I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: smcd23 on September 13, 2012, 06:58:25 PM
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K sorry I've been MIA lately. But been trying to adjust to the new normal.
Anyway, Tony still has his PD catheter even though he hasn't done PD since 6/14 (with the exception of the time they used his PD tube to drain his belly when the JP drain blocked off post tx) ANYWAY he noticed the last few days that the area right around where the catheter enters his body is puffed out. The puffiness is in a squarish shape from the top scar where they made the incision to place it, and then all around the exit site. He says a few times when he's gone to sit or stand it feels like a muscle spasm/cramp. I can even notice the puffiness. He said it doesn't hurt all the time, but it's been bothering him on occasion.
The tube still has bloody yuck in it from when they used it to drain his abdomen post tx. His nephrologist has said he prefers him on hemo, but yet has made no mention or anything about permanent hemo access or removing the PD tube. But that's another story.
So the question, has anyone on PD ever experienced this? I don't know if his neph is in the hemo clinic tomorrow or in the PD clinic, so tracking him down may be hard, and I do not want to have him say go see your primary when we do get a hold of him, and then end up in the emergency dept because it's too late for an appointment. Just hoping maybe someone has seen this before so I can know which avenue to explore (neph or primary or ER)
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It sounds like Heman have an exit site infection. It's something that needs to be checked out by the PD team as soon as possible. Even if he's not using the cath for dialysis, it's still a gateway I to his peritoneum and can get infected. Not something to play with.
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I'm sorry i don't remember when the surgery was that they used his PD cath as a drain. If he's not going to be on PD this sounds strange to me. I should think the PD cath needs to come out. That's another surgery he'll have to be knocked out for. If they had removed the PD cath and simply put a drain into a "fresh hole" - he wouldn't need anesthesia to remove that drain later. If the puffiness is pink, red or warm to the touch it's likely to be infected. If it's "calm" and simply puffy it may be a herniation of some sort. Any doc worth his salt should be able to get some idea what's going on - but not good to wait - because if it's infected that can be widespread within the abdomen. Does he have a fever? (another sign of infection)
I'm not trying to give you a diagnosis of course. But I personally think he should see the first doctor available to see him.
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I agree with the others. See a doctor ASAP. That doesn't sound right.
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Sounds just like when I had a cath tunnel infection.
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Called the PD nurse and she is going to have the head nurse at the D unit look at it and report back so she can call the neph. I looked up site infections and it looks like a tunnel infection more than an exit infection. Problem is that's the side they put the kidney on last time so he has no feeling in that area and has no idea if it hurts. Ugh just when I thought things were going well enough, right?
And the PD nurse didnt know they had used his cath as a drain. She couldn't believe it. But I guess if you have a way to drain the belly when your JP stops working, it's better than putting a new JP in? I don't know I'm just worried it got all gunked up then and now it's causing a problem 2 months later.
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there are different kinds of drains. But I think they're usually left open or attached to something to "catch" whatever is draining after surgery. They're attached to the skin with a stitch or two. But you don't need anesthesia to remove them, whereas the pd drain is closed and requires general anesthesia to remove. It coils around in the abdomen and isn't designed to drain the abdomen after surgery.
I think there might even be some youTube vids about them.
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there are different kinds of drains. But I think they're usually left open or attached to something to "catch" whatever is draining after surgery. They're attached to the skin with a stitch or two. But you don't need anesthesia to remove them, whereas the pd drain is closed and requires general anesthesia to remove. It coils around in the abdomen and isn't designed to drain the abdomen after surgery.
Correct. But his JP drain had blocked off somehow after surgery, and his abdomen had filled with over 4 liters of fluid and he was uncomfortable. There was no doc available to replace the drain at midnight on a Saturday night, so the head of tx decided the best solution was to use the PD tube because it accessed the same area, and would relieve the pressure and discomfort he was experiencing from having over 4 liters of fluid in his belly. Trust me, I flipped out about it because while he does have a permacath now for hemo (he wasn't adequate on PD) if that fails, the PD cath is a backup to make sure he could get *some* dialysis.
