Kidney School Clarification

[catwoman]

Hello guys:

I've been on here a few days and have more questions if you all don't mind. I went to the kidney school.org site and read a disturbing sentence that I want clarification on. According to their website, Medicare WON'T pay until your creatinine level is at a 8 in non-diabetics? Is this true?

[shay_pcb]

I doubt it. You automatically qualify for Medicare and Disability when you start dialysis, no matter what your creatinine is. Everyone starts dialysis with a different creatinine. I think GFR has more to do with it though. I'm sure someone here will come clarify this for you. I just didn't want to leave this with no reply.

[chefnancy]

That is definitely NOT true. The law requires that you get SS Disability after you go on dialysis. Whether you get it before dialysis depends upon a judgment as to whether you can do your former job or be retrained for another and sometimes the bureaucrats' ideas of what constitutes ability to work are pretty weird. It is true that Medicare can refuse to pay for your dialysis if they consider it to be medically unnecessary and there are guidelines governing when to put people on dialysis. You won't be put on dialysis just because you feel crummy. That decision is based not only on your creatinine, but on your BUN (amount of urea nitrogen in your blood), and levels of other substances. If you are not on dialysis, feel crummy, and think that going on dialysis is the answer to your problems, you need to revise your thinking. While dialysis is a life-saving procedure and does make many patients (but not nearly all) feel better, it is not a benign procedure (you are having all your blood removed and run through a machine) and has its own side effects. But don't worry. If dialysis is deemed medically appropriate for you, you will get SSD.

[catwoman]

Okay, you guys will have to clarify some more because I'm a bit lost as to all this. I assumed that it was up to the nephologist as to when you started dialysis. Second, why would I need to start SS disability if I made the decision to do home dialysis and work? No, I don't think I want to start dialysis now - the only thing affecting me is that I feel a bit tired occasionally. I still have my appetite - in fact I want to eat everything and anything all the time. My GFR right now is 15. I don't know my BUN off the top of my head. I have cut down considerably on my protein, sodium, etc. and I feel I'm starving to death doing this. I want a 6 ounce steak, but right now am eating 3 ounces.

I assumed starting dialysis would save me from going into end stage and having my kidneys fail at a time that I don't want them to. Isn't it better to start dialysis before feeling too sickly as it would take more time to get yourself back on your feet compared to starting it early? OR is this the wrong conception?

I hope not to lose my job. This is what is going through my head. I have a wonderful group of people I work with and would hate to think that all that I have worked towards (schooling to get this job) would simply be blown away just because dialysis made me too sick to get back up and out to the work force. Otherwise, I think it better to purchase a hand gun and stick it to my head if this is the outcome of what I'm looking forward to.

[chefnancy]

I think I confused you with someone else when I was replying to your question. No, the sole criterion is not a creatinine of 8. It is based on a lot of factors. And yes, it is up to your nephrologist but he/she has professional guidelines to follow. I certainly hope you can continue to work after starting dialysis, and there are people who are healthy enough to do so. If it turns out you are not able to work, you do automatically qualify for SS disability. I am on hemo and have a number of other medical problems. I am debilitated enough that I can't imagine working, even though I loved my work. I understand that home dialysis (did you select PD or home hemo? I can't remember) is a bit kinder to the body and I believe you are younger and healthier than I am, so it is very possible that you will be able to work. I hope this clears up the confusion.

[StansWife]

"I assumed starting dialysis would save me from going into end stage and having my kidneys fail at a time that I don't want them to. "

You are considered End-Stage Renal Failure when you are on dialysis. You don't start it to preserve function. You need to have you access done in plenty of time for it to be healed when you do need it.

Many continue to work.

The person who said being on dialysis automtically qualifies you for SSD is wrong. It qualifies you fore Medicare. SS is still determined on a case by case basis.

Dialysis makes you feel better, not worse, if you follow your restrictions and do all your treatments. (Some skip treatments or ask for them to be stopped prematurely.)

Before dialysis, my dh was almost too weak to even get in and out of his wheelchair. Now he is feeling so good he is able to drive and lead a more normal life.

