heparin

[jeanne]

I am sitting tiredly at GFR 15 with a catheter in from last year's abortive mess with CAPD.  That's another story I mentioned in my introduction.
Anyway, I flush this thing once a week using guess what?  heparin in the dialysate.  A complex, very careful procedure.  If you don't flush it, it would clog up within a few weeks with fibrin.

I got a call yesterday from my mail-order pharmacy saying, "Don't use that (Baxter) heparin, we are sending you packaging so you can send it back to us (so you can't use it in a law suit?).  We are seeking alternative sources."

Am I the only ESRD person totally freaked out by this business?  Baxter was getting the "porcine intestines" used to make heparin from China -- you know, the people who put lead paint on toys.  Turns out that the Chinese factory was getting it from any one who walked in with some, basically -- small family farms.  It has killed 35 people that they admit to and made many others very sick.

I now don't want this catheter in and I don't want to do dialysis (I could do the cycler) even more than I already didn't.  My new neph has bullied and manipulated me into keeping it in. . . To complicate this, I just got on the nearest cadaveric transplant list (3-year wait).  Now I don't want a transplant either, and much more dependency on a lazy, stupid, greedy medical system.  (I do not speak of your wonderful doctor here, but of the system.)  I feel all this has been so incredibly careless -- I certainly could sue the doctors and nurses I had last year for malpractice and get a settlement, but I wasn't up to it.  Now this.  What else are these people going to do to me?  And I wonder, especially when I saw what I would have to put up with after transplant, do I want to pay that much to be alive?  For what?  Maybe I need to start a new Group, the Fourth Alternative.

The other thing is, I just don't understand why nobody on my dialysis list is breathing a word about this. 
Jeanne

[KICKSTART]

I really cant help you with your situation but i do pd and you say you dont use your catheter? Why then have you still got it ? You say you were bullied into keeping it ..what for? If you are unhappy having it left in and dont use it , i pressume you do hemo now? Then speak to someone about having it removed if thats what you really want , i wouldnt let anyone bully me into keeping it if i didnt use it and neither should you. Perhaps if you could explain to us why you had to keep it , someone may have some usefull answers for you.

[petey]

The Baxter heparin thing has scared me and Marvin to death!  Marvin's home hemo nurse came to our house (a hour from the clinic) to collect the "old" heparin bottles.  He brought more (made by APP).  We keep getting letters from Baxter -- yesterday, we got one that we had to sign off on and send back stating that we understood the problem with the heparin and would now not hold them (Baxter) responsible if we used it and something happened to Marvin.  I want to say, "Hey, how about all the heparin Marvin used BEFORE you ding dongs realized that something was wrong?"  That will scare the crap out of you!

[jbeany]

The other thing is, I just don't understand why nobody on my dialysis list is breathing a word about this. 
Jeanne

jeanne - we've discussed the recall on here in a number of threads, and have posted quite a bit about it.  Just type in "heparin recall" in the search box at the top of the page - the first 5 articles I got in the search were all about the mess with the lethal heparin.

Or are you wondering why no one is discussing the "Forth Alternative" treatment - which is doing nothing at all.  You're not alone in thinking about that here as well.  There have been a number of threads talking about quitting.  Try searching for "Is stopping dialysis suicide?" or "quitting dialysis".  We've got several ongoing debates on the subject - feel free to catch up and chime in. 

In spite of how the doctors tend to act, they CANNOT force you into any treatment you do not want.  You are in charge of your health care.  You CAN turn down a transplant.  You CAN stop dialysis.  These choices are yours to make.

You're not alone, jeanne.  Whatever you choose to do - someone on here has been there, done that, and understands.   

[jeanne]

. . .  you say you dont use your catheter? Why then have you still got it ? You say you were bullied into keeping it ..what for? If you are unhappy having it left in and dont use it , i pressume you do hemo now? Then speak to someone about having it removed if thats what you really want , i wouldnt let anyone bully me into keeping it if i didnt use it and neither should you. Perhaps if you could explain to us why you had to keep it , someone may have some usefull answers for you.

