Isnt it my decision? a rant...

[gothiclovemonkey]

Is it not my choice if i want to do pd or hemo or even stop d? i didnt know i needed my drs permission to do pd...
i asked him if i could do pd again, first thing out of his mouth, "Did i give u permission to do pd?" UH.... well, i am asking u now, but i wasnt aware i needed permission... then weeks go by, he finally comes back to say, "the whole dialysis team does not think u should do pd." ok............ thanks... thats great.
i did it before, it was great, and ya, after a few months something went wrong, but that few months was great, and i want to give it one more try. i cant afford the gas back and forth to dialysis 3 days a week, its over 3o miles away, thats alot of gas!

[ToddB0130]

Maybe you can try home hemo instead ??  Perhaps he's concerned about whatever went wrong the first time happening again ?

[Brightsky69]

I've been on PD twice and the 2nd time my doc said that if there was too much scar tissue then I wouldn't be able to do PD. It all was ok in the end but if I ever have to go back to D I wonder if I will be able to do PD again.

[jeannea]

I think you are at least allowed a coherent explanation of why you can't do PD. Your doc sounds real helpful.

[jbeany]

Well, it kind of is his decision if he wants to prescribe PD, and no doubt he'll trot out the "First do no harm" explanation and claim it would be a disaster for you.

On the other hand - it's your decision if you want to get a second opinion and a new doctor!  You don't have to believe him or take his opinion as the final one.

[Desert Dancer]

Hell yes, it's your decision! He can advise you, he can recommend to you, but he can't dictate to you. Who in the hell does he think he is? (Don't answer that, we all know the answer already.)

Unless he can sit you down and give you some really solid medical reasons why he doesn't recommend it, I'd tell him to go pound sand down a rathole and find another doctor. It's your body and your life, not his. What a bunch of equine excrement.

[gothiclovemonkey]

I know that it didnt go well the first time, but it was because the cath got pulled a bit, so it wasnt in right... then while i was getting that fixed, i got infection in the hospital because the nurses werent being careful and didnt know what they were doing!

I dont think i could stick myself, and dont u have to have someone with u to do home hemo? i dont know much about it...

[KarenInWA]

I know that it didnt go well the first time, but it was because the cath got pulled a bit, so it wasnt in right... then while i was getting that fixed, i got infection in the hospital because the nurses werent being careful and didnt know what they were doing!

I dont think i could stick myself, and dont u have to have someone with u to do home hemo? i dont know much about it...

So he is not letting you do PD because of screw-ups made by medical professionals who were supposed to take care of you??? Now, that just ain't right. I say get a 2nd opinion, and if any permanent damage was done by the hand of those-who-should-know-better - I'd probably take that complaint to the ESRD network in your area.

As for home hemo, from what I understand, it is a lot easier to do with buttonholes, and everyone who has done it (either at home, or in-center) says they prefer to needle themselves. They have more control and all of that. I never did it myself, but if the transplant didn't work out, I was going to start going that route. Bill Peckham and Meinuk are both good resources for doing home hemo on your own. I know not every center allows it, but others on this site have found ways around it. Since you do not live alone, that may help you if you decide to go that route. (just nice to have someone nearby just in case of an emergency. Not a common thing to happen, but good to have the "insurance" of someone who is around.)

KarenInWA

[gothiclovemonkey]

ill have to look into home hemo, i really dont know anything about it, but i recall someone mentioning that u have to have a special water supply? if i end up moving it will be to an apartment im sure, and i doubt thats an option... idk.
I plan on trying to find a new doctor, so far ive not been successful there, but if i move this summer, i wont have any trouble finding a new doc.

ya, my doctor is a jackass! when i was having issues with the pd, he tried telling me i was fine, and it was my "normal anatomy" to have 54 lbs of fluid on me!
he never listens to me, either.

ill figure it out. I wouldnt mind doing what im doing now, if i didnt have to travel to do it!

[KarenInWA]

For NxStage, if you are on well water, they would want to test it first before using their machine. If you're on city/county water, you are probably okay.

And yes, if you move into an apt, or even where you live now, you'd need to take into consideration room for the machine and all the supplies. You already know that from doing PD. I have read that NxStage takes less supplies than PD, so at least that's a good thing!

KarenInWA

[Desert Dancer]

I dont think i could stick myself, and dont u have to have someone with u to do home hemo? i dont know much about it...

For the record, I do home hemo by myself. SHHHHHHH... don't tell anyone. If I were to get on the machine in enough time to get up and off before Andy leaves in the morning I'd have to be on by 6:00 PM or earlier. Ain't happening. So we have our evening together and then he goes to sleep while I get myself on the machine. In the morning we use the phones as code: one ring when I start the return and one ring when I've finished and taped off. If he doesn't get that second call he calls me. If he doesn't get ANY calls he flips out and comes home.    He works less than five minutes away.

