Hemodialysis question

[horsie63]

I did PD from Feb 2023 to July 2023 when it failed and sent me to hospital. In August they put a chest catheter in and I started hemodialysis. After 3 treatments it cleared up the problems I was having on PD.

At first I was doing Tues, Thur, and Sat in center for 3 hours and 15 minutes. My kt/V was in the high 2's low 3's so the dropped my time to 3 hours. Did that until Dec when they dropped my time to 2:45, still T,Th,S in center using the catheter. They don't take any fluid from me either. Had a fistula created Dec 22 but it's not in use yet.

So today at dialysis my nephrologist came along, asked how I was (fine), looked at my labs and said they were all good and did I want to go to only 2 days! I almost fell out of the chair, I thought he was kidding me. But no since my labs continue to be good and I pee (a lot) and feel good I could try just Tues and Sat. As long as I continue to have good labs and feel well I can keep the 2 days schedule.

I'm still working on gaining weight so I can get back on the transplant list. My kidney failure was not an AKI so has anyone heard of this?

[jodaer]

Congrats on going to only 2 days per week. I will think positively that your labs stay good

[Bassetmommer]

YOU made my day, week and month. Everyone keeps telling me that "NO ONE DOES LESS THAN 3DAYS A WEEK FOR 3.5 HOURS, IN CENTER."

I see the doctor tomorrow and I always worry she is going to push for more dialysis. And I know in part if is because billing. But my labs are all about the same or better so I am going to fight to keep my 3days, two hour treatments.

BTW< question for you....What do you do if you have to pee? Do they stop the machine and let you go or can you hold it for that long? I cannot. The treatment is only 2 hours running, but between getting poked and checking pressures and all and the coming off, it is more like 3, especially if there is an issue.

[horsie63 in reply to Bassetmommer]

I had a long post in response but lost it. I have not had to pee yet but I've seen others get up mid treatment to do it and yes they stop the machine and reconnect after. What I've done is pee when I wake up, pee after I eat something and pee just before we leave the house then pee when I'm done. When I started having PD issues I was having problems with bowel movements so I was more worried about that but going before leaving seems to have solved that. Plus they are "firmer". You can show your doc or whoever says you have to do 3 days in center my post. It's possible too that since my center is independent it's not as money driven as Davita or Fresenius. And since it was MY nephrologist and not a nurse or one of the other docs who come by I tend to believe him. I'm keeping in mind I may have to go back to 3 days if I start to feel bad. Hemo is not making me feel bad, just the opposite. I feel like normal.

[Bassetmommer in reply to horsie63]

Thanks again for your reply. In home hemo, you cannot disconnect once on treatment. So that is why I do 2 hours.

I am so happy for you that dialysis is working so well. It brings joy to any who are hoping for a miracle. And you truly deserve it after all you have been through. Wish you could come stay with my family for a week. I would fatten you up.

[horsie63 in reply to Bassetmommer]

You are so very kind, thank you. My biggest reason was when I found out if I had to disconnect it added time to the treatment.

Funny thing was I had never heard of a person in center just doing the 2:45 let alone only 2 days. I had heard of some PD people having huge kt/V scores and dropping days so I was shocked when my neph asked if I want to give it a try. I was just hoping to go to 2:30 if my labs were good enough. I thought they'd be not so spectacular as I pretty much eat and drink what I want. I even have some Coke now and again. Bless my kidneys for staying on the job...lol.

If you live close enough I may take you up on that.

[bestmom247 in reply to horsie63]

I do 2.5 hours Mon and Fri. Started at 3.75 hours 3X a week MWF.

[drmind]

Hallelujah! What a nice gift for the new year. Praying for continued new labs.

[horsie63 in reply to drmind]

Thank you, it was totally unexpected. I've just been praying for some weight gain...lol

[bestmom247]

I have been on dialysis for over 3 years and had to be g my doctor and go AMA (thereby being put in active on transplant list) to get the two days a week. Be thakful your Doc is so attentive to your needs. BTW, I still use a catheter, rfuse to get a fistula. Good luck and God speed.

[horsie63]

I wasn't and still aren't thrilled to go the fistula route but after the 2 months in the hospital in Aug and Sept when PD failed I do NOT want to go back there again, especially if I'm unlucky enough to get an infection that goes to my heart. I've worked really hard to get where I am today. When I got really sick I called the transplant center and had them put me inactive. I didn't want to be as sick as I was (almost died) and hold up someone else from getting a transplant.

[RonZone in reply to horsie63]

Wow, not only are you a trooper, but have a huge heart for others as well. Very impressed with your progress and thankful your natural kidneys still have some mileage in them! Keep the posts coming, they are awesome in their details of reality and in their inspiration.

[horsie63 in reply to RonZone]

Ron you are so kind, thank you. I know a lot of people think in center hemo dialysis is the worst of the worst but that has been my experience. I try and greet the people I see with a smile and a hello and I talk to the ladies on both sides of me. I thank the nurses for caring for me. I think that's the least I can do as I know it can't be easy.

I still can't believe my neph said two days...I'm sure I'll get up tomorrow and get ready to go in, I'll see what next month's labs look like before I believe it's true.

My neph also suggested I contact the transplant center to update them so I did and god be blessed I go Mar 21st to reevaluate whether I can be reactivated. I think Feb is now going to be my New Year. Last year in Feb I started PD with the thought I'd do that, continue working and then get a transplant. Last thing I wanted was #1 to do hemo and #2 get a fistula but here I am. I do feel great and it was 3 days for 2:45 and not every night for 7 hours.