[catwoman]

Thank you all for clarifying some points. I'm a bit lost because I left my nephologist of 18 plus years because he never suggested anything - no diet, no meds, nothing. I assumed that going on dialysis early would be better (starting treatment early) versus waiting until my GFR was too low whereby I was too sickly to get back on my feet after starting dialysis.

I have heard both positive and negative in doing hemo. I am scared to start if that becomes the decision because I have heard horror stories of people having a hard time starting dialysis and never being able to return to work because they are too tired all the time.

As I stated before I'm 42 years old; I run close to 8 miles a week, ride my bicycle close to 15 miles per week and do weight workouts twice a week. The only thing affecting me is feeling a bit tired. I have an enormous appetite and cutting back is killing me.

Will dialysis help me now? Or do I wait until I experience more symptoms and see if I start to get sickly - then start? When is it time to start dialysis?

[chefnancy]

Do you have another nephrologist yet? If not, getting one should be your first order of business. Then you worry about the other things. I am surprised you feel so healthy with a GFR of 15, but more power to you. Hemo has made me feel better, but I was warned beforehand that that is not the result for everyone and there are some clients in my center who do everything right and still feel terrible on dialysis. I was told by the people at the local SS office that I automatically qualified for both disability and Medicare payment for my treatments once I went on dialysis. That has proved to be the case for me. I am not an expert on SS law, but I was led to believe that the "exceptional case" rule that covers dialysis patients covered both disability payments and medical payments. Anyway, it doesn't matter in this case because you WANT to continue working. You and your nephrologist must choose the type of dialysis that is right for you together, considering a number of factors including your current state of health and your desire to keep working. You need to get your access surgically placed before you start -- the amount of lead time required differs according to whether you choose PD or hemo. Ideally the access will have ample time to heal before you begin treatment. When your overall test profile indicates that you need dialysis, then you will be placed on it. Many nephs believe in starting dialysis before you "hit bottom" and are in a health crisis. But at a GFR of 15, if you are non-diabetic, you probably have a while before you hit the point of needing dialysis.

[shay_pcb]

Stanswife--Dialysis patients DO automatically qualify for disability. How much they get is determined by their personal cases. That's why dialysis patients don't get turned down the first time they apply like most other people who apply. But it is still their choice whether they go on disability or keep working.

Catwoman--I just wanted to clear something up. You seem to think that you will feel horrible if your numbers get bad enough, but that's not true in everyone's case. I never felt sick before I started dialysis. I only slept more than usual, and that's all. With how much you exercise and do everyday, I doubt that you will feel anything more than tired also. Then after a few sessions of dialysis, you will be back to normal. Your body has to get used to dialysis, that's why I say that after a few sessions you will be back to normal.

But Nancy is right, you need a nephrologist. You can't just start dialysis without a neph. lol. But I'm sure he/she would be able to tell you about how much longer until you need dialysis. Like I said, not everyone experiences all the symptoms.

[StansWife]

Guess they made a mistake with my husband, Shay, because that isn't what happened with us.

[catwoman]

Okay guys...let's clear the air. First of all, YES, I had a nephologist for 18 years until he went squirrelly on me. He didn't understand why with a GFR of ony 15, that none of my other blood work numbers were off. My only numbers that are off in my blood work is my creatin. 3.6, GFR at 15 and CO2 is a bit low (not horribly, just a little bit). He couldn't understand why I wasn't anemic or showing any signs of kidney failure - loss of appetite, swelling, excessive fatigue. I figured if he couldn't figure me out, why am I wasting my time with him.

YES, YES, YES, I am to see a nephologist at Johns Hopkins in November. Again, if you were reading my posts, I exercise a lot during the week and only feel a bit fatigued. I have a strong appetite, have no swelling and on days that I can sleep a little extra (Saturdays/Sundays), I feel normal with lots of energy. So, explain that.

I really don't want to hear the horror stories about people who had dialysis and ended up worse off. Where is the support in this forum if you have to hear the horror stories? I'm thinking positive that if and when I start dialysis, I will feel better and still be able to work. If not, then I will have to face what is given to me and deal with it then.

