Ok, so after 11 months, I finally passed my kt/v test with a score of 1.82, which my nurse said is passing for PD patients.
Initially I was on 8 hours, 4 exchanges of 1800ml per night. When I failed the first test, then they moved me to 2000ml per exchange, then 10 hours of 5 exchanges of 2000ml, then 10 hours of 5 exchanges at 2300ml, then finally they decided to just go a head and do 12 hours with 7 exchanges of 2300ml and that seems to have done the trick. My peritoneal membrane seems to be as slow as the rest of me these days I may be slow, but I get there eventually.
Also, this is the first month that I was in range for protein, potassium, and phosphorus. So I got my first successful month since I started all this July 2022. (I failed manuals, and then had to have surgery so that delayed starting PD on the cycler until January of this year.
I'm hoping I can keep all this where it is this month, though with Thanksgiving coming up, I'll probably mess up my numbers a bit during that event. Just saying. They shouldn't plan labs the week after a major holiday. That's just not fair.
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I finally got my protein in range, god knows I've been eating enough and drinking enough protein shakes. I saw my neph today and grilled him on kt/V for hemo patients . Seems below 1.2 is failing and 2.4 is the top range they want. So Oct I passed with a 2.41, then this month I failed the one on 11/7 so they redid it. That was 3.3 and that obviously was too high, so once again they redid it and this one was 2.5 so it was good.
I discovered that unless you ask, and ask the right questions no one volunteers information. I had to write down my ?'s so I wouldn't forget but I asked about kt/V and then dry weight, and finally my time on the machine. They have my dry weight too low as I'm eating and eating to gain weight for the transplant list, and today tried to take off too much fluid. I stopped that right away. I always ask them what they are doing.
They had me at 3 hours 15 min but since my kt/V has been good I'm at 3 hours now. I can't believe I'm the only one who questions things.
Not sure if they use my weight to figure kt/v or not. I'll have to ask. That's great that you kept at em to get yours right. I know they have a lot of patients to see, but you would think it would be easier for them to get it right without all the iterations. I swear, sometimes I think they're just guessing most of the time. So keep asking those questions! How often do you do the 3 hours? 3 times a week? I know I'm supposed to do PD while I sleep, but there's no way I can sleep for 12 hours, so i end up doing at least 3 hours just tied to the machine laying in bed watching netflix or news or something. I may have to take up knitting or something productive, though I'm not sure I can sit up or those 3 hours. Haven't tried that yet. That's next on my experimental phase, to see if the back pain returns if I do that. If I could, I could be doing some work or chatting with you guys on here. I'm feeling a tad like a bear in hibernation.
I do 3 times a week in center, Tues, Thur and Sat. My normal time is 10-1 but they've been calling me with earlier times, anywhere from 6:15 to 8 am. While I'm not fond of getting up at 4 am for the 6 am chairs I'm done earlier and can get work in after.
With the 10-1 I work from 7 til we leave at 9 and then after til 5. My boss says since I'm salary I don't have to use PTO for anything over 4 hours.
When I did PD it was 7 hours and 1800 ml. Even though I passed kt/V I think maybe it wasn't enough and that's what caused all the problems and landed me in the hospital. Never know now. Since I feel much better on hemo I'll stay here.
ohhh.... I am due to catch you all up on what my journey has been...but I am chiming in here saying you HAVE to advocate for your needs. Dailysis centers, admins and docs all get their reimbursement pay from meeting standard goverment issued numbers. They can get docked up to 2% for not meeting them. Sooooo Much for Patient-Centered- Care!
When I started, they wanted 3 hours to 3.5, four days a week. And the wanted to take off a lot of fluid. Ridiculous. I fought not only the center, but my Nephrologist, who is used to me, and now I only do 2 hours, three time a week, no extra fluids. My numbers are still not set because they blew out my fistula three times so far and had to skip treatments. They also cannot get up to the speed they want for the pump rate. If I had not advocated, I probably would have ended up in the hospital. I'll write tomorrow about all this in detail.
PEOPLE....demand the care you need. It is the only way things are going to change.
OMG blew out your fistula! Not once but three times! I’m concerned about my upcoming surgery to more than likely put in a graft. I’m okay with needles given all the times in the hospital but I’m not happy with the thought of large bore needles sticking me three times a week. But I’ll have to just deal with it. I want to get rid of this catheter.
