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Author Topic: Anyone else been done this way?  (Read 3656 times)
apetty
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there's no place like home

« on: April 02, 2016, 12:09:44 AM »


I started dialysis in August 2015 and stopped going December 16, 2015.  The reason I quit going was that I felt it was killing me and I couldn't get the nephrologist, Dr. Biggs, whom I had never met, to give me a anti-hypertensive that I needed or see me in the clinic or her office.  I had been in the hospital for 2 weeks in November and while I was there the nephrologist before her, also the director in my facility that I normally do dialysis in, fired me while I dialyzing in the hospital.  (its a long story, but basically I couldn't get him to hammer down a plan to get AVF after they had pulled my PD catheter.  I had come down with peritonitis the day before I was to start PD training).  So I stopped going to dialysis, but went back to Dr. Gold, whom I had an about with in June 2015, and had an appointment made out for 6 months.  So I see Dr. Gold, and I am honest about not going to dialysis.  I show up to two appointments and I had gotten my AVF done in January and thankfully my cvc out in Feb.  We discussed getting back on dialysis even though I don't feel bad. I told him the only way I would go I could go incenter again was if I was on a wait list or for training. 

He told me that we could arrange that.  I then go to Davita (I had started out dialyzing here, but I changed to Fresineus, mainly because I could).  I fill out my paperwork and the receptionist asked if I had any questions.  I tell her that I was promised to be put on the waiting list for home hemo and the discussion I had with Dr. Gold.  She gets the administrator to come talk to me.  She disappears after I ask my question, and then says the Dr. Biggs (the MD at this facility), says I have to be "compliant" for three months before I can do home hemo.

I am so frustrated and incensed, I can barely speak.  There is something that makes dialysis the way they do it incenter intolerable to me.  Its not just the depressing atmosphere, the irritating hum of the lights, or the insanity of the beeping machines, its also the IDH I have almost immediately after they put me on and several times throughout, the worst being at 2 hours in, I almost always pass out and then they have to refill to get my bp up enough to let me leave (my bp is usually high or very very high when I come in). I leave with a migraine, my head feels like its got an angry beehive in it, my bones feel like they are full of shards of glass, I am literally useless from 12-20 hours.  There is no way I can do this for three months.  For one thing I have a child to take care of.

I have tried to make an appointment with this Dr. Biggs (whom I have yet to lay eyes on) to discuss her requirements and to maybe let her know the problem I am having with dialysis so maybe we could work on fixing it at least to make it tolerable.  I feel that if I ignored my body and tried to do this for three months I will surely die.  Since December I haven't been the hospital once.  I am not retaining fluid, and for the first time since I started dialysis last August I am not anemic.

I have congestive heart failure, and left ventricular hypertrophy, I am only 4'10"  and have IDH almost every treatment, I can feel my cardiovascular system struggle when they drop my blood pressure real low.  In November, the treatment that the doctor fired me, I was way below my dry weight when I showed up yet he insisted that they remove 4kg from me (I only weighed 60kg at the time, and was 53kg when I stopped going in December).  My bp went from 240/180 to 60/40!  I seriously had three hindu angels in different colored saris come for me. Since then I am kinda terrified every time I even think about going to dialysis I get nervous.   

Anyways, is this normal, what should I do? I can't go on doing dialysis like this, does it always make you feel this terrible?  Oh, yeah, I still have like 10% of my kidney function left.
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Amanda Petty
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« Reply #1 on: April 02, 2016, 08:19:56 AM »

Find another center, second 4 kilos would kill me and I am three times your size.  What dialysis centers forget is we are patients and every one is different.
They should not take you below your prescribed dry weight.  I still visit the facilities to eliminate what I drink, fluid removal is not medically needed in my case. I only allow them to take off 1 kilo and I replace that during treatment with a bottle of water.  In the US and deviation from your dialysis prescription provided by your doctor can be stopped by your refusal.  If they think you are being difficult mention calling CMS about the issue. If they give you a tough time contact CMS (Centers for Medicare and medicaid Services) and file a formal complaint.  CMS has a manual on what a center can and can not do, get a copy.  Finally find a doctor that cares about you, anyone who allows a tiny person to have 4 kilos removed below dry weight is a incompetent moron.  In my center if you are that large of percentage over dry weight they would have you come in for extra sessions.  One guy I know after starting dialysis went to a picnic and indulged in a lot of watermelon and came in 10 kilos over.  He a mwf patient became a mtwtfs patient for the next week.  I think you are right you are being abused, find a better Doctor ask a nurse not from a center who the best nephrologist is.  Plus it sounds like you may have started dialysis too soon.  If you don't feel sick not going
You may not need to go. I went past when my nephrologist wanted me to start by 2 years.  If I was not having symptoms I wasn't going to start, got sick in work one day and went the next week.
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kickingandscreaming
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« Reply #2 on: April 02, 2016, 09:05:29 AM »