Hi, and thank you.  No, I am not on hemo.  I am at GFR 15 and have been for 3-4 years, creatinine 3.2 or so.  I stopped PD one year ago after six weeks when it gave me a hernia (undoubtedly too much volume) and the medical team let it burst instead of telling me to get it fixed.)  Once I had healed, I wanted the catheter out, but my new nephrologist changed his tune.  In fact, he wrote to my surgeon without copying me and told him he (the neph) would not approve surgery to remove it.  But he has not been able to tell me that I would in any way be healthier or feel better back on PD, or that it would not cause me to lose my remaining kidney function.  Now I realize the magnitude of the risk as never before.

How do I get bullied?  Well, I am a woman, a 65-year-old woman who was much abused as a child.  It comes naturally.  Nowhere have I been abused as an adult more than in the medical system.  I have worked on this issue for years, presently with a good therapist at last. 

If I get surgery to get the cath removed, do I need a nephrologist at all?  Can't I elect to simply not have one?  If/when my kidneys fail, I'll know it. 
Jeanne

[jeanne]

jeanne - we've discussed the recall on here in a number of threads, and have posted quite a bit about it.  Just type in "heparin recall" in the search box at the top of the page - the first 5 articles I got in the search were all about the mess with the lethal heparin.
. . . In spite of how the doctors tend to act, they CANNOT force you into any treatment you do not want.  You are in charge of your health care.  You CAN turn down a transplant.  You CAN stop dialysis.  These choices are yours to make.

You're not alone, jeanne.  Whatever you choose to do - someone on here has been there, done that, and understands.   

Thank you so much for the encouragement.  I still don't know my way around this forum, and your post is quite a help. 
Jeanne

[kellyt]

jeanne, I'm not on dialysis yet, but I feel for you.  I'm so sorry you're going through this.   


Oh....and Petey....I'm so glad to see you posting today!  I hope things are good with you.  Take care.   

[KICKSTART]

Hi, and thank you.  No, I am not on hemo.  I am at GFR 15 and have been for 3-4 years, creatinine 3.2 or so.  I stopped PD one year ago after six weeks when it gave me a hernia (undoubtedly too much volume) and the medical team let it burst instead of telling me to get it fixed.)  Once I had healed, I wanted the catheter out, but my new nephrologist changed his tune.  In fact, he wrote to my surgeon without copying me and told him he (the neph) would not approve surgery to remove it.  But he has not been able to tell me that I would in any way be healthier or feel better back on PD, or that it would not cause me to lose my remaining kidney function.  Now I realize the magnitude of the risk as never before.

How do I get bullied?  Well, I am a woman, a 65-year-old woman who was much abused as a child.  It comes naturally.  Nowhere have I been abused as an adult more than in the medical system.  I have worked on this issue for years, presently with a good therapist at last. 

If I get surgery to get the cath removed, do I need a nephrologist at all?  Can't I elect to simply not have one?  If/when my kidneys fail, I'll know it. 
Jeanne

Oh i am so sorry to hear your story and all you have gone through, i still find it a bit confusing that you had the pd catheter put in a while ago but only used it a short while (i have never heard of a hernia through to much fluid though ? ) and now you are not doing any kind of dialysis? Is this your choice? If you dont need dialysis yet , how come you ended up with the pd catheter in ? Sorry im just a bit confused?



EDITED:  Fixed Quote Error - Bajanne, Moderator

[jeanne]

Oh i am so sorry to hear your story and all you have gone through, i still find it a bit confusing that you had the pd catheter put in a while ago but only used it a short while (i have never heard of a hernia through to much fluid though ? ) and now you are not doing any kind of dialysis? Is this your choice? If you dont need dialysis yet , how come you ended up with the pd catheter in ? Sorry im just a bit confused?

I had an old-fashioned doctor who went by the numbers.  When your creatinine reached 3, you prepare for dialysis.  He nagged me for a year until I agreed, then handed me off to this awful clinic which mishandled me so badly.  When they repaired the hernia, it was an emergency and I had spent a day in great pain.  It never occurred to me to get the cath taken out then.  I thought I would go back on dialysis.  But as I healed, I thought, why?  All that risk, time, and trouble, when I feel okay as I am?