It works out great and we've been doing it that way for eight or nine months now. I'm pretty sure my clinic would have a conniption if they knew, but maybe not. They did admit they allow people to do home hemo without a partner on a case-by-case basis.

[gothiclovemonkey]

i guess i can look into it more, does medicare cover that though?

[Desert Dancer]

i guess i can look into it more, does medicare cover that though?

Medicare covers all dialysis. As a matter of fact they start covering it sooner if you train for PD or home hemo; the first month instead of the third.  Medicare's all I've got.

[gothiclovemonkey]

awesome! ill definitely check it out then. I really cant afford the gas! 180 miles a week... thats just too much! plus the drive after treatment is scary.
is it the same type of times as incenter hemo, 4 hrs, 3 days a week? pd for me was 4 times every day...

[Rain]

Can't you claim your gas expense on your taxes for your treatment?  I know in canada you can if you have to receive treatment and travel so many kms a week.

I never had to do it since I live a 10 min walk to my center.

[looneytunes]

Gothie...our social worker has offered financial assistance to us if the gas expenses are too great.  We drive about 100 miles one way for clinic services.  You might ask if this is available to you.  Also I have heard Medicare will pay for transportation (like the Medi-Transport service).   

Yes, the choice should be yours as to PD or HD and without some real good medical reason for the doctor's opinion (which he should be happy to explain to you), I would seek another opinion. 

I hope things get better soon for you.   

[gothiclovemonkey]

My social worker used to give out gas cards, they were like 20 bucks every... 3 months? but i guess they stopped doing that. And the only other program she knows of is thru NKF and they arent taking any applications at this time.
I will bug her some more, to find something... there has to be something. Although I find that alot of places just dont help people on D. There is nothing in the way of childcare either! That was my number one reason for wanting to do PD the first time!
I dont file taxes because im on disability.

[jeannea]

For those of you saying you do home hemo alone, there is a problem. In the US, it is not approved by the FDA to use if there is not another trained adult living with you. They are not allowed to prescribe it. Yes, they can't be sure if that person was home at the time but if you live without an adult partner you can't have it. That is apparently not true in Canada and Australia but it is here. Sorry but it's the law. You would be better off pursuing a new doc and PD since it sounds as if you have no adult help.

[gothiclovemonkey]

i live at home, my dads home, so i have an adult here, but my thought is, if something were to happen and they had to go somewhere...or if i end up moving in iwht my bf, he works odd hours, its different every day...

[thegrammalady]

if my doctor ever said anything like that to me, i'd be out looking for another doc in a heartbeat! it's like when i wanted to learn how to operate my machine (i do in center) fresenius said i could learn if my doctor said i was capable. come on now!!! my doctor just laughed. hasn't stopped me. i think they thought if they put a roadblock up, i'd give up and go away. not gonna happen. it's not that i really want to set up my own machine i just want to make sure they've done it right. i check it very carefully every time i go. get a second opinion! and keep bugging your until you get a satisfactory answer. you can even use my favorite saying.. "it's my life, do it my way or don't do it at all"

[Meinuk]

For those of you saying you do home hemo alone, there is a problem. In the US, it is not approved by the FDA to use if there is not another trained adult living with you.

I have to call you on that Jeanna, can you please show me WHERE there is any federal regulation that states that?  Because I have to say, that is just not true.

This subject gets my back up because I have been working for YEARS to change the prevailing perception that the patient cannot do anything themselves in dialysis.  We are not helpless.  Saying that there is a federal regulation when there is NOT, just plays to the hand of the dialysis industry.  (There are some State exceptions, and I have written about that at length)

Here is a quote from the FDA Guidance Briefing from 2005 (not a final rule, but their stance is CLEAR):

3.4     Use of a Partner and Remote Monitoring

Some studies have suggested that home hemodialysis can be done by the patient without the need of an assistant or partner (5)*.  This raises safety concerns, however, that warrant being addressed by the device design, patient training, and/or monitoring performed.

Patients receiving in-center conventional hemodialysis are under constant monitoring by medical personnel.  This is not the case for patients doing home hemodialysis during the day or night.  Further concerns arise from the fact that NHD patients are typically asleep during treatments.  The London Daily/Nocturnal Hemodialysis Study, a prospective, comparative, non-randomized study, suggested that “Monitoring is essential for the initial 3 months of nocturnal HD therapy until the HD team is convinced the patient is stable and compliant” (6).  In cases where a partner is not available and remote monitoring is not used, additional treatment and device safeguards may be necessary to ensure patient safety.

http://www.fda.gov/ohrms/dockets/ac/05/briefing/2005-4144b1_01_FDA%20brifing%20document.htm


*5. Raija M, Riitta MK, Meeri K, and Eero H.  Experiences on Home Hemodialysis without an Assistant.  Hemodialysis International 2003; 7(1):73-104.