I've only been in this dialysis game since the end of November 2015, so I'm not a pro.  But what you describe sounds really off the wall.  I would run, not walk, to another center.  And I would get a nephrologist that I actually could talk to.  I am on PD now, but I had to start off in center HD because my PD catheter kept getting clogged with fibrin so I couldn't complete my PD training.  I did HD for a month and a half while sorting out my catheter, and it was one of the worse periods of my life.  And my center is a very good one.  Yours sounds totally irresponsible and incompetent. I hope you can find a better work around.  I didn't start dialysis until I was at 6%.  I remember it was nearly 4 years before that I was told that I was at 10%.  And I never felt bad.  Finally a case of pneumonia sent me to the hospital and plunge me into the world of Big D.

How did you get peritonitis before you even started doing PD? 
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
apetty
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« Reply #3 on: April 02, 2016, 12:29:52 PM »

yeah, they started me on dialysis after I went into hypervolemic shock in the hospital in August 2015, I was put in a medically induced coma for 3weeks.  The problem is that have been to both Fresineius and Davita here in Oklahoma and both Nephrology groups.  Dr. Ahmed was the facility director at Fresineius, the one who fired me and tried to kill me all in the same day.  My nephrologist then became Dr. Biggs, not because i wanted or chose her because some one had to write the rx.  I wasn't a stable patient when i got out of the hospital and I didn't see her in over a month, and still to this day have never laid eyes on this "c u next tuesday".  She happens to be the director in the Davita Facility (it used to be Dr. Udupa, who took care of me while I was in the coma).  I love Dr. Gold, and he was all for me going to home hemo, he even mentioned trying me on PD again, but since the first catheter didn't take (that is a horror story in itself, lets just say that I was supposed to get a PD fill with antibiotics right after they had done exploratory surgery to see why the catheter was causing me pain, and forgot the antibiotic and did a 2L fill in my little body, and made me dwell for four hours in excructiating pain, after that after I demanded that they straight cath me they drained 800mls of urine out of my bladder).  Needless to say, they did surgery the next day and took my PD catheter out and wouldn't even discuss getting another access.  That was at Fresinius.  I was supposed to go back today to Davita, but I called and told them that I was sick with my period.  I literally almost throw up when I go.  And I feel awful afterward, like every nurtient I ve ever had in my life has been sucked right out of me.   If I do need dialysis i think I just need it like maybe one every two weeks.  but try telling them that. 

Sorry, I got off on a roll and I am hard to stop sometimes.

Thanks guys so much it makes me feel better that at least I know I am not being a wuss or anything.   :thx; :thx; :thx; :grouphug; :grouphug; :grouphug;
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Amanda Petty
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« Reply #4 on: April 02, 2016, 12:34:09 PM »

A little more, if you need to do Hemo for a while there are things you can do to make it more tolerable. Bring a music player and a headset. Play the music loud enough you can't hear the noise from the center.  I like the early shift, I go on about six and manage to sleep for about 2 hours. I have a dialysis playlist of music to sleep by.  Again stand by your dry weight, if you are below your dry weight demand they take of less then a kilo.  Bring water drink during the session.
Even though I sleep for half the session I bring my IPad it has movies, books, Internet and games to keep me amused.  Finally keep your eyes on the prize, dialysis should not be a reason for living but just a way to keep on living, at your size you are probably a 3 hour patient, that's about 12 hours a week at Hemo
That should leave you 156 hours a week to have a life,  to sum up. Find a better Doctor, And a better center. Find out if you really need to have started dialysis, Nephroligists seem to decide by your lab numbers not how you feel, if you feel good without dialysis wait, when you feel sick go. Use the time to find a good doctor. And remember it's your body and they have to treat you the way you want to be treated,
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Simon Dog
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« Reply #5 on: April 02, 2016, 12:44:42 PM »

A key component of home hemo is that the MD and RN need to be able to trust you to follow the program and instructions exactly.  That being said, I prefer to work with a medical team that treats patients with respect and assumes a patient will he compliant until proven otherwise, rather than the reverse which seems to be your doc's position.

My RN has told me she has experience with patients who were chronically late to in-center; missed treatments; etc. .... and then became great home patients who never missed or shorted a treatment.

