hmmm im kinda nervous about this...

[bleija]

  ok so tom i am scheduled for a tenchoffogram (sp?) to see whats going on with my PD cath, bc its not working properly. I cannot find anything online about this, and the lady tht i talked to over the phone said i would be sedated. so im a little nervous, so any experience any of u have had would be helpful

[Joe]

Bleija, I think they're going to do a Tenckhoffogram. Tenckhoff is the inventor of that neat little catheter hanging out of your abdomen. That said, I didn't find anything on the internet about the specific procedure. Hopefully someone can shed some light on the procedure for you.

[bleija]

i figured that out when i tried to look up something about it, my nurse gave me an overview, but id really like to know how it feels or at least from someone whose had one... and i was somewhat close with the spelling...lol

[brandywine]

Make sure to post about it after you do it, so that if anybody else has that issue, they can get some comfort from learning about your experience. I hope it goes well! 

[bleija]

it wasnt that bad, they gave me light sedation and pain medicine, something from the morphine family, but it kicks in faster and wears off faster. procedure took all of 15 mins. im not exactly sure of the details, i was pretty out of it, but turned out that it had a lot of fibrin on it and it had also flipped up. i had no pain afterward, slight discomfort tho, they told me not to do anything strenuous  for 24 hours. i felt fine.
bad news being that it ddnt work. apparently it flipped back up, my nurse told me that since its plastic, it maintains a memory of how it was, and probly flipped back to the way it was. so they scheduled me for the same procedure tom, they are going to try to suture it thru the catheter, but if that doesnt work, they are going to schedule me for surgery early next week i assume. im just ready for this catheter to work. i have back up hemo orders, but my nurse isnt gonna make do hemo unless i start to retain fluid or have trouble breathing. we have been watching my weight and my bp.

[brandywine]

Let's hope the sutures work. I know you don't want to have that surgery all over again. I certainly don't.

Thanks for posting your experience. Most of the fear we have as patients is not knowing what to expect. When I heard they were taking a culture of my catheter site, I freaked a little. If I had known it was just a cotton swab, I probably wouldn't have freaked at all.

Watch your fluids in the meantime...and keep us posted.

[bleija]

i was wrong, they ddnt suture it from the inside, i wondered how that would be mechanically possible. but they redid it, and if it ddnt take, which my nurse has prepared me to believe it wont, i will be having surgery next week. at this point, i just want to get this thing working. i hate hemo, i feel like it has taken my life away, i want to back to work, but with the uncertainty of how i will feel on a daily basis on hemo, its not fair to my coworkers to call in last min. luckily my nurse and neph are with me we are all prepared to do whatever it takes to get it working and i love that.... the neph i had previously told me i was doing well on hemo, but i made it adamantly clear that i hated it, and he knew this lol. but he was trying to convince me to do home hemo. i dnt like hemo, i dnt like fistulas, and i was happy on PD and thts where i wanna be. 

[brandywine]

Fingers crossed and prayers. Let us know how it goes.

[bleija]

yeah well i think it went even higher than before or something, bc my UF last night was  -1699.... it has been anywhewre from -600 to positive 124... so it looks like surgery nuber four will be this week... i am just so over this, all i want is for this cath to work so i can be completely back onPD, get rid of this chest cath, and have my life back.... oh and take a hour shower     

[packshortie]

One thing about this procedure if it is the same one I had where they go into your catheter with a rod to flip it back is it only works about 10% of the time.  I had this  done after just two weeks with my first catheter since it flipped.  This procedure didn't work and I got a second catheter put in but by a different surgeon.

[bleija]

oh wow, thts a really low success rate, im surprised that they still do it, oh well, im waiting to find out the day and time for surgery. my nurse sent the paperwork over today, so iexpect to hear within the next day or so...

