Paying for Fistula and other expenses

The nephrologist has scheduled my husband for referral to a surgeon for fistula surgery. We have previously qualified for free care at the hospital where he will have the surgery done but there will be additional bills – from the surgeon, possibly radiology for vein mapping, possibly anesthesiology, and possibly others.

We have not been able to get insurance for many years and had been able to self pay until just a few years ago. Because we are both self-employed our small businesses make us ineligible for most financial aid. We could sell those assets but then we’ll both be unemployed and have no income – though at times it is tempting to do so due to our declining health and declining profits. So far we have been able for pay for kidney ultrasound, nephrologist appointment every 5 weeks, prescriptions for BP meds, Hectorol, lasix, and $265 labs every 5 weeks. But that’s about the limit for us.

Anyone have any suggestions on how to find funds for the fistula expenses, which will be just the beginning of the expenses which Medicare won’t cover? How does anyone w/o insurance pay for all of the expenses incurred before Medicare starts covering dialysis?

Thanks in advance.

Talk with your nephrologist and the surgeon about timing of the fistula placement. If your husband has his fistula placed at the beginning of a month AND he starts dialysis sometime that month AND he starts a home dialysis training program prior to the third full month of dialysis with the expectation that he will complete that program successfully, his Medicare could be backdated to the first day of the month dialysis starts. This would effectively mean that his hospitalization, access surgery, and his physicians’ fees could be billed to Medicare. EXAMPLE: Joe has his fistula placed December 5 and starts dialysis December 31. He begins a home training program February 15 (before March 1, the first day of the third full month of dialysis). Joe’s Medicare effective date would be December 1. Even if his fistula was not fully developed and he had to start training with a catheter, he could be learning the machine until his fistula was ready to learn how to stick himself (or for you to learn how to stick him).

People with Medicare who are 65 or older can buy a Medigap plan to help pay Medicare deductibles and coinsurance. If he is under 65, he should ask the state insurance department if your state requires companies that sell Medigap plans to people 65 and older to sell to people under 65 with Medicare. Most states do. With new Medicare drug coverage starting 1/1/06, he could buy a Medicare Part D plan. This could help him pay for his drugs if they are covered by the plan he chooses.

I don’t know how much income you and he receive from the business each year, but if it is low enough, it’s possible that he would qualify for help to pay the Medicare Part B and Medicare Part D premiums and deductibles.

In the meantime, have you talked with your state insurance department what group coverage might be available for small businesses or about high risk insurance for individuals? The high risk insurance isn’t cheap, but it would cover new health problems that you or he might develop while waiting to meet a pre-existing waiting period. With the high cost of health care today, as you know all too well, everyone needs to have health insurance.

Thanks so much, Beth. I really appreciate your taking the time to pass along such good advice.

So far the nephrologist says short of a working crystal ball there is no way to predict when 3 months prior to dialysis will be. Surgeon said today, after examining hubby’s arms, that he will need a minimum of three months for a natural fistula to “ripen” enough for use, if it ever becomes useable. :shock: This appears to mean he will need to wait until his kidneys fail, have the emergency placement in the chest, then attempt the A/V fistula in the arm. That scenario is sooo frustrating and just plain makes me mad. It will mean a much harder time for my husband and greater expense for Medicare to cover.

He is only 62 so if I understand correctly, he will not qualify for any Medicare until he is 65 or his kidneys totally fail. (Have any idea exactly what Medicare will accept as proof of kidney failure, short of actually being hooked to a dialysis machine?) His GFR in 15, Creatinine 4.3 – he takes hour long naps 2 to 3 times during the day – does not sleep more than an hour at a time at night because the lasix has him wearing out the carpet between the bed and bathroom and the Neph has encouraged him to drink a lot of water, which he does – swelling, numbness and tingling/itching in his extremities are annoying but not severe – PKD cyst pain is not severe but he has unexpected muscle cramps and drowsiness which make driving risky, so he can’t work. He has gotten so absent-minded that every day is like an Easter egg hunt – searching for his glasses, his slippers, his shoes, his belt, his billfold, the remote, etc., and occasionally forgets to take his meds.

He wants to stay off dialysis as long as possible w/o jeopardizing his health/life but we really don’t know when that is or how it is measured – especially in terms of satisfying Medicare. We’re hoping when it is time for him to go back to work in March that he is able to do so with an additional employee to do the work he used to do – which will be one more bite into the diminishing profit!

Yes, I agree that insurance is important, but we discovered many years ago that if you really need insurance then you can’t afford the premiums. We dropped our insurance when the premiums equaled half of our income and we had found we could not get insurance from any other company. Since then both of us have developed other health problems which would also preclude getting coverage by any company at any price.

