Piglets we had a virus to move in with us and stay for 3 weeks so I have not be checking the forum. I have been wondering how you are doing. If you are still checking in please bring me up todate on what is going on with you.
I do hope things are better.
I’m so glad you asked, DHolland, because I’ve been wondering the same thing. Piglets?
HI thanks for asking…
doing cra%^y…PD still NOT working…Dr is not very concerned to movet things along since this damn thing went in in Feb and only this week am I meeting with a surgeon…I still dont think the only answer is surgery through my stomach but I will at least talk to surgeon…My creatine is 6.9 now and your would think the dr would at least try and push things quicker but no and if I ask anything I am looked at like a problem patient…this is beyond frustrating…I was not told this is what it would be like I even asked to have switched to the other diaylysis until we figure this out and we told no not option then I asked just take this one out and re do and was told no he wont…
arghhhh can you tell I am NOT happy at all with PD!!
Piglet1 Hang in there I went through almost the same thing after two tries I finally got one to work.the first one was in my belly for 2 months that they couldn’t get it to work . then they put in the 2nd one and it has been working beautifully.so don’t give up.
cheers virtsma
Piglets that you for bring us up todate. I can’t imagine the confusion you are going through. I would have thought the problem would have been resolved by now. Try to hang in there until things are worked out.
Piglets, did your biopsy go okay? I’m really concerned that your creatinine is still rising–using the GFR calculator, I am guessing that your kidney function is down to just 7%. How you’re taking care of those 3 little ones (is your cast off yet?!) is nothing short of a miracle, IMHO.
I know you’ve said you like your nephrologist, but it’s been 7 weeks since you started posting, you still don’t have resolution, and it may be time to think about finding a new doctor. This is entirely up to you, and I admire your doctor’s commitment to making PD work for you. But I’d hate to see you get really sick because you waited too long to get your blood clean. Not that long ago, a woman who was on a dialysis-support email listserv that I monitor had uremic frost–a sort of powdery stuff on her skin from toxins that weren’t removed (she refused to start dialysis, and I don’t know what became of her).
Home HD is another option you could get started training for right away if the PD doesn’t work out (yes, folks have done it with little ones in the house–though they can’t pull on the lines!). Or, you could start in-center HD, get the PD catheter fixed up, and then get the PD going.
Dori
thanks for asking…No still didnt have biopsy drs keep sending me to other specialists. One says do biopsy another says just remove then we have to send CT scan to them to look at etc etc. It is one thing after another. My oncologist says it is metastic cancer from my previous cancer we are just looking for best scenerio to treat…As for cast .funny thing turns out to be either a bone infection or AVN either way dr says I have to have bone in foot removed so the cast is going to be there for awhile.
As for kids …LOL they are what keeps me going 
I have been losing alot of weight and dont know if it is kidneys , nerves , cancer or combination but I am nervous. In one month I lost about 10lbs and not trying. I have been very out of breath alot lately also to point I take a shower come out and have to lay down to catch my breath…even bathing the kids I have to sit down…
I spoke with surgeon today and he didnt seem too optimistic…he said catheter is where is should be so even if he goes in he probably can’t fix…I cant see why they just dont take out and do on other side !
It just doesnt make sense …I try and explain the story to the dr’s and they just cut me off… I really think it is something simple we are missing…In o/r it was able to fill but not drain, week later started to fill very very slow nurse squeeze bag I saw stars and hasnt done a thing since. No filling no draining…
They were able to push in wiht syringe but nothing came back out…Then last time alittle went in but very slow and again nothing came out…We are missing something…I even asked if a constipation thing since i read alot of this and I have been and dr said no…I asked to be put on something and was told there is nothing other than the drink kind and last time I took that I couldnt because halfway in I puked it up…
I think in my heart that is problem…but then again I am not dr !!
Piglets, I hate to get so personal, but where do you live? Where do you go to try to get the catheter to work? I worry about your ability to continue doing what you’re doing based on the symptoms you report and your apparent worsening residual kidney function. I’m concerned that your doctors don’t seem to be trying very hard to consider other ways to get your catheter to work and you haven’t mentioned anyone suggesting that you do in-center hemodialysis until they figure out what to do to get your PD catheter to work.