I left that clinic and found a new neph who assured me that it was my body and when I wanted my cath out, I could get it out, and if I wanted to start dialysis I could; it was up to me.  Then he radically changed his tune.  My surgeon does not want to remove this without the neph's approval.  The two of them have actually communicated behind my back, which I fortunately know because of an intelligent nurse in the surgeon's office.  I resent this very much, now that I am able to tell the story to some people who understand.
Thanks.   
Jeanne


EDITED:  Fixed Quote Error - okarol/moderator

[Sunny]

Wow, sounds like you're having a rough time with your doctors. I hope they will be more understanding to your needs in the future.
I know that the numbers don't always indicate when you should start dialysis, but rather how you are feeling physically. Everyone is
different depending on what medical issues we each have going on. It would be nice if there were a way to get a 2nd opinion from another
nephrologist. Hope things work out for you.

[KICKSTART]

I dont know what to say, only try and find a new doctor if possible and get a new opinion on what you can do about the situation , sorry not to be of more help , but if you have any other questions we will always try to help

[Ken Shelmerdine]

Jeanne in your first post you mentioned that you are 'Sitting here tiredlly with GFR 15%.' If you are feeling unwell then you probably need dialysis  irrespective of whether your catheter remains with you or not. I think you need to at least take steps to get a fistula established so you can dialyse as soon as possible. Once you are back on dialysis and hopefully feel better, then get things organised with your clinic to get your pd cath removed. Thats the best I can advise,  you've been treated appallingly but  you need to try and take some control and the first priority is that you need to start dialysis as soon as possible.
Best Wishes

[jeanne]

Hi Ken,
Thank you for your caring.

I have not been able to turn up any research that says I will feel better or be healthier going on dialysis now.

Last year, after my 6 weeks on dialysis, the doctor said to me, "You're really being overdialyzed.  You don't need to be on dialysis.  It's sort of prophylactic."  A few days later, before I had quite digested that, I had the hernia rupture.  After the rupture, those doctors (I had left the practice) wrote to me to say they thought I should get the catheter removed.

People have written in this forum that dialysis only takes a person to about 15%, where I am now.  Do you know any research otherwise?

I've been following dialysis lines for about two years now, and have learned of endless complications.  It is not a straightforward treatment, but actually very risky.  If I start CCPD, I will be connecting and disconnecting twice every day, giving me 7 times the risk of peritonitis that I have right now, and much more risk than no dialysis.  There is no evidence that I am harming myself at this level of functioning.  No swelling in ankles.  I passed an adenosine stress test last month with flying colors.  Pulmonary function good, no diabetes, cholesterol okay.  I don't mean to be argumentative, but to give you some facts.

My tiredness.  Oh, it is true.  I was really really down when I wrote, with another UTI; they are exhausting.  I get them unless I am on maintenance antibiotics, which we are starting again tomorrow.  But yes, I am physically limited. 

I really hit the wall with this heparin scare.  I believe that many more people were killed by it than the medical people have admitted.  Coverup is only human nature.  I am on Hold on the transplant list right now because of the UTI, and I intend to leave it that way.  I don't want a transplant either.  I don't believe in life at any cost. . . . I am talking with a very good counselor about this, and she has urged me not to burn any bridges.  I hear that, and I hear you.  Any further feedback you have would be welcome.
Thanks again.
Jeanne

[jbeany]

Every patient is different.  My doc said he has a patient at 10% function who still isn't on dialysis, and is still feeling fine.  Do not let them put you in some cookie cutter mold!  One size fits all does not work for patients - it only makes things easy for the docs.

The toxins that build up will make you tired - but make sure they are sufficiently treating your anemia as well.  I started anemia treatments a decade before I started dialysis.  You can be treated for potassium and phosphorus issues without being on dialysis - that may help the fatigue too.

Dialysis is risky - every treatment session comes with a risk - infection, crashing, exposure to flu and cold germs from fellow patients and even the techs.  The list is endless.  It is life support, and that will never be without risk.  You are the one who gets to decide if you want to take the risk. 

Around here, when the docs are helping us, we are all allowed to borrow kitkat's "Big Stick".  If you want a turn with it to get the docs to listen to you, I'm sure she'll lend it out!  I know it's hard, but Stand YOUR Ground!