I’m a 38 year old male, new to PD and kidney issues. I was diagnosed with kidney failure in December 2006, had my catheter installed at the beginning of February 2007.
I have a problem with the last 500 ml draining. The solution drains but I have to stand up. This means I have to get up at least 4 times a night. There is an intense pulling pain for the last 500 ml. As if the catheter is sucking on my membrane wall. I have no idea what’s going on. Do you?
X-ray’s showed the catheter is in the proper location.
There is no pain while filling.
I’m able to drain easier when I do manual exchanges vs Baxter Home Choice Cycler, still have to stand to drain last 500 ml.
My PD nurse had me flush my bowls a few times, no change in the drain.
Next we tried to dissolve any particles left from the catheter installation. No change.
Not sure what to try next. I want to avoid another surgery. Plus, what good would surgery do if the catheter is already in the proper location.
Both of my doctors do not know what is going on. One of them suggested that I stand on my head to try to move the catheter.
Did I start treatment too soon?
Have my insides/membrane healed from the surgery?
Should you feel any pain or pulling when you drain?
Filling is a little uncomfortable, not painful at all.
I’ve been reading the board since Feb. Lot’s of useful information. It’s a great resource in addition to PD Nurses and Docs.
Any and all advice is welcome. I sure could use a good night sleep.
We call it “the drain pain”! lol Not many get it, but I do. I’ve been on for a year now. What I found helps the best is to just not drain all of it out. You can also set the cycler to leave a little in, so that you are more comfortable. I think the program to do that is called TIDL (pronounced “tidal” as in “tidal wave”) It won’t hurt you to leave a little in there. I used to be dry during the day, but the cath irritated my membrane, so now I carry 700mL all day. I usually absorb most of it, but get it back off when I’m hooked back up. For some, the “drain pain” gets better with time or even goes away completely. I’m a lucky one, mine stayed exactly the same! lol It is very uncomfortable and wakes me in the night too. I know what you’re going through!
I have been on PD with the cycler since March 3. I too have drain pain. The good news is that they programmed my Baxter machine for tidal and now I only have to suffer the Initial drain and the 5th and final drain when I get up. I get to sleep straight through! The pain is also beginning to lessen somewhat. Now I can actually remain lying down during the discomfort.
Hi! First of all, I am not on dialysis myself but my 10 year old daughter is and she has pain with the end of her drains also. They did the xray on her too and her cath was in the right place and they have had her do the Miralax to flush her bowels and nothing seemed to help. It may just be something that happens in some people. With this dialysis stuff… you never know. Just wanted to let you know you are not alone!!! Best of luck to you!
What does your daughter’s home training nurse say about Kirsten having friends spend the night at your house? It seems like she could either have a friend(s) leave the room or mask while she makes connections and once connected she could do many sedentary activities (play video or other games, listen to music, watch movies/TV, talk, etc.). I suspect that her clinic would want her to remain involved with her peer group and do age appropriate activities and they would want to figure out a way to allow her to do that.
I had a catheter put in May 9th and I still haven’t beenable to use it My exitsite hasn’t healed properly and my nurse tried to put fluid in and it won’t drain. yesterday I went in and she Put in some TPA in the catheterto desolve blood clots if any. Iam getting ready to pull the thing out and go on Home Hemo. I am not on Dialysis yet thank god. but will be shortly has any body had experience with TPA. I am having a lot of pain.
virtsma
Has your nurse and/or dietitian talked with you about whether your bowels are moving regularly? Many people with kidney disease get constipated, especially if they’re taking phosphate binders if they’re on a fluid restriction and if their prescribed renal diet limits the fruits and vegetables they can eat which are a source of dietary fiber. Constipation can cause a catheter not to flow very well.
Another possible reason you may be having draining problems with your catheter could be that it has flipped up and the end is not far down in the peritoneal cavity near the rectum where it should be to get all the fluid out. An x-ray should be able to determine whether this has happened. Sometimes a catheter can be repositioned, but it’s important that the person placing and manipulating a PD catheter be experienced.