They are not 100% sure what is going on, but its believed that he currently has a tunnel infection. Makes sense since with both the PD cath and chest cath, he isn't supposed to shower or bathe. But we've been showering him 1x a week (more if he needs it but since he's so limited in what he can do, he has not been getting very dirty) and the 1x a week isn't so great for hygiene around the PD site. He does clean that every day, but that isn't nearly as good as a shower because even if he cleans the bacteria and such in the immediate area, his skin is still covered, ya know? So they are trying to figure out when they can do surgery. His neph will remove it, and he has D MWF in the morning. So the only time they can find for removal so far is Friday at like 1 in the afternoon. He HAS to eat before D so I am not sure how that is going to work. I told the receptionist at the office that and she was going to check into the type of anesthesia and get back to me.
So has anyone ever had their cath out? What can he expect? If it is in fact Friday at 1, what time can we expect to be done? I have nobody to help me with the toddler, and Saturday is the last day I can work OT for probably the next 6 months due to Federal budget issues and I really need to go in and try to get caught up. I assume he won't be able to watch our son on Saturday morning? Gah! I am having a stinking panic attack over this. Just when things were getting "normal" this happens.
Oh and the best part? He goes back for re-eval with the tx team on 10/9, and if this is in fact an infection, they can't relist him until January anyway per their protocol (4 months without any infection). We were so hoping he'd get a kidney within a month of that appointment since it only took about 20 days last time. Since his kidney rejected within 30 days, he can have all his time back I guess, so he will be right at the top of the list again once they reactivate him. I think he was hoping to be good to go and living D free by Christmas this year. Okay, I'm stopping the pity party, but damn, just wanted something to go his way for once. :'(
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thank you for filling me in on some of this. I guess I should have read your profile too. And I looked up a JP drain (I didn't know what that was)
I know it's important to get the PD cath out if it's infected. But why can't they do it on a Tu or Th? Sorry if I missed something about the scheduling problems there. Usually it seems like they schedule surgeries in such a way that you don't eat after 9 the night before. I asked for a local anesthetic to have my PD catheter removed and i was told no. Even though it's a removal it's apparently major surgery.
Please don't be in a hurry. Perhaps if your husband doesn't have peritonitis he can be treated with antibiotics if there's an infection and you won't have to rush the surgery. I don't think it's great to have a surgery on a Friday anyway because everybody that's on that team goes home at 5, and if there's a complication there's a different staff on the weekends.
There's a hurry to find out what is wrong, but then the answer to that will tell you whether or not you need to be in a hurry. What are they doing to find out exactly what the problem is?
And this isn't something for you to think about now, but I'm concerned about the fact that your husband received a transplant in June and the PD catheter wasn't removed at that time.
I've never had a transplant, but you might want to post a question under transplant asking if anyone who's every received a transplant while on PD had their catheter left in.
If there was a drain for the surgery there was no reason to leave the PD cath in. Wasn't the kidney working to remove fluid yet? If the JP drain was clogged and fluid was building up that's an emergency and and if a surgeon is needed at that time he needs to come in.
Sorry, i just really don't get why they left the PD cath in and I guess it's my own curiosity as to why they did it. Not something for you to worry about until after your husband is fit and well again. And this is only my opinion too of course but i don't think you should be in a big hurry for the next transplant until he's fully recovered from this ordeal he's been through. If he's at the top of the list then it will be there soon after he's ready I would think.
Also, a patient isn't allowed to keep their PD cath as "back-up" when they start hemo. (I tried! :) They want it out asap because they have no care available to you for that while you're on hemo. The two therapies are seperate until Medicare, so they don't let you "do" both (even though you're not really doing them at the same time) i refused to let mine go right away and i used it to control my fluid after I started hemo and they were't removing enough fluid. They told me it could get infected being unused. i dont know if that was their way of hurrying me to remove it or not.
