at 17% function you should be evaluated for transplant and should be learning about the various types of dialysis. you should be seeing a kidney doctor and having blood work done on a monthly basis.
you need to have serious discussions with your kidney doctor (nephrologist) about your options for the future. the doctor should help you understand what your lab results mean, any diet changes you should make, any medications you need to take.
it sounds as if you aren't getting the support you need. a support group can give emotional help and some advice but without real knowledge of your lab results can only guess whats going on.
please post all the information you know of, any highs or lows in your labs, your blood pressure and all. we can't give medical advice but at least we can point you in the right direction.

Hi Polykid, I'am sure you are overwhelmed and this is a good place to vent all of that. Get all the information that Helen and all of us
need to help you through this. Your not alone honey, we are all here to help in any way that we can. ok? Have a good day and try to calm down.

Lots of love and hugs to you,
Norma...

Spiderwoman has given you good advice. Have you been getting your blood drawn regularly? If so, do you get a copy of your lab results? If not, why not? In order to know how to help treat the problems in your body that you may have because of the failing kidneys, you need to know your lab results. Are you on blood pressure medications? How is your red blood cell count? Are you anemic? How is your vitamin D? Do you need any supplements? How is your potassium? If these numbers are out of normal range, you may feel a lot worse than you need to, even as you are waiting for a transplant or dialysis.

Do you want a transplant? If so, are you on a list? Transplant evaluators (who help you go through the process) should be talking to you about what you might expect throughout the transplant process. Do you have someone who is willing to be a donor for you? If not, then you need to be on a list to wait for one. If so, then you should be going through the process, the testing that is done beforehand.

If you decide on a transplant rather than dialysis, do you have a choice as to whether or not you do the steroid protocol? Some hospitals give steroids to help fight rejection; some hospitals do not. What does your nephrologist think about using steroids? You may not have a choice here, but it's good to know one way or the other.

If you decide on dialysis, which kind of dialysis do you want to do? Your nephrologist should be able to discuss the different options with you and give you some information as to the pros and cons of the different kinds.

I hope I haven't overwhelmed you more. It sounds like you want answers, and I know for me, it helps to know more rather than be kept in the dark and not know what's coming. Continue to ask questions (if you want to know). I am not yet at the stage that you are, but from everything I have read and heard, the uncertainty is worse than the reality. It's scary; no getting around that. But with lots of support, you will feel much better, whether you do dialysis or get a transplant. We're here for you--

Polykid,
I see that you are still going to the free clinic. Have you applied for Medicare yet or Social Security benefits? This is a critical process that needs to be addressed. Without adequate health insurance coverage, you won't be able to be assessed for a transplant and if you need to start dialysis without having medical coverage, finding a dialysis unit to take you could be challenging. There are a lot of things to consider when talking to your neph, but the most important thing you need to do, right now, is apply for disability or Medicare.

For resources and help in this process, I would call the transplant center closest to you and talk with a financial coordinator or a dialysis unit close to you and talk with their social worker. They will know what the process is and may be able to assist you in filling out paperwork and sending it off for evaluation.

Hope this helps. Keep us informed of your progress,
Happy new year,
Tami

Hi, Polykid!

Yes. You are overwhelmed.

You need an education.

I don't know if you're aware of the many websites that have information about PKD, dialysis, transplant, and info on how to deal with all of it.

Hopefully, your nephrologist will explain some of this to you.
But, doctors don't usually have the time to go into the depth of knowledge you probably need.

The info on the Web, of course, is free.
How to process the free info...that's another story.

Obviously, I don't know what you know or don't know about all this.
My point is that with some study, some good questions, and guidance from this community, you will shortly get yourself "up to speed" in becoming a good PKD patient.

Don't hesitate to message me if you need some assistance!

Peace and Blessings!
CoachRichie
http://www.InnerGameOfPKD.com

You guys sure know a lot more than I do. I am a low-potassium diet and I take the following meds.

Spironolact 25mg one tablet a day. Lisinopril 20mg twice a day.
Dilt-XR 180mg twice a day.

I didn't know I can try to apply for medicare now. I thought I had to wait until I dropped to 14%.

I want a transplant and I have family members willing to donate. I am assuming that I need to get some type of financial aid before I can be evaluated for a transplant. I am going to seriously talk to my doctor at the clinic about this. Since I see that I am kept in the dark. Thanks for the help and if there is anything else let me know.

Polykid, a place to start may be your nearest transplant center. in addition to all the other things needed for a transplant, they should have a social worker on staff who can help you with your financial matters, as well as other things.
like everything else, some social workers are better than others but a good one is worth their weight in gold. transplant centers being what they are, probably choose the best social workers.
good luck and let us know what you find.

Polykid,
Part of the process for being accepted for transplant is ensuring that you have the ability to not only pay for the surgery, but more importantly, have some form of insurance to cover the cost of your anti-rejection meds. The Transplant Centers Financial Counselor will be a great resource for helping you apply for Medicare/Medicaid or any other healthcare plans she thinks you'll qualify for. If you are employed, it would be a good idea to opt into your employers group insurance (if it's offered). This can be expensive, but it goes a long way in being able to help qualify for a transplant.
Medicare has a specific benefit for ESRD patients. The transplant centers social worker or one at your local dialysis clinic will have the most information on this program. It's designed for patients who are ESRD regardless of age, employment status, etc. ESRD is classified as a eGFR less than 15%. It can take a while to get through the process, so at 17% I'd be working on it.

The benefit for ESRD is different than disability. That's an entirely different program and one that you may well qualify for, immediately. Although there are a lot of people who work with a function less than 20%, if you're not already employed, it can be difficult to get a job due to multiple doctors visits, dialysis, transplant evaluation appointments, etc. I'm not an expert on disability, but you can apply on-line, at which point you get an appointment time for a telephone interview. There is required documentation from your physician and it can be a little time consuming, but with disability you get coverage for healthcare needs.

Hope this helps.
Take care,
Tami

A couple of excellent resources are the American Association of Kidney Patients, www.aakp.org. The are a community of kidney patients who have been there, done that and work with people just like you who need help navigating the system. They provide in-person support as well as many other programs as well. All kidney patients and families are welcome.

The second organization is the National Kidney Foundation. They too are hands on and have a number of financial assistance programs as well. www.nkf.org.

Both organizations will help you navigate the Medicare/Medicaid process as well as the transplant evaluation process. NKF can help you to pay for your medications and even has some programs to help pay for utilities, depending on where you live and if they have the funds available.

Both have user-friendly websites and NKF has an extensive on-line education program on all facets of dialysis and transplants.

Your financial situation is awkward; right now you're a bit between a rock and a hard place. You're not on dialysis, so not eligible for Medicare based on ESRD alone, but there may be additional reasons (PKD included) that will qualify you for social security disability. With no income, you may be eligible for supplemental payment from social security as well. From there, comes Medicare (or whatever your state calls it). Each state is different and some states have extra programs for kidney patients that kick in at an earlier point than regular Medicare and may have less restrictions (check you state medicare website and also check for any state kidney programs, e.g. Maryland has a very generous program for their kidney patients that covers what Medicare doesn't, etc.).

There's always hope, but sometimes you just have to go out and do the leg work (or in this case, finger work online). Search, bookmark and print the information you need and apply for anything that looks promising (don't assume that just because you don't meet every single criteria, you won't be accepted; there are exceptions to every rule and waivers and appeals for every program).

Good luck and keep us posted!