Also, don't assume that I'm stupid...who would start dialysis without a specialist? Okay guys give me some credit will ya!!

[chefnancy]

Since catwoman has said elsewhere that she is getting off the forum, this reply may be futile, but I wasn't trying to be negative, just realistic. Take things one step at a time and you'll be OK. We are all pulling for you.

[LindaE]

Even I'm a little confused by this conversation and I've been dealing with this for a long time. I did not automatically qualify for disability when I began dialysis. I DID automatically qualify for Medicare after 3 months on dialysis. I had to be approved for the disability after I decided that working full-time was too much. It took 6 months for me to begin receiving it and during that period I had to work only the hours they decided that I could work and still qualify for disability. The 6 month period was over the Christmas holidays and man, was that a hard time for us! I was told that people died waiting for the determination of qualification to be made. They did tell me that had I chosen to quit work when I first began dialysis that the payments would have began pretty much immediately but a determination still had to be made. Nothing concerning the government appears to be a done deal. Lots of loop holes to look into and the best way to deal with it is to speak to your medicare caseworker. Mine was invaluable during that time. Some things vary from state to state so make sure to speak to someone in the know in your state. That is why I suggest your medicare caseworker. I thought dialysis was a snap compared to getting through the red tape and things got even worse after my transplant. There was a period of time where no one, private insurance or my medicare paid the bills. Each decided they weren't my primary provider and it took months to straighten that out. Best of luck to you and make sure you take a friend or spouse every time you speak to someone regarding the issues so you don't misunderstand.

[Denea]

Federal benefits

Let me clarify a few things; first the Nephrologist does determine when you start dialysis. The general guideline is that a non-diabetic’s Creatine needs to be 8 or greater to start treatment, however if it is lower the MD needs to justify why the person needs to start earlier. There are many ways the MD can justify this and it should not be source of concern.
As for federal benefits of Medicare and Social Security disability, they are usually lumped together however dialysis patients are the exception. If you worked and paid enough into Social Security, you will automatically qualify for Medicare. The effective date depends on if you are on PD or Hemodialysis. If you are on PD, it will begin the month your training start, and three months if you are on hemodialysis.
(If you are not on dialysis but are receiving Social Security Disability you will qualify for Medicare after a two year period).
To qualify for Social Security Disability you must have been unable to sustain work for a six month period and unable to work for the following 6 months (not work for a year). They do tend to “fast track” those on dialysis; you can start your application without having to wait that first 6 months, and there are little to no denials for those on dialysis, however benefits are not guaranteed. Those on dialysis are not required to go on Social Security Disability, and many individuals do much better if they maintain the lifestyle they had prior to starting treatment. Individuals may find if very hard to work and should consider alternatives, such as cutting down their workload or taking a leave of absence until they are adjusted to treatment.

[shay_pcb]

YES, YES, YES, I am to see a nephologist at Johns Hopkins in November. Again, if you were reading my posts, I exercise a lot during the week and only feel a bit fatigued. I have a strong appetite, have no swelling and on days that I can sleep a little extra (Saturdays/Sundays), I feel normal with lots of energy. So, explain that.

Also, don't assume that I'm stupid...who would start dialysis without a specialist? Okay guys give me some credit will ya!!

First, I didn't mean to offend you. I was just being goofy. I try to laugh at everything and keep a positive attitude. I guess it comes out wrong online sometimes. Sorry.

Anyway, I never felt anything either, but my labs were a little off, but I did feel great and worked 40 hours a week and all. With how active you are, that's probably why you don't feel any of the effects, but it doesn't mean that you aren't sick...well, I don't want to use the word sick, but that's the only way I can think to put it. Your kidney failing means that you aren't filtering out everything that needs to be filtered out, and it takes time for it to build up until you feel it. For some they feel it sooner than others.

I think I'm just digging a hole. lol. I guess I will stop trying to help for now. It's all really complicated. I guess you just need to find a good nephrologist to help you out with it.