I remember the initial care planning meeting when I was an in-center hemo patient.   The home care RN showed up because "we know you are headed towards home treatment once you get your fistula installed."  (I chose not to do catheter care at home).  Knowing I was on the road to home hemo made those in-center sessions much more tolerable.
« Last Edit: April 02, 2016, 01:12:36 PM by Simon Dog » Logged
Hootie
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« Reply #6 on: April 02, 2016, 01:21:55 PM »

I feel for you with all the obstacles and misfortune that you have experienced. This whole dialysis thing is not an easy process. It grates on us physically, emotionally and does affect each of us in unique ways. I wish you the best for the future. A couple thoughts...

What I have found that works for my wife (patient) and me the care giver is bringing a candid and caring attitude to the table every day regardless of the obstacle thrown at us. We have had good fortune of dealing with a very good DaVita team and a good conversationalist nephrologist.

But there are days where stuff does not work like the fistula, the machine doing crazy things, me messing up, or grumpy patient, or we collectively have a brain freeze...However we try to take it in stride and figure out a solution. The trick is a calm mindset to get through it all.

However, if something or somebody is not working we call it out in a positive but firm way. During our hospital stays with broken leg and blood sugar spikes, there were time where nurses and doctors did get called out. My way of doing it is asking questions...When hemoglobin was low...I asked "Are you sure we want to do a blood transfusion with a transplant on horizon??" He said "not really unless we have too". We conferred with our nephrologist and they decided not to and if they did have to do it only with radiated blood. By asking question...he stopped to think and confer with others...That approach might work for you or others.

As said above, we knew from our extensive research that we were going to to home hero. We were not going to be allowed to do home hemo until we spent time incenter per Nephrologist and Davita. We were okay with that since we knew the end game.  After 60 days training started and 30 days later we started doing treatment at home and would not do it any other way.....We knew then that the home hero dialysis end game.

The big end game is the transplant and hopefully that after 1.5 years of dialysis we are almost there...just waiting for someone to exchange my kidney for one for my wife.

Good luck, and hopefully better days are ahead for you.

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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
Charlie B53
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« Reply #7 on: April 03, 2016, 06:16:01 AM »


You are in a tough place.  Your current Clinic is attempting to force you to 'fit' their idea of what a dialysis patient should be.  And many people simply cannot be corralled and treated like UN-mindful animals.

You might benefit from reading another thread that addresses this very issue of treatment by Clinics, and what can be done.   I just spent a few minutes and wasn't successful, yet.  But I will keep looking and when I do find it I will post a link here for you.

IIRC it may be Michael Murphy that had replied in the thread I am looking for, he has a lot of great information many others need and regularly teaches us a lot.

ALL Patients have rights, to be treated like a person, not a lump of flesh.  Promoting change within a Clinic is very difficult and there is always a fear of retribution.

What other Clinics are in your area?  Have you contacted them and asked if or what their requirements are for training for home hemo?

I go to a DCI, inc. Clinic.  Never been anywhere else.  I am on the PD side, but so far all the staff I have met are very caring and willing to spend time listening and explaining anything you ask.   The Patients I see coming and going from the Hemo side do not appear to have any type of 'attitude' as if their treatment had been anything other than good I am sure none would have a pleasant attitude.

Stay strong, you are the best judge of how you feel.

Take Care,

Charlie B53
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« Reply #8 on: April 18, 2016, 02:29:50 PM »

I'm also at a DCI clinic and I've been in both the Hemo and PD ends of it. Wasn't crazy about hemo, but the staff and doctors were fantastic. I'm at a DCI Home Clinic now (at the DCI HQ no less) and they are also just as wonderful (for the most part... there is that one nurse but, what can you do?).

I hope you're still hanging in there are able to find a clinic that works for you!
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
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« Reply #9 on: April 18, 2016, 04:36:28 PM »

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I asked "Are you sure we want to do a blood transfusion with a transplant on horizon??
I had a hip transplant at one of the big Bosotn hospital.  On more than one occasion, I heard "by the way, we've ordered a transfusion that will be given with your dialysis".   I simply said "refused" each time at that was it.

Once a neph resident or fellow tried to order one, and the chief of hematology was visiting me at the time.   He spent a lot of time telling her why it was a bad idea.
« Last Edit: April 19, 2016, 04:18:51 PM by Simon Dog » Logged
kickingandscreaming
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« Reply #10 on: April 18, 2016, 07:30:02 PM »

Is one blood transfusion enough to screw up a tx prospect?
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #11 on: April 18, 2016, 08:38:19 PM »

i've had three and i'm all clear for transplant in that area.