[bleija]

ok everyone, got my date for the consult with the surgeon, its mon at 1pm... im happy i get to enjoy my turkey day, but at the same time i want this cath working like yesterday. but i was watching some youtube videos and came across a video about a guy that is having some of the same issues i am. he had already had a previous surgery to reposition his cath bc it flipped up as well. the surgeon used a temporary suture, and 6 months down the road he is facing the same surgery. i dnt want this to happen to me 6 months down the road the only surgery i want is my transplant. but im wondering what the the pros and cons of temporary suture vs a permanent suture. knowing how my body functions my first thought is i want the permamnent please. im sure its not that simple though. of course im going to talk to the surgeon about both options and if he does both or if i even really have a choice in the matter. but some insight before mon would be awesome   

[bleija]

well my newest update, talked to the surgeon today, my surgery will be on thurs at 5 pm, sux i wont be able to eat after midnight the night before. he told me they would go in and look to see whats going on, and based on that either go in and suture it or worse case scenario replace the whole thing altogether, i hope they dnt replace it, bc i dnt wanna do 2 or 3 more weeks of hemo, and i doubt my nurse will let me get away without it.

[brandywine]

Thinking about you. It sounds like it will be a couple of rough weeks for you, but once you get that thing fixed, you will be a lot happier. I love PD.

[fearless]

that really sucks that you have to go without food for a whole night and day 
for me that would be worse than the surgery!
so sorry bleija
sometimes it seems like bad things cluster together - and you just have to GET THROUGH them - i will be thinking of you

[bleija]

i think what im gonna do is just try to sleep all day and just wake up when im suposed to go in lol... the surgery itself, i know what im getting into there, the not eating all day is gonna be the hardest part, ive already apologized to my hubby bc i know im not gonna be very nice lol. when im hungry im a total bit**, and i know it, he gets back at me tho when im mean and hungry for surgeries or procedures, he describes my favorite foods, makes me laugh now but pisses me off at the time.

[fearless]

 

the sleeping all day sounds good to me......

[bleija]

got my surgery confirmed for tom, got lucky and it got moved up to 2:30, so 2 and half less hours i have to be starving, very happy baout that 

[fearless]

nice goin'.  let us know how things go

[bleija]

just now getting home, the 230 idea was a joke, i checked in at 1230, then sat in the waiting room, waiting to be called back until almost 4, ddnt go into the operating room til 530, when i was in recovery, i i saw my transfer set in a biohazard bag on my table, and they had a reed cap on my ctheter <not treansfer set> so i asked them ok, what the h*** am i suposed to do with this, i cant use this... so the nurse said cant u just reattach it?  UH NO, its no longer sterile, can u say infection, the reason i lost my first pd cath to begin with. so i asked her if she could call someone from dialysi, and see if they had a transfer set, if not i would have been forced to drag my sick nurse in from home just to give me that part. i actully got to leave at 9. dropped off my prescription thn went and got some food, i was still starving and grumpy. when we went back to pick up the pill, they told up they could fill it bc they couldnt read the date, and they couldnt tell us that when we dropped it off... luckily the doctor that wrote it put his pager number on the script so we got ahold of him and he wrote us a new one. being completely aggravated, my hubby offered to drop me off at home while he went for attempt number 2 to go get my happyt pills. im not hurting too bad right now, but i know tht all the drugxs they gave me havnt worn off yet, and when they do wear off i will be miserable so i want to be ahead.

so apparently, my cath was in the corrct position, so they look at the actual catheter, apparently i had a lemon titanium paice, so they replaced that. they seemed to think that it was occluding the flow, im kinda belei ing tht bc when i filled tonight on my cycler, i was jumping in like 20 25 ml intervals when before i was only doing 10s, the real test will be the drain, im still in my first dwell, im hoping praying that this fixed the problem

[fearless]

wow, what a fiasco!  But the quick fill sounds like a good sign.  Did the drain go well?  I truly hope all is well now bleija.

[bleija]

i think i had a faulty cassette, bc it the middle of the dwell it screamed system error, i looked it up and apparently its a pressure issue, but the machine has been running fine otherwise, i was so hopped on druggs my hubby turned it off and i thought i dreamt it. but yesterday my nurse did a manuel in clinic and the filled and drained fast, and actually took off 400, and last night no alarms, and 651 UF.... i posted  in another post my excitement, its like this last 5 months of hemo hell are coming to an end

[fearless]

aaaahhhhhhhhh----nice

[brandywine]

So glad and thankful that you are finally getting to do PD. That's awesome. I hope things start to calm down for you. I know that sometimes it feels like every time it rains, it pours.

[bleija]

i get my chest cath rdmoved tom morn, hemo hell is over, machine is runnin g great at night, i think its drying me out tho, so my nurse is giving me soem yellow bags so i hope that helps, otherwise im doing great...