Hi my name is Rebecca I am 42 years young(smile) I had my catheter place 8 days ago will be starting pd training in a couple of weeks. I was wondering if anyone had any point or tips to keep me from feeling so terrified. I also wandered how i get started on medicare or if this is something my doctor does any info on how this works would be appreciated.
thanks so much
Rebecca in Texas
Welcome to Home Dialysis Central. I’m glad you found our message boards, and am sure they’ll be helpful to you. It’s very, very normal to be scared about starting dialysis treatments, you’re not alone in that. You can do nearly anything on PD that you did before, with the possible exception of swimming/tub bathing, and some PD programs do let people swim under certain circumstances (e.g., in small, private pools, not lakes or large public pools). You can work and travel on PD, your diet and fluids will be less limited than they’d be with in-center hemo, and you’ll have a lot more control over your life and your time. It is possible to live for decades with kidney failure, and to have a good quality of life–if you stay positive, learn all you can, and take an active role in your care. From your post, I’d say you have an excellent start on all three of those things.
PD is very easy to learn and to do, as long as you follow all of the steps just as you’re taught. You can learn it, and hopefully it will all go smoothly for you. You’ll have a PD training nurse that you can ask questions of, and you can ask questions here, too.
Please consider checking out one of our other sites: Kidney School, http://www.kidneyschool.org, which is a free, on-line kidney learning center designed to help people learn how to self-manage. The Coping module can help you work through some of the emotions you’re feeling. Your dialysis center should also have a social worker who can be a resource for you in adapting.
As far as Medicare, if you qualify (and 93% of people do) you should be eligible for it immediately because you are starting on a home dialysis treatment. (People who do in-center hemo have to wait 3 months for Medicare to start). You will need to apply for Medicare, it is not automatic. You can read about how to do this in one of our Medicare FAQs, at http://www.homedialysis.org/v1/medicare/faqs-pat.shtml#2
When you go to the dialysis clinic for the first time, one of the things the staff will ask you to sign is a form called a “Chronic Renal Disease Medical Evidence Report.” This lets the federal government know you’ve started dialysis. The clinic will send this form to the ESRD Network for data purposes and to Social Security to let them know that you need an application for Medicare. There’s a special Medicare application form for those with kidney failure (CMS-43). You can only get it from your local Social Security office or by calling 1-800-772-1213. The Social Security representative will talk with you to fill out the CMS-43 and mail it to you for your signature. Your Medicare can start as soon as the first day of the month you start dialysis.
Hi Rebecca - Welcome to the group. PD is VERY easy to learn, but I understand your fear. Fear comes from the unknown - but relax, the scariest part of PD is getting the cath put in, which you have already accomplished. The exchange process is very easy to learn, so don’t worry about it. The main thing you need to remember about PD - is keep your exchange area CLEAN and follow procedure. Although, most of us will create our own little shortcuts as time goes by. Within a week you will feel very comfortable doing this and within a month you’ll feel like you’ve been doing it all your life, it will just become second nature to you.
The social worker at your dialysis clinic should be able to get your medicare started for you. She will have you fill out a form and she will send it in, (at least mine did) and it shouldn’t take long for it to begin.
If you have any specific questions - just ask. We’re here to help each other - that’s what life is all about. Good luck ! Cj
Hi everyone this is Rebecca I am finally able to reply back and give thanks for all the GREAT information that was given, again thanks to all. I have been taking antibiotics for an infection that started a week after surgery which was the third of february. I am going back to the doctor on tuesday the 28th of february and if everything is healed then they say they will flush it and connect another part that has to be added to the catheter. I am hearing alot about a feeling of drowning that scares me to death since I have a great fear of water, can anyone explain this to me in more detail. I would also like to know if there is any thing that could go wrong with the flushing step. :roll: :roll: :?:
Rebecca - I
I’ve never felt the drowning feeling. I only feel very FULL, even to this day & I’ve been doing PD for 9 months now. Sorry to hear you got an infection - I’m assuming you picked this up at the hospital during your surgery?
Most likely you will not even feel the flushing step. You will sit in a recliner & they will add about a 5 inch extension to your cath - they will then put a bag of dialysite on an IV pole & connect it to your cath. Which they will run straight through to make certain nothing is blocked, this won’t take very long - the whole visit might take 30-45 minutes. Most likely you won’t feel a thing - unless they didn’t warm the bag a little, then you might feel a little coolness running through you. PD does not hurt at all. Once you get past this stage, provided everythings working correctly - you’ll start your PD training. It is very easy to learn. cj
This is my first post to this board.
