I’ve been here since Tuesday because I have this uncontrollable shaking/tremors. Happy to say that dialysis here follows protocol but with a liberty cycler. They have run a bunch of tests but no answer. They even did 5 cycles.
I’m hospital : I’ve been here since Tuesday... - Kidney Dialysis
I’m hospital
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horsie63
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sorry to hear you are in the host hope they find the cause. Last time I was in told me I had an infection but couldn’t figure out what it was from so hope you don’t follow suit . Good your hospital has a cyler the one I went to did not so it was manual through the day. I think the others hospital around here have the cyler .Prayers lifted all will be ok with you. Keep us posted.
hopefully this med will help
So, when you were in the hospital with the infection, so they couldn't figure out if the infection was from the dialysis procedure vs some other source? Was the infection in your peritoneum? Just interested. I"m just waiting for the day I give myself an infection somehow. I know it will happen.
No peritoneum not related to dialysis I’m always a hard case my daughter said when they say 1 in 100 people this will happen too I’m usually the one. I been in hospital many times when they couldn’t figure out infection even before dialysis. Last time they just said strange virus . I do think when I wasn’t getting enough dialysis it made me weaker easier to catch something. Now I feel great hoping Horsie feel great soon.
Ahh ok, so not dialysis related. That's a good thing, well not good, but good that it's not dialysis related. Makes sense that when your kidney's weren't getting the job done it reduced your ability to fight off stuff. Hopefully you will not get those as often now that you are on dialysis. Really glad you're feeling better! So do you still have issues with drain pain?
sometimes drain pain but nowhere like it was I can tolerate it now and if it get that super bag I have learn to bypass usually I’m about empty if it get that bad .
Really glad you've got that mostly under control and know of workarounds when it happens. Workarounds are becoming a very important feature of dialysis it seems.
Oh no, sorry to hear this. I'm sending lots of healing and positive energy your way. Let us know how you are doing when you can
still with the tremors but hopefully get to go home
Did they rule out severe case of RLS? I'm an expert on the subject by now ...
no idea why. They do dd a lo the brain tests and now I’m taking requp.
Oh my gosh! Wow. When it rains it pours. REALLY hope they get this figured out, keep the posts coming so we know how you are doing. And especially let us know if they think it's dialysis related. Inquiring minds want to know! So do you operate the liberty cycler? Or do the nurses hook you up and handle everything? How is it different from your Baxter machine? Write just when you feel like it.
Sorry to hear you're in the hospital. Gosh, you've havings some bad times. Prayers and positive thoughts to get better soon.
Hi horsie63, I hope you are feeling better. I’m sorry you have to go through this, have you talked to your doctor about your UF (ultrafiltration)?, have you seen high numbers?, could those symptoms be related to an excessive or aggressive ultrafiltration?, I know there’s something called “Dialysis Disequilibrium”, and some of the symptoms are like the ones you are describing. I hope your medical team can get under control what you have soon, we are keeping you in our thoughts, we wish you a speedy recovery, keep us posted, we all are here for you 
Hello Horsie! I am sorry to learn that you are in hospital and dealing with tremors. I will keep you in prayer. Best wishes!😊
Ugh! So sorry Horsie. Praying they figure out what’s going on and all is better soon❤️
thank you all
Oh man. Will be thinking of you! Once the docs figure it out, let us know what happened if you feel comfortable doing so.
Jeepers, it is quite a journey. Not knowing what causes us to get sick is more frustrating than knowing. I hope you feel better soon. Sending healing energy
Get better soon !
KidneyCoachNKF Ambassador
I had similar problems years ago while on manual pd. They did continuous 36 hr pd. Decided my peritoneum wasn't filtering at all. They didn't adjust my meds and continued with my gabapentin which ended up as an overdosing. Caused me to have uncontrollable jitters, shaking. I was the one for figure it out. When I presented at ER most labs were all whacked with my Creatinine at 17. After my 36 hr continuous pd it jumped to 27. After 4 hours of Hemo it dropped down to around 15 other labs were near normal limits. Adjusting the gabapentin meds really helped. Hoping your issues are easily and quickly resolved. Blessings.
I am so glad your hospital has a cycler! Every time I end up in the hospital, they ask me to bring my cycler and all the supplies to my room (once I finally get out of the ER). They have no access to dialysis supplies somehow. I really feel that every hospital NEEDS to be equipped with the ability to give dialysis! I hope they determine the source of your tremors soon so that they can be treated. Sending healing thoughts ❤️
some time ago I asked my nurse which hospital to go to for dialysis
I'm going to do that too. I hope you are doing better!
not even a little but I hope to see a neurologist soon.
Are you still on PD?
Yes. I missed 2 treatments in a row because I needed to get someone to bring my machine to the hospital but I am still on PD. I may have a living donor though! I don't want to jinx it but I am getting evaluated by the hospital they are close to (it closer to me than where I'm listed now, at U of Penn). So fingers crossed! Hope you are doing well.
Hey, definitely keeping my fingers crossed for you! I'm doing just fine I'm happy to report.
Any new news on getting a kidney? You are in my prayers!
I have a potential living donor! She wants to work through the transplant center closer to her so I am going through the evaluation process with them now. Since I am already also listed with Penn, it should be a faster process. So there is the possibility that I will start 2024 with a healthy new kidney! Thank you for keeping me in your prayers. It means a lot to me!
They are ttying Valproic v Acid now with no effect . I still twitch like a fish on a hot plate.
Ugh! I really hope there's time for it to still kick in and solve the problem! If not, I hope you'll be given the next thing - whatever that may be. Keep the faith. Sending many hugs and positive vibes your way.
I’m home still doing hemo but at my local center.
When I can I’ll write up my adventure.
You're BACK!!! I'm sooo glad to hear from you again! This entire community, I'm sure, is wondering what happened to you! Yes, definitely let us know about your adventure...I'm sure your experiences will be invaluable - very educational - for everyone. Keep on, keeping on, Horsie63. May the upcoming days smile on you!
How you doing? Any better? Sure hope so!
No better
Doing much better. Seems my body prefers HD rather than PD. My rash cleared up, no more tremors and my appetite is back.
Really glad to hear you are doing better! Hey, it is what it is with all of this. Like others have said, just when you feel up to it, do a new post that catches everyone up on your experience and what your new plans look like going forward. Like having fistula surgery etc.
Did you get a temporary access in you chest then?
Yes not sure how temporary. Trying to decide whether to try PD again but the experience was pretty bad. If I stay on hemo I’ll get a graft as my veins are tiny.
I'm doing great on manuals, why not give CAPD a try?
I started on manuals and did okay so if I go back it will be manual.
You do not have to get the graft (fistula) you c an get and use a permanent port for HD. I know, I have one and I have NO INTENTIONS of getting a fistula. A fistula has to be check every 3 months (another doctor visit). You can do HD at home as long as there is someone living with you. They say I can do it at home, but I live alone and worry about the what ifs.
bestmom247, I applaud your tenacity and being an advocate for yourself, you know what you want and you are making it work (taking extreme precaution with the port). But, I don't think this is something we should be recommending others to follow, it is known to be a lot more risky (you know that), and the statistics are, that often a long use of port leads to very dangerous complications.
I’m back for surgery to put in a hemo port tomorrow. Really hoping it helps like B everyone says w wil.
good luck horsie63 , lets hope it helps and for you having a quick recovery!
so part 1 of my adventure:
I started PD in Feb 2023 and at first it went well. I started with manuals until I got my Claria first of April. Again every thing was going well. I felt good even traveled for work. And then the wheels came off. I first developed a very very itchy rash all over my body. Was waiting on referral to dermatologist. Before I could get one I developed what I call “the shakes”.
Those led me to falling. During this I lost my appetite and basically stopped eating when I had trouble swallowing solid food. I was drinking protein shakes.
In July I fell and hit my head on the floor so hospital trip one.
….Continued in Part two.
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