I hope very deeply that you and your husband get past this well and quickly. Just being stable on dialysis will allow you to quiet your lives to enjoy the holiday is he doesn't have another transplant before then. Don't forget to try to take care of yourself too. (i know that's easier said than done, but take a deep breath once in a while - you've BOTH been through a lot) :cuddle;
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I guess one of the neprhologists in the practice is on vacation, so my husbands neph is the only one covering all the D patients, so he only has time to do the surgery on Friday afternoon. I don't know why they couldn't find a surgeon to do it, or refer us elsewhere, but...
They are really not in a rush to find out what's wrong. I called the PD nurse and gave her a run down of what I was seeing and he was feeling. She then called the hemo clinic and my husband isn't sure if the nurse there looked at it or not, but the neph showed up later and said he heard he had a tunnel infection, and that the PD cath needed to come out.
As to why the PD cath was left in... well that's an interesting story haha. He had the tx and left the hospital 6/19. He had a working kidney at the time and a stint in his bladder. The surgeon said they usually remove the stint in an outpatient office procedure (ouch!) about 2-4 weeks after tx. But since he had the PD catheter, they would leave the PD catheter in and schedule an OR for the stint removal and take out both at the same time 2-4 weeks after tx. No biggie. Then the rejection started. When the kidney was rejecting, they gave him a chest catheter because they had to do hemo while they were trying to kill off his immune response with insane immunosuppressants because the kidney stopped producing urine (I guess it had shut itself down when the attack started, or at least thats what they found when they did the first surgery and biopsy on 6/23) and he had so many IVs going. He literally gained about 40lbs of fluid weight during his 20 day stay. So when they released him on 7/3 he still had the working JP drain, but by 7/10 it had clogged or closed off, and dialysis wasn't removing the fluid from him quick enough even though they were pulling 10lbs a day, so he had the serous fluid from the operations collecting plus fluid shuffling from other parts of his body into his abdomen. So they had instructed him to continue using the PD tube (this was after being readmitted that night) to drain as needed.
After they removed the kidney, the surgeon said he wanted him to go back on PD in about a month or so, once he had healed well, and gave him the green light at his follow up appointment to have the stitches from the kidney being removed. But his neph is very happy he is back on hemo because he was having a hard time meeting adequacy with PD. So the tx surgeon never took it out because he wanted hubby back on PD, and the neph never took it out because I think he forgot maybe? I honestly don't know. Maybe they were waiting to see how things worked out with hemo access - he still only has the chest tube for access, and there has been no talk of a permanent access. And the chest cath is a pain in the ass because he's young and we have a very active 3 year old. My father in law can't walk right now so we have to help him do laundry, shopping etc, and the 10lbs weight restriction they gave him on his right side because of the catheter is sort of annoying in regards to those things. He can't pick up our son (or he isn't supposed to) isn't supposed to mow the lawn, carry things etc. And he isn't supposed to bath (PD cath) or shower (chest cath) and when he does things like mow the lawn, getting clean after is sort of necessary.
So that is the long story as to why he still has both. I don't think anyone anticipated having both, especially since the kidney was supposed to work this time....
And off topic but completely hilarious - Fresenius ordering STILL calls him to get his order. Even though the PD nurse and hubby have told them that he isn't on PD anymore.
We still have the PD machine in the spare bedroom (anyone need a Liberty Cycler? You'd think they'd be looking for that by now) and about 2 weeks worth of supplies, if anyone wants to come get them ;) I'd like to have our spare bedroom back, well I'd like to have it in the first place since we had rented this place just because it had the extra room for the supplies. Then again, I guess this doesn't surprise me. He had a machine break on him, and we packaged it up like they want and left it for Fedex, and it sat in our front hallway for over 2 months, even though we called Fresenius and FedEx several times.
