When is rains it pours

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When is rains it pours

Postby Sandra » Tue May 18, 2004 2:56 pm

Ok... On Saturday we were just cleaning the vehicles etc and Jim felt a cool feeling by his penvic area. Yes he sprung a leakage. He wants to do PD so much but his body will not let me. So the hospital called and said that he has to do Hemo for another 2 months! :x <--- Jim and I think that maybe it is because of the removal of the transplanted kidney back in November. The doctor said it was attached to the wall (weak spot you think) I am being to think so. The first thing we were save for about 2months before the first leakage and now only one week. On PD Jim dialysis very quickly and he wanted to do CCPD with small volumes and be empty during the day as that seems to be when it leakages but they will not give it a try. I would really like to know where it is leaking from and don't understand why they cannot put a little dye in the solution and do a CT or something. Well on to my next chapter. :wink:
Sandra from Canada :-D
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Sandra thinking of u

Postby Elaine » Tue May 18, 2004 5:13 pm

Dear Sandra just read u post :cry: so sorry to hear more problems as u say yes it always seem to pour wen it rains!! :roll: I suppose the Drs gotta giv peritoneam more time to heal and the only real way of finding out is to try out P/d and see wot happens!! :cry:

Wishing things will be sorted as son as is possible for you both. Were all thinking of you.

best wishes Elaine & Rachael UK :wink:
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Postby Lorna » Tue May 18, 2004 6:36 pm

Sorry to hear about the problems Jim is having to deal with at the moment. Has he just started PD? I had only been on pd for 2 weeks when I started "leaking". The doctors reckoned the catheter site had not had time to heal properly, and stopped dialysis totally for a fortnight. After two weeks I was put back onto APD, but stayed dry during the day, as they thought the catheter site would heal better if I was lying down during dialysis.
Hope things improve soon, thinking of you.

Best wishes to you both,

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Rely to Lorna

Postby Sandra » Tue May 18, 2004 9:16 pm

No he did not just start PD. It is a bit of a long story but my husand was on PD from Jan/Feb of last year. After his transplanted kidney for 8 years started to reject. He was having a lot of problems with that kidney. He lost a lot of weight because he did not feel like eating, Blood Pressure lowered, White blood count was raising etc. So we asked it to be removed. This was done in November of last year and he was doing Hemo until Feb 2004? He went back to PD for 2 months and sprung a leak, off for a month, on PD for a week and sprung leak. Now he is going back to Hemo. We think it is a weak spot where the transplant kidney attached it's self to the wall. He is going to be on Hemo for 2 months. The other problem we have is he has a PRA of 99%. The transplant corr said the one test is Class 1 and the other is Class 2. (which I am currently trying to find out more info about this).

They do not usually like patient to Start PD right away do to the chances of leakage but after 2weeks with small volumes you should be safe. Good Luck in your new adventures and Welcome to the Board we are here to just talk or help with moral support.... :cry: :P
Sandra from Canada :-D
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Location: Saskatchewan, Canada

Postby Jack » Fri Jun 04, 2004 3:46 am

Sorry to hear about that i had the same problem when i was on my 4th day of training i had a leak right to my scrotom (it was big as hell :D )
so i had surgery to fix the weak spot i whent on hemo for a couple of weeks again but then when i began pd again i had a leak again and then they told me that if its a real weak spot there is noting they can do about it and they are not going to operating on me and now i got used to it
it isn ass bad as the first time its just a bit uncomfortable because the water gets cold down there :shock: and there is no body heat to warm it up but ive gotton used to that to and with everything ive gone thru i'm just happy to be here
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Postby LadySycamore » Fri Jun 04, 2004 6:13 pm

Hello Sandra.

Maybe this info will be of some help. It's about Low Volume, Recumbent Only CCPD (LVRO CCPD). I wonder if your docs would consider this option. This is an explanatory paper that a PD patient on another board wrote on the subject (and she's the resident "expert" on this).

