Been MIA piglets1

hi i have not been here in awhile…had so much going on my 39 yr old brother only sibling passed away suddenly, i had cancer come back this is 3rd time so had to have removed… my pd catheter never worked since put in Feb and no dr would remove and the dialysis center i go to i have had issues with staff who dont change gloves after each patient etc etc…Anyway finally found a dr remove the old pd catheter and he had to do major surgery and i am cut from pelvis up my midsection…he says the first one was totally done wrong and he can’t believe the dr let me off the o/r table with it this bad… He said it was not even in the peritoneal (sp)…he said no wonder i got severe pain when they tried to fill it…they were filling my cavity with fluid…anyway the new pd works and i am in flushing stage and will be trained 1st week of Dec…here is new issue… i am allergic to heparin…i vomit and get chills right after receiving. .my dr states he in 20yrs never heard of it and if i dont have heparin my catheter will clog…he says heparin is not absorbed threw stomach… (yet i get sick only on days of flushing) he makes me feel like it is my fault and their is nothing that can be done. …today he said he will have to have conference with his colleagues and see but he doenst know if there is anything i may just have to have it ??? any ideas ///

Piglets, you’re back! I’m so, so, so sorry to hear about your brother. What a sad thing. It’s great that you finally found your way to a doctor who could fix your PD catheter and get you going with PD. Good for you for hanging in there; I know it was a long road.

As far as the heparin, there are mainly two types: beef or pork. Some people can be very allergic to one type and be fine with the other. So, finding out which they’ve been using and switching to the other type might be an option for you.

I’ve emailed my best PD experts to see if there is another option besides some form of heparin for flushing your catheter.

Who is the maker of the heparin that they have you use and what is the lot number? There was a recall of heparin earlier this year after several patients had problems and some even died. Here’s a story from CNN about the problem with the heparin that was made in China and contained a contaminant:

The Baxter recall of heparin started in January 2008 when a contaminant wants found in the product. Unfortunately, it wasn’t until May that the renal community learned about that recall. Dialysis facilities were informed to get rid of heparin that they had in stock, but some clinics may not have received the word or may not have acted on it.

Here’s the Food & Drug Administration archive for 2008. You can search it by doing a find on the page (Ctl + F using a PC) for “heparin.” As recently as 11/08 a company was preparing to put contaminated heparin into the marketplace. It’s possible that the heparin you’re using is contaminated. You or your doctor could probably check with the FDA to see if the bottle(s) you have are from any of the companies or lots that are contaminated.

The main number at the FDA is 1-888-INFO-FDA (1-888-463-6332). They could probably direct you to the right department/person.

Hi Piglets,

I did hear back from one of my PD experts, and here is what he said,

"It is extremely rare to be allergic to Heparin. The most common was hypersensitivity to Baxter multidose vials (as I am aware Baxter recalled this heparin). Chills and vomiting are rather rare allergic symptoms. Anyway. I am not aware of the situation, but if anticoagulant is really needed, my first trial would be to use heparin of different manufacturer. If this does not work I would use straight PD solution. If flushing is done with a small volume (like 10 cc) a normal saline without heparin may be used.

Dori thanks you yourself might have hit on it. .I remember being allergic the Pork Insulin when I was first diabetic as a kid…they had to switch me to beef…I mentioned this to clinic and they said they no longer make beef heparin it is just pork…
So now my pd is not draining AT ALL here I go again I was suppose to begin at home with the cycler and now NOPE not happening…I was having it flushed once a week at clinic and once at home and had no issues…Then on Wed I went in she went to flush , filled and drain and she didnt get full amount back and left it I began to feel sharp pains in my stomach on opposite side to catheter I explained this and was told need to get another 200 back…still nothing. .I went home and that day I was in so much pain I had to have husband come home from work and i had to take pain meds…next day was better went back in they filled nothing drained…Nurse prac said I was dehydrated and I need to up my dry weight…she recommended giving me more fluid…and to come back…gave me more fluid went back 4 hrs later and still nothing…again today nothing… Everytime I did have a drain it was cloudy, had fibroids and pinkish which they said was most likely left over from surgery…Now I am being told I will most likely need surgery again …I am done , burnt out with this whole thing and the medical drs

Arggh. I didn’t realize that beef heparin is no longer on the market. Isn’t it just great when there are fewer alternatives? Here’s an article about heparin from the FDA that has a lot of useful info, including about allergies:

I’m sure that you’ve seen, reading these boards, that sometimes the start to PD isn’t smooth. You’ve had other glitches yourself, so you’ve lived that. At least now your catheter is in the right place. It sounds as if your catheter might have a fibrin plug that is blocking it. Since heparin can’t be used to dissolve it, maybe the doctor could fish it out with a wire? Something to ask about anyway–it’s much less invasive than replacing the darn thing again. I’d also ask about other “clot-busting” drugs, like streptokinase or urokinase (sometimes these are used in combination with a wire). Here’s one report in the literature of this working:

I know you’re really, really, really frustrated, but please do try to hang in there for those little piglets of yours.

Hi its piglets again…so much has been going on I just have not been on computer…They finally got it working then I got infection…they tried to treat and the drug they used was administred wrong and I got red thraot )or something like that cant remember the name …I got very sick
So now I have the feriunius machine sitting in my bedroom and hopefully starting on Mon night… Another question… I thought i was going to be 6 days a week and they told me today no it is 7 days …Has anyone ever done just 6…?? I so think I need a break once and awhile…I have so much going on my head is going to exploda…and this is yet another disappointment…thanks as always

Hi Piglets, Glad you’re hanging in there, and thank you so much for posting and letting us know how you’re doing. I think you just might get our jumped-through-the-most-hoops-to-do-PD award, if we had one.

PD is done 7 days a week (or, with the cycler, 7 nights). Since it’s a continuous therapy, once you get going on it, it should make you feel better. Hopefully better enough that you grow to not mind the 7th night so much, at least I hope so.

I am just trying to find out WHY it has to be 7 day and not 6. I understand it is continuous…but I dont understand why hemo is ok for 3 days yet pd HAS to be 7…Yes more dialysis the better but 6 days is more then 3 so that is better…I dont FEEL sick I dont FEEL rundown…I still make urine.Idont gain weight yet they treat me like the guy who gain 4 - 6 kilos each weigh in …He and I are on same amount which just blows my mind and everytime I bring something up I am told…well this is the way it is …but I want to know WHY why cant it be by individual …
I am just curious but so frustrated trying to get answers …I dont trust any of the drs or nurse considering my past history so everytime someone is going to do something I want to know why and what are options yet they think I am just belly aching all the time…For me and my family it would be much easier right now to be on 6 days what are my risks with that ?? and why is it now up to me if I want to take that risk??