Hello,
My father is 83 years old and his eGFR is now 8. The doctors want to start the process for home peritoneal dialysis overnight. We are feeling quite anxious as a family and I would appreciate your support.
Can anyone offer their experiences on starting PD, physically and mentally how they feel on dialysis?
My father loves to travel abroad- how easy is this to arrange?
Is there a lot of abdominal bloating and pain involved?
How long have you been on PD?
Thanks so much!
I don't think I can answer anything regarding PD, itself, I CAN tell you a story I heard of a guy that traveled with his band for an 8-month tour of the US, while on PD in the band bus. He said that he'd had to visit more than one hospital while on the road due to infection. However, he said that his dialysis provider was a big help getting supplies to him from one city to the next.
I guess, if you can do better than a 20 y.o. at not getting infections, travel is not out of the question.
I live in the UK. I was on PD when I was 66for a short period of time due to getting a transplant. He will have some discomfort for a week or so when he gets his PD catheter inserted, he would start PD about a couple of weeks later. The PD nurses will visit him every day to check on him. As well as the machine he will receive lots of boxes, I got over 25. PD itself wasn't painful. I hope this helps
Thank you so much for the reply. Did you find you felt very tired doing PD or did you feel better in yourself?
I was only in PD for 9 days. My eGFR was 6 at the time so I didn't feel that much different but if i was on PD longer I think I would feel a difference
Thank you. Can I ask if you developed a lot of abdominal bloating from the fluid? I understand you were on it for a short time but wondered
No, there is a small amount of fluid left in the abdomin after PD. The PD nurses will explain everything during his training
Been on pd for over a year . There is training for it. Yes lots of boxes . You have to train in manual bags in case power goes out some people like doing manual some like the machince there is three steps in pd dialysis drain always first fill and dwell . I have a last fill on my Machince about 1000 Sabine that call tital . I will tell you some people like me have terrible drain pain no one told me how bad it can be my doctor said he didn’t tell me cause only percentage of his patients have it. There a test you have to do every three months to see if the prescription they have you on is giving you the right amount of dialysis call Kt/v you have a 24 hour urine to do bring in bag of fluid that you drain and they take blood . I fell my last two times it need to be 1.7 or above if you fell they will change your prescription there differnt bags on pd dialysis the end cap will be green yellow or red some will do purple it usually a yellow and a green the red if your bp is really high purple a differnt type a lot of diabetics use purple doctor may put me on a purple cause I’m having so much trouble when I did two greens I cramp so bad I can’t even stand on my legs when I did a green and yellow I’m fine but it may hit be enough now . You tired your supplies you can do it yourself or desktop someone at Baxter.
Traveling may not be easy if you are in the states it easy to have boxes ship in differnt states you have to check to see if they do it aboard .
Pd firs give you more freedom you have your days free but sometimes your body can only fooling we are working on a plan for me hopefully I don’t have to switch to hemp but it firs happen to lots of people
Before you read my story I want to say that I’m alive today because of PD. There is no way that I would have put up with Hemo. People talk about how bad they feel after hemodialysis. I feel great and while it’s a hassle to do PD daily you feel better because you do it daily.
I can add some to Beachgirl32’s reply. I’ve been on PD for almost two years and have been around the track a few times.
I have to do blood tests ever month. On a quarterly basis I have more blood tests along with my PD adequacy tests. I also need a blood test monthly to stay on the transplant list. I meet with my PD nurse and doctor once a month, sometimes even on the same day. I also have an annual appointment with the transplant doctor. Basically, you get very friendly with your team. I have a very good nephrologist and actually look forward to my monthly appointment. She has a positive attitude and I always leave feeling better when I leave.
Let’s talk about the catheter. Think seriously about how they install it. I sleep on my left side so they placed it so that I drain laying on my left side or in a sitting position. In retrospect it was a mistake. I should have installed it for sleeping on the right side. This is a minor irritation caused by the location of my bed and the table that hold the PD machine.
I have to take sitting and standing BP every morning when I get up along with logging a few measurements from the machine. The log sheets go with me every month when I meet with my nurse.
I’m supposed to wipe down the PD machine every day with am OTC disinfectant. I’m not good at this but I haven’t had any problems, cross my fingers.
Connecting a disconnecting every day is the only hassle. In the evening my wife change the dressing on my port. This is needed because you never truly heal from placing the port. The tubing that they use doesn’t allow for your body to meld with it. In reality all your body does is grow around the tubing so it is possible for germs to get into your body where the tubing comes out of your body. My wife uses a prescription antibiotic cream around the tubing. It is possible to change the dressing yourself but it is much easier for someone else. It took me a couple of weeks to feel comfortable Setting up the machine, connecting and disconnecting. But now I can do it without any concerns.
I use Baxter for my PD machine and supplies that I can’t pick up from my monthly nurse appointment. They are REALLY good about delivering the supplies. They give you a delivery window and have been great about showing up during the window. Plus, they deliver your PD fluid into your house and stack it correctly, new boxes under the old ones.
I don’t know how much freedom other programs give you to manage your fluid mix but I can change the bag percentages as I feel appropriate. Currently I do 1.5 & 1.5 but every third or fourth day I do 2.5/1.5. This help keep my body from collecting excess water.
