Considering switching to PD

[mysticnight]

Hey all,
I have been on hemo for 6 months, and have a reallly bad reaction to it. I am considering switching to PD.
Any input is appreciated.

I am REALLY sugar sensitive - brain fog, bloating, anger, hyper when I eat some types of sugar, even in small amounts. The staff assure me that sugar in the fluid goes in the peritoneal cavity and not anywhere near the bowel, so there will be no problems. Doesn't make sense to me. Also, does anyone with IBS, Crohns, SIBO or other bowel disorder do PD - and does it cause further problems?  Would my normal bloating to the point of looking pregnant affect the fluid or interfere in the space available for PD?

With hemo there are a few days off a week. Is it hard to do it everyday instead, mentally, with never being able to take your mind off the next one.

thanks

[obsidianom]

Hey all,
I have been on hemo for 6 months, and have a reallly bad reaction to it. I am considering switching to PD.
Any input is appreciated.

I am REALLY sugar sensitive - brain fog, bloating, anger, hyper when I eat some types of sugar, even in small amounts. The staff assure me that sugar in the fluid goes in the peritoneal cavity and not anywhere near the bowel, so there will be no problems. Doesn't make sense to me. Also, does anyone with IBS, Crohns, SIBO or other bowel disorder do PD - and does it cause further problems?  Would my normal bloating to the point of looking pregnant affect the fluid or interfere in the space available for PD?

With hemo there are a few days off a week. Is it hard to do it everyday instead, mentally, with never being able to take your mind off the next one.

thanks

What side effects are you having on hemo?  It is possible it could be related to doing it only 3 times per week in center.? Many patients feel FAR better on home hemo 5 days per week.

[Simon Dog]

I've done PD, in center Hemo (catheter), in center hemo (fistula), home/baby k and home/NxStage in that order.

Of all the modalities, I liked PD the best, despite the daily attention it required.

Many patients feel FAR better on home hemo 5 days per week.

The 3 day/week modality is a cost/benefit tradeoff decision made by the center for medicare and medicaid services (which sets standards that bleed through to non-medicare patients); not a decision driven solely on what is best for the patient.  If you are going to have traditional dialysis, rather than short daily, a better sequencing is every other day - but that is not offered in-center, as closing clinics on Sundays is more important that extending patient lifespan.   If you are going to stay on hemo, the easiest way to get decent frequency is to do it at home.

[mysticnight]

What side effects are you having on hemo?  It is possible it could be related to doing it only 3 times per week in center.? Many patients feel FAR better on home hemo 5 days per week.

It took 4 months to figure out I am allergic/sensitive to heparin and sodium citrate. We found a way to deal with that.
What I experience now is mouth and nose dry out and bleed, increasing the heart rate, blood pressure goes over 250 systolic, pounding heart, constricting blood vessels all over, hands and feet cold and numb, tight muscles, headache, trouble breathing, adrenaline surge (not anxiety attack), body shaking/convulsing/jerking, fading out of consciousness until I pass out/sleep until I am woken when its over. 

This is the medical debate here lol - I have been diagnosed with Ehler-Danlos connective tissue disorder, autonomic dysfunction/orthostatic intolerance - making me VERY sensitive to blood volume and positional changes. It is suspected by my other docs that the extra loss of blood during hemo causes the problem. Waiting for specialists appointment to confirm that.  The problem is the nephro does not believe in those diagnoses and they have no relevance to dialysis. So, I am in the middle, trying to make the best of this situation.

PD is a way to avoid reducing blood volume further and may solve these problems. Or it may not, and I have the realities of both types to decide between.

Right now, I was susposed to have home hemo, but blood pressure issues make that too risky.

[cassandra]

My IBS and bowel problems were caused by a severe bout of peritonitis while on PD. That same infection caused encephalitis as I'd a drain from my head to the bottom piece of my heart (forgot name) since a young age. I didn't know the risk of a poss infection of that shunt/drain. The 5 years PD were my best D years, as I could still work than though.

If the bloodvolume is  1 of the issues with HD why not try HDF ?

Good luck, Cas

[Whamo]

I'm glad there is the PD option, even though I do it too much, 10 hours a day, plus another daily drain/fill.  Veins have a tendency to wear out from fistula use.  So eventually you could wind up on PD anyway.  Daily dialysis is definitely better for you than three times a week. 

[Simon Dog]

I'm glad there is the PD option, even though I do it too much, 10 hours a day, plus another daily drain/fill.  Veins have a tendency to wear out from fistula use.  So eventually you could wind up on PD anyway.  Daily dialysis is definitely better for you than three times a week.

Alternatively, the peritoneum tends to wear our from PD, so PD patients may end up on HD.    It's kind of hard to predict where the D journey will take you.

[mysticnight]

If the bloodvolume is  1 of the issues with HD why not try HDF ?

Cas,  what is HDF? and how would that affect blood volume?

[cassandra]

HDF is Hemo Dia Filtration. The machine has 2 pumps, and tend to be used for people with heart problems, or BP problems. I couldn't find any info in layman's terms on Google info. I just know I got to use it when I started having too many hypo's, and it's something to do with keeping the volume equal.

I did find out that it's more used in Europe.

Good luck, and sorry I can't be of more help, Cas

[Simon Dog]

HDF is a tehnique where larger amounts of fluid are filtered out of the blood, and a replacement fluid is pumped into the blood at the same time, keeping the net flow out of the blood at a level comparable with conventional HD.   It is used in Europe, but is rare in the US - I think DaVita has a HDF in-center trial going on.   I believe the NxStage machine was originally designed as a HDF machine, but was changed to HD before release, due to the difficulty of getting replacement fluid.

