Introducing Dana Beth...

[IOnlyGet5]

I was diagnosed with ckd 2 years ago at stage 3 (eGfr of 37) due to not taking care of myself after death of my 23 yr old son in 2007 & not following my diabetic meal plan afrer my son unexpectedly died.

I am about to turn 57 & I am now in End Stage Renal Failure with an eGfr of 12.  I saw a vascular surgeon Spring 2017 who suggested PD b/c vein mapping shows tiny veins & he doesn't think Hemodialysis will work even if he can eventually create an access. Today I met the surgeon who will insert my PD catheter & was surprised to find it may not work out either b/c I've had prior abdominal surgeries but we are going to give it a try.

I am anxious & worried about all of this PD stuff & frustrated b/c I havent been able to get answers from the Dialysis clinic or my drs or insuranxe company on what to expect - can't even find out how much dialysis will cost to see if I can even start it or what I will have to pay for vs what insurance will cover. 

I was also surprised to learn that people who need/want a transplant have to go through so many hoops just to get ON the transplant list. 

I've been trying to get on the list since May 2017 and now have been told no testing -nothing - will be done towards going on the list until I've lost 20 pounds.  It would have been easier to lose that much weight 2 years ago than it is now when I nearly pass out just from walking my small dog to mailbox (asthma, severe anemia, fibromyalgia, pulmonary hypertension & possibly congestive heart failure depending on which doctor you talk to).

I'm recently a first time grandmother & worried I won't survive ESRD long enough to see my infant grandson turn into a toddler, let alone be old enough to remember me.

I expect to get PD access inserted in October & start PD then or in early November depending on my labs.
-- Dana Beth "so many questions about PD" Harvey 

[Charlie B53]

Hi Dana Beth,

Welcome to the IHD Family. Oh so many of us, most likely all, have had much the same feelings you are now having.
Being told you need to start Dialysis is a huge shock, instantly filling your head with so many "What If's". Trust that your Dr's and Surgeon will take great care of you.  They have done this many times, and will continnue doing well when it is your turn to get your PD Cath placed. 

I want to stress how important cleanliness is with your cath.  Very careful handling of the cath, Religiously clean hands while handling the Cath and the bags of fluid you will be using.  I failed, after 3 1/2 years I wasn't careful enough, once.  Be very aware of this and you will do fine.

PD is neat in that the Dr can taylor the prescription, the strength of the bags, the number of bags daily, the number of exchanges daily and the dwell time of each to fine tune treatment for your individual needs.

I found that for myself, always having 2 liters of infill that I could no longer eat massive as I had back when I was physically active.  The steady 5 pound annual weight gain reversed.  At that time I decided to make a positive change in my diet, and cut down, a lot, on the amount of white in my diet.  White flour, in all forms, mostly breads and noodles, I ate less of these, and when I did eat bread I started using that 35 or 40 Carb I found on the shelf in the store. Even ate less potatoes and rice.  I still eat them, just less portion size and/or less often.

In 2 years I lost 100 pounds that I didn't need to carry around.

Ice water became most enjoyable.  I had no restrictions on drinking as PD worked so well for me.  I still keep a half gallon jug of water in the refrigerator for those times when I feel that I just have to have a mouthful.  Now on Hemo I seriously restrict my fluids far far more than while on PD.

Again, Welcome to IHD.  You have come to the right place to get answers for all your questions.  Don't be afraid  of asking.  NOT asking questions is the worst thing, leaving yourself to worry about all those "What If's" cannot be good. 

Take Care,

Charlie B53

[Michael Murphy]

I welcome to the site.  I personally believe starting dialysis based on labs is a mistake.  The best measure of when to start is how do you feel.  I went two years past the labs indicated start date.  I have seen people miserable at the same GFR level others are feeling great.  As what to expect. First the fear of dialysis is much worse then the actual experience, second, take a tour of a dialysis clinic I know I wish I had.  I am a HD patient so personally dialysis between driving back and forth to the clinic, the 4.5 hours on the machine and setup and take down time about 18 hours a week.  That still leaves 150 hours each to enjoy the life dialysis brings.

[cassandra]

Welcome to the site Dana

   

I'm sorry to hear about the loss of your son.

And good luck with your op in October, and losing weight 

Take care, Cas

[kickingandscreaming]

Welcome.  I do PD and it's going well.  But PD can be a double-edged sword when it comes to weight.  On the one hand, as Charlie says, being full a lot of the time makes it harder to eat a lot  On the other hand, being full of dextrose (sugar) based fluid adds the calories of the sugar and sometimes worsens diabetes.  I find it very hard to lose weight on PD especially when I am being told to increase my albumin (protein) all the time. 

It sounds like you are fluid logged from needing dialysis and that may be why you can't walk your dog.

[kickingandscreaming]

can't even find out how much dialysis will cost to see if I can even start it or what I will have to pay for vs what insurance will cover.

Assuming you live in the US, Medicare will pick up your tab as soon as you begin dialysis (altho there is a brief time lag).

[Simon Dog]

Assuming you live in the US, Medicare will pick up your tab as soon as you begin dialysis (although there is a brief time lag).

An ESRD patient becomes medicare eligible at age 65 or after 30 months on dialysis, whichever comes first.   Not sure how it works for an uninsured person under 65.

[iolaire]

Welcome to the group @IOnlyGet5.

An ESRD patient becomes medicare eligible at age 65 or after 30 months on dialysis, whichever comes first.   Not sure how it works for an uninsured person under 65.