Lastly, when I started PD I had occasional cramping during the drain cycle. This progressed and the cramping got worse and more frequent. After discussing the problem with my doctor and nurse we changed my nightly cycle to five instead of four. Riding the quantity of each cycle fixed the problem.
Feel free to ask questions if you would like more information or clarification.
Gary
Hi Gary, thanks so much for your thorough response. I am based in the UK- can I ask where you are living?
Also have you been able to travel whilst doing PD?
How big is the PD machine?
Do you find your abdomen is swollen from all the fluid?
Do you feel more energised with the nightly PD clean?
Hi,
No problem, I’d be happy to add more detail.
1) I live in Portland, Oregon USA
2) Traveling is a little more complex. We have made several weekend trips to visit friends. For weekend trips we just throw the PD machine and the solution bags plus one night into the car and enjoy the trip.
We haven’t traveled by air as I need to stay within a four hour radius of the transplant hospital. But if I were to travel it’s fairly simple. My health care provider has several suitcases designed specifically for transporting the PD machine and one set of bags. It’s a wheeled bags so it’s no worse to use than a large suitcase. They will also supply me with a doctor signed form so that I can get it through TSA. You can check the machine but I’d recommend taking it as carry on. It’s considered a medical device so it won’t count as carry on. You just give it to the steward as you board. It will also allow you early boarding. As for the liquid, if you’re staying at a hotel you can arrange for the hotel to accept the boxes for your prior to arrival. If you’re staying with someone they wil deliver to their house. Just remember that someone needs to be home to accept the delivery.
3) The machine is about 18”x14”x6” This in increases so if you use the metric system you’ll need to convert them. As for weight I’ve never weighed it but I can say that it’s manageable. Both wife and I can carry it out to our car that is distance of about 50 feet. We are both 75 and in decent but not excellent health. You’ll know that you’ve done some work when you do it. As a guess I’d say that it weights around 20 lbs. we just wrap it in a heavy blanket and put it in the trunk.
4) Initially when I was doing four cycles a night there was a small amount of swelling during the night but as you don’t leave the fluid in during the day there is no noticeable swelling. When we changed to five cycles per night there was no swelling as each fill is smaller.
As a benchmark I use two hours per cycle so going from four to five effectively added two hours to my nightly treatment. I use the extra time to read or write but a TV in the bedroom may be useful.
4) This is a yes and no answer. When I started on PD I felt much better after a week or two. Once you get to that point you maintain that level. There are no highs and lows like there can be with hemodialysis. Overall, I feel fairly good 95% of the time. I take long walks daily. Basically, I can do what a typical person of my age can do with no problems. I do get tired more easily but i suspect that it has more to do with the anemia than the CKD.
More info:
Anemia can be a bonus for CKD. I manage to keep it somewhat in check with a weekly shot. The shot is done with the same syringe that diabetics use for insulin. So it’s really not much more than a pin prick. I get mine in my belly area but it can be done in any fatty area.
I don’t know where you live but if you live in an area that can loose power regularly or for an extended period of time you might want to consider a small gas/diesel generator as you will never want to do manual exchanges once you find out how convenient the PD cycler is to use in comparison. I’ve talked with my doctor about skipping PD for a day or two. She grudgingly say that one day is ok but I get the stink eye when I ask about two or three days in a row. So I guess if the power is out for less than 36 hours I’m ok but more than that I better have power.
I have one other problem that is irritating and does affect a small number of people with CKD. After eating I occasionally throw up my meal. This isn’t a regular thing and I always know when it’s going happen so there is plenty of time to prepare. Once I throw up I feel fine and could eat another meal. Having this side effect I always carry barf bag like they use in the hospital. It’s convenient to store in a purse of bag and easy to dispose of. Fortunately, I’ve only gotten sick once in public.
One last silly detail is that ideally you will want the cycler within twenty feet of a toilet, sink, or shower. You can use a disposable collection bag or a 20 foot extension tubing giving you 40 ft. I always carry disposable bag for collection when I travel. Also one other thing that people don’t typically think about is disposal of the cassette and empty bags. One weeks worth of stuff will fill a large kitchen size trash can so there is the potential to need a larger trash can. The positive side of this is that at least in the U.S. it’s not classified as medical waste so it can be put out with your garbage.
I hope this helps you and I’m sure that once you get into a rhythm you will find that PD doesn’t disrupt your life any more than a daily shower.
Good luck on the new chapter of your life.
Gary
Good morning Formine. There is a Facebook group as well for support and information if you feel you need more it's Chronic kidney disease uk. Run by Andrea. She is a lovely lady and everyone on there are so helpful and supportive. Personally if you're talking about travelling around abroad organising dialysis in a hospital department would be a lot easier because you just go there and they have everything there. Good luck with your Father and decision. Brian
I’m sorry to hear that your father’s numbers are so low. I personally don’t have any experience with PD but my father in law did it for several years. I never heard him complain about it as it made him feel so much better. Without it he had done a lot of out of the normal. My mother in law on the other hand had to deal with the issue of the fluids boxes . They do take up a considerable amount of space. After he started the PD I don’t think he travelled farther than the Dr and dialysis clinic. That is because my mother in law was small and frail and couldn’t load and unload the boxes and equipment to travel. But I know a lot of folks travel and most times you can have the fluids shipped to your destination beforehand. I wish you the best and hope your pad experience is successful.
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