Goodbye PD

[Restorer]

This afternoon I checked into the hospital to have a PD catheter put back in. The plan was to go in laparoscopically, look around and make sure there aren't any big problems, then put the catheter in. After some testing, a ton of semi-frustrating questions, and too much waiting, I got moved to the surgery wing - where there was more waiting and more redundant questions. 

I was finally taken into the operating room close to 6 PM. They put me under, and then I woke up in the hallway on the way to the recovery room.

It turns out my peritoneum is far too scarred and has too many adhesions to consider PD again. They showed my mom some of the pictures, and it was very obvious. Lots of silvery-white streaks and such.

So now I need to think about hemodialysis options. First I'm going to call UCLA and see if they can give me some sort of estimate to transplant, given my expected circumstances. Then I'll find out if, given that timeline, it's worth it to get a fistula. Then I'll look into centers nearby that do either (or both) home hemo or nocturnal dialysis. 3-times-a-week in-center hemo just isn't doing it for me.

Also, I've learned not to schedule afternoon/evening surgeries. Today, my blood pressure was okay (130/86) before the surgery. In the recovery room, it was way up, around 180/115, probably because the BP meds I took in the morning had worn off. Labetalol and Vasotec by IV hardly brought it down. They were threatening (apologetically) to admit me if it didn't come down. They called my nephrologist to see if he would release me to go home and take my nighttime pills - 45 minutes later he called back and said they could only let me go if my blood pressure dropped below 170/110.

They gave me my usual (oral) dose of clonidine, and 30 minutes later an IV dose of something else I missed... hyper-something? Finally, after 10:00 PM, my BP was low enough, and my nurse called my nephrologist back (his answering service, actually). It took another 40 minutes for him to call back.

So the moral is, don't schedule a surgery for after your normal BP meds wear off. 

[Jean]

So sorry to hear of this Restorer. Did they put in a temporary catheter for you, or did I miss that part? Hope something can go better for you and soon.

[Restorer]

I've had a permacath in my chest for the last 3 weeks. It's pretty much working fine, I just don't know how safe it is to keep using a permacath for months.

[eroomk]

My husband has had a permacath in his chest since early April.  He is considering his options as his transplant failed.  We would be most interested in knowing what you and others have chosen for long term dialysis.  I have read so much about PD problems it concerns me.

Any info on the good, bad and ugly would be much appreciated!

[MooseMom]

If PD is no longer an option for you, NxStage or nocturnal may be worth investigating.  I plan to use NxStage when I start D; my neph says it gives good clinical results, so perhaps you could think about that.  You've been through so much.  I hope you find a modality that works well for you!

[billybags]

Restorer, I am so sorry to hear that you can not carry on with PD, I know it doesn't last for long, then again some people go on with it for years. Have you started on hemo yet? You are now going on to another phase of this shit. Hope all goes well.

[paul.karen]

Ah it sucks to read this Restorer.
I hope the transition will be as easy as can be for you.

bet you cant wait to get them lines out of your chest.

My last KT/V last week was kinda bad.  I may not be far behind you in switching from PD to hemo. 

[looneytunes]

Restorer, what a bummer day that was!  But, like you, my husband was no longer able to do PD and after a short stint back at the center, we are now doing NxStage at home.  He has been using a perma cath since February though he had a fistula built and it's ready to use (we just have not been trained to use it yet)  He feels better than he has in years running 6 days a week, 3 hours a day.  He felt pretty good with PD for the first few months but after that, it was downhill.  So to see him feel so much better now, it is amazing.  I've also heard a lot of great things about nocturnal. 

Best of luck to you on your decisions. 

[Jie]

My last KT/V last week was kinda bad.  I may not be far behind you in switching from PD to hemo.

Hi Paul, I thought your Kt/V was about 3 not that long ago. Why did it drop so far?

[MooseMom]

...last KT/V last week was kinda bad.  I may not be far behind you in switching from PD to hemo.

I'm really sorry to hear that.  Are you not feeling well?  Would having to switch to hemo be really upsetting for you?