The problem with arm catheters is that they take time to get strong. I waited 3 and half months and it was not strong enough. So infiltrating is common. The more you have your fistula used, the stronger it gets. Here it is five weeks into training and now it is not so hard for the nurses to cannulate. As far as needles, I get it. But they have ll kinds of tricks to show you to get over the fear. It does not hurt when it is done right other than the pinch in the beginning when they stick you. But they have creams you can put on and it takes away all feeling from that.
Since there's no needles with the catheter how could they infiltrate? I understand with the fistula/graft how that could happen. I found a really good picture of both and took it in today. I showed the nurse and asked with a graft where do the needles go and how they make sure they aren't using the same spot all the time. One of the guys on the early shift has a graft but I didn't finish early enough to ask and since I was already hooked up couldn't walk down to him.
I feel better today, not so anxious and a little depressed. Maybe cause I got to talk to someone and the 2 guys next to me were laughing and carrying on. They both have fistulas so not so scary. I did have a nurse show me one of the needles and it's definitely bigger than the IV one or the one for blood work. I had both when I was in the hospital in Sept. By the time I went home I was so sick of bloodwork every day. Then they got a hair up their ass and was checking my blood sugar several times a day...I do not have diabetes and my "sugar" was fine.
opps, I meant arm fistulas not catheter. There is no poking with a catheter. They connect to the lines.
So here is the thing about fistulas......again I had to learn this the hard way. Mine was too new. Even though I did exercises, it was weak and narrow, and it curves a lot. As it gets used, the pressure from being on the machine toughens it up. It gets bigger, some very big. The area of where you can canulate get easier as there is more space.
AND there is a technique called Button Hole where they go in the same hole all the time. After a while, it hardens up like earing holes and .... absolutely no pain. You just pick the scab and insert. Do you have earing holes? You do not feel anything when you put earring on. Same deal.
I am not going to do Button holes because I hope to go back to my water aerobics class. They do not want that process because being in the water for an hour can soften the scab and cause infection or worse, bleeding. So I do what is called a ladder. The go up the fistula and let the holes below heal up and then start over. If the pain poking is too much, you put on a numbing cream and viola..... no feeling like Novocain.
So glad it going good for you it been a struggle glad it got figure out and you finally passed. I been in the hospital twice in last month 10/28 I broke my ankle in three places ., and Monday came to er with acute pancreatitis. Still in hospital no fun.
Oh my, I sure hope you get better soon. I spent way too much time in the hospital so I can agree it's no fun. How's the drain pain? That got cleared up didn't it? I sure don't miss that, although freezing some in center sucks. I finally got them to up the temp on the machine and that helps tremendously. My husband also got me a heated blanket and that really helps. It's rechargeable so nice and warm when I need it. I've been putting on a little weight so that helps too.
Get well soon. I'll say some prayers for you. I'll have to tell you all about my Aug hospital stay and now being willing to pray.
Drain pain is getting tolerable. The hospital I’m at right now is the only one around me that uses the machines is why I came here instead of going closer to my house they only do Manual I don’t like that the dialysis team here has to hook you up and unhook and do everything the bad thing is sometimes they start to early they just hook me up at 5 I only do 9 hours they don’t come back until 7:30 and I’m not allowed to unhook myself . It hard going to bathroom hopping on one foot using a Walker and watching your tubing so you don’t trip.
I did the same…hospital is an hour away but the only with machines even if they were Liberty. I was so out of it I couldn’t have done my own treatment.
Dang, you are getting punched right and left. Feel free to whine away on here. We're here to listen. Is your ankle better now? Meaning hopefully it doesn't hurt much.
Ingrates on this news… You’ve been quite the trooper through all of this! And, no, they shouldn’t check labs the week after Thanksgiving. I say don’t worry about the labs and enjoy the day just eating what you would like in moderation. That worked well for my dad while he was in dialysis.
I eat A LOT now on hemo and I try to have protein all I can. I don't have any food or fluid restrictions so I drink a protein shake every day (Nepro before I run out, Kates Farms, Boost-I have very high calorie with 22 grams of protein and Protein and Fiber with 20 grams). I eat an egg with turkey bacon every night. I have shrimp when I can get it, cheeseburgers. I'm kind of sick of chicken. I did find a protein powder made with peas that has 27 grams of protein.
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I may be slow, but I get there eventually. 
Decline test results worried.
