[quote=Difficult stuff;15149]Hello all,
I am new to this message board, 38yrs old and struggling with ESRD. I am waiting on a PD appointment with only 9% GFR remaining and a creatinine level of 7.6. I still feel fairly well and produce urine and stuff.
I have spent the last hour reading posts on the message board…some are depressing…others a little more encouraging about dealing with these issues. I am not looking forward to dialysis, PD or surgery…but I certainly understand things can be worse and at least I have an option.
I have a fairly good understanding of what to expect in the near future, and know there will be bumps and bruises along the way. I have a few people lined up for transplants (assuming they pass the tests). I was just wondering if there are any success stories people can share about transplants? It might make others (including me) feel better about hearing these things and giving better hope for things down the road.
Thanks and be well![/quote]
Of course!! I just had my transplant on Sept 30th 2007 so if you want I can tell you about my story! Or you could follow the whole thing here in more detail but I don’t want to bore anyone lol (13 pages long eek!)!
Anyway, I had been on PD for 4 years … and then I had no choice but to switch over to HD due to a severe internally caused infection that was no fault of my own. No one’s fault really … things sometimes just happen like this! You learn you can’t control everything So then I did HD in clinic for 2 years … first year with a PermCath in my neck / clavical area and then after that through an AV Fistula in my left arm. The first one didn’t take (stopped a little past a week) but the 2nd one is still going strong! I was worried as attempts do establish buttonholes on my fistula failed as my fistula is extremely rolly (there is a thread about that somewhere on here)! I honestly was not ready for a transplant before this year as I had a very hard time with my first transplant since I was not aware of all the side effects and was only 16 and gained 32 lbs in 28 days which is devastating to any young girl with a first time boyfriend. He broke up with me because of my weight gain and appearance and I started to slack on my meds. I lost my transplant 11 years later because of off and on and off again med regiment which was my own fault. This time around I wanted to make sure I would be able to handle it!
So it was Sept 29th 2007 just after noon (between 12 and 2pm) when I got the call. At first I thought the hospital was calling to say there was a problem with the last blood work as I was napping and only half heard the message on the answering machine … so I did NOT answer! lol !! Then when he called back I answered groggily and was shocked to hear they had a kidney for me! Dr. Habhab was asking me if I was sure I wanted it as it was not perfect but they think that it could work for me. It was a 60 year old kidney he said. I thought, “So? 60 is not too old! I will take the chance!” I didn’t know there was more wrong with it than that but they were right! It would eventually work! But I did NOT know this as I was in the hospital for a month having a hard time with this transplant!
So I will share the experience so when you have yours you do not get discouraged as I did.
I got the actual transplant Sept 30th 2007 and when I woke up I was hooked to 2 IV poles and another machine with a huge syringe of medication going into me slowly (very strong antirejection immunosuppressant medication) and oxygen tube sitting at my nose and held around my ears so it wouldn’t fall off. I must have had a tube down my throat as it was very sore. I was groggy. I was weak. I was tired. I was not very sore though. They said I was still on a lot of pain meds. They gave me a push self-medicator thingy to push when I needed more meds. They said it was impossible to over medicate myself with it. So that was a good thing. But I never was the type to depend on meds. Of course you should use it when you need as if you don’t they take it away assuming you are not in pain. I know someone who did not use it … and regretted it.
My kidney was not working right away. The first transplant I had it worked right there on the operating table but this one was not the same. I learned that every transplant is unique! They said my blood pressure had dropped so dangerously low that my kidney was deprived of Oxygen carrying blood cells. This was due to very tiny veins?? Not sure exactly. It is still very foggy to me as they tell you these things in bits and pieces and half of the stuff I just simply do not remember. So what happened is my kidney got what is called “Acute Tubular Necrosis”. I did not know this until I was already home recovering when I heard the term and looked it up! I was devastated til I read that the kidney CAN recover from this! Sure enough it did … it took longer than normal … but not the longest ever recorded! It took almost 2 months! Usually it takes between 4 - 6 weeks! During the recovery I had gained 22kg of fluid on me and had to do a lot of dialysis throughout my stay there. Here is a pic:
I liked how they brought it to my room! After I was better I would be taken to the dialysis floor in a bed. And then at the end I was able to walk there myself instead of waiting for the porter as it was the day I was going home anyway! lol After that I had to do 2 more weeks of dialysis in my own city and then came back for a check up! That was when I was told that they wanted to stop dialysis to see if the dialysis had helped the kidney wake up yet.
I have not done dialysis now for 3 whole weeks!!!
It is amazing as I had even wondered if I had made a mistake accepting this kidney! I was at a point where I felt I had been better off on dialysis! It was an amazingly hard recovery but I did it and now am ever so greatful! The kidney now does everything except make Epo which I must still inject subcutaneously into my belly 3 times a week so that my hemoglobin comes up. Right now because it is low I don’t have the energy I did with my first transplant … but man with my first transplant it was like night and day! It was amazing! I can’t wait til I feel that way with this one!! I can now eat the foods I could NOT on dialysis! I even had banana after the last clinic visit as they said my potassium was actually a little too low (just under minimum)!! I can now drink as much as I want and in fact it is encouraged!!
It is amazing but I always am aware that kidney transplants do not last forever so I can NEVER slack on my medications allowing me to keep this kidney for as long as possible! There are people who have had their transplant for over 30 years! I want mine to last that long as well! I must take over 20 pills every day but it is worth it! I am even getting better at taking pills as I used to have a very hard time swallowing large pills! Communication is the key as I had to get them sometimes to give me smaller pills and just take more of them so that I can get them down! But it works! I am so happy!
I hope that my story does not scare you but encourages you and keeps you informed of possible outcomes! Knowledge is the key as you end up feeling lost when you are kept in the dark! Learn as much as you can! And PLEASE keep us up to date when you get yours!
Sorry this is so long!