[paul.karen]

Not to hijack Restorers thread but Jie.  My KT/v's have been going down since i started PD.  Last one was 1.9 (last week).  And yes it was @ three just about 5 /6 months ago.  Neph has changed my script added an extra exchange.  I cant really do more then i am hour wise (9) hrs a night.  Cause i get up at 5am for work.  SO i have to hook up @ 8PM which leaves me with NO LIFE as is.  So hopefully things will change for the better.

MM,

I feel well thx for asking.
And yes switching to hemo would be pretty distressing for me.  Just cause of my work schedule and hearing how people feel so washed out after doing dialysis.  Having to go in center or even if i do Nxstage.  I am just happy the way things are and dont want to change things.  I think my mood would change for the worse and if that happens depression wont be far behind.  And  this just as things in my life are looking up ESRD.

[Jie]

Sorry to hear this, Paul. It is surprising that it could go down so fast.  My number goes down too, but at a little slower rate than yours. Maybe, an extra exchange before bedtime helps some. For most patients, PD is supposed for a few years.

 Sorry for interrupt the thread, Restorer. Hope the HD works well for you.

[Brightsky69]

I am so sorry andI feel for you.I think if I had to go on hemo I would just give up. It's my worst nightmare.

Sorry I don't mean to be a downer. We all have to do what we have to do, hang in there!

[natnnnat]

My husband way preferred hemo over PD, he hated PD. 
How's the permacath going, Restorer?

[lola]

Hey Restorer my Otto has an upper arm fistula, when he started he was in-center and felt like crap all the time so we switched to nxstage. Otto was home for 2 years and was starting to really have a hard time with doing dialysis 5 days a week and then when they wanted him to switch to 6 days he told them to take there machine and put it where the sun don't shine. Otto has been back in-center now for almost 3 months and he's like a new person, he feels the best he has in over a year, his labs look better and mentally he is better. I think you will find everyone one here has had good and bad things happen no matter what kind of dialysis you do, you just need to do what is best for you guys.

[RainingRoses]

What devasting news, Restorer.  I just went through the same process but with a positive outcome.  I'd been on PD for 3 years and developed peritonitis, which became a big problem because I reacted to the gentamycin (Red Man Syndrome) and then started reacting to antibiotics that I've taken all my life.  Enter infectious disease doc.  Finally, I got over it, and received a new PD catheter in February.  I was on hemo for 2 months and did not do well on it.  I am so so sorry you must face this.  Let us know how it goes.
Pete

[Stoday]

Otto has been back in-center now for almost 3 months and he's like a new person, he feels the best he has in over a year, his labs look better and mentally he is better.

Presumably he's on 3 sessions a week in-center. Is that so?

[lunadatura]

I am facing going back to hemo after PD. I have mixed feelings about it.

I love PD because
- it gave me my life /time/schedule back
- not feeling wasted after treatments

I hate PD because
- WIEIGHT GAIN
- not being able to swim anywhere i want to and missing hot tubs and baths - AUGH!!
- the nightly set up is a pain in the ass
- the amount of trash and recyling is horrendous
- the machine is much heavier and awkward that it should be for travel.

I busted my knee carring my PD machine down a flight of steps - it will be 12 weeks before I can put weight/walk on my leg/knee
so pd has not been a boon to me.

[Brightsky69]

I always hear people saying that they miss swimming while on PD. But isn't swiming restricted while on Hemo too? How do you take a shower on Hemo?
I haven't had any trouble with waight gain. I've been on PD almost 2 years. It's true the nightly set up for PD is a pain in the a$$.

[del]

Showering is not an issue with hemo unless you have a perm cath.

[lunadatura]

I blame PD for ruining my knee. I was carrying my PD machine down a flight of stairs when i fell . Mashed my knee and trashed the machine. My knee required surgery and now 12 weeks of no weight on leg. Because of this I am glad to be done with PD. It was good while it lasted. But i wont miss the daily set up, the gigantic amout of trash i had to manage, the huge weight gain, the bad blood pressures due to hidden water and not being able to swim except in hawaiil.

Hemo is better for wieght and BP management for me but the in center schedule sucks. I do look forward to being able to swim again.