PD users, Please help! Im scared.

[gothiclovemonkey]

Im currently experiencing alot of problems with my cath, and the drs are absolutely stupid. I am a very large woman, and apparently that negates everything I say and do.
Last week I had trouble filling during my exchange,and my tummy was slightly swollen, and i had what felt like a "knot" near my exit site, so I went to the ER. The ER thought I had infection, turns out I didnt. They did a cat scan, they said I have a hernia, and it looks like a build up of blood from trauma (i told them, the only possible trauma i had was from a child accidently kicking my tummy, and not that hard!) The doctor at the hospital came to me, saying he didnt know what was causing a problem. They let me out of the hospital, i still dont know whats up.
After getting out, I saw my regular neph, I told him my lower abd is very swollen, and hes starts pushing around my belly, he says feels normal to me. I said "I know my tummy, and that is NOT normal it is swollen and hard and it normally isnt." He still doesnt seem to believe that, and its getting larger, harder, and very uncomfrtable. My weight has increased by 7 kilos in less than a week.  Still, they dont seem to understand that I know my body better than they do....
Im really getting scared, I dont trust the doctors at all at this point.
Is anyone else having this problem? Is it normal? What should I do???

[jeannea]

I'm so sorry you're having trouble.  That certainly doesn't sound normal.  What does your doctor say about the weight gain?  It seems like that would at least concern him.  Keep fighting.  If you don't speak up for yourself who will?

[Darthvadar]

Apologies to the Nephs. out there... Some of then just don't listen... Then when a small drama becoms a major crises, they wonder why the hell the patient didn't do something about it all...!!!....

Is there a PD Nurse Specialist at the hospital you attend???... A quick call to them could pay dividends... I'm with you... You know your body better that anyone, and seven kilos in a week is just not right... For goodness sake, anyone could see that!...

By the way, I don't have CKD, my mum does, and she's on PD... Keep a close eye on things... Because Mum retained fluid in the few days before she developed a bad peretonitis... She had abdominal discomfort too (didn't tell me, though!)....

Give the nurses a call... Hope it all works out for you....

Darth....

[gothiclovemonkey]

Thank you
Yes Im very uncomfortable, thankfully they already have me on vanco and other pill antibiotics. Im another kilo heavy today. Im not getting more out than i put in... But im breaking even so thats good i guess.
Its confusing, and im irritated with the drs. I told the nurse and the drs, they dont seem to understand, now.... Im not... being mean but they arent English speaking folk. Maybe im getting lost in translation? My doctor is, but hes a ****. He just poked my tummy, and said feels normal to me... *rolls eyes*
I hope your mother is doing well. Love ur pic btw.

[billybags]

You should not be gaining all this weight, so it must be fluid. Are you taking laxatives, are you constipated. That is the first thing our nurse asks. Have they given you tests to see if you have an infection. What problems are you having with your cath, are they sorting your hernia out. Questions, questions, do not let your Doctors fob you off you need lots of answers from them.

[gothiclovemonkey]

The dr at the hospital said i had a hernia, he lowered me from 2500 to 2000 to relievee the stress on it, i guess. My original neph said I dont think u have a hernia... start doing the 2500 again like i prescribed.
Im really unhappy with the drs around here, all of them seem to fart around until its really too far. I had MRSA last year, I complained 2 times my arm had been bothering me, finally went to ER when my temp spiked, and i had mrsa ended up with a 10 day stay in isolation.
Maybe its because im on medical assistance, idk. Seems the only answer they ever give me is, im fat, and if i want they will prescribe me pain meds (which i dont want, because of my lovely addictive personality... Rather be in pain than be a junky)
I dont know what to do at this point.
Im not on lax, but i have been taking softeners... Maybe ill try the laxitives.
My swelling in my tummy is alot like i would normally see in my ankles, only its in my side and lower abd.

[paul.karen]

If your keeping in more solution the you are getting out it could be like Billy says constipation.  But a simple X-ray cold accomplish two things at one time.  It would say for certain if it is a hernia.  But it could also be that your PD tube inside you has twisted or is facing north east or west instead of south like it shold be.  The tube literaly floats around once you are full.  My tube was facing north so i was draining only a small amount of what i was putting in.  had an xray the tech had no idea what to look for so i looked at the xray and saw right away the tube was not facing down.  Went in to have surgeoury two days later.  They gave me twilight drugs and were about to start the procedure.  The doc hit the xray buttona and lo and behold the tube straightened itself out.

