Hemodialysis

[SadMad]

Does hemodialysis get better eventually? I have been doing since 07/13/2020 and still have emotional and physical problems. I am so tired afterwards but can't rest and end up crying from frustration I guess. Still got to do 3 things to get on Transplant list supposedly, it changes every month. Thank you. Sorry I haven't been on in awhile. Since July have had 4 surgeries plus AVG declotting procedure. Got aporoved for disability and medicare. Forced to retire from a company I had worked for for 30 years. Still weigh a ton and knees are shot. Swimming at local YMCA and using a walker or rollator to get around.

[Jayhawker]

vriggin24,

First, it’s clear that you haven’t had a good experience with HD dialysis. Hopefully others who are currently using HD will log in to share ideas they’ve learned while using HD.

I’ve been through the seemingly unending round of tests to determine transplant eligibility. I definitely remember how exhausted I was as I completed those tests. I was so relieved when I was done with them. I know that they sometimes have to do additional testing based on results from various tests as they come in. It is exhausting... But there is an end. I kept telling myself that I wanted the results whether I qualified or not. I wanted a clear understanding of my overall medical health. I knew all the testing would provide that clarity.

I can also relate on some level to your comments about exercise. I had an extreme case of vitamin D toxicity which lasted for many months before they tested for it. It was at least 4x higher than the upper end of the average range when they tested for it. I was really sick and extremely weak. I’m feeling much better now. But I’m still very weak.

So, I’m working to regain strength. This is truly a mind over body situation. I started out very slowly. I walked 10 minutes a day. A very slow pace with a cane. I’ve increased my walking each week. The goal is to walk daily no matter how I feel. I increase my time by a few minutes each week. I also have a recumbent elliptical machine. I’ve done the same thing with that.

Now, 4 weeks after I started this program, I’m walking 20 continuous minutes daily. I also do 2 12-minute sessions on my elliptical machine daily. These are both very low intensity. But I’m making progress each week. This is definitely pretty slow. I’m charting my progress daily so I can see how I’m doing.

I’m actively waitlisted for a kidney. I’m between 1 and 1.5 years away from getting a call for a deceased donor kidney according to my transplant team. Thus, I want to regain my strength!! So, it’s slow and steady for me. At the end of each month I do something I really enjoy to celebrate the improvements I’ve made that month. (February will be an inside flower bulb garden.)

Please talk with the dialysis center about what you’re experiencing. They should be able to help. I know I have to work to be sure I’m eating enough protein on a daily basis... Then identify what you can do for exercise. Start small. Strive for consistency. And gradually increase it weekly. In a few months you’ll be in a much better place.

Wishing you nothing but the best.

Jayhawker

[SadMad in reply to Jayhawker]

Thank you Jay.🙂🙂🙂

[Carillon]

Hemo is a never ending pain. It is painless but causes overall body pain. The speed they take out your blood determines how sick you will be later and this depends on how much water you have between sessions. The best way to help yourself is to limit the intake of all liquids even those in 'pouring' foods like yogurt and applesauce. Hemo keeps you alive but you are tied to a machine to keep you alive. Without it you would die in a matter of weeks, and thats an option some take.There is no easy answer or way to minimize the effects. I find it horrible. The science for dialysis is pittifully low as there are few options being researched in a serious manner. Even the "portable" depends on removing blood. The best option will be a synthetic kidney but that's low on the list so long as kidney dialysis companies run the treatment.

[Alex9679 in reply to Carillon]

I spoke to the professor at the university developing the artificial kidney last year. He said they were two years away from human trials. Let's hope for the best and hope next year will be our year.

[Jayhawker in reply to Alex9679]

I’ve watched this research project for the past 10 years. They’ve said for several years that they would be running human subject trials within two years. They have consistently run into funding issues so are unable to meet their deadlines. They’ve also had some technical issues (e,g,, blood clotting) that have to be permanently resolved before they can initiate human trials. Then I believe COVID interrupted their pilot plans last year. Did the person you talked with speak to any of these issues?

Jayhawker

[SadMad in reply to Carillon]

I talked to my doctor and took antianxiety pill before and after yesterday and got to sleep much easier with periods of crying. Hope this continues.

[cs65 NKF Ambassador]

Hi vriggin24, I would try talking to your renal dietitian and your nephrologist and your social worker for help with all you're dealing with. You have clearly been through a lot recently which all causes stress. You should give yourself a break and use stress reducing options like meditation and deep breathing. The good things you are already doing are swimming ( a non weight bearing exercise) and using aids for walking (did you have physical therapy following any of your surgeries, that can help a lot). I was on dialysis for 4 years and recently had a transplant. Before that I had a partial hip replacement following a fall and broken femur, so I went through PT and OT at a nursing home as well as at home. It can take quite a while to feel better, but I'm starting to feel more normal and still use my rollator to carry things and get around in the morning. Take care!

[TaffyTwoshoes27]

How old are you? Were there other modalities of dialysis explored by your Nephrologist?I’m on PD and I rarely feel as you described. Granted, I’m on the home PD cycler 7 days/week, 10 hrs/day (at night).

Some areas of the country have workable transplants wait times. Unfortunately, I live near Atl, GA and the wait times are ridiculously long: 10 yrs on dialysis. I will be 70/71 before I will get called for a deceased kidney....unless God steps in while I am still holding on to decent labs. It is constant work to eat right and stay away from foods and substances that are detrimental to my physical and mental health.