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oh the joys of home dialysis! :)
Thanks again for sharing your story, It all still sounds strange to me. The nephs in my town don't do any of the surgeries, and the surgeons at my tx ctr don't do nephrology care.
It's surprising to me that your neph would be doing the removal surgery. Have they started him on any antibiotics to treat the infection?
I can't help but wonder if leaving that catheter in was really the right thing to do with a new kidney in place.
but again ,that's not something to get focused on now. Need to get hubby better.
When I switched from PD to hemo I kept my pd cath for about 3-4 months. My fistula wasn't ready yet (they discovered that with a gigantic infiltration that turned my entire forearm a deep deep blackish purple which took almost a month to clear) So I had a chest cath and PD cath both in place for at least a few months. I became very "divorced" from my self-image at that time because it was so bizarre to strip naked and see the tubes cominf out everywhere. But I showered by covering the chest cath with a couple layers of cut garbage bags over the dressing and taped thoroughly with waterproof tape. Then I had to tape the pd cath to mysel too. It took me longer to get ready to shower than to shower! But I never got an infection. Also I had a pd cath for over 8 years and never got an infection. I never washed it or covered it. I just made sure it was dry after I showered. I'd pull on it just a bit and dry around it. Dryness is your friend.
well I hope that your husband can get the tubes out of his body soon one way or another. I certainly felt relieved when I finally got mine out and could just dialyze with my fistula. Showering is much easier now!
ps - I'm not saying your hubby should try to shower like that, but I think he might be able to get clean by preparing properly.
It sounds like your clinic never officially "switched" him from one modality to the other. Medicare will only pay for one type and the clinic has to do some paperwork to make it happen.
You might want to check your insurance/medicare stmnts to see how they're billing.
very mixed up crazy time for you!
Let us know how things go.
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They are billing for hemo because that's what he's on. I check them all and save them so we can try to deduct for taxes this year.
I really don't know why they left the PD tube in place, I would have thought they'd remove it when they placed the kidney. I have no idea what the logic was behind that.
So today hubby is saying the area is more tender, and the way it's puffed out it's right near the top scar from when they put it in. He said it hurt REALLY bad when he sneezed. It's starting to sound more like a hernia than an infection (he has no fever, it's not warm to the touch etc) but he is also on bactrim still while his immune system continues to rebound. I told him to to make sure he tells the nurses at dialysis tomorrow so they can get his neph in to look at it. Unfortunately, the PD nurse works out of the other clinic and I am not sure if she could make a trip over to look, too.
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ugh.. It's so frustrating when nobody else seems to be in a big hurry to fix a problem that is pretty much the center of your life. >:(
I'm going to keep sending positive thoughts. Keep us updated!
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Well, we have a few options in front of us right now, and none of them are all too fabulous.
1. Surgery is set to remove the PD cath on Friday with the nephrologist. But the nephrologist cannot fix a hernia, which is what this is looking like more and more. It's one solid bulge and the other day when he was taking a bag of trash to the truck, he said he twisted funny and the pain got really sharp and intense. The pain is getting progressivly worse - when he sits it hurts, when he laughs, coughs etc. No oozing or anything from the exit site or anything. One of the hemo nurses said it looks more like a hernia, but she has no real PD experience to be sure, but she said her $ is on a hernia.
2. The nephrologists office set up an appointment with a general surgeon next Thursday. It is just a consult. Then we'd schedule surgery from there depending on what the general surgeon said. That surgery would be to both repair the hernia and remove the PD catheter.
3. (And this is the option I came up with) I called the tx center because the tx surgeon is a general surgeon and ALSO an access surgeon who does grafts, fistulas and PD catheters. I explained to them what was going on, and since we have an appointment up there in a few weeks to see if Tony can be relisted, I asked if we could push that up, and set up a time to get the catheter removed and a hernia repaired. Since they were in there last, like literally right next door, they have to remember the area. Then we could kill 3 birds with one stone, right?