I think they discourage it overall, but there is a little bit of a leeway. I'm sure someone more experienced can explain it better, but isn't it something with the antibodies in your blood. The more transfusions you have, the harder it is to match antibodies.
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
kickingandscreaming
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« Reply #12 on: April 19, 2016, 08:44:26 AM »

Yes. It IS about the antibodies.  That's why it concerns me that even one transfusion might leave you will "someone" else's antibodies and muddies the waters, so to speak.  I doubt that it would prevent being listed if everything else checks out.  It's the matching probabilities that I would expect to be decreased.  But I'm just guessing.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #13 on: April 19, 2016, 04:17:35 PM »

Ask your transplant team what your PRA (Panel reactive antibody) is.  It ranges 0-100 (pr maybe 0-99).   The higher it is, the greater the chance you will be sensitized to antibodies in a donor kidney.    A transfusion can raise your PRA, hence the concern.  I've met real MDs who are not familiar with the alloimmunization issue (although this is not as common as MDs who are not aware home hemo exists).  There is a desensititation process, but this is usually used only in people who are so highly sensitzed that the chances of  finding a kidney they can accept without that process is close to nil, or who have a live donor to whom they are sensitized.
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Is one blood transfusion enough to screw up a tx prospect?
It is not enough to prevent you from getting a transplant, but it could be enough to prevent you from being a match for one particular kidney that would otherwise be a good fit for you.
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kickingandscreaming
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« Reply #14 on: April 19, 2016, 07:56:36 PM »

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It is not enough to prevent you from getting a transplant, but it could be enough to prevent you from being a match for one particular kidney that would otherwise be a good fit for you.

Bummer!
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
apetty
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« Reply #15 on: April 22, 2016, 11:14:29 PM »

UPDATE***   Went to my nephrologit last week and he wasn't too happy with the situation but I guess he's just letting me coast right now without dialysis.  Which is okay with me.  I am tired but I am not nearly as fatigued as when I am doing dialysis.  He says my numbers look terrible, but I don't really feel that bad.  Got the email address from this chick on another dialysis forum for Davita's VP of home therapies, she said that he has shown a willingness to help people overcome administrative barriers to HHD.  The response I got back was basically saying that Davita has to cover its ass and could care less about how I feel about.  Have also been on the phone with network and she tried to get them to have a meeting with everybody and was stonewalled just as I have been.  I talked to Fresineius because last November I was a day away from my scheduled home visit when I was told that I had to have an AVF before I could start... this was after losing my PD catheter one day before I was to start training for that and I knew then I was done with in-center for good.  I even had my first shipment arrive at my house while I was in the hospital.  Anyways the treatment options specialist at Fresineius remembered me and told me that a lot of patients simply cannot be adherent to in-center usually do fantastic at home.  So that was encouraging.  Problem with that is that my Nephrologist is Davita and the only doctor that sees FMC patients from that particular group is.... you guessed it... the Medical Director at Davita who is giving me all the problems. I thought for sure something would have to break this week but...

The chick from the network told me if the facility admin didn't call her back with a date and time for a meeting by the end of next week she would call them... she has at least returned my calls regularly and kept me abreast of what has been going on on her end, which is more than Davita or Dr. Biggs has done.   

I'm wondering if I do the coursework to become a dialysis technician if that would help or just be a waste of my time...

I have also made my mind up that if I am forced in-center that I am going to insist on cannulating myself just as a start.   

Thanks to everyone for your comments and your encouragements.  You guys rock!
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Amanda Petty
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« Reply #16 on: April 23, 2016, 05:42:06 AM »


Progress, finally.   I hope it comes together for you soon.

I am on PD but I read most everything.   Somewhere here at IHD I have seen postings mentioning a number of people doing their own needling while in-clinic.

Training/education is never a bad thing.   If all else fails you will understand much more about Dialysis then most any other person receiving treatment.   And possibly it could lead to employment.   Who knows what the future will bring.

IF you do end up going to a different clinic and the new clinic uses different equip and supplies all that you have had delivered may not be usable.    I need to print me a shirt,   'Qwap happens'

Take Care,

Charlie B53
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« Reply #17 on: May 29, 2016, 06:05:49 PM »

I didn't notice how old this OP was, but I'm wondering at 10%, why are you even on dialysis?  The most recent studies suggest that starting dialysis before the GFR is at 7 or below can be counter-productive and actually tends to reduce life-expectancy for CKD patients. 

Is there a different Nephrology group you could go to in your area for a second opinion?  I think that would be my next step.  I lived without dialysis with no major complications at 10% for about two years.  I didn't start PD until I was at 6% and still didn't really feel bad.  If you are not retaining fluid, any kind of hemo will be very tough on your body.  I do not retain fluid at all, oddly enough.  I have no fluid restrictions and my docs even encourage me to drink plenty of water to keep my kidneys working. 

