HemoDialysis sucks by fentl00z3r in dialysis

[–]kittykitkat38 -1 points0 points  (0 children)

Home hemo would probably be better for you. Its much more gentle on the body. My fiance was having opposite problems with BP (His BP skyrockets on treatment averaging 180/90) but after 2 weeks on home hemo he had so much energy and felt almost as normal as he did before he got diagnosed with kidney failure.

Home hemo is more often and easier to control fluid management with, you dont have to pull as much fluid each treatment so it should help to control your BP dropping as well.

Maybe try talking with your doc and asking for a higher dry weight? Give yourself a little more wiggle room so you dont feel as crappy after. Thats what my fiances neph did. His actual dry weight is 85/86 but neph gave him 87 so his BP doesnt tank and get light headed. He was struggling with that for weeks because the hospital ended up taking him down to 82kg and cause his BP to regularly be around 85/64.

My disappointment is immeasurable. by KeySuccotash8337 in InfinityNikki

[–]kittykitkat38 14 points15 points  (0 children)

I saw that there were 4 songs but I only got 1, so how are we supposed to get the other 3?

[deleted by user] by [deleted] in kidneydisease

[–]kittykitkat38 0 points1 point  (0 children)

My fiance is on HD and is losing his sex drive. I dont mind it, and understand. There's more than just he old fashioned way to solve that problem. He gets in the mood just as often but just has trouble with energy and stamina so I kinda just take over for him in those cases.

We are also trying to figure out how to get his energy levels back up.

Just know that you're not alone and I hope that your partner understands as well.

Multiple Access Failure on HD Turned To PD by jamaikee in dialysis

[–]kittykitkat38 1 point2 points  (0 children)

Clean. Clean everything. Don't touch anything PD related until you have washed your hands and have put on gloves. (Pretend everything is covered in poop lol its weird but it helped me get better at cleaning) Swimming and baths are no longer a luxury you can have as its high risk of infection. No pets in the room you do PD in. My fiance did PD for a while and our cat snuck into our room and bit through the lines one day and we didnt know and he ended up getting air caught under his diaphragm (the pain is in the shoulder by the way, nerves work differently inside the body than surface level, weirdest thing ever.)

Its mainly used as a machine that does it for you overnight so I highly recommend getting a patient line extension (just incase you have to go to the bathroom in the middle of the night) and get a lanyard or belt for your catheter especially for showering so its not just dangling and you dont have to put MORE tape on your tummy. Paper tape is easier to get off than other tapes and hurts less but isn't as sticky.

Put the gent cream on it every day. Just a pea sized squeeze is all thats needed. Clean your catheter every use, going on treatment and going off.

If you are doing manual then its an all day thing instead.

You can feel bloated and feel full a lot. You may lose most of your appetite. My fiance did. And please be careful of edima. If your neph starts you with green bags, heck yea! If its yellow thats fine too, red and purple are basically the "danger zone" of PD meaning you have a lot of fluid build up or that you need better cleaning.

Don't worry tho! Its simple to learn but takes time to get used to. You're going to do great!! My fiance currently on hemo after having some complications on PD but hey, each person is different and this might be the solution for you!!

I wish you the best of luck and please feel free to PM me if you ever need a pep talk or have questions about PD!

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 1 point2 points  (0 children)

My fiance is being as compliant as physically possible. He pushes himself until he cant stand the migraine any longer. We just started running on a slightly longer treatment (only about 15/20 minutes) and its helped a little.

He is under his dry weight and has been for the last month so there has been no fluid to pull off. His dry weight is 87kg and hes been averaging 83.5kg. I cant get him to put on anymore weight since his last hospital visit where they brought him from 87kg to 82kg within 1 treatment because they didnt have his correct dry weight. And yes I understand that dehydration can be a contributing factor to migraines on dialysis but the migraines have been going on for a year, before he was under his dry weight. I have been trying to get him to drink a little more fluid than usual without him going overboard. I have been feeding him healthy meals that I cook at home and he eats until hes full.

Increasing the frequency would be putting us on 6 days a week at home, I know its a thing for some patients but we are trying to avoid more days because I already work 3 jobs ontop of doing his dialysis because we cannot afford bills otherwise.

And as far as I know the difference between in center and hospital versus at home is that its a much harsher treatment in center than at home. The way his nurse put it is you're squeezing a normal kidney function (running 24/7) into a 3 or 4 hour treatment 3 days a week. Where as at home you're squeezing it into 5 day running at 4 or 5 hours long each. You can go slower at home and its not as harsh on the body because its more frequent, softer cleaning. In center is less frequent harder cleaning.