Once he actually starts dialysis I forsee us qualifying for numerous programs which will help us financially, :slight_smile: but the expenses in the meantime are going to be quite difficult. BTW, the surgeon said if we pay half up front, he’ll write off the rest as uncollectable, but coming up w/ $1,100 is probably not possible right now. Maybe we will have enough time before he actually needs the fistula done to raise it from family and friends, but w/ the increasing costs of his meds, frequent blood work, and his declining health it is highly doubtful. :frowning:

It’s too bad you have to have these financial considerations as your husband gets closer to dialysis, which after all, is a difficult time in life no matter how you look at it. Fortunately, there are no such worries in Canada where I live. The nephrologist makes the necessary appointment for a consultation with the vascular surgeon when the patient is about 6 months to a year away from expected dialysis, and a few weeks later you’ve got the fistula. That’s all there is to it. There are no bills whatsoever as far as the patient is concerned, no worries whatsoever about who pays what when.

I was relatively young when I got mine ( 48 ), and in relatively good shape. No diabetes or any vascular problems. And yet, it took a good 4 months for that fistula to develop, despite frequent exercising of it. I started dialysis 2 months after that, so it worked out perfectly. There’s no way around this. During the 3 years I spent in a dialysis centre 3 times per week, I saw plenty of people who didn’t have enough lead time show up with marginally-developed fistulas. These people often have a lot of problems, sometimes having to use one needle in the fistula and the other access via a catheter. It’s important to get that fistula as early as possible. It’s anxiety provoking and unpleasant enough to start dialysis without having to do it with a catheter in the chest or neck.

That being said, I don’t want to scare you. Dialysis itself isn’t so bad. It’s time consuming and boring, but it’s not that bad. I never did peritoneal myself, but, personally, if I could do it over again and if I had no medical contraindications, I would start with peritoneal dialysis and go as long with it as it remains viable, and then switch to hemodialysis when necessary. Why? Because it tends to preserve residual kidney function better, and perhaps more importantly, it preserves all those potential fistula/graft locations for future use.

Good luck,


Thanks, Pierre, I really appreciate the kind words :slight_smile:

Sounds like you have handled yourself very well, and had excellent care in Canada. [Wanna’ adopt a 62 year old American w/ PKD? :lol: ]

We had hoped to avoid the fistula problems you mentioned by getting ahead of this (he has been exercising with a squeeze ball for a couple of weeks now) but it may not be financially possibly – but we aren’t giving up. The surgeon was sympathetic and understanding – despite running 2 hours behind on his appointments due to emergency surgery this AM, he acted like we were the only ones he was seeing today. I like him very much.

I understand about your view on PD and in the beginning Hubby considered it, but Neph quickly said it is not an option – Hubby is too large at 260+ pounds and his enlarged kidneys are full of PKD cysts and crowding everything in there already. His normal weight has usually fluctuated between 220 and 240, so we suspect the extra weight is cysts, and excess fluid.

Thanks again for the kind words.

So far as when you qualify for Medicare due to kidney failure, it is when you are considered to have end-stage renal disease requiring dialysis or transplant to survive. In other words, the paperwork starts when the patient either starts on dialysis or has a transplant. If his GFR is 15 (means he has about 15% kidney function), it sounds like he’s pretty close to needing dialysis. Medicare considers someone at kidney fauilre when their kidney function is 10-15%. His creatinine alone isn’t high enough to qualify him for Medicare coverage, but what is his creatinine clearance? If he’s not diabetic, his creatinine clearance needs to be 10 to be considered at kidney failure needing dialysis unless he has other medical reasons would justify his starting on dialysis sooner. I realize that he wants to postpone dialysis as long as possible, but he probably will start feeling better once he gets the toxins and extra fluid out of his body.

Has your husband been evaluated for transplant? Depending on his general health, he may be a good candidate. Of course he would need a full workup. He could be evaluated prior to kidney failure and be accruing time on the waiting list before his kidneys fail. Also, if he has a living donor, he could get a transplant pre-emptively (before dialysis). The transplant team would talk with him and you about the plans he has for paying for transplant medicines. Once he starts on dialysis or gets a transplant, he’d be eligible for Medicare (for dialysis, transplant, and anti-rejection meds), a Medigap plan, Part D (for drugs other than anti-rejection ones). It’s another option…

Hi y’all,

Lorell wrote:

This appears to mean he will need to wait until his kidneys fail, have the emergency placement in the chest, then attempt the A/V fistula in the arm. That scenario is sooo frustrating and just plain makes me mad. It will mean a much harder time for my husband and greater expense for Medicare to cover.

There is another option, here, and one that is being increasingly discussed as part of the Fistula First initiative: starting on PD rather than hemo with a catheter.

If your husband is medically suited for PD, he can get a PD catheter placed as little as 1-4 weeks before he needs dialysis. Because PD is a home modality, Medicare kicks in immediately. Then he can do PD as long as it works for him–if he likes it, and doesn’t run into any problems, that could be a number of years. In the meantime, he can have the fistula surgery–which will be paid for by Medicare. At whatever point PD doesn’t work for him, he will have a fistula ready to go.

PD is a good modality to start with because:
– Training takes only a week, and it is very easy to do
– PD preserves residual renal function longer
– The diet/fluid limits are less stringent than for conventional hemo
– The schedule can be flexible, as long as all of the exchanges are fit in (or a cycler can be used to do treatments at night)
– PD is a self-care modality that puts the patient in charge

You can learn more about PD on this site at