Low Volume, Recumbent Only CCPD (LVRO CCPD)

Lvro ccpd stands for Low Volume, Recumbent Only CCPD. It means using the cycler at night, while you are recumbent, for an extended period of therapy time. (The last time I used lvro ccpd, for example, I was on it for 10 hours each night instead of for my usual 8.)

With lvro ccpd, there are many short cycles (I did 11 instead of my usual 4) with small fills (750 ml for me instead of my usual 2500) and short dwells.

When you use lvro ccpd, it is necessary not to sit or stand during any of the time one is on the cycler or filled because lying down for the entire therapy time is a key issue in avoiding straining the peritoneum until it can recover from its surgical or traumatic insult.

At the end of the therapy time there is no final fill or else a very small one (once again, to use my most recent experience as an example, I had a 500 ml instead of my usual 2L). Doing a shortened recumbent midday exchange is also possible but again with no, or a very low, final fill in that exchange. You must also be sure to lie down during the entire exchange, including the dwell time.

With lvro ccpd, there is no dialysis for 24-48 hours immediately post-op or post-trauma. After that, lvro ccpd is begun. Over a period of two to four weeks, the fill volume is gradually increased while the number of cycles is decreased. There is also a slow return to a normal daytime fill. Making incremental increases in volume and length of dwells while decreasing the amount of time spent on the cycler should continue until there is a return to the times and volumes of the patient’s normal therapy.

Lvro ccpd has worked well as a post-op measure for me. I have successfully used it after five different surgeries that involved my peritoneum.

Lvro ccpd does not provide as much dialysis as does normal ccpd but it does offer enough to "get you through the night," so to speak, during a recovery period.

I have no residual kidney function at all. Predictably enough, my labs do deteriorate when I use lvro ccpd and so I don't feel as good as usual during that time, of course, but once I get back to full ccpd, I quickly get "cleaned out" again.

Sometimes, if there is too big an insult to the peritoneum or if for some reason one would need more dialysis than lvro ccpd can provide, it is necessary to get a sub-clavian catheter and use temporary hd. This is a decision that your surgeon or nephrologist will have to make.

If you decide to use lvro ccpd, your nephrology unit has the preparatory job of using their computer program which projects dialysis adequacy (one such program is called the PD Adequest Program) to set up a specific schedule of volumes, dwells, time, etc., for you. Your unit also needs to make sure that you know how to program the changes into your machine and that you have enough bags of certain solutions to get you through the changed program. (You will probably need to use stronger than usual solutions during lvro ccpd therapy; I, for example, even need to use some 4.25% bags, which is unusual for me, in order to compensate for the decreased quality of dialysis that lvro ccpd provides.)

You should also be provided with a schedule of dates for the incremental increases of volume, cycles, and treatment time to ensure that you know not only how but when to program everything into your cycler.

Additionally, your unit should be checking as to which of your meds might need to be adjusted for the predictably inadequate dialysis you will be getting during the lvro ccpd period - for example, potassium will not be well dialyzed out during this program so, if you normally take K supplements, you may potentially need to stop them and wait to return to your normal dose once you are fully dialyzing again.

You should lower your intake of protein, too, because otherwise your BUN will get uncomfortably high during the time you are using lvro ccpd. Some people may need to limit their fluid intake as well.

All this is something that you and your unit should be working on during the pre-lvro ccpd period so that everyone and everything is prepared and any additional supplies can be delivered ahead of time.

If you are using lvro ccpd as a post-op measure, your surgeon will make the final decision AFTER the surgery as to how long you need to refrain from any dialysis (again, that is usually for 24-48 hours) before starting lvro ccpd. He also will tell you at that point to what extent he actually had to involve the peritoneum (maybe a little, maybe a lot, maybe none at all) in your surgery. Then you will have a lot more actual and factual info to factor into the final assessment of your post-op plan.

Btw, if the surgeon tells you that there ended up being too much peritoneal involvement to do the lvro ccpd, believe him. There is probably a point at which lvro would not work - say, if there were a lot of tremendous surgical insult to the peritoneum that would require that it be undisturbed until it fully heals, at which point you could probably/possibly resume pd. Should that be the case, you would definitely need to do temporary hd during the recovery period.
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