So that's where things stand right now. I didn't hear back from the tx center today, so I am going to follow up in the morning. Then I guess worst case scenario is we do surgery to remove the catheter at least on Friday as planned, right? Ugh sucks. So that means tomorrow after work I have to go drive our son an hour and a half away to my parents so I can take Tony on Friday, and then work on Saturday morning (our last OT for the foreseeable future) and then drive that hour and a half to meet my parents to pick up our son because they have plans that night. I don't see why they can't take a toddler to a bar to see a band but whatever >:D
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I'm not following your schedule exactly as far as which week you're talking about with these different days: so I don't know if your husband's already had a surgery!
If so, I hope it went well.
OK, now this is only my personal opinion, PLEASE keep that in mind. I'm only basing it on my own personal experience.
Surgeons generally specialize, except for "general surgeon" which usually means they do stuff in the belly: gall bladder, hernias, appendix, catheter placement, removal.
My nephrologist never did any surgery on me. A general surgeon placed my catheter and a different surgeon removed it when my peritoneum stopped working.
A vascular surgeon created my fistula.
I've never heard of a transplant doc doing general surgery because transplant is such a specialty.
Sorry, but I'm very suspicious of your transplant docs! I probably don't have any real reason to be and am just basing that on second-hand info - but I'd go with a general surgeon who has experience doing hernia repair.
Again, this is just me talking and you have to remember that I probably don't know what I'm talking about! :)
I don't want to undermine your confidence in your docs. You know what's best for you and husband, so follow your own reactions to whatever they tell you and who you trust most.
I truly and sincerely hope your husband can get his body repaired so he isn't feeling this pain! and you can both take a breath.
again, the best to you. :cuddle;
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The tx doc is the lead tx doctor. He started off in general surgery and moved into tx as his specialty. From what we've been told, he moved into access since there are few surgeons that can do access within the state. When I called them to ask them if they could do it all at once and asked if he could fix the hernia if thats what it is when he was taking out the PD cath (and this was all if we could get an appt there sooner) and they said he could do it, or if he needed assistance, he'd be able to get it. The neph on the other hand has no experience with abdominal surgery, he just does the PD caths which is why he can't fix it. He just wants it out ASAP to verify it's NOT an infection.
That and our state doesn't have many vascular surgeons, as I recently found out. The one that did the fistulas is no longer in practice, so in our area, I don't think there are any. The surgeon that took out the parathyroid is who is apparently doing the access surgeries now, and THAT worries me. The tx surgeon I am not worried about, I've read up on him and think he is more than competent. And I am not too worried about the neph removing the catheter - he put it in. I've been doing reading because I wanted to know more about the removal, and I guess nephs doing the PD catheter isn't *that* uncommon.
Surgery is tomorrow. All of tomorrow (well I guess later today) is going to suck. I have a sick kid on top of it all tonight (I posted a rant in caregivers, if you're interested)
Either way, bummed about him needing multiple surgeries, but he's so uncomfortable. I wish I could find out more about what it's like getting the PD cath out. I searched here but didn't find much.
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thanks for filling me in on all that.
I guess things are really different from one place to another. It's important to feel confident in your docs to at least remove some of the fear that goes along with surgery. Maybe by now your husband is already catheter-free. Hope so! I had mine out and it was pretty uneventful. There was some soreness for a while. i remember the next day I had to dialyze and i walked into the clinic a bit hunched over because the incision was hurting. Once I got started i took a pain killer and then i was feeling pretty good! :)
Can't wait for your hubby to be back to (as much as possible) NORMAL!
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He's doing okay. He was good on Friday when we got home then the local wore off I think, so he took some pain meds we had left from his last surgery, because his neph said tylenol was enough! I think his neph is crazy. He was sore and not feeling well yesterday but today he is a little more mobile. Still sore in that spot if he stands up straight but he is able to get up and walk around more than he could on Friday and yesterday. Didn't help when the little guy used his stomach to push himself off the couch yesterday.