Dealing with daily life on home hemodialysis

im pretty much a newbie to the whole hemodialysis world but very familiar with the dreaded “in-center” dialysis. my doctors say “youre 27 you should be transplanted by now!” they fail to realize the complexity of me being transplanted due to my two liver transplants done when i was 8 and 9, my body is a floating antibody! i was curious as to how many of you are on dialysis due to the toxicity of the antirejection medications from another type of transplant? after all i cant be the only one right? ive heard that heart transplant patients often end up on the esrd list as well and i would like to speak with anyone with the same type of dialysis issue. it seems as if one thing goes well, the other well, goes to hell! any response of experience would be helpful, thanks!

sheina

Oh, goodness. It sounds as if you’ve had a pretty complex medical situation ever since you were little. It also sounds as if you’re a pro at dealing with it–I wouldn’t be at all surprised if you know more about your own situation than most of your doctors do. Welcome to our forum! I don’t know if anyone else here lost kidney function due to other immunosuppression, but it does happen.

Which type of treatment are you doing now?

[B]Welcome to the forums! I can relate to you in way, my first transplant resulted with other health problems. For the most part the tranplant did save my life. If it weren’t for the tranplant I would have not be here today.

Anyway, Anti-Rejection meds are toxic and will hurt other parts of your body. In my case, my eyes, ears, hip joints, and skin. The hardest damage on me was hips, needed hip replacement surgery. Second to that my eyes, had my lens replaced…

Today, my blood has high anti-bodies and also has been difficult for me to even go for another transplant. I can if I wanted to and I am a good candidate but seems I am choosing to stay home doing dialysis. I’ve gotten well use to it and accepted living with dialysis. It is hard for most people, but you gotta keep trying.

Some people do have multiple transplants, liver, kidneys, and pancreas…and they are happy too. Whatever your conscious tells you, just follow m,your heart.[/B]

[quote=sheina2008;16844]im pretty much a newbie to the whole hemodialysis world but very familiar with the dreaded “in-center” dialysis. my doctors say “youre 27 you should be transplanted by now!” they fail to realize the complexity of me being transplanted due to my two liver transplants done when i was 8 and 9, my body is a floating antibody! i was curious as to how many of you are on dialysis due to the toxicity of the antirejection medications from another type of transplant? after all i cant be the only one right? ive heard that heart transplant patients often end up on the esrd list as well and i would like to speak with anyone with the same type of dialysis issue. it seems as if one thing goes well, the other well, goes to hell! any response of experience would be helpful, thanks!

sheina[/quote]

Hey, Gus! Nice to see you surface out of Second Life occasionally and pay us a visit. :slight_smile: How’ve you been?

[I][B]Hi all and Dori,

If you haven’t heard about or even tried Second Life I must say its a magnficent free 3d web social program that you can download for free. It has helped many people with all types of disabilities, rehabilitation and much more.

There’s an UNOS group in Second Life so if any of you have organ transplants you might want to check it out and start socializing with people in real-time.

There’s so much medical research going on Second Life so if your into the medical field you might want to connect to other Professionals in Second Life.

As for me Second Life has brought great oppportunities towards my career as 3D content developer and the future is bright. BIG competition in Massive Multiplayer Worlds are already popping up everywhere, so that will bring more benefits to users worldwide. The good news is that The developers of Second Life and associated technologies are working hand on hand to permit teleporting from one virtual world to another, that means people in Second Life can visit other virtual world societies vice-versa… [/B][/I]

TAKE A LOOK HOW THIS PERSON IS BENEFITING FROM USING SECOND LIFE

Hi Folks

Hi Sheina

At 27 and having dealt with the life you have overcome , no one but you and the people that really care for you or about you( family or loved one or partner) should have have input in the decision you must make. The key is IT IS YOUR CALL. don’t let any medical people threaten or forcetheir thinking on you. You will live the call for the rest of your life. And I hope you live a longer and happy one. But if you don’t make the decision based on fact finding and with as many drs. as you feel needed to make the right call your spend x amount of time second guessing.

I too, had many operations over the yrs. And I will not get a transplant. Even getting my fistula took over yr and half. before I found the dr that just felt right and said the right things without me asking. It is the same with PTH, my dr keeps after me to have them removed. But it took a another yr to find a dr that reasure me and before I asked questions he was answering them. The thing is , the my renal dr and I know that my PTH can be control with meds. The issue is cost for meds. Sometimes we can get them and at imes we can not, why have an operation done if meds help the issue at least till something happens that is from PTH issues.

The problem in dialysis is that center are set up with the thinking people will opt to get transplant. But transplants are rare and don’t take everytime, and some only last a yr or so. So I’m sure that there are transplants that have lasted a # of yrs, if not a person lfe. But I’m sure these are rare. Life on dialysis is or isn’t what you try and make of it. II’ve take to fact finding here in PA as to laws and protocol within the dialysis wold just here, in PA. not the country. Just working here in Pa will take the rest of life and I more than likely won’t get anywhere. My thinking that in 20 yrs by force the # will be more people doing home than in center. Just due to the # of people entering into dialysis and cost #'s. The Fed will not be able and I see no reason that the Fed should pay a center for work not done. If I’m doing all the work as a tech why is the center getting the money?

[QUOTE=sheina2008;16844]im pretty much a newbie to the whole hemodialysis world but very familiar with the dreaded “in-center” dialysis. my doctors say “youre 27 you should be transplanted by now!” they fail to realize the complexity of me being transplanted due to my two liver transplants done when i was 8 and 9, my body is a floating antibody! i was curious as to how many of you are on dialysis due to the toxicity of the antirejection medications from another type of transplant? after all i cant be the only one right? ive heard that heart transplant patients often end up on the esrd list as well and i would like to speak with anyone with the same type of dialysis issue. it seems as if one thing goes well, the other well, goes to hell! any response of experience would be helpful, thanks!

sheina[/QUOTE]

Best to You
Bob O’Brien