I am a sad panda

[Annig83]

So after two months of discussing what should be done about my catheter, and it finally being swabbed last week, it revealed two strains of bacteria that could kill me. I am angry at my doctors because for these two months I repeatedly asked them to test the cath. site or to see an infectious disease doctor or someone who could help.  My neph called me and was like "Oh, unfortunately, this happens in PD patients".  Well, I'm sure it does, but why hasn't someone helped me with it?  I always wear a mask, use Alcavis, clean all areas around the machine... bleach my shower everyday!  I just don't see how this could happen... I know bacteria is unpredictable, but it makes me so upset that no one helped me.

I was admitted to the hospital on Thursday and had my catheter ripped out, and a perma-cath put in my chest.  I started Hemo immediately following surgery, and almost passed out during the last hour of it.  I got so deathly sick that I almost vomited all over the nurse and tech.    Is this normal?  I mean I know a lot happened to my body that day, with anesthesia, and pain medications...

I'm in so much pain!  The perma-cath is horrible!  My neph says this is temporary, but I don't know if I want to go back to PD after all this?  What do you think?

[Sydnee]

  I feel your pain.

It reminds me of when my first child was born. He was born by c-section and before I was released from the hospital I knew something was wrong. I told the drs and nurses. But released me and they told me nothing was wrong. The next day I went in to the emergencies room with a high fever and a bad infection. I was in the hospital for a week.  I  was so mad they had not heard me in the first place.

I can't tell you whether to go back to PD. You will certainly keep a close eye on it from now on and the Drs will listen (hopefully)

I did go on to have more kids

Sorry hemo was so hard.

[boswife]

I am so sorry this has happened to you..  It's hard to think of such young people having to deal with things like this.  It's hard on us older folk, but at least some of us have had a longer time of 'freedom' and are more prepared to adjust to what needs to be done.  It just hurts, ya know.  I wish and pray you to adjust well, and get that kidney sooner than later.  Ya might just find that this hemo makes you feel good enough that it makes it worth it to go through.  Wishing you the best.   

[MaryD]

Annig.   I got peritonitis after five months on PD.  I am an ex-nurse, and I, too, followed all the procedures plus some of my own, but I still came down with a bug.

My peritoneum was rested for four weeks, and I was on antibiotics before I had my second PD catheter put in. I am back on CAPD and doing well.

Going back to PD was the only way to go for me - I have the horrors at the thought of HD, although one day it may be the only alternative.

[Whamo]

    Wow, reading this thread freaks me out.  I'm just starting out on PD.  Monday I get my first flush. 

[MooseMom]

What an awful story.  I wish I could be of some help, but I know nothing about PD.  Still, I just wanted to give you a bit of sympathy; you deserve it!  I hope you are feeling better soon.

[sullidog]

It should get better and the cath pain should go away after a few days.

[Joe]

It's really crummy that this has happened to you. It doesn't sound like you have been doing anything wrong with your site care and such. I can't tell you to go back to PD, but I can say that it's been good for me. Hopefully they will get your infection under control quickly and you can get back to a normal routine. Good Luck.

[jeannea]

I'm really sorry no one believed you. I don't know if you can go back on PD or not but maybe they can figure it out.

Unfortunately that really sick thing can happen the first few times on hemo. You need time to adjust. And you're probably on strong antibiotics which can make you feel sick too.

Take some time to rest and heal. You deserve it.

[lmunchkin]

I agree with Joe about this being so crummy!  Look PD is an outstanding modality.  Don't let this deter you from continuing to do it.  John got infections all the time and it wasnt from not being clean either.  His last bout of Peritonitis was from taking too many antibiotics for when he got VRE.  A very serious infection,one in which they have to find the right combination of Anti-biotic to work.  When it was all said and done, the various antibiotics in his body gave him this peritonitis, thus ending his PD.

But he loved the PD too!  So do it as long as it is giving you adequate clearances, cause I know you can do a lot of fun things with this form of Dialysis.  Definately avoid the In-Center if you can.  There is nothing like Dialysising at home.  I know some here do the in-centers because it works better for them. Then others choose home D, where they can do what they want, at times that are convenient for them.

So sorry this awful crap had to happen, but hang in there Anng.

God Bless,
lmunchkin

P.S. John is also a severe diabetic, who got gangarine and had some amputations. After the amputations, the VRE
       was discovered in the bones of his feet.  Very hard to get rid of.

[bleija]

yup, thats the way they did mine, i threw up during my first treratemnt in the hospital.by the time i was done i hurt so bad... and i could nopt find nayway to get comfortable to sleep either. i hated hemo the whole time i was on it... but see how it goes for you, but ask your docs if going back to pd is an option, for me it waqs the whole time, i just had a lot of issues with the cath.. all steming from a faulty peice that nody looked at... until i switched clinics nurse docs surgeons and all lol

[Grumpy-1]

I've had peritonitis twice - like others, not sure how I got it.  Like others try to keep everything clean.  But it happens.  Don't give up on PD just because of this stuff.  Sure it sucks to be in such pain, but drugs will clear it up and you can go on.    Hang in there    Keep fighting    Grumpy

[Whamo]

I hope you're feeling better.  I hope you're feeling good.  (Old Santana lyrics)   

[Fatkidney]

I hope you're feeling better.  Your experience sounds awful.   