I will be my two-year re-evaluated for transplant this May. This is my 3rd re-evaluation. As you may know, the Transplant Team places a very high standard for your physical AND mental health. You must be compliant with their “rules” for staying waitlisted or they will deny your request.

I had both hips completely replaced and with little rehab did well. The orthopedist did an excellent job!

I agree that you may want to talk to your clinic resources or even your transplant team.

My biggest lesson thru this kidney journey is that you have to be your own best advocate. Research; talk to your team; and by all means reach out to this group for support,

Hang in there. My transplant SW recommended I talk to a counselor on a regular basis. The Transplant team is not happy with people who have depression.

[SadMad in reply to TaffyTwoshoes27]

I will be 57 in May. I think a lot of my anxiety and feeling yucky was coming from a phosphate binder started this month. I have stopped that drug which cost me over $110. I just have to find my groove as far as diet and medication. Prays for you. Our wait time once approved is 3 to 5 years. I just have to have 2 exams and see a pulmonologist with the results of one exam. How often do you have to be re-evaluated?

[SadMad in reply to SadMad]

I am not depressed, just anxious a lot. I have a counseler on a regular basis. I am just sensitive to certain drugs. One drug I was started on for knee pain caused so much more pain that I had to have a crutch to walk. 🙏🏻🙏🏻🙏🏻

[TaffyTwoshoes27 in reply to SadMad]

Every 2 yrs.Phosphorus binders are b*tch! They are important, so tell your Neph that you quit. They cause me terrible constipation. I realized chewing them (Fosrenol) with food in my mouth helps with the chalkiness and taste. Those shld be taken when you have a little food in your stomach first (not on empty stomach).

I am on an Indigent Waiver with my dialysis clinic (FMC) and they put my treatment meds on Part B. The IW absorbs the co-pay. Talk to your clinic's social worker if the finances are high. Also, ask Neph for samples of new meds they prescribe and try them before putting out cash. Just a tip.

I was diagnosed with CKD at 57 years old. On dialysis at 60.

[Jayhawker in reply to TaffyTwoshoes27]

I’ve been actively waitlisted 14 months at this point. I just talked with the transplant center yesterday seeking some clarification on some testing confusion. It’s sounding as though they’re calculating from the date I had the original testing completed rather than the date I was waitlisted when determining what tests I need done. So, the initial transplant evaluation tests occurred over 3 months (Aug-Oct) of 2019. I was surprised that they’re requiring a test repeated now that isn’t required until I’m 2 years into all of this. They’re considering me 2 years in as of July 2021.

Very confusing. Anyway, I’ve scheduled the tests and will get them done asap. I’m hoping I’ll remain healthy enough for the transplsnt until the deceased donor kidney comes. They told me initially that my wait time would be 2 to 2.5 years... But I’m still recovering from the severe vitamin D toxicity episode and so am quite weak...UGH I’m working on regaining my strength... Still not on dialysis. Still working full time. I’m about 3 years from my planned retirement date.

Jayhawker

[TaffyTwoshoes27 in reply to Jayhawker]

That sounds good Jayhawker. Unfortunately, I found out that my transplant hospital goes by the date I started dialysis and not the date that I was accepted to the waitlist for waitlist expectations. I was approved for the waitlist in 2015 but they are going by 2016 when I started dialysis.The good news is I was contacted by Emory University last week because I had started my transplant evaluation there and had a PCP associated with Emory for 5 years, and they called me to make an appointment for the Covid vaccine. I get the first Covid vaccine today.

[SadMad in reply to TaffyTwoshoes27]

I chose HD. PD didn't allow me to be able to enjoy my pool in the summers. Plus have big dogs that shed and I just didn't want to be tied to another machine every night. I am already on a CPAP machine at night. I also can't afford to gain any more weight. I gained a ton 8 months after stopping smoking. I feel like starting again. I have never weighed this much. 😒😒😒

[mingmiley in reply to TaffyTwoshoes27]

iIhadmentalconditionbefore,nowiamcuredbecausenowItakerisperodol,butknowinganti-rejectiondrugscanmakemyemotionalstateweaker,Iamafraidtogoinsecondtransplant.srryforthenospaceinbetween,mycomputermessedup.Sorry.

[SadMad]

I have been doing the evaluation testing since 12/14/2019. I guess extended because of Covid and stuff found on tests requiring more tests. My life has gotten so much worse since starting the whole evaluation. Taking out my kidney because they thought I had RCC and was just cysts still pisses me off as I wouldn't have had to start dialysis for years. I don't trust them and hope to transfer to a better transplant hospital when evaluation is finally comolete and I am on the list.

[Jayhawker in reply to SadMad]

I was definitely nervous as I went through all the testing too. I kept telling myself that regardless of the transplsnt decision, I wanted to know about my cardiac health and so forth. It’s now time for me to go through some of the tests again while I’m actively waitlisted and still awaiting a deceased donor kidney.

It’s definitely stressful. But I try to stay focused on the stuff I control: eating correctly, drinking my daily fluid amounts, exercising, etc. I’m so thankful to still be working. That helps a lot! I love my job🐶

Keeping you in my thoughts—nothing but good thoughts!

Jayhawker

[mingmiley in reply to SadMad]

I'msorryforwhattheydidtoyourkidney.iusedtoknowaguyondialysis,originallyhewentinforsomethingelse,buttheyaccidentlycutoffhidbloodvesselstothekidneys,sobothkidneysbecameno good.fromthenonhehadtobeondