Questions regarding dialysis and also transplant

[Missingthesun]

Hi Everyone, Hope everyone is ok with all the crazy weather that has taken place all over. I recently started hemodialysis in the last week. Once again I have had to learn everything from you all or reading online/or in books which is not overly helpful at times. The dialysis center folks think my nephrologist or transplant team would have educated me on what to expect on dialysis um NO! Some are explaining a little by little but can anyone share their experience on hemo or PD? I got sick on the last session there at the clinic. I was mortified but they handled it well. Will this really get easier? I am still urinating and expecting me to hold my urine for 4 hours among other things I am feeling is Ungodly ha ha.. trying to have some sense of humor through this mess. I can't talk to anyone at the center as we are separated by dividers. I checked into local support groups. It's a no go! Also are any of you finding the transplant team avoiding to talk to you if you have a question? I know how busy everyone is but it was he'll even getting appointments lined up was no joke. They said they listed me in April and I haven't seen anything confirming this. So sorry for the long paragraph. I appreciate your help! Thank you 😊.

[Bassetmommer]

Wow, so much there in your post. About urinating. In Center, they can stop the machine, let you go potty and rehook you. Can't do that at home hemo. I know the feeling, and it is terrible when you have to go. Make sure you let the Doctor know you need to pee and have it in your treatment plan. You want to keep residual kidney function and no UTIs.

When you got sick, how did you mean? Like barfing or passing out. That usually is an indicator that they are taking out too much fluid. Do you know what they are removing? Do you get cramps also..... another indicator they are taking too much fluid. It is miserable and they can lower the amount they remove so you do not have to suffer.

Learn what your numbers mean. Do you know what you kt/v is for example. That is your clearance/adequacy or how well dialysis is working. Most places want a kt/v of 1.2 to 2.4 or more. That says your dialysis is doing what it should. If you are still urinating, that should be adding in to calculate your kt/v.

There is a great peer mentor program with the National Kidney Foundation. They will pair you up with someone who has experience and they an help you learn about what you are going through. Plus, it is good to have someone to talk to. kidney.org/peers

[Missingthesun in reply to Bassetmommer]

Thank you for replying. I apologize I should keep my post simple and short. I sent my MD a message today regarding I can't hold my urine that long etc. I was vomiting/dry heeving on Saturday and it was not good. I got scared and I think I kinda got the gal taken care of me concerned. She ender up handling everything well. I will see what my MD says. I do experience a horrible headache right away. I also get the leg cramps but I do get those really bad at home too. I get restless leg really bad in general too. My Kt/v was 1.6 on Saturday. Do things really start ti get easier? I keep hearing that. I know your extremely tired after hemo. Did you do hemo or PD? Thank you for the info also!

[Bassetmommer in reply to Missingthesun]

I do home hemo. The leg cramps are something. I was having them all the time, dialysis days and not. I added fluid to my treatment since my dry weight is pretty stable and the cramps subsided, for the most part. They are not totally gone. I have a mentor who has been on dialysis for over 26 years and she still get them. The are a rotten part of the deal. The dialysis is taking out all sorts of electrolytes and it takes a long time for the body to be ok with it. Another goo Facebook group is I Hate Dialysis. You get a real good look at home hemo and incenter.

[Beachgirl32 in reply to Bassetmommer]

I’m not on he no I’m on pd you can have problems with both. I was getting bad cramps where I literally cry and couldn’t stand it has taken them awhile to get the right dialysis for me. I have fell the last two kt/v test I use to pass it in pad it has to be 1.7 or higher . I know in pd we go and see the pd nurse once a month for labs and the kidney doctor bonce a month for clinic and anytime we have problems we can get in touch with the of nurses.?I see doctor today I have to bring in stuff for the kt/v today we have to bring in our drain bag and 24 hour urine unfortunately I hardly make urine now I was making it fine until January where I wasn having constant uti for months I finally think they have a handle on that .your social worker at your center can find out for you if transplant team sent a letter she is there for you to use use her or him for any questions

[TomMilds in reply to Bassetmommer]

Hi, Missingthesun

Hemodialysis on its early stages is pretty instable thing. Your body need to get used to it. For example, I suffered from high blood pressure during 2 months from the very first procedure. Within first year patients are faces with some side effects of dialysis which is individual for everyone. As others wrote above, you need closely observe your numbers like Kt/V, dry weight, phosphorus, potassium. If your treatment carrier is Fresenius Nephrocare - they got a pretty good app for iOS (My Companion) which shows info about every procedure, resulsts after blood tests and prescriptions. With time things are getting better, it's true.

Wish luck for you.

[bumblebee_tuna]

You should be getting a letter from the transplant center confirming that you are listed, if you haven’t gotten one in a week or two I would call in and find out.

You mention restless legs, if you have RLS there is a very active group here on this website with a lot of good information and great support.

[Missingthesun in reply to bumblebee_tuna]

Oh okay I thought so. My insurance case manager said they did approve me but the transplant team has been something else. I left them another message last week. Oh wow that is so wonderful! I would love that. Thank you so much 💓.

[horsie63]

wow you’ve said a lot. I started with PD but it failed and now I do in center hemo. I have them turn the machine towards me so I can see my BP but also iow much fluid.

When I start I asked about everything and I watch what they do

. There is a book by Steve Belcher….the kidney nurse I would recommend. Also if you are on Facebook there’s a site called Living! on dialysis.

As for transplant centers they are all different mine sent me a letter when I first went active.

You can click on the person’s name and read their post history.keep in mind everyone’s experience is different.