[Annig83]

Thanks everyone.  Things are going from bad to worse... I have a blood clot in my right lung now as well!!  I just can't win!  I don't know if this was caused by surgery, or some other strange underlying cause we haven't found yet... SIGH.. They're putting me on Cumidin.  The doctors that speak with me, make me feel like I'm stupid or something.  I feel like I'm being talked down to, and if I do talk to them, they don't seem to listen.  I told one doctor that I've had clots before.  Ten minutes later he asks if I've had clots before?  Uh, yes, do you have hearing impairment?

I had my second round of hemo yesterday.  It just made me tired, and a little nauseated this time  no puking though!! 
I think I'm supposed to start hemo Thursday (if I get out of here by then?) but I am thinking I want to do home hemo.  That's what I liked most about PD, because I could be comfortable in my own bed.  Does that mean a fistula though?  I am currently just having a perma-cath.  Are fistuals bad?  I've read some horror stories on here?!

[Grumpy-1]

I agree about Dr not hearing what you are saying.  Some have that "Holyer than thou" attitude.  For home hemo I believe you will need a graft or fistula.  I don't think they will allow you to do home hemo with a chest tube.  NOT SURE but my thoughts.   Yes some folks have had bad experiences with fistulas, grafts, and PD but don't let that scare you into not looking into it.  I would say for sure to get a surgeon that will do mapping before hand.  That way they will know where the best place to put the fistula before cutting your arm open.  Grumpy

[stringbandbeth]

 My husband had a Permacath for 4 months of home Hemo while his fistula matured. You have to be extra careful and clean but it is totally do-able.
 He also was on PD for 11 years and did have a few run ins w/ peritonitis , but was able to continue PD after. The infections do cause damage to the peritoneum  and can make it stop functioning for PD. For Bear this was a slow process. You should not give up on PD yet.

[Leanne]

Im with Grumpy on the vein mapping.  It will save on having useless surgeries and Lord knows they cut us enough.  I hate doctors that dont listen to us.  When will they learn that we KNOW how we feel? Im lucky my neph is great. I too hate docs that act like we are dumb and dont listen to what we say.  If a doc is not listening I will usually say something inappropriate that would embarrass both of us.  If he notices then I smile sweetly when he looks at me and tell him thats better.  That I prefer if he would be nice enough to at least listen since I am the one trying to live a little longer.  Probably rude which isnt like me but some things really rub me wrong.

[Annig83]

Thanks all for responding.  I'm hanging in here today, but have a slight fever after hemo.  I've been tired since I have a noisy older gentleman next door in the other room, who apparently has dementia since he was asking for his son all night, and then promptly got naked.  I only know he got naked because the nurses are louder than he is.

As of now, I am so over belly surgeries.  I had a c-section,  a PD placement, a PD Removal, a PD placement, an umbilical hernia surgery, tacking of fatty tissue to help the catheter flow better, and now another PD Removal.  I'm thinking that I might stay on hemo, if only to avoid the belly surgeries...but I know I'll have to have the fistual made... I don't know!!  So many things are up in the air right now.  I'd rather just have a kidney

I may go home tomorrow or Saturday, but we're on one week today, and I'm ready to take a real shower (or at least a better one than just to clean my armpits up!  ).

[Fatkidney]

Hang in there.  Hopefully this is the worst it'll ever get and you're just getting it out of the way now.  Thinking of you. 

[sullidog]

I used to get slite feavers after d but never found out why.

[Cynna66]

Glad to hear you seem to be recovering. Hemo is my jam. I've done it for 12 years. It's nice to be allowed to take baths and go swimming. I am such a water person. Also... catheters of any kind are pretty much the worst. I was stuck with them for the first three years until we finally got my fistula up and running. I also love going in to the center because they help keep me in check and make sure I behave. I would probably be terrible if left to my own devices. I am bad at keeping appointments.

[Annig83]

After all the belly surgeries, my doctor and I decided to keep me on hemo.  I feel better anyway.  I have pulmonary embolism so I am on blood thinners, so I don't know when a graft or fistula will be made?  I want to do home hemo eventually. 

[mogee]

I have been on home hemo for eight years.  My first fistula lasted six years.  I had a graft for nine months.  I am using a central line for the last ten months.  It sounds like your PD days are over.  Good luck with whatever you choose.  I hope you get a kidney.

[Riki]

I had 3 peritonitis infections, all stemming from the a mistake made by the nurse who was changing the extension tubing on my catheter.  I'm told that the first infection caused the other two, and the last was a fungal infection that nearly killed me, and totally destroyed my peritoneal cavity, so I didn't have a choice.  I've been on hemo for almost 4 years now, and I actually feel better than I did for the nearly 5 years that I was on PD.  I miss the freedom on PD, and home hemo isn't an option here.  Besides, I have no one willing to put the needles in, and I can't do it myself because of where my fistula is and my visual impairments.  I get along well with the nurses in my unit.  Some of them even have a twisted and filthy sense of humor like myself, and if I get the right ones, we can get each other giggling uncontrollably.  I'll miss them when I get a kidney... *G*