Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
My doctor told me that I would have to go on peritoneal dialysis. I am a little nervous about it. I know it goes through the stomach and you have to get rid of the waste yourself. Has anyone had this type of dialysis if so can you give me some type of idea of what it is like? And what I may have to go through? I just want to be prepared.
Thanks.
Thanks.
it involves surgical insertion of a tube in your belly. dialysate (fluid) enters your body through this tube. it stays there during the "dwell" period and is removed by gravity throught the same tube after it removes the waste products from your blood. then new fluid is added. this can be done several times a day.
I don't know how the cleaning is done but many people do this and do very well on it.
good luck and I hope it makes you feel better.
I really want to do PD but I can't because my kidneys are too big...meaning I don't have enough room in the "pouch" where the fluid goes.
I have a friend who did PD for about 2 years. She was able to walk around and lead a pretty normal life. Also, PD is low-tech and pretty easy to do. It is the preferred method for young people who don't have lot of other health issues outside of PKD. I hope that PD makes you feel better. It sounds great to me because there aren't any needles!
I wish you all the best and hope you are getting the care you need.
Good Luck!
First I had a catheter put in my belly. I was asleep during the surgery (thank God). Then I had to wait 4 weeks until the site healed (they don't want any leaks or infections). Those weeks were rough because I couldn't take a shower or wash my hair. Then I had a weeks worth of training. After that I started to do it on my own. I do and "exchange" in the morning when I wake up, one around lunchtime, one around dinnertime and the last one right before I go to bed. It's becoming a routine, but an inconvenience. I'm hoping to get on the night cycler within the next month or so. Good luck. I'm sure you'll do well. It's just getting over that initial stuff that's not fun. :)
Make sure you get the latest info on PD.
Notice the "night cycler" that "lcavender" mentioned. Perhaps you can contact her and get more info.
Search the web for PD night cycler devices.
BTW, Polykid, it's OK to be nervous. In fact, it's good that you are!
Keeps you alert!
Hang in there!
Peace and Blessings!
CoachRIchie
I do PD and am on a night cycler now (after about 4 months on the manual bags). So I dialyze while I sleep. I do an extra exchange during the day (any time) which takes around 25 mins.
Not everyone on the night cycler has to do a day exchange.
I like the freedom PD affords me to travel and have my days free..
I would reiterate what the others have said about taking care with the hygiene protocol. I had peritonitis and it can be serious,
Other down sides include no swimming > The big plus is that doing PD can help preserve what is left of your kidney function (not the case with hemo) . My function was around 10% when I started and after about a year it is still much the same - around 9 % (It was declining really fast before I started). I actually still get more creatinine clearance from my kidneys than from dialysis. So overall I do really well , keep healthy and have no diet or fluid restrictions. I think the advantages of preserving remaining kidney function should not be overlooked as dialysis does not replace all the functions of the kidneys. SInce commencing dialysis my blood pressure has become really stable and I take no meds now except vitamins! I do need iron infusions occasionally.
Best wishes with your decision
I'm glad you're going the PD route. If I ever need to do dialysis, it would be my choice too. A number of friends of mine chose this route and all have found it provided a lot of flexibility in terms of how they live their lives. They had fewer dietary restrictions than hemo patients too, so they got to drink more fluids and eat a wider variety of foods (still based on labs).
Some people start PD only a week or so after they have the catheter place (under general anesthesia). You'll be taught how to cover you catheter and keep the area clean so you can take a shower (I can't imagine waiting 4 weeks; the folks I know waited at most a week to start carrying small amounts of fluid and were showering within a few days, their tiny incision and catheter well covered). Alas, while you have a catheter, you can't take baths or go swimming to avoid the risk of infection, so if you enjoy those activities, go now before you have the catheter placed!
The minute you start training on for PD, your eligibility period for Medicare starts (versus the first hemo session for hemo patients), so it's critical you talk with your dialysis social worker about getting the Medicare and, if appropriate Medicare paperwork in order. Medicare will cover 80% of your costs and if you can't afford the other 20%, the state or other programs (including Medicaid or the dialysis provider themselves) should cover the rest. You should never have to worry about being without your supplies, but you do need to keep in touch with your social worker on a regular basis.
The National Kidney Foundation (www.kidney.org) has some programs for dialysis patients, based on availability of funds, that will help offset the costs of some of your medications (e.g. Phoslo, Renagel, etc.). Again, you have to go through your dialysis social worker to apply, so become his or her best friend and ask to apply for every program possible. Some years they also have enough funds to help pay for utility bills as well, something I suspect you could use. The less you have to worry about money and paying for your medications, the more you can focus on staying healthy as possible so you're ready for that transplant!
