New from North Carolina...

[lisaplusthree]

Hi, my name I Lisa. I have been on dialysis for 1 year and 8 months. I was diagnosed with a rare condition called Goodpastures Syndrome,it affects your kidneys and(or) lungs. I was skeptical at first when they diagnosed me because the doctors, I mean all the doctors didn't believe I had Goodpastures because they said they never heard of an African American having it, and was said there was only a 1-2% that a black person will have it throughout the generations. I kept asking....you sure I have what you called goodpastures, they said well from your symptoms and test results of your kidney function. I was still skeptical, because they won't listening to what else I went through like low blood for years due to my heavy menstrual cycle every month for many years( sorry men too much info.  for ya) Low blood count can also make your kidneys go into renal failure I thought also, but you know you can't tell the doctors nothing. I am 35 years old and on dialysis, I still just can't believe it, I am taking it one day at  a time. I went from What I thought was healthy to in and out of the hospital, staying there for weeks at a time. It all started one day when my doctor called me and said that my lab from my previous checkup came back showing that I have a significant lost of kidney function ,and I need to get to the hospital imediately,  he was shocked too because he said my kidney function was good months ago.  Prior to that I have been taking medicines the doctors gave me to protect my kidneys from the Goodpastures, see they diagnosed  me with that in May2010 and my kidneys failed in Nov.2011, during that time I was concern about my diagnosis because the doctors said its nothing to be worried about because I was young and my kidneys were good at that time. This condition is so rare most doctors don't know much about it. I used to ask so many questions when I went to the doctors and they sometimes act dumb-founded, and didn't know how to answer my questions, they will leave the exam room and come back with information that they got off the internet and made copies for me, at times I ask myself "should I change doctors and go to a doctor who specializes in rare health conditions" sometimes I wish I did...they were treating me according to the book, they gave me medicines that were for patients who have had kidney transplants, and I didn't have renal failure then, they said since I was diagnosed with Goodpastures syndrome and it involves with your kidneys and(or)  lungs they    wanted to put me all meds that is stated in the information that they got from the internet  because they sure didn't have info. there at the hospital or doctors who specializes in it. I been  through so much, but  somehow it made me a stronger person, we all are strong people to do "Dialysis"     It is something else! I go to an in-center dialysis, 3 days a week, I run for 3hours and 30min. I really want to do home dialysis but it seems like its just too much hassle.  I am on the kidney waiting list, but my wait time is 5-7 years, I just hope nothing else occur with my health or health worsens before then, I have  possible donors in my family but I guess they have second thoughts about it now, they see that I am doing great and look good since I been doing dialysis.  I have a fistula in my left arm, I just don't like the appearance of my arm now, and the technicians don't care how they stick you sometimes, trying to be fast all the time so they wont get behind, I cant stand half of the staff there also the nurses, because they feel like just because we on dialysis that we are less than a person because  most of the staff think that we did it to our own self by not taking care of ourselves, but that's not true at  all, because most kidney  problems are genetic or hereditary. Well, its a pleasure to join this website, I thank you for accepting me and hope that we all don't let our kidney problems stop us from doing anything we want because we one of the strongest persons in the world, dialysis is a hard treatment to deal or cope with. Im praying for the best for US...Lisa S.

[Shaks24]

Glad you found us and Joined Lisa.   

[Joe]

Hi there Lisa, and    Glad you joined us here.

[MooseMom]

Hi Lisa!  I'm so glad you joined.

Unfortunately, most people on dialysis have ESRD because of things like diabetes and/or hypertension, not because of rarer conditions like Goodpasture's, so there is indeed this misconception that kidney failure is due to some fault of the patients.  I'm sorry you are having to deal with that sort of attitude.

There are a good number of rare conditions that cause renal failure.  I have fsgs; there are plenty of people here on IHD with fsgs, and I've read posts from others who have Goodpasture's.  There are no cures for these diseases.  All the doctors can do is try to protect the kidney function you have remaining, try to slow the progress of the disease in question, and protect your general health by treating the effects of CKD like hypertension and elevated blood lipids (cholesterol and triglycerides).

I have been treated with cyclosporine (many others are treated with steroids) to try to slow the progress of fsgs.  This worked for about 6 years, but there comes a time when cyclosporine becomes toxic and is no longer effective.  Cyclosporine and steroids (like prednisone) are also immunosuppressants used by transplant patients, so I'm not surprised that you were probably treated with these drugs.

I hope you find this website to be helpful and supportive. Please feel free to post any questions or concerns you may have.

[Poppylicious]

  Lisa!

[Vitality]

Hi, Lisa!

