Not a Good Record to Break

[Restorer]

Hello everyone. I'm posting this from my phone, having just broken my personal record of consecutive days in the hospital. I'll make this a summary of what's happened to me in the last 5 days, and I'll leave the details for when I can get in front of a real keyboard again.

As I've posted before, I've had serious problems with negative ultrafiltration since my last episode of peritonitis. On Sunday, I was so fluid overloaded that my lungs filled up with fluid and I had to go to the ER late Sunday night.

I was having such a hard time breathing that they eventually sedated me and put me on a ventilator. I'm told I was responsive at times through Monday, but I don't remember it at all. I got off the ventilator Tuesday, after two sessions of emergency hemo.

When they went to test my PD cathether (because it had had a fibrin clot on Saturday night that I couldn't resolve), they pulled out very bloody fluid. All the exchanges after that were bloody and painful. I don't know what caused that - here in the hospital was the first time I saw it.

Today the going opinion is that I need to have the catheter removed and go on hemo, at least for a few months, if going back on PD is ever an option.

I'm stuck here in the hospital at least until Monday, I think.

[kevno]

not posted anything for a long time but your story on PD is one that many PD patients go through. I had a total of six tench coughs in and taken out over 13 years of CAPD. In the end I ended up with EPS and had to have my peritoneal removed. This is something I was never told about when starting capd BUT they did not know much about eps, now they do. I am still not sure if the patient gets the full story that PD is not really a long term option. Been back on haemo for over ten years now. But do not feel as well has i did on CAPD. But what I know now i would have never gone back on CAPD. Spent nearly eight months in hospital 5 major operations 17 small operations. Plus to make it worse I had been back on haemo for nearly one year. The peritoneal could not repair itself.

Yours once in a while visitor

KEVNO (Manchester MRI)

[okarol]

Oh Restorer, that sounds awful. Sending you a BIG HUG!

Hey Kevno, good to see you again. I had never heard of such difficulties with long term PD!

[kevno]

yes they have learned more about Encapsulating Peritonitis Sclerosis (EPS). I was one of the first to learn the hard way.

[Restorer]

The other thing I forgot to mention: my transplant evaluation appointment at UCLA was scheduled for tomorrow. I had to cancel it. I hope the next one isn't too far away - I made this May 20th appointment back in February.

ETA: More that I want to mention. When I was "out," they checked my hemoglobin and it was at 7.4, so they gave me a unit of blood. That kind of upset me when I found out. The next day they wanted to give me another unit, but I refused. They finally talked me into taking "cleaned" blood - supposedly blood with the antibodies taken out?

[monrein]

So sad to hear about this Restorer!...how very frustrating on so many levels.   

Hi Kevno hope things are OK with you.

[Rerun]

Hang in there Restorer!  I hope they figure out what is best for you quickly.

Hey Kevno!  I do check on you to see if you are still coming on the site.   

[Bajanne]

Hope that you are soon fully restored!!  My caring thoughts are with you

Wow, Kevno!  What a pleasant surprise!  (Please do this more often!)

[billybags]

Restorer, you poor thing, you have been through the mill. The best thing is to pull out your catheter, peritonitis is a bloody nightmare.The bugs hang around for ever in your tube. Alan had that done and was on hemo for 3 months then he had a new  catheter fitted, even though they fitted it too high up it works, he has been on the cycler now for 2 months and not doing too bad. He hated hemo. Just out of curiosity, how many times have you had peritonitis? Sending you lots of hugs.

[paris]

Restorer, You have certainly had a rough time.  I am hoping things change and you can start feeling better. 

Kevno, How much fun to see your avitar!!  You are missed -- come back more often.   

[Restorer]

In about an hour I'll be getting my PD catheter pulled out, and a chest catheter for hemo put in. Wish me luck.

[billybags]

Restorer, have you had it done yet? Was it ok or are you still feeling a bit groggy? Do you start hemo straight away? Thinking about you.

[kitkatz]

Being in the hospital is not any fun. I hope you get out Monday and all goes well.

[Restorer]

I had my PD catheter and temporary groin hemo catheter taken out and an Ash catheter put in my chest/neck on Sunday. It's less sore today. I should be getting out of the hospital today. I hope so, because I'm starting to go crazy.

I'm scheduled for noon Tues-Thurs-Sat at the dialysis center I did PD at. I'm planning to change to a closer center, now that I need to go 3 times a week instead of once every 2 weeks.

[monrein]

I hope you get home soon and start feeling less sore all over.  I bet you're glad the groin catheter is gone although the chest ones suck also IMO.  Thinking of you. 

[Restorer]

I've done two in-center hemo sessions now. Boy, those chairs are terrible. They get really uncomfortable after 2 hours. So far it seems to me that hemo is much less effective than PD was for me, aside from the fluid aspect. I can feel it when I'm not getting great dialysis, and that's how I've felt recently. It's like a taste in my mouth or throat, or a feeling in my chest. Hard to describe, but it always indicates to me that I need more dialysis - and now I've feeling that just a couple hours after finishing a session.

I'm dealing with it. At least it's nice to not be tethered to my room all night every night.

Also, when I've got that taste in my mouth/feeling in my throat/whatever, it mimics thirst. So it's a vicious circle - when I'm not getting enough dialysis, I tend to drink too much, and that makes me feel worse, and on and on. Not good.

[Jean]

Gosh Restorer, hope things start to get better for you. This is awful to happen. Had thought of doing PD, but after reading this uh-uh. Get better.

[Poppylicious]

Really feel for you, Restorer.  I'm currently watching Blokey suffer because he just can't take to PD and he desperately doesn't want to go back to haemo.  Tsk.  *hugs*

[Restorer]

It looks like I'll be getting a new PD catheter put in in the next 2 weeks or so. After that it'll heal for about a month, then we'll see if PD works better for me. If I'm still having problems with ultrafiltration that can't be overcome with icodextrin, then I guess I'm permanently on hemo.

They don't seem too keen on challenging my dry weight, so it's set at 51 kilos right now, as a guess. That keeps my blood pressure high, though, and all the BP meds I have to take are overwhelming me with side effects, especially making me sleepy all day. I'm just crossing my fingers that some time healing without PD will get my peritoneum working again and let me go back on PD.

[Lillupie]

Restorer,
 I am so, so sorry to hear that you are going through this. My heart goes out to you. There is actually some sort of research being done for patients like you. I guess they are trying to prove that if your peritoneal cavity stops working then after like 6 months of hemo will heal it. My PD nurse was telling me this.
 Was there anything you could of done to have prevented this? Not saying it was your fault, just curious. I hate to see people have to go on hemo if they like PD.

Lisa