So far as your exit site not healing right, it’s possible that the catheter could be infected. If the skin hasn’t sealed around the catheter, you could even have an infection in the tunnel that leads from the surface of the skin into the peritoneal cavity or peritonitis. Have you asked about a culture of the exit site?
Sometimes infection can seed the catheter requiring it to be pulled. If they have to pull the PD catheter, it’s possible to put a catheter in on the other side once any infection has healed. Some people have to do hemodialysis for a while. I’ve known patients that had a second attempt with PD that worked well. Two keys to a successful PD are an surgeon experienced in placing PD catheters and a nurse that has trained many patients to do PD and has seen most of the types of problems that patients can have and knows how to troubleshoot them.
If it turns out that PD is not a feasible option for you – and I don’t know that anyone can say that yet – I’m glad that you’re thinking about home hemodialysis. HHD is another great option that would allow you to learn a lot about kidney disease and treatment and to be in more control of your life and health.
Hi Beth, I have been having a lot of pain with my catheter and it is not working yet I went to differerent doctor and she said that catheter has to come out and another one put in . I wonder if it will work I see the surgeon tomorrow for a consultation. virtsma
Hi Beth! No the doctor hasn’t replaced my catheter yet he is waiting to see if I have an infection I have been on antabiotics he wants to make sure there isn’t an infection before he puts in a new one,I will keep you posted.
best regards Virtsma
My PD nurse had mentioned that it is normal to feel a little pinch at the end. It is actually a good indicator your getting close to being done. She said to usually wait about 5 minutes after you first feel that pinch. I’ve been able to drain everything and she usually leaves a little fluid to relieve the pinch. I was nervous at first and asked a friend of mine who’s husband was on PD for over a year before transplant and he had that problem too. She said that the cath would stick to his liver when it would drain. Have you heard anything about this? She said it was due to the Cath being too long.
I’m still nervous about this and just will have to know what to be watchful for. I will start at home next week completely and will start with manual exchanges. I do plan to change to the cycler.
By the way, I was a hemodialysis patient for over 2 years and was tired of always feeling up and down and wiped out. Plus, I had many problems with my fistula access. I am hoping for a new start with PD. So far so good… There is much more pain in Hemodialysis. This is why I worry about not being able to distiguish the types of pain in PD. I know so far it’s that little pinch at the end of draining. I do worry about the cath latching on to any organs. Please let me know if you heard of this. I’m a pretty petete person and this scares me.
I haven’t ever heard of a catheter catching on organs.
So far as your hemodialysis experience, it is common for patients who do 3 times a week HD in a clinic report to report symptoms of “dialysis hangover” or a “roller-coaster” where they feel OK before dialysis and feel washed out afterwards. They report it takes several hours to recover after dialysis. Patients hwo do HD more often – short daily or 5-6 days a week nocturnal dialysis – report fewer, if any, symptoms. When patients learn how to do their own needle sticks, they seldom have problems with their dialysis access. If down the road you need to do HD, I’d consider seeking out a clinic that offers frequent home HD.
Hi Beth! I finaally had my catheter removed last friday. it had a kink in it thats why it wouldn’t drain. and the cuffs had migrated next to each other thats why it was leaking. I had this catheter on for three months before the problem was solved. :mad:Now and have to wait 6 to 8 weeks to have another one put in and hopefully I won’t have to go on Hemo while I am waiting.
best regards Virtsma
I am new to this and learning but today from the nurse I learnt that there is this medication that can be put in the bag because sometimes these little specs go in the bag and clog the filter in there and cause it to slow. It is a blood thinner but in the abdomen it is not a blood thinner only allows the liquid to flow better. (sorry can’t remember the name of it now)
I am learning so muc here! Good luck I hope you find the problem and get to sleep better! Prayers!