I started PD training on 2/20 and finished 2/24; have been doing PD on my own at home for a couple of days now.
It really does get easier!
I was pretty much a nervous wreck on my first day of training, because of all that needed to be learned…all the important precautions that need to be taken…and the general change in lifestyle that this whole process means. My PD nurse is a wonderful gal who understood my feelings of being overwhelmed and took all the time I needed to make the process easier.
I guess the thing I took away from the training was that the process IS overwhelming, and there’s nothing wrong with feeling that way! If you remember that the best way to eat an elephant is one bite at a time, it will be much easier!
I thought I’d never be able to do an exchange without following the step-by-step instructions, and now, five days later, I can pretty much do it without thinking…
Bottom line: You’ll do just fine, Rebecca! If it gets to be too much, sit back and cry about it…and then take another bite of that elephant!
Rebecca - Do you have a pre-sternal cath, or do you have one out of your stomach? I have the pre-sternal cath (it comes out of my chest) & I use the the clips that they use on the name badges to fasten around the tube, then I clip the tube onto a lanyard around my neck. Works great & I don’t have the weight pulling down as I shower. I also use the same clips to fasten my tube to my bra during the day - I’m very sensitive to the tape & this works great for me, and it also sort of hides the tubing.
Hi and thanks for the info but I do have the kind that is coming out of my stomach, not sure what I can do with it and the tape is starting to make me itch. :roll: :x :lol:
There are belts for PD that replace the need for tape. Here are companies selling PD belts that I could find using Google. I had patients that made belts of their own to secure their PD catheter and to avoid having to use tape.
– Healthcare Specialties
– Patient’s Pride
– Stickman Industries
– World Technological, LLC
Has anyone used any of these company’s belts?
I have found that using a narrow piece of elastic around my waiste and looping the catheter over it while showering works well to keep the cath from pulling/hanging. Also do not have to worry about wet belts etc. I have been doing this for 1.5yrs. Am on the cycler for 8hrs/night. I have used the Stickman belt to manage the catheter and it works ok since I do not have to do any daytime exchanges. I wear the belt low on my abdoman and still dress the exit site with 2x2’s. Ginger
My 8 year old daughter and I tried everything to keep her tube from hanging, and finally got the information, and eventually the belt from the Patient’s Pride people.
We got the water proof belts and she takes a shower with her tube still nicely tucked in her belt. When she finishes her shower we just change her bandages and give her a clean, dry belt.
They got her measurements over the phone and the belts fit perfectly. You’ll be sooo much more comfortable once you get one for sure!
Susan and Chelsea Roy
Hi Everyone and thanks to all that have given me so much great info. I have been doing home dialysis for 10 daya now and it is not bad at all, I have developed a problen with draining and filling. I could not feel anything at first when i was draining except a little cramping and the end of the drain. then my nurse suggested i drain only 15 minutes since i could not make it to 20 without being in severe pain and it helped some, but now i am in severe pain at the beginning of the fill for about the first 3 minutes. I have taken laxitives to see if this may have been the reason and it has not helped the problem. I would appreciate some good advice or knowledge and thanks to all and have a blessed day. :roll:
I’m not a patient myself but I posted these suggestions to someone else in another PD thread. I’ve modified them slightly and included them here since no one has responded yet. Hopefully patients will respond to your question soon.
You should definitely talk with your doctor. Some things you’d want to tell the doctor or nurse include where the pain is (is it always in the same place?), how severe is it on a 0 (none) to 10 (excruciating) scale.
Ask to have the drain bag checked to be sure everything is OK and that you don’t have peritonitis. If you don’t have peritonitis, other possibilities for abdominal pain include:
You’re not used to peritoneal dialysis and the catheter could be rubbing on the wall of the peritoneum. Ask the doctor or nurse if they can do testing to be sure the catheter is the correct length and in the right place. This would require an x-ray (KUB and lateral).
The volume of fluid could be more than you can tolerate too soon. Ask the nurse if you can try less volume exchanges for now building up to the usual amount and still get enough dialysis.
The machine could be trying to drain fluid that’s not there. Patients report that changing position (leaning into the pain) often moves fluid to the area so the machine can remove it. Some patients say they have talked their nurse into letting them leave a small amount of fluid in (called “tidal”) all the time. Some nurses worry about getting enough dialysis, but leaving a little fluid shouldn’t affect that.