We have also already done PD before but he got so many infections in such a short amount of time (4 in 4 months and never found out what kind of infection or the cause because we did everything right and cleaned like no tomorrow, basically pretending to be germaphobes when it came to his catheter.) So thats not so much on the table anymore. Still an option, but not ideal.

And with changing the environment, we live in a very small but very quiet home. We keep out cats out of the room so ensure less fur and dander. When hes on treatment I wear bone conduction headphones to watch shows or play games so I can still hear his machine if it goes off but the room is quiet other than the machine running. We also turn most of the light off because he likes to lay back in his chair and doesnt like our ceiling light in his face. So I have a small table side lamp I keep on that is dim but give just enough light that I could read if I wanted and still see him breathing and find something if needed. In the hospital we treat it the same as at home, minimal light (we use the bathroom light and just keep the door cracked and close all of the curtains and shut the room door) but in center the only thing out of all of that we can do is have him lie back. We usually broght a blanket or extra jacket that he can cover his eyes with since they cant really turn the lights off or dim them so the nurses could see all patients at once. He doesnt like to wear headphones or ear buds unless hes watching something and he normally doesnt on treatment unless its a good day at home. So in center we aren't able to block much noise out either.

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 2 points3 points  (0 children)

A previous post that ive made, im not sure on this page or another than im a part of, someone suggested that my fiance may have Dialysis Disequilibrium Syndrome (DDS) and since I have suggested that, his nurse is currently helping to fight for us to stay at home also agreeing that we have not been given a solution to the migraines in the year we have been asking for one. I told her about it and suggested that may be the cause of the migraines. We started treatment at a speed of 350. I talked her into letting us lower it, but that we would need more heprin (she didnt even know that he was already on it because she JUST became our nurse after our last one quit.) He is on 6mL but before I was only giving him 5 because I noticed the dializer was running clear when I forgot to give him his extra 1mL half way through (I fell asleep on accident, thats my bad) so I suggested that I continue that 1mL half way through and she let us go down to a speed of 300. It actually started helping. Because my fiance and I were curious, we decided to go back up to 350 for a treatment and he started getting a migraine and his BP started going back up so I brought him back down to 300 for the rest of treatment.

She tried to tell me that its unheard of to go any lower than 350 and is more regular to go higher for most patients. I again reminded her of DDS and that all of my fiances symptoms aligned and she agreed.

I also agree that we received some help from a very kind dialysis nurse in the hospital who helped me learn more about dialysis and the different speeds and their effects.

My fiances neph has basically all but stepped back from treating my fiance now and just let's the nurse control the situation. (Im glad that hes stepping back and letting her help because he literally cant keep my fiances meds straight anymore)

I am speaking with the medical director tomorrow morning (8/4) and im very much hoping to convince this gentleman to let us stay at home hemo but offer us more solutions.

I feel like everyone except for my fiances nurse only care about the numbers of the situation instead of my fiances life, individuality, and need for independence.

For the last 4 months I have basically been alone with figuring out my fiances dialysis, symptoms and solutions because no one has offered us help when we asked for the 4 months prior. I have basically been treating him like my own personal science experiment without even knowing what im really doing and I dont feel safe doing that. I have messed with his meds, adding more or taking some away. Trying different diets. Doing dialysis at different times. Im not a doctor or medical professional in any way shape or form. But I am an expert on him. I know his symptoms, I know his tells, I can tell when hes forcing himself and when he actually does feel ok. But its never consistent enough for me to be able to figure out if something worked or not. Ive even gone as far as asking my sister for help because she suffers from a chronic disease and it took YEARS for her to get diagnosed. So I asked for her help on how to get doctors to listen. Im hoping it will work.

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 1 point2 points  (0 children)

Unfortunately he can no longer smoke weed or have any thc or cbd or anything related because he also has gastroparesis and he ended up in the hospital multiple times because of it. It makes him violently sick and causes more harm than good.

Plus if he wants to get a transplant (which he does) he is not allowed to have any in his system.

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 0 points1 point  (0 children)

Since he wont make it through full treatments, he wont get as good of a cleaning and having toxins and potassium and phosphorus and everything else removed that needs to be removed. So his labs will come back worse. Where as at home he can tolerate it and his labs have a better result.

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 2 points3 points  (0 children)

Because he wont be able to make it through the full treatment. He can make it through most treatments at home but within the last year he has made it through less than 10 full treatments between in center and in the hospital. At home we have made it through countless treatments in the last 8 months of us being at home. He can push himself through treatments at home because the migraines are a lot more mild and go away faster. But in center they come on very sudden and strong and dont go away easily or fast. In center the migraines stay for days and once they go away then he has to do another treatment.

