I just want to get started on dialysis

[DanCars]

It's strange...I keep reading about people not wanting to start dialysis - putting it off even though they're really sick - or just dreading the day that they have to start...and all I want is to just get started. I've had my PD catheter since late January and everything is all healed up well and my flushes have been going fairly well but, according to my blood work, I'm not "sick enough" to start dialysis. I asked my PD clinic nurse, last week, just how sick and tired I have to be before they'll get me started. I work full time, Monday through Friday, in an early childhood development centre and all of my co-teachers are very understanding about my lack of energy but it's really getting me down that I can't keep up the way I could before. On top of that, I'm pretty much a zombie at home on evenings and weekends. When I get home from work, we have a bit of supper and it's all I can do to stay awake for a couple of hours before going to bed. Then, I'm up several times through the night and have a very hard time getting out of bed in the morning. For the past month, or so, I've spent all day on Saturdays sleeping - literally, all day...I might get out of bed at supper time and then still sleep in until 11or 12 on Sundays. My nurse suggests that it's a positive thing that I have a few more weeks, without being tied down to dialysis, but I can't imagine that my exchanges will possibly take as much time out of my "living time" as sleeping currently is. I have PKD and my kidney function, currently, fluctuates between 12 and 15 %. I can appreciate that I'm fortunate enough that I'm not incredibly sick but, on the other hand, I don't think I should have to wait until I am incredibly sick, in order to get started. Anyone have any uplifting thoughts? I WILL actually feel better, and have more energy, won't I, once I start dialysis? Thanks, in advance, for any thoughts and experiences you'd like to share...

[kcramer]

I have PKD too. Since I have a lot of pressure on other organs from the cysts, I am on HD. I was told that 10% is what the dialysis center keeps the kidney function at. If you go below 10% then when starting HD they have to bring up your kidney function to 10% usage. It is better to start at 10% than have to bring it up to 10 after starting dialysis. Your tiredness might be from carrying around kidney weight. Have you asked your doctor about how much your kidney's weigh? Have you had a CT or other ultra sounds. They can't do certain tests because the die used can damage the kidneys. I don't know if this helps you since you are planning on PD but this is the info I have for my PKD problems. I was told my kidneys are about 10 lbs each so I am carrying around 20 extra pounds. I am out of breath if I do too much. I am retired and my exercise consist of water aerobics.

[DanCars]

Hi kcramer, they haven't been able to do the CT on my kidneys yet because of the dye, so I don't know how large they are. Do you go to a center for HD, or do it at home? Were you not a good candidate for PD or did you prefer HD? I'm curious about the reasons people choose HD over PD...as it seems, albeit without ever having done either, yet, that one has so much more freedom, in so many ways, with PD - freedom of time and in food and fluids? From reading other forum posts, it also seems that people report feeling better, overall, when doing PD or even HHD; I'm assuming because of the increase in frequency, over in-center HD. I am overweight and not only because of enlarged kidneys but I have been working a lot harder to eat healthier and get more exercise. I have lost almost 20 lbs since about Christmas but I know I could still lose five times that much...one day at a time though, right? I hope you're feeling well today.

[dac0214]

People with PKD often make poor candidates for Peritoneal Dialysis, because the grossly enlarged kidneys take up so much space within the peritoneum, that there is little room left for fluid, which makes PD much less viable than HD. Also, PD comes with significant risk for infection, during which times you MUST go onto hemodialysis. Also, most people on PD develop 'hardening' of the peritoneum after a certain number of years, which also makes PD much less viable.

[kcramer]

Hi Dan...They did a CT without die after Christmas on me. That is why I don't know exactly how big my kidney's are. I was not a candidate for PD from the two vascular doctors I have seen. I have had three babies, and three major surgeries (all with cysts supposedly not related to PKD ) and three minor surgeries at the belly button. They said there is too much scar tissue damage to be able to do PD. I go to dialysis at a center three times a week for 3 1/2 hours. I chose the last possible time at 4:15 which gets me home around 8:30. I stay up and eat supper and watch a program on tv and go to bed. That gives me two full days were I feel good. If I had an earlier time, I would sleep all day and then not be able to sleep at night and the next day I would be tired. This way, I feel good with two days of freedom. If I did HHD, it would be five or six times a week for a shorter time but I enjoy those two days without any arm pain and being sleepy. I spend my time at the center reading on my Kindle and sometimes watching Dr. Phil. I really don't focus on what is going around me. I also have a lap top to take there if I wanted to. There is an outlet behind each chair. I was going to do HHD but after my difficulty starting HD with a deep fistula and not being able to get the blood cleaned out because of pressure problems with the machine and my fistula, my husband decided, I needed a professionals around. I had a transposition of the fistula (the biggest reconstruction surgery by my new vascular doctor) and they have a button hole ready for the blunt needles. If I continue to do well my husband might be my care partner but I will have to be doing real good. They have the button holes so I will be able to cannulate myself and do HHD if I choose. It is one step at a time and being patient. I have finally gone 4 weeks without any problems and very little discomfort.
I too was overweight (some because of PKD) but I lost 40 lbs the two or three years before going on dialysis. That with the kidney's slowly gaining in size. So I look about 20 lbs less than I actually weigh. I was told to lose an inch off my waist (lol) and this year I have lost 1 lb. and have lost 3 inches off the hips and none off the waist. If you know anything about PKD the waist area gets larger as the kidneys expand. I will see the transplant team dr. in September and this time it will be the surgeons not the one who didn't know as much about PKD.
Yes, one day at a time is what it takes and if you stay positive and keep looking forward to positive things, you will do well. I had three grandbabies last year and now I have another this October. I crochet and knit. I love reading books and going on vacations. My husband and I also go to the Y and do Arobic Water Walking three times a week. We have a camper and a pontoon about 20 minutes from home. Close enough for me to travel back to the center for treatments yet still have normal activity. Although I cannot walk far (get out of breath) and feet/ankles hurt, I still enjoy the world God made where there is a lake, woods and quiet (until weekends). This June will be a challenge because it will be the first time since starting dialysis that I will go away from what I trust to a center I know nothing about. I hope I will be able to cannulate myself by then. One step at a time. I believe in trying to be as normal as possible. My kids and grandkids think I am fine. They know about what I am doing but since I look well and don't go around moping around they think all is well. My husband is a good caregiver, a counselor also who says I am doing great. He protects me from doing too much when the kids ask me to do things that might be too much. I hope this answers your questions. I usually answer people in the email but was not sure you use it.

[milleck]

Hi Dan.
I have just signed on to this site. My husband is in the process of having a PD cath inserted within the next few weeks. He just got out of the hospital and is sleeping at least 18 hours a day. He is retired disability so working is not an issue. They are considering inserting the cath now so it will not need to be placed emergently due to other medical issues. He is concerned about restrictions having the catheter will impose. Are there restrictions?