The temperature of the solution going in could be too cold or too hot. If you’re doing CAPD, warm the bags with a heating pad (not a microwave). Ask the nurse how long to warm them. If you do CCPD, check the temperature setting on the machine and be sure that the setting is accurate. Ask the nurse how you can tell this.
The type of solution could be causing a reaction. Ask the nurse if he/she or any colleagues have had problems with others using the type of solution you’re using.
You could have another abdominal problem not related to PD, such as diverticulitis or diverticulosis. Ask the doctor or nurse if you should have other tests like a colonoscopy to check for other problems.
Finally, you might want to ask your home training nurse to call the company that provides your supplies (and machine if you use a cycler) to talk to the nurse there about your symptoms. That nurse has a wealth of experience with PD, their machine, and the solutions and wants your wife to have a positive experience with PD. He/she may think of something your nurse hasn’t considered. If your nurse won’t call, call yourself.
My daughter (8 yrs. old) has been on PD for about 2 months now. She also has a LOT of problems with the last part of the drain and the fill, esp. the first part of the fill after the complete drain, and, oddly enough, the last of the fill on the regular cycles. We’re doing tidal and it does help. I’ve also learned to start, count to 3, then stop during the fill. This gives her about 50ml’s at a time and she can often ease through without pain. It’s time consuming, but worth it.
Also, often the pain can be caused by the machine being higher than the patient, causing the fluid to fill too rapidly. We have the machine, now, lower than her, and that also helps somewhat.
I don’t know if this is a help, but I hope so. I don’t know what the pain feels like myself, but I know it must be bad. My daughter just finished having her kidney removed, and her bladder augmented. Within 1 1/2 days they took away the morphine pump because she wasn’t using it. But she CANNOT handle the pain from the drain and fill.
If you come across something I didn’t think of, let me know as well!
I also had experienced pain with the last drain & occassionally on the fill - it was so excrutiating that I finally told my PD nurse, we were either going to find a way to stop the pain - or I was going back to the manual PD. You should also note, I am DRY during the day, so this works well for ME & is not meant as instructions, but as a suggestion for you to talk with your daughter’s nurse; once you both are CERTAIN nothing else is causing her pain other than the machine itself.
Is your daughter only experiencing pain at the final drain or all drains? You said you are on tidal, but at what percentage? If it is on all drains they can lower the tidal percentage - say from 95% to 90%, which should help with the interium drains, but on the last drain - the machine automatically goes for “everything it can get” so after talking with my PD nurse this is what I do…When I first feel the twinge of pain I close my transfer set, after a minute or so of the machine not being able to do anything will sound the alarm and say “Check patient line.” By this time I am at my machine, and I open my transfer set, hit go**, & it will then start it’s cycle, now immediately hit stop, once the machine registers it has been stopped you can arrow down & bypass the rest of the drain *(at bypass screen hit enter, it will just bypass the rest of the drain) **Note - you must hit the go button to start the drain or it will not let you bypass it. Another thing you need to be aware of in stopping or bypassing the end of the final drain is once in an upright position, your daughter may still have a full feeling & her abdomen may still be hard like it is still full of fluid, which it very well may be. But since you have bypassed the final drain, the machine will not let you re-start the drain process. So now you will need to arrow down to MANUAL drain, & hit enter. The machine will start draining again & your daughter can tell you when she feels the “tug” and you can stop the machine again - you will then be able to get her final numbers & disconnect…this has helped me 100%.
As for the pain during the fill - is it only the first fill? If so, it is possible that it is actually pain caused from the first drain -which by the time the machine starts to fill your daughter is still cramping from the first drain - and hasn’t had time to recover from the pain. I often bypass the INITIAL DRAIN also, as I am dry during the day. But if your daughter is NOT dry during the day, you CANNOT bypass the drain.
PLEASE talk to your daughters PD nurse before doing ANY this! Together, you should be able to find the solution to the problem. I hope this helps! CJ
Thank you for all of your suggestions. The worst part is typically the fill during the night. She’s actually on 60% tidal, so the drain doesn’t bother her after the initial until the final. The fill also doesn’t hurt until she reaches 520-550 out of the 800 mls she fills to. We have found that constipation makes it sooooo much worse. If I get to the machine before she wakes up and clamp it off and on slowly, she can usually get through
the fill before waking up totally.
I do think you may be right about the first and last fill pain being residual from the drain. I’ve been stopping the machine after the drain and giving her a few minutes to rest before begining the fill and it does seem to help.
Thank you again for your suggestions. You’ve been very helpful.
Susan and Chelsea Roy