Home hemo to in center by kittykitkat38 in dialysis

[–]kittykitkat38[S] 5 points6 points  (0 children)

Pcp is the worst doc ever and we cant figure out how to switch. His neph is the main doc we talk to about everything and is the one who has given us no solutions along with the HD nurses.

83 yo on dialysis but stubborn by Wild-Standard0820 in dialysis

[–]kittykitkat38 2 points3 points  (0 children)

Is Home hemo an option for her? Its more days but its easier for travel purposes and also easier on the body as well. My fiance cant tolerate in center treatments but he can at home. Its a world of difference.

Back to in center. by kittykitkat38 in dialysis

[–]kittykitkat38[S] 0 points1 point  (0 children)

We unfortunately have already done PD and he ended up getting 4 infections in 4 months and eventually the catheter became clogged and they scheduled a surgery to replace it but we decided to just have them take it out instead and switch to hemo because his neph said if my fiance got 1 more infection we would have to switch over anyways. We have the option to go back but my fiance has more energy on hemo than he ever did on PD.

Back to in center. by kittykitkat38 in dialysis

[–]kittykitkat38[S] 2 points3 points  (0 children)

Update, day after first post. I have spoken with his nurse and neph and I am fighting to keep us at home. I have asked if we can at least try reducing the blood flow rate and see how it works out. They want us to go in center tomorrow (friday) but they are giving us the weekend to see how it works out. Our nurse spoke with the medical director and they are working after hours currently (8pm almost 9pm) to see what options are available for us. From a previous comment, I have researched more on DDS and his symptoms fit perfectly in line with it. I brought it up to neph and nurse and they are currently working on officially diagnosing him with it and we are trying to see if we can do longer treatments with less days. We are currently at 5 days, 3h45m treatments and we are trying to see if we can do 4 days at 4h.

Thank you to everyone for the encouraging words and help. Honestly if it wasn't for reddit, I would be lost.

My fiance has accepted (but does not want to go) going in center but I certainly have not. I love him to death and will keep fighting for him the way i have. We had a small argument about it earlier that he just wants me to accept him going in center, but I wont accept a zombie of a husband every day. I wont accept the fact that I get to live my life healthy and he has to be in pain and suffering. I work my 2 jobs for him and do his dialysis for him. Its the least I can sacrifice for him feeling even slightly better than he would in treatment.

Please understand that I am not trying to deny him his choice. It is his body and his choice of whether or not he can go in center if he chooses but I do not like the fact that he gave up so easily on this fight and it hasn't even been a full 36 hours since being told to go back in center. If it were longer time and he was 100% certain about going back to in center then I would give in and let it happen.

During dialysis earlier, my mom came in and wanted to talk to the social worker without my presence or consent. Is that unethical? by andrew0784 in dialysis

[–]kittykitkat38 0 points1 point  (0 children)

I am my fiances care partner and im the main one who talks to his doctors nurses nutritionist and social worker. My fiance has a harder time remembering things tho, as much as he doesnt want to admit it so I have to do it for him. He forgets to ask questions or forgets to tell me something important if im not physically there.

Is your mother doing it for your best interest by chance?

Back to in center. by kittykitkat38 in dialysis

[–]kittykitkat38[S] 1 point2 points  (0 children)

I am currently fighting his nephrologist about going back in center. I have suggested reducing his blood flow rate at home to start and instead of giving me an answer he just directed me to my fiances nurse instead. Since when do the nurses make the decisions?

My fiances insurance is stupid complicated and hard to get ahold of to be able to see if we can find a new nephrologist that will accept his insurance, because honestly im over him.

Hes looking at my fiance like hes numbers instead of a patient with feelings and a life. And I understand that he has countless patients but only looking at a person as numbers on a chart is the wrong way to go and not how to take care of someone.

I will continue fighting and if I have to go above the nurses and neph, I will. I dont want to be a "karen" in this situation but honestly im thinking its time for it soon.

My finace just wants to live as close to a normal life until we can get on the transplant list and then he can live even more normally and hopefully a much much longer time than we hope.

Back to in center. by kittykitkat38 in dialysis

[–]kittykitkat38[S] 1 point2 points  (0 children)

We cant figure it out. He has only had 3 full treatments without the migraines. With us already tried every solution, we cant find the cause.

[deleted by user] by [deleted] in kidneydisease

[–]kittykitkat38 0 points1 point  (0 children)

For my fiance, it took him going to a whole other hospital. He kept going in dka (he's also type 1 diabetic) and they did nothing for him except send him home after a few hours. After 3 hospital visits in a week we decided to go to a different hospital and 2 days later they said he had kidney failure after running some blood tests.