Perhaps there is a way to manage at your current level of functioning and keep PD as an option in the future. It sounds like your PD surgery was botched, honestly.  I've never heard of anyone having such problems after the catheter placement surgery. 

While compliance is a big deal for any kind of home dialysis program, it seems like your doctors are not listening to your concerns at all.  Your only option may be to find another practice and share your story with them so you can get a treatment plan that works for you.
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« Reply #18 on: May 29, 2016, 06:51:49 PM »

One school of thought is to start early if going with PD to extend the time you have working residual function; delay the start of hemo until you really need it since pretty much all residual will be gone in 6 months.  Greater residual => enhanced life expectancy.

Quote
F you do end up going to a different clinic and the new clinic uses different equip and supplies all that you have had delivered may not be usable.    I need to print me a shirt,   'Qwap happens'
I always take my own needles and poke myself when visiting other clinics.  I'm NxStage at home, but use clinics when I am on the road.  I've run into one clinic that did not even carry blunts (the entire staff took a break to watch me canulate), and other that have brands I don't like as well (each brand has a slightly different shaped scab picker).  The hemo line connection is standard, so your needles of any brand will work at pretty much any clinic.

There is a compatibility problem between the Fresenius and Baxter pd system.  If you are  a Fresenius patient, they will give you a little pouch with a disposable adapter and tell you to bring it with you if you check into a hospital.

When I was in-hospital after a hip transplant, the dialysis unit told me that using my own supplies was against hospital policy.   I smiled and proceeded to shove my own needles in and nobody stopped me, or even raised the issue on my subsequent trips to the dialysis unit.
« Last Edit: May 29, 2016, 06:55:33 PM by Simon Dog » Logged
apetty
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« Reply #19 on: May 30, 2016, 03:01:25 AM »

Okay... I talked with my nephro last visit about possibly trying PD again (my first time failed before I could even use my PD cath), his office got back to me, I meet with the PD department at the hospital (apparently Davita won't even take me for PD) this Wednesday...  fingers crossed, I know that PD is the best option for me because of my heart issues, but I am scared of peritonitis again, but not too scared... I'll let you guys know how it goes. 
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Amanda Petty
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« Reply #20 on: May 30, 2016, 06:39:54 AM »


Knock on wood and hope I don't jinx myself by talking about it.   But.....

Three years on PD just this past week and NO infection, yet.    I don't think it has been that hard to be CAREFUL.    But I do have to admit that I have a pretty good system.  Meaning my lifestyle, my near constant exposure to elements, being outdoors, having pets, having those anitbodies developed and active in my system helps immensely in fighting off many of the more common sources of infection.

It wouldn't surprise me to learn that many of those people that do have infections live a much more 'protected' life.

If so, I still could not recommend those person begin taking ?? risks, as the developement of my level of antibodies could be a resultl of many years, and not something that may easily be improved very quickly.

I can't say this is fact.  Merely a WAG.

Take Care,   Keep your hands clean.

Charlie B53
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« Reply #21 on: May 30, 2016, 08:48:48 AM »

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I know that PD is the best option for me because of my heart issues
If PD does not work, consider home HD with NxStage.  The more frequent protocol (typically 5 or 6 times a week) means less fluid shift, and smaller amounts off at each treatment, with less stress on the heart.
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« Reply #22 on: May 31, 2016, 05:25:43 AM »


It is pretty clear that PD 'may' be a viable treatment option for a unknown number of years, HOWEVER........ it is not a permanent treatment solution.    It will eventually fail to be 'adequate' as the peritoneal membrane will eventually thicken and reduce the transfer rate until hemo is the only viable treatment option available.

When it gets to that point I will then be forced to deal with my 'needle-phobia' in order to tolerate hemo.   Once I successfully do that then I will have to work toward needling myself so I may be able to take advantage of the nXstage.   Daily treatment has to be far easier with less 'shock' to the body than the current in-clinic treatment schedule.

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« Reply #23 on: May 31, 2016, 08:44:29 PM »

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Daily treatment has to be far easier with less 'shock' to the body than the current in-clinic treatment schedule.
I used to get regular cramps in-center.

I have only cramped once on NxStage, and that was my first treatment after a week on in-center (traveling).   I suspect that in-center either misbalanced by yin and yang or threw my chi out of whack   :waving;

I'm taking off .9L tonight, but sometimes go as high as 2.3L after an "off dialysis" day - in any case, nothing like I took off in-center.
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