[jeannea]

The FDA website is awful and their search does not return the official prescribing info for NxStage.

I did find http://www.nxstage.com/sites/default/files/pdfs/APM494_RevB.pdf which has
There are risks associated with hemodialysis treatments in any environment,
and certain risks are unique to the home.  Treatments at home are done without
the presence of medical personnel.  Patients and their partners must be trained
on what to do and how to get medical or technical help if needed.
All treatments must be administered under a physician’s prescription, and must
be observed by a trained and qualified person, considered to be competent in
the use of this device by the prescribing physician.

I realize this isn't the official thing. But I have not heard of any dialysis centers in the US that will allow you to do NxStage at home alone. Have you? I think your anger is a little misplaced. I was not saying that we are not capable of doing things alone. We are. I do PD alone. But I was concerned that gothicclovemonkey would get her hopes up by everyone saying she could do home hemo only to have them dashed by some doc who would say no you live alone so go pound sand.

[Meinuk]

But I have not heard of any dialysis centers in the US that will allow you to do NxStage at home alone. Have you? I think your anger is a little misplaced.

Sorry, Jeannea, I automatically assume that people read older posts. I do know of quite a few facilites that allow peole to do Home Hemo alone (12 off the top of my head).  I trained alone, did all of my treatments alone, and after my clinic was closed for unhygenic practice, I had to fight for the right to do my treatments alone.  It was all documented here on IHD.

My issue/anger is that you cited a federal regulation that does not exist.  (Actually, in rereading older posts, I see where you may have gotten it from): 

http://ihatedialysis.com/forum/index.php?topic=9705.msg231143#msg231143

It is NxStage that included, without a rational reason, the trained partner requirement in their 510K application to the FDA during their initial approval process.

So, let me rephrase my rant:  It was NxStage that requested a trained partner - NOT the FDA.  A physician has full authority of prescribe NxStage to a solo dialyizer.  (although a few State Departments of Health have regulations that can be challenged)

Many providers do just what you did, spewed off what they think is best for the patient, sometimes taking things out of context, sometimes making things up, and the person hearing it does not even bother to check to see if they are telling the truth.  I can't abide by that.  From providers or patients.

My anger is not misplaced, it is honest, topical and being focused/harnessed into trying to make the person on dialysis a part of their healthcare team. 

As you can see from the guidace that I cited in my last post, it is not the government that is a barrier to self care.  Look at Medicare, it incentivises self care, home hemo and PD by offering benefits rom day one of training.  (no waiting period like the 3 month incenter no-coverage).

The industry is making us full time "patients" rather than people who need renal replacement therapy.  We are not being treated as partners in our care, and that has to stop NOW.  If GLM is exploring home modalities, she should be encouraged and supported in the process (battle or no battle).  I speak first hand when I say it is worth the fight.

Here are some threads about NxStage without a Partner:

http://ihatedialysis.com/forum/index.php?topic=9705.msg225649#msg225649

http://ihatedialysis.com/forum/index.php?topic=19406.msg330325#msg330325


Check any of the links in my signature line if you care to read about my experience training and doing home hemodialysis alone.

Best,

Anna

[KarenInWA]

I just want to add some more of my 2 cents here.

I was on in-center HD for 7 months. During that time, the staff at my  center would periodically ask if I wanted to train for NxStage at some point. I told them I would, but I live alone. They said they have ways around that, such as, if the patient displays competency and things of that nature. It CAN and IS done, as proven by Meinuk and Bill Peckham. My center doesn't do that all the time, but they encourage it for those patients that can handle it and want to do it. In the end, I opted not to because I ended up having a living donor transplant. But, if that did not work out, I was going to seriously look into it! Most centers will provide the home patient with a 24-hr nurse line. Yes I know that is not as  good as having someone in the home with you, but it certainly is better than nothing!

To answer gothiclovemonkey's question about duration of NxStage - it is either nocturnal for at least 4,  but preferably more, nights a week. There is also short daily, which is typically 2-2.5 hrs a day for 5-6 days a week. As for the BabyK, which DD is on, from what I understand, that may require some modifications to the home. NxStage does not, as you can hook it up to a sink using some kind of  tube. Anyone who does this or has done it, please correct me if I'm wrong!!!

KarenInWA

[gothiclovemonkey]

Thank you all for ur answers, i find out today, it doesnt even matter, because my clinic doesnt have that as an option.