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Discontinuing CellCept

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Posted 7/26/2013 12:09 AM (GMT 0)
Posted Yesterday 3:05 PM (GMT -6) Quote This PostIgnore Posts From couchtater.alert An Admin about This Post.
Unless cellcept is hurting you personally please don't stop it.
My brother has severe kidney disease and has been on dyalisis for 10 years now. Kidney disease is no fun and is a terrible thing.
When he first had kidney failure it put him in ICU for over a week in horrible pain. We never knew if he would live or die. It put our family in such agony over his illness. His children was so terrified over his illness.Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

My situation is different from your brother's.

First, dialysis is not an option. I'm just not going to do it. I've talked with my doctor and, well, she knows enough about it that she agrees. I've known people on dialysis and it's just slow postponing of the inevitable. Eight hours a day of dialysis, a day or two a week. Then more and more days. It stops working to the point that you can't think of even simple words anymore.

I'm not on dialysis, but I'm really about to that point now that I have "mind f*rts" and cannot think straight.

Eventually, one of my friends decided to discontinue dialysis because she just didn't have a life anymore.

I do not have relatives or friends who care anything about me except for their own selfish reasons. They have religious reasons, they think I'm being selfish, or they just feel guilty.

One thing I wonder about...why didn't the doctors control your brother's pain when he first had kidney failure?

I realize he wanted the dialysis and did not want to die.

But my situation in different. I do not want dialysis. And, from what I have researched, the pain can be managed if you don't want the dialysis. You just don't have dialysis, it's your choice to choose to die from the kidney failure and they make you as comfortable as possible.

I think that's what I want. Otherwise, it's just a never ending downhill road of suffering.

I appreciate your help.
Posted 7/26/2013 3:24 AM (GMT 0)
First, I want to say that whatever anyone chooses or does not choose to do regarding their own health, is perfectly acceptable. However, as a moderator I am required to remind you of the Forum Rules, which include:

1. No discussion of any illegal activity or threats of violence (ie. illicit drugs, including medical marijuana, threats of suicide, self-injury, or physical harm). Discussions of suicide and self-harm are not permitted.

While I realize that so far this discussion does not explicitly break this rule, it is very very close to breaking it and I wanted to point out the rule.

I'm not sure what you want from this forum, JustTiredxxx. We can certainly support your right to choose, but we don't have many active members dealing with kidney issues. One of the moderators is near the point of getting a kidney transplant & is otherwise occupied, I will contact her & see if she wants to come discuss with you.

Cheers,
Posted 7/26/2013 5:55 AM (GMT 0)
Just delete my reply, please.
Posted 7/26/2013 5:46 PM (GMT 0)
Hi there! I have been on dialysis 2 years. It sucks, I am not going to lie, BUT to not even try totally confuses me. Yes, we all are going to die, that is true. But if you believe your kidneys are to the point of dialysis, then why not go ahead and get on UNOS (United Network for Organ Sharing) transplant list and possible continue cellcept until a new kidney is found and you can get a transplant and return to a somewhat normal life?

Also, what kind of doctor are you talking too? She explained dialysis wrong to you. There are 3 types to choose from. 1. In center Hemodialysis (the one most people talk about)

2. Peritoneal Dialysis (PD) done at home

3. Home Hemodialysis. (HHD)

With in center you go to the center 3 days a week for 3-4 hours. I have been doing this since October and have no issues of needing to up my time. There are many things that can be done vs upping time plus, medicare wont pay for more than 3/4 times a week.

PD is done in your home while you are sleeping. That's right, you don't even know you are doing it. I did this for a year and loved it. Actually looking at going back on it. Had to switch to incenter for a few reasons. This is a great form of dialysis as 1. no blood and needles are involved and 2. done at night by a machine.

HHD is done 6 times a week for 2-3 hours. This is also better than incenter because it is more like your kidneys working. Wont have horrible dietary restrictions associated with dialysis. 

If you have certain questions about the above types of dialysis or transplant process I would be more than happy to help you. You are right, it is your choice to end your life BUT when I was doing research and came close to that decision we realized cellcept made me super depressed/suicidal. After coming off it, things improved a lot and I wanted to fight to live. But yes, if you get to the point of kidneys failure and death, they will make you comfortable as possible until you pass on, which I really hope you don't decide to do. If you do decide to go that route, please make sure you are an organ donor so other people who want to live, may get their lung transplant, heart, or liver transplant they need to keep fighting to live!

the good thing about dialysis is once you get to that point, your lupus will typically burn itself out, meaning not cause more problems. You won't have to take cellcept. Dialysis sounds scary but its not that bad. Especially the home options. I am here, been on every medication used to treat lupus except methotrexate and benlysta so could also recommend other meds you might tolerate better. Hope you are doing ok! 

Posted 9/5/2013 7:09 PM (GMT 0)
Hi,
My name is Yolanda and I have Lupus Nep. / Chronic Renal Failure. My creatin Level has risen to 4.3
from 3.0 I have high blood pressure, but it is getting under control now. Sometimes I feel this certain medicine I was taking raised all level, it was citoxan. I am no longer on it. when i was taking it i was taking it for ony 9 days. Any advice? [email protected].
Posted 9/6/2013 3:54 AM (GMT 0)
Hi and welcome to the forum. I'm sorry to hear that you have Lupus Nep/Chronic Renal Failure. I've not had this issue with my kidneys but I have taken cytoxan.

I took it in the oral form for over 9 months at 250mgs daily. Then I switched to the IV form for 4 months, I never had an issue with it affecting my creatin levels. It did however fire the heck out of my bladder and damaged it forever. It also may have caused me to develop leukemia but my Dr's aren't 100% sure on that either.

I'm currently facing a problem with my lungs having a mass in each lung. There's a possibility that the masses are cancerous. Could it be the cytoxan quite possibly, but they'll never know for sure.

Wish I could be of more help to you, I do know that they made sure they told me the possible side effects prior to me taking the drugs. Of course, the gave me statics like only in 4% of patients do these type of side effects happen. Guess I'm not a real lucky person.

I hope you can get some answers. I also hope and pray that they can get your Lupus Nep/Chronic Renal Failure under control ASAP. If you have any questions about your kidney issues we have a mod here who is real close to getting a kidney transplant and someone could let her know you've stopped by to ask questions.

Welcome again, sorry you need to be here, but there are loads of great folks here and we all support each other. Hang in there and let us know if we can help in anyway.

Hugs,
Barbara
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