When you start PD training, even if you're going to start on a cycler at night, please be adament about learning how to do manual exchanges, to the point you can do it with no checklist. A storm can come through and the power can be out for a couple of days and you'll need to switch from the cycler to the manual exchanges. You need to know how to do that and have practiced it extensively, with supervision, before you need to do it in the dark with a flashlight, to empty the fluid from your last cycle and then turn around and do manual exchanges until the power returns. I've talked with a few people who were only provided a checklist on how to do manual exchanges, but never actually learned or practiced how to do them and were in a very awkward position when a storm came through of trying to muddle through a checklist with no power and no clean running water (they had bottled water and plenty of hand santizer and masks, gloves, etc.). So please be insistent about learning how to do the manual exchanges as well as how to connect to the cycler if and when that time comes too.
You're going to do great!
Lots of hugs,
Ruth
PS Check out www.kidney.org and check out their dialysis pages (particularly peritoneal dialysis); they have some excellent explanations and should provide you more information and help answer more of your questions. And keep asking questions! You want to be the best educated patient on the block and have a thorough list of questions to ask your doctor about anything and everything!
I am surprised that people were able to start dialysis after a week. I waited about 4.5 weeks during which time I went t o the hospital for weekly dressing changes and they flushed a little fluid in and out just to stop things blocking up. There is a high risk of exit site infection in the first few weeks ( I got one) so all the cleaning of the exit site and dressing changes are done under scrupulously sterile conditions and you must not get the area wet. I was told it is important to not put more than 500 ml fluid in the first four weeks as the intraperitoneal pressure can cause fluid to leak out and put you at increased risk of infection. It does take several weeks for things to heal. I guess every centre has its own protocol.
I was only in hospital for two hours after the surgery. However you should be prepared to do only light duties for at least two weeks (not lifting at all) . THe first night was pretty uncomfortable but from there on not too bad. I promise you will get used to the catheter being there and it will just seem normal after a while.
I went to see a surgeon recently. When he walked in and saw me he thought he had the wrong room - he said I looked too healthy to be a dialysis patient. Because I only carry a litre of fluid during the day the fluid is not really noticeable . I live a normal active life and although I have had a few setbacks (peritonitis, hernia, exit site infections) I still am a great believer in PD.
Do you know what system they use at your hospital?. It will probably either be Fresenius or Baxter. I have been told Fresenius is a superior system in terms of peritonitis risk and convenience though it is apparently more expensive.
I enjoy reading though before starting dialysis I got very little time to read. I always have a good book on hand to enjoy during my dialysis sessions - so I actually look forward to doing it. Once you get competent , and if you had a laptop , it could be a good time to surf the net or check emails etc. My dialysis pole is reasonably portable, so if need be I can move around or go into a different room once I am safely connected,.Each exchange take 20 - 30 minutes in total , including the washing. The time involved depends on how fast you drain and the volume of fluid required.
It is a very unsettling time for you - just take it day by day, we will help you through it.
will post more later.
thanks for all the information.
Tanya
Can I ask you where you got the bag that you use to go swimming? That sounds wonderful. I'd love to go swimming agan.
--Lisa
Heather
I was excited also to hear that swimming is possible with PD (not what I have been told). So you buy your own bags? I would be really keen to take my kids swimming as that is something I really miss.
THanks so much for sharing that
Rose
i got my bags off my pd nurse..she gave me 3 different sorts to try to find which one suited me........i have chosen INDEPENDENCE PD Activity pouch............code: AP1. when i finish the box. let them know and they get added to my prescription list. then i reorder as needed with other meds i take..
going on pd was best choice i have made. feel so much better for it. so easy to do.. i admit i do night time one so plug in 8hrs, sleep through it and wake new and fresh.. have my grand daughters stay over with me. they call machine nanny's kidney..take no notice of it. can still look after them while im on machine if need be.. they are 6 and 3.. they the ones i go swimming with... i jump on trampoline with them, climb trees. have fun. back with the living again..and all because of a pipe in my tummy working miracles...best thing i have done.. would recomend you give it a try..
Stay strong, I guess you must be scared, but as you may have read, dialysis may work very well for you. If peritoneal is what they suggested, and you agree, then thats what it is. I have noticed a trend to usually recommend this type of dialysis to younger people like yourself.
Hope and knowing you are doing well,
PKDAD