? you become eligible on the 1st day of the fourth month after starting dialysis. The 30 month date is the point where you MUST be on Medicare... for exmaple those of us with private insurance need to be on Medicare at the 30th month point as that will become primary and your insurance knows that.

See:
https://www.medicare.gov/people-like-me/esrd/getting-medicare-with-esrd.html#collapse-3170
If I enroll in Medicare because of ESRD, when does my Medicare coverage start?   
When you enroll in Medicare based on ESRD and you’re on dialysis, Medicare coverage usually starts on the first day of the fourth month of your dialysis treatments.

Also good details at:
https://www.cms.gov/Medicare/Coordination-of-Benefits-and-Recovery/Coordination-of-Benefits-and-Recovery-Overview/End-Stage-Renal-Disease-ESRD/ESRD.html
Covering both 4 month and 30 month coordination period, but the 30 month is a bit unclear, because its says Medicare is secondary for 30 months, but doesn't clearly say it becomes primary after 30 months in this statement:
Medicare is the secondary payer to group health plans (GHPs) for individuals entitled to Medicare based on ESRD for a coordination period of 30 months regardless of the number of employees and whether the coverage is based on current employment status.

[smartcookie]

Hi, Dana Beth!  I am sorry you are going through all of this.  Dialysis really does suck, but the good news is that if you are carrying a lot of fluid around, dialysis may get you to that 20 lb. weight loss goal!  That at least is a good thing.  Insurance wise, Iolaire is right.  You are eligible for Medicare three months after starting dialysis and it is retroactive to the day you start.  It covers 80% of treatment.  If you have any other type of medical insurance, Medicaid or commercial, the other 20% will be covered making dialysis essentially free.  I do have some patients that have commercial insurance that make them pay their deductible, but not always. 

I am looking forward to reading more of your posts! 

[iolaire]

If you have any other type of medical insurance, Medicaid or commercial, the other 20% will be covered making dialysis essentially free.  I do have some patients that have commercial insurance that make them pay their deductible, but not always. 

Once I had Medicare secondary my dialysis center stopped billing the deductible.  I always assumed that was because Medicare might force them to pay Medicare rates if they were charged the deductible.  My center received $1,500/session from my insurance so that was much better than the Medicare rate.

Once Medicare became primary (after 30 months) my commercial insurance was covering the co-pays but I still had to pay towards my deductible so I was paying something like 20% of that 20% co-pay each session.  It was not a lot but I was receiving DaVita bills that I had to pay.  Prior to that I only received DaVita bills when I didn't have Medicare.

So the key point all of this is Medicare will pay for dialysis but you still need a backup insurance plan to pay that 20% co-pay...

[Michael Murphy]

Talk to the social worker or insurance coordinator at the clinic you are going to use. They will help you get your insurance in the best config for your needs. If you end up on Medicare as primary some states have  Medicaid coverage for the 20% not covered by Medicare.  The best place for insurance advise is your clinics insurance coordinator.  Good Luck.






Sp mod Cas

[solid98]

I am anxious & worried about all of this PD stuff & frustrated b/c I havent been able to get answers from the Dialysis clinic or my drs or insuranxe company on what to expect - can't even find out how much dialysis will cost to see if I can even start it or what I will have to pay for vs what insurance will cover. 

-- Dana Beth "so many questions about PD" Harvey 

I freaking HATE that they do this. I had the same concerns you have now and like you, NO ONE would address my worries. I found out as I went thru the process and training, my concerns were not as serious or as bad as I had imagined. The nurses and doctors know this so they just say "Don't worry, it'll be fine." WHATEVER questions you have, ask them here, we won't sugar coat it.

I had my cath placement surgery June 2016, started training the end of July 2016 and my Medicare was effective July 1 2016. I couldn't work at my regular job but thankfully the American Kidney Fund pays my COBRA premiums, so between my private insurance and Medicare being secondary, I have not paid a dime out of pocket for anything. I have not even been billed for anything, but the insurance specialist at the clinic tells me to just bring the invoice to her and she'll take care of it.

It's bullshit, but the clinic social worker, insurance specialist, and nurses would not even speak to me until I started training because I "wasn't their patient yet." After your cath surgery is healed and you start training, everyone will come out of the woodwork to help you out.

Also, if/when Medicare becomes primary, look into a "Plan F" Medigap policy. The premium is the highest but you will not have to pay anything else out of pocket. DO NOT FALL FOR AN ADVANTAGE PLAN! Don't even get me started on Advantage plans.

Edit: I shouldn't ASSUME you are in America, but I did.

[Charlie B53]

Medigap Plans F or G cover all the co-pays that Parts A and B leave on you.

You will have to shop some as many insurance companies offer these plans and the rates can be a lot different.

When shopping for the Wife's coverage we almost went with AARP but found another carrier that was $60 LESS!  Pay attention to the rates.  Make the phone calls to compare rates, the coverage is identical.

[kickingandscreaming]

I have a Medicare Advantage plan and i'm quite happy with it.  It may vary from state to state (I'm in MA).   I do pay copays, but no deductibles.  I don't pay anything for PD.

[IOnlyGet5]

Wow! You guys are the BEST!
I feel better about this dialysis stuff than I have  felt since first diagnosed with ckd 2 years ago! Thanks!

[Simon Dog]

you become eligible on the 1st day of the fourth month after starting dialysis

I think you don't have to wait to month 4 if you are doing home treatment.