As a practical matter, your chances of getting HDF in the US are only slightly better than spontaneously growing a new kidney.

Two pumps does not necessarily mean HDF - two pumps are also commonly used in single needle dialsyis systems. 

HDF is Hemo Dia Filtration. The machine has 2 pumps, and tend to be used for people with heart problems, or BP problems. I couldn't find any info in layman's terms on Google info. I just know I got to use it when I started having too many hypo's, and it's something to do with keeping the volume equal.

I did find out that it's more used in Europe.

Good luck, and sorry I can't be of more help, Cas

[cassandra]

Why is HDF so rare in the US Simon Dog?

[Simon Dog]

Why is HDF so rare in the US Simon Dog?

FDA approval process, most likely.

[mysticnight]

HDF sound absolutely amazing, and perfect for my problems. I am in Canada, it exists in Montreal, but I don't know if it is elsewhere, yet.

I just heard of a nephro who is also a cardiologist - he might be able to understand my troubles better. Now just to get a referral that doesn't take 8 months....

[obsidianom]

Why is HDF so rare in the US Simon Dog?

FDA approval process, most likely.

The FDA has not approved the replacement fluid due to purity issues as it is injected directly into the blood.   Can you imagine after what we ahve seen with Nxstage and aluminum what could occur if it were directly injected?? Purity is key here.

[cassandra]

If the Europeans, and the Canadians found a solution for that, its more likely to do with costs.

[cassandra]

HDF sound absolutely amazing, and perfect for my problems. I am in Canada, it exists in Montreal, but I don't know if it is elsewhere, yet.

I just heard of a nephro who is also a cardiologist - he might be able to understand my troubles better. Now just to get a referral that doesn't take 8 months....

Good luck mysticnight

 Love, Cas

[Simon Dog]

If the Europeans, and the Canadians found a solution for that, its more likely to do with costs.

Not necessarily - the FDA can move at a snail's pace when it comes to approving drugs and treatments.

[cassandra]

I hope they can speed things up a bit soon. Sounds like people might benefit.

[Charlie B53]

................... I am considering switching to PD.
................................
I am REALLY sugar sensitive - brain fog, bloating, anger, hyper when I eat some types of sugar, even in small amounts. The staff assure me that sugar in the fluid goes in the peritoneal cavity and not anywhere near the bowel, so there will be no problems.........................................

You need to research this a LOT more.   I've gone full diabetic about 6 months after starting PD.   The solutions used DO RAISE my blood sugars.  I have to test and adjust my insulin to counter-act those sugars.

If you have some sort of sugar allergy this may not be a good plan.

I have only been on PD, I have a serious aversion to needles, especially large ones.  If I absolutely had to go on hemo I would, but I far rather stay on PD as long as possible.

IIRC the entire intestine, large and small, including the descending bowel, is constantly submerged in the PD fluid within the peritoneal cavity..  The sugar will infuse everything, especially the blood system.  If sugar causes you discomfort, systematic distress, I suspect you will have constant problems.

I use Icodextrine for my all day long dwell.  This type of sugar does not have a negetive effect on my blood sugar, is not absorbed and stored/used as dextrose is.  But I don't think you can use Ico exclusively.  Your Neph can explain it far better than I can.

Do you see an endocrinologist?  Perhaps they can better advise you and test your sugar sensitivity and go from there.

[mysticnight]

thanks Charlie B53 !

That's the real info I am looking for. sorry it caused you diabetes. Too many serious health issues are caused by the medical system.

I was told the solutions do affect blood sugar slightly, and many diabetics safely use PD with no problems, bla bla bla. They make it sound so simple and seamless, but its not. If you believe in 'leaky gut,' sugar has to affect the entire body.  I had a near fatal allergic reaction to the preservatives in insulin, so I can't afford to go in that direction.

I don't have an endo and my nephrologist is useless. He doesn't believe in sensitivity to sugars and think I am making it all up. I am told it is impossible to test for sugar allergies, which I know is nonsense. And that is just the simplest bit of idiocy this nephro and his 'team' have told me.

I asked for a few referrals, but its all time and politics.

[Charlie B53]

I'm sorry to say that it may be time for you to start 'shopping', for a new Neph.  If the current Dr isn't willing to at least spend a little time researching your theory or order any tests to either confirm or disprove your sugar sensitivity.

Google 'sugar sensitivity' and start reading.

As I understand it, there are 3 basic sugar, beet, cane, and corn.  Your sensitivity may not extend to all three.  Testing is needed.

I do not know which type is used in the PD solutions, but a phone call to Baxter may be productive.

There may be hope left.  Ask more questions.  Dig for answers.

My diabetis was a long time coming, I can't lay blame solely on PD.  Weight gaan after a permanent back injury, slighty over-weight long before that, serious lack of exercise since injuries,  all contributed.  I don't doubt that a number of dialysis patients do develope diabetis, but I'd be willing to bet that a large number of those are seriously over-weight AND inactive.

You are tasked with determining your own future. At least as far as diabetis is concerned.  Learn to eat responsibly, get on your feet and move.  You do not have to exercise extensively, don't have to hop around and sweat a lot, a comfortable walk, whatever feels right for you, but you have to learn to DO IT, daily.  Combined with a slight attitude shift that food is necessary to live, not that we live to eat whatever and however much we please, only what we need.  I like water.  It's good, natural, healthy.  I've found most times when I thought I was hungry, I was only thirsty for a SMALL glass 4 - 6 ounces, of ice water.  I've lost over 40 pounds in the last year.  Not in a hurry, just slowly getting healthier.  Give it time, you can't make big permanent changes in a short time.  Give it at least a year before deciding if your improvements are effective.