curious

[brenda seal]

I am curious to know whether anyone else has had to cease dialysis temporarily and for how long . Laurie has recently had surgery to repair a hernia and his doctor decided to rest him off dialysis whilst the abdomen healed ( he is on PD ) . The original plan was to cease dialysis for four weeks and " see how he goes " . He lasted a week or so before he started to get really sick , after two weeks very , very sick . After looking at the blood tests creatinine 700, urea 42  they have restarted dialysis on reduced volumes - today is day three and he is marginally better , able to keep small amount of food down . By the time they told him to restart dialysis he was too sick to contemplate hooking up and just wanted to be left alone . The nurse from the clinic told him if he didn't go on the machine he would just go to sleep and not wake up . Is this true? How long would you have to be without dialysis for this to happen ? Why would they want him to go four weeks if after two he is this sick ?

[MaryD]

Brenda

I am just getting over my second bout of peritonitis in 5 weeks.  The plan for the possible third bout is that my catheter will be removed and another one inserted.  I will not be able to do PD - they think for about a week.  I should be fairly OK as I'm peeing quite well.  I will have my bloods checked fairly frequently for toxin build-ups, and if possible I will stay off PD for as long as possible - I gather maybe two weeks.  If toxins build up too fast I will have to spend the nights in hospital on my back on a PD machine with very small fills. If that doesn't work - emergency HD. 

I'm not exactly thrilled.

Laurie's four week break sounds awfully long.  I understand that without dialysis depending on the toxin levels you eventually do go to sleep.  If you have no peeing power it is a fairly quick and peaceful way to end things.

I cant understand why he would be expected to go without dialysis for 4 weeks.  It sounds dangerous to me.

I think of you and Laurie often and hope things are coming good for him - it's taking so long

 

[jeannea]

I think the reason he would go to sleep and not wake up is the fluid would build up around his lungs and he wouldn't be able to breathe.

I think the 4 week break is dangerous. Do everything you can to keep getting him some dialysis. Reduced volume is a start. Keep trying every day. See if you can get him to eat some protein, maybe egg whites. Just do the best you can to encourage him. These toxins mess with your head and make it tough to think rationally. He's lucky to have you.

[smcd23]

From what I understand, once you're reliant on dialysis (as in no longer needing to start it, or having it coming at you soon) you can only go about a week. I am not sure how long Laurie has been on dialysis, but if he just started or hasn't been on long, he could go longer, maybe a few weeks. But once you're on it, from what we've been told, you get a week, maybe 2 before you'd cease to be.

[billybags]

That seems hell of a long time to go with out dialysis. When my husband had peritonitis and they had to pull his catheter they inserted a temporary line in his neck and he had to do hemo. Kick arse. this does not sound right.

[brenda seal]

Thank you guys for taking the time to reply to my post . Laurie was a little better yesterday but fell in a heap again this morning . Coming good now and has just had a cup of soup so fingers crossed .
Mary , I am sorry to hear you have had that horrible peritonitis twice recently and sincerely hope it does not recur . When Laurie had it they put antibiotics in his dialysis bags and he also had oral antibiotics for about three weeks and luckily it did not come back . I admire your positive outlook and would love to see some pictures of your knitting . I applaud your decision to get help with the cleaning , if ever I win Lotto that is the first thing I would do .
Billybags , he is now back on the machine using reduced volumes for the time being . It did not sound right to me either - I mean if someone can go four weeks without dialysis , why are they even on it ? Maybe putting the line in his neck would cost the system too much money . I don't understand why they would just wait for him to get this sick before anything was done . How much damage has it done to what little function he has left and how long is it going to take him to recover ? It all could have been avoided , that is the part that makes me angry .
Brenda

[Chris]

Curious, was the neph ever consulted pre or post surgery? The 4 weeks seems excessive and sounds like surgeon has no clue about dialysis.


Glad Laurie is improving.

[brenda seal]

Chris , The whole saga was a battle between the renal team and the surgeons . The renal team wanted the surgery done as soon as the hernia was diagnosed but the surgeon could not justify doing it as an emergency as it was not strangulating . Laurie had to wait about a month for the surgery ( we do not have private health insurance ) and the surgeon said it was up to the renal team to come up with a solution for the dialysis . It was the neph's decision to rest him off dialysis altogether

[Chris]

Chris , The whole saga was a battle between the renal team and the surgeons . The renal team wanted the surgery done as soon as the hernia was diagnosed but the surgeon could not justify doing it as an emergency as it was not strangulating . Laurie had to wait about a month for the surgery ( we do not have private health insurance ) and the surgeon said it was up to the renal team to come up with a solution for the dialysis . It was the neph's decision to rest him off dialysis altogether

Ahhh, I remember reading a little about te struggle in another thread. A no win stuaton with either doctor there.