You said:

I go to an in-center dialysis, 3 days a week, I run for 3hours and 30min. I really want to do home dialysis but it seems like its just too much hassle.  I am on the kidney waiting list, but my wait time is 5-7 years...

I have a fistula in my left arm, I just don't like the appearance of my arm now, and the technicians don't care how they stick you sometimes, trying to be fast all the time so they wont get behind, I cant stand half of the staff there also the nurses, because they feel like just because we on dialysis that we are less than a person because  most of the staff think that we did it to our own self by not taking care of ourselves...

I'm on peritoneal dialysis (PD), and you are correct... it IS a hassle... for about a month. At first, the four to five manual fill/drain cycles per day was actually kind of interesting, but soon it became routine... a frequent activity interrupter, and a chore. I was trained on manual PD over two visits to my dialysis center, then I continued manual PD for two weeks. The last two days of this period, I was trained on the automated machine.

  FREEEEEEEEEEEDOM! 

Or, at least, completely free days. I have a little hole in my belly with a tube and connector attached that I wear in a harness that is unnoticeable with my shirt down. Twenty-minute setup at night, work/play on the computer, read, watch television, etc., until I get tired, sleep, wake up, twenty-minute "end therapy" conclusion to the night's continuous PD... FREEEEEE for the day!

(BTW, the surgery for installing the PD catheter is minimally invasive. I don't know exactly how they do it, but four tiny incisions are made. One is where the catheter is inserted and from which the connection tube emerges, and the other three are used for manipulating things in place, and the scars (and lumps) from those three steadily fade over the course of three months. There is some steadily decreasing pain for about two to three weeks after the surgery, and it takes about that long before things have healed well enough for PD treatments to begin.)

Automated PD with the machine is VERY flexible! I work at home, so I can choose when to start my daily therapy. (Even if working a traditional day job, there is flexibility of when you begin therapy in the evening/night. In this case, a nice thing about nightly PD is that by all appearances, you are living a normal life with no disruptions to a traditional work schedule.) Currently, my program is for a total of about eight hours, consisting of five fill/drain cycles. Usually, I will hook up at 11 pm, then continue with leisure activities until I'm sleepy, but if I know that I'll be spending the evening/night out, I can begin therapy earlier in the day and be free in the evening/night. It's even possible to go without during a night then hookup the next day. COMPLETE INDEPENDENCE other than being hooked up to the machine for the duration of the program cycles, and even then, you can go through a quick disconnect procedure if necessary. Standard is a 12-foot connection, but supplied are 12-foot extensions, so you can move from room to room during therapy. If you have the machine on a cart with wheels, you can unplug the machine and move it and yourself about for 30 minutes (it has a battery backup and will keep running) before plugging back in into any power outlet in your house. I SET MY OWN SCHEDULE IN THE COMFORT OF MY OWN HOME!

Both the manual and automated processes seem a bit daunting to learn at first, but within a couple of days of doing either, you begin to understand the purpose of each step, and you suddenly realize "simple simple". CLEANLINESS with PD is of utmost concern to avoid dangerous infection, but if you follow the guidelines and techniques presented in training, and you are careful not to seek shortcuts, the opportunity for infection is minimized.

With PD, there are no needles, no fistula, no blood manipulation, no boring visits to the dialysis center three times per week for 3.5 hours each, and no having to endure insensitive staff. Do the following Google search: "peritoneal dialysis patients healthier than hemodialysis patients", and you will see that there are health benefits to continuous PD.

Though I'm happy with the relative freedom that automated PD allows, of course, sometimes, like you, I look at myself hooked up to the machine (by a single tube) and wonder how I got here. Well, I'm here, so I guess I'll have to deal with it. Neither PD or hemo is sexy, but for me, when I heard the options, choosing PD was a no-brainer, and I'm very happy now with my choice... but... WHEW!!... that first month and the frequent manual cycles were indeed a hassle and a drag. Even so, I can now do manual PD in complete darkness, and this might come in handy during a power failure.

OK, Lisa, I'm not telling you what to do. I'm just presenting how the initial hassle of PD will eventually yield to greater freedom and control. Given that you have 5 to 7 years of dialysis before a transplant, I think PD is a good option that affords you greater freedom and control. PD is not for everyone. Some people don't want to be in control of their health in this way. Some feel it is too much responsibility. They prefer that trained medical staff be in control and responsible. That is completely understandable. But for those who can follow instruction, can be disciplined, and desire more control and freedom with their dialysis, PD is the way to go.

I welcome commentary from other people on PD. This was just a brief overview of my experience.

Best wishes to you, Lisa! Best wishes to all!