Good luck

[natnnnat]

GothicGurl, I'm sorry you are having so much trouble, I am worried about your situation and haven't a thing to offer except I wish it was fixed.   
Paul.Karen:  Amazing.

[gothiclovemonkey]

thank you all
I had a catscan in the hospital, the hospital doctor said i do have a hernia. My original neph, a week later, asked why i wasnt doing the full 2500, i told him the hospital dr said i had a hernia and this would help, he said No, u dont have a hernia, if u did we would see it. (i guess i should be thankful my neph has xray vision huh?  )   
I havent been getting much off, so perhaps it has moved off course. I dont think that im constipated... But im not really sure what that means exactly... (doesnt it mean u have no bowel movements at all?)
Another thing is, my diet has totally changed, im not hungry, ever,and when i do eat it is small amounts. Before i could eat lots lol So it is even stranger that id gain like this.  im special i guess rofl
I am so tired of being sick. I wish we all didnt have to go thru the lovely things that we do.
 I wondered if anyone else had had the swelling like this. its just so uncomfortable. I am not talking about the full feeling.

[KICKSTART]

Firstly a couple of suggestions , take a deep breath  . Im guessing you have only just started pd? The 'swelling' could just be the dialysis fluid in your tummy , many ladies look pregnant. The pain could be coming from your cath , that little kick ,plus the lifting could have caused that. Also you say you are breaking even on fluid , are you restricting your intake at all ? Also that could be to do with the strength of bags you are using . Quantity does not =fluid removal, strength of bag does. If you had peritonitis i would expect you to be in agony. Constipation = not going at all or going very little ! and is very common in pd patients. Appetite , that also alters , some days you dont eat , some days you do. However these are all suggestions and if you still feel unhappy try and find a different neph or nurse to give you a second opinion . 

[billybags]

The constipation thing is weird. My husband always went once a day before capd. He didn't think he needed to take laxatives but the nurse said "OH YES YOU DO". he has to take 2 senna and stool softener,  twice a day whether he needs to or not. Any one would think you would be going all-day with this, but he only goes twice. Gee what a subject to talk about. 2500 seems alot for you to carry all-day, is it extraneal? As KS says it is the strength of the bag that counts. If you are carrying a lot of fluid you will need to use a stronger bag Green 2.27. Do you check your weight in the morning, that should give you a clue as to what bags to use. Weight up--strong bags. Weight down--1.27 yellow bags. Hope you are feeling a bit better to-day. We wont talk about sh** any more.

[gothiclovemonkey]

LOL well im not constipated because i go... so idk. I admit it has changed alot since starting pd but yes....anyway lol
Ive been using green bags lately because my weight is so high, ill just tell u, my dry weight is 109 k, but im 119k this morning, but I finally found a way to explain to the PD nurse what my tummy is like. Ever seen a Tempurpedic matteress commercial??? My tummy is like a tempurpedic materess So now that ive said that they want to see me today because they said "thats not normal!"
DUH  havent i been saying that for 2 weeks now???
Thank you all for ur posts, I am new to pd, and i get freaked out pretty easily... Im still worried, because i dont know what it is, but its helpfull having people going thru similar things.
Temperpedic Matteress Woman 

[RainingRoses]

Please let us know what happens?

[gothiclovemonkey]

Ok,
So the Doctor says it is pretty rare but it happens. It is basically what happens to our feet and legs, only its happening in my tummy instead! Im retaining fluid in my fat rolls ROFL and it hurts because my tummy is stretching beyond its means. Advised me to do green and red bag alternating for a few days. So hopefully this works.
Leave it to me to be a rare one. lol
So much more relieved knowning what it is. Its uncomfortable, and so strange because my feet havent been swollen at all (until today for some reason one foot is a little swollen, the other is still normal)  and im not having trouble breathing, which im thankful for, but usually when i have that much fluid on, i cant breath. *shrugs*

[*kana*]

I have an incisional hernia and it is full of PD solution which never drains.  I have a huge bump and now only do treatments at night laying down.  I was taken off daily fills/drains because it makes the hernia worse.  I can't get the hernia fixed until PD fails and I have to go on Hemo so got to live with it until then.