Have you gone to a major medical center and/or university affiliated medical center where there are specialists of all kinds of med students, interns, residents, and nephrology and oncology fellows that would be itching to have a case like yours to work on. Have your doctors done tests to determine that you have a cancer recurrence or are they assuming this because of your past history and current symptoms? How do they plan to find out if you have a recurrence of your cancer and, if you do, what are your doctors considering for treatment? Personally I wouldn’t go to a doctor who brushed off my questions and concerns. There are too many other doctors out there that want patients who want to participate in their care!
You say that you believe you’re constipated. This is often a cause of poor filling and draining in PD. Here’s a treatment protocol for constipation in people with kidney failure. It was developed by Michael Germaine, MD (nephrologist) for the Renal Palliative Care Initiative at Baystate Medical Center, 759 Chestnut Street S2669, Springfield, MA 01199. You might want to show it to your nephrologist before you try it.
http://www.promotingexcellence.org/files/public/grantee_tools/bmc9.pdf
The National Kidney Foundation nutrition guidelines provide information on content of various fiber supplements. Metamucil is one everyone has probably heard of. Some of my patients took Unifiber instead. Here’s information on common fiber supplements that are used to relieve constipation. You might ask your doctor about them.
http://www.kidney.org/professionals/kdoqi/guidelines_lipids/v.htm#Table53
Piglets, your shortness of breath could be any number of things, but I do have to wonder if you’re being treated for anemia? I’d be very surprised if you don’t have anemia with the degree of kidney function you have left, and it can certainly leave you feeling tired.
One of the symptoms of uremia is also loss of appetite (it can progress to nausea and vomiting), so you may be losing weight because you’re just not eating. (They call this “cachexia”–pronounced ca-KEK-sia in case you want to impress your doctors). Of course, this can be a cancer symptom as well.
We haven’t met you, dear, but we do care about you. Please feel free to ask anything you like, and we’ll do what we can to help. As you may have seen, we check these boards in the evenings and on the weekends, and not just during the day.
Unfortunately. Western medicine has a tough time when someone has more than one illness going on. There’s a tendency to want to put people into neat diagnostic boxes, and very little ability to handle the implications of one treatment on other conditions you have. That leaves you sort of needing to become your own “general contractor,” keeping track of the big picture (because no-one else will)–and that’s tough to do when you’re feeling worn out and short of breath.
I just hope that your doctors have not thrown up their hands and said, 'Gee, she’s too complicated." The sending you from one person to another without getting dialysis started is concerning. If so, you need a new team doctors who will help you fight to stick around for those little piglets of yours.
You guys are just so sweet thank you!!
As for anemia question yes I am on Aranesp which at times I have gotten shortness of breathe but this time it is bad…It feels like a knot in my stomach sorta to breathe…(almost like when I was pregnant and had that pressure up on top of stomach)
I did go to new Dr today…I went for second opinion on pd catheter and he seems wonderful…Said I shouldnt have been waiting this long and need to get this resolved asap. He recommends getting a fistula for now so I have a fall back (esp with all the upcoming surgeries and cancer he says it may be easier in long run for me if while in hospital for long term…He said second need to remove this catheter because for not using it for as long as it has been in and not being flushed it is just asking for infection…He said wait a few weeks and let my body heal then put a new one it…He does agree with my life style pd is best .He also says I should see a heart dr since my Ctscan showed heartdisease (gee something new LOL), His staff was extremely friendly and he said for them to make my all my appts with surgeons and such ASAP and if they cant get me in right away to let him know and he will talk to the drs…
sooo that is where I am with that …
As for the cancer ‘still waiting’ but tomorrow I am going to make appt with new oncologist and get this moving along now…
Progress! Your new doctor does sound terrific, and with someone on your side to help you get through the system, things will move faster. Even if you do PD, it’s still a great idea to have a working fistula. 