doing fine. At another place I used to go more frequently I would often chat with a waitress who of course had a transplant as well. The last time I spoke with her she was at 10 years and counting with all going well. Kinda funny how people meet like that and I would have to say that the common thread is the fistulas! We all seem to spot them on others and from there have a good idea of what is happening.
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I remember when I had my transplant I was able to work for 9 years in a 12-hr shift job and work my way up the ladder with hardly anyone knowing I had a transplant. It is amazing what you can do with a healthy kidney .. even if there are some things to watch out for.
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I can usually spot someone with a transplant. Puffy Face and Busy Eyebrows.
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I can usually spot someone with a transplant. Puffy Face and Busy Eyebrows.
Ya but that is only if they are on the medications that cause that. ;) I was on them :P
Here is me :P
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Yep, we could have been twins! Didn't ya just HATE that. I looked at pictures for 17 years and would just CRINGE! Now, I'm back to normal. I'm still on 4mg of prednisone. I just can't shake the stuff. Again, I was on 10mg for the duration of the transplant.
By the way, you looked good! I know you felt good!
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Yep, we could have been twins! Didn't ya just HATE that. I looked at pictures for 17 years and would just CRINGE! Now, I'm back to normal. I'm still on 4mg of prednisone. I just can't shake the stuff. Again, I was on 10mg for the duration of the transplant.
By the way, you looked good! I know you felt good!
Thank you Rerun! That means a lot :)
I am still on 7.5mg every other day of Prednisone now. After a few years I was able to look like this on a transplant (9 years later though lol but just goes to show you ... the "moonface" or "Chipmunk cheeks" are ONLY TEMPORARY!!! :) ):
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WOW, Angie! That is a beautiful picture!
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WOW, Angie! That is a beautiful picture!
Thank you ;D
If only I knew I would look like that when I had the moon face then I would not have freaked out and stopped my medications :( :-[ :-\ :-X
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The "moon face" was not temporary with me. I had a fat face until I got down to 4mg.
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...has a fat face @ 0mg because he likes to eat!
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Wow Angie that is a great picture! You have great hair!
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Wow Angie that is a great picture! You have great hair!
I lost all that hair last autumn after I was in the hospital last summer with the worst case of Peritonitis the nurses had seen in 20 years! I became so malnourished that I dropped from 140lbs to 112lbs in one month. I kept my hair until Dec but my hair was so bad that I was nearly completely bald on top and my hair was so stringy it just looked so bad in all the Christmas pictures (sorry for the run-on sentence). So in January my mom cut it. I don't like it so short but my mom does. I have to admit .. once my hair finally started to grow back it started to look better even though it was so short that it didn't even touch my shoulders (still doesn't and it is already 8 months later!!).
I can't wait til I get a transplant again! ;) At least I was healthy!
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That is a great picture!
I was able to get totally off of prednisone after about 6 years. But my cheeks stayed! I think I have my mother to thank for that!
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That is a great picture!
I was able to get totally off of prednisone after about 6 years. But my cheeks stayed! I think I have my mother to thank for that!
Ya I told Jeff to be prepared for my kidney cheeks ;)
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Ya I told Jeff to be prepared for my kidney cheeks ;)
She did and I am prepared for that.
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Your a hottie angie! :P
I had all the puffy face too and a hump on the back of my neck, thick eyebrows, dark hair on arms, pimples, overweight etc. One good thing was that it made my already lovely hair, even thicker and healthier, it grew so fast. 4 years later I started uni and I lost 3/4 of my butt length hair and had to cut it all off. 8 years on and I still have a fat face and short thin hair. Totally off the prednisone now, my face has gone down and the hump is greatly reduced but I still have the fat face which I hate. Not to mention all the scars and what so much surgery does to your body. The transplant at least gave me a life for a good 7 years so Im very greatful for that.
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Thank you! :)
That was in 1999. It just goes to show that the side effects get lessened once the dosages are lowered. As I get older I don't look so much like that and now on dialysis I definitely don't look as healthy. I too wish I had back my long thick hair. I know how you feel! I really have to work out but it just seems I have no energy! Here is what I look like now (http://ihatedialysis.com/forum/index.php?topic=830.msg7477#msg7477). But I have to say there is nothing like a transplant and even though I didn't like the side effects it was well worth it! Of course I only had one experience with a transplant and it went well enough to want that experience again! ;) Why I say well enough is because I had my 2nd original kidney finally removed when I got the transplant so I had incisions on the back and front and couldn't sit up to cough and my lungs started to collapse! I had a very tough time at first with my transplant.
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Amber: "4 years later I started uni" What is uni?
This brought a thought to me. Maybe I lost my hair when my kidney started giving out. NAH.... there are people on dialysis with thick hair! Wait, but maybe the transplant drugs made my hair thick. If I would not have had the transplant I may have just had thin hair. Humm I'm going to have to ponder that one.
So, what is uni??
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uni=university
I think over there you call it school or college?
I always had lovely thick hair before I even got sick, but the transplant meds made it a heap thicker. This is me post transplant, cant remember how long after it was. My eyebrows werent that dark, I coloured them in a bit more for some reason. I think that was my yr10 or yr11 photo so I would of been 16 or 17, so about a year or 2 later. I used to look in the mirror every morning, and each time my face was a little less puffy.
http://www.members.optusnet.com.au/eggman007/Amber7.jpg
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That was taken soon after your transplant? You are very pretty there. Much prettier than I was. I hated how I looked. People I grew up with didn't even recognize me and one lady at Church walked up to my mom and asked her if I was a foreign exchange student!! Can you believe that??? The pic in this (http://ihatedialysis.com/forum/index.php?topic=978.msg10367#msg10367) post was taken in my 10th year of High School (I was 16).
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I could never get below 10mg of prednisone with the transplant. So, I had the moon face and moon shoulders and Brook Shields eyebrows etc... I have pictures but they are not digital and I don't have a scanner.
Now it is all gone even though I'm still on 4mg/3mg of prednisone. 4mg one day and 3mg the next day. I may never get off of it.
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Hey you would have fit right in, in the fifties. I like old movies and it looks like most of the women of that era either had transplanted eyebrows or just painted them on. I was just a little kid back then and thought it was normal. ;D
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...and then again be thankful you aren't Armenian. Those poor people are born with a massive unibrow.
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Thanks angie, I look nothing like that now :( I had lost weight then so I wasnt as chubby as I was right after the op. I havent got any digi pics of that. I was very good at sticking to a healthy diet and trying to excercise as much as I could back then. Total opposite now, no willpower, no motivation, no energy. Im about 10-15kgs heavier now than I was back then so I guess thats not too bad. Aiming to lose about that much.
Not long after I came out of hospital after the op I had a lady come up to me and said "you look like you could lose some weight" and tried to sell me that herbalife shit. Mum told her to bugger off. If it had of happened now, I would of rearranged her face lol
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Now it is all gone even though I'm still on 4mg/3mg of prednisone. 4mg one day and 3mg the next day. I may never get off of it.
Wow that makes a LOT more sense than how my Neph has me taking it! I take 7.5mg every other day. I was wondering if anyone else takes Prednisone only every other day. When I was still in my transplant years I had to always take the 10mg every single day. The only reason my cheeks went down is because I wasn't exactly good with the pills.. :-[
You should scan a pic at a photolab. They do that now for very cheap! :)
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I would say you need a constant dose every day when youve got a fully functioning transplant. It is so important not to skip any medications otherwise suffer the consequences. I missed mine a fair few times because I would always forget to take them. If I get another transplant Im going to stick them to my forhead!
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I would say you need a constant dose every day when youve got a fully functioning transplant. It is so important not to skip any medications otherwise suffer the consequences. I missed mine a fair few times because I would always forget to take them. If I get another transplant Im going to stick them to my forhead!
If you do not have diabetes, many transplant centers now put you on every other day prednisone. This is to ensure that your adrenal glands do not shut down, so you can then be weaned off the prednisone if necessary. Because prednisone affects blood sugars they do not do this for people with diabetes.
Cora
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First Ive heard of that. I took it everyday all along and then even after the kidney stopped working until I was weaned off slowly.
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If you do not have diabetes, many transplant centers now put you on every other day prednisone. This is to ensure that your adrenal glands do not shut down, so you can then be weaned off the prednisone if necessary. Because prednisone affects blood sugars they do not do this for people with diabetes.
Okay, Prednisone is bad for diabetics? So what do patients who are diabetic need to take if they can't handle the prednisone?
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If you do not have diabetes, many transplant centers now put you on every other day prednisone. This is to ensure that your adrenal glands do not shut down, so you can then be weaned off the prednisone if necessary. Because prednisone affects blood sugars they do not do this for people with diabetes.
Okay, Prednisone is bad for diabetics? So what do patients who are diabetic need to take if they can't handle the prednisone?
I think the dosage is just altered. But depending on the hospital you go through sometimes they put you on other medications. I don't have diabetes myself so I can't really answer this as well as a diabetic can.
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I'm not aware of every other day Prednisone. I was on daily doses that were continually tapered until we reached 5mg/day. I then requested and was allowed to wean to 0. We went down in 1mg increments until zero was reached. Many transplant centers these days have steriod free protocols that have worked well for patients. Old school doctors tend to be more conservative and promote steroids. My HMO neph told me the world was going to end and my kidney was going to reject if I did this. He agreed to allow it if UCLA would say OK which they did. Its been two years now and labs last week were nearly perfect.
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Well they will never bring me down to 0 because when I had my original kidneys removed I also had my adrenal glands removed as well (they were all infected). They say that is why they have me on the Prednisone dosage that they do. I am not exactly sure why ...
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Im pretty sure they still put everyone on prednisolone here. If its going to give me a better chance then ill take it. I hate it, but Id rather that than be on dialysis. A kidney can be failing long before you even know it. Took 2 years to get a diagnosis when my kidney was rejecting.
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Im pretty sure they still put everyone on prednisolone here. If its going to give me a better chance then ill take it. I hate it, but Id rather that than be on dialysis. A kidney can be failing long before you even know it. Took 2 years to get a diagnosis when my kidney was rejecting.
You had none of the signs?
*corrected grammer :P
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Not really, just extremely tired and started getting nauseas. My creatinine went up from 0.08 to 0.11 over a couple of years. Other than that no other symptoms and nothing else showing up in my blood work. It took a couple of biopsies to get the diagnosis of chronic rejection of unknown cause.
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Puffy face bother you? In the old days massive dosages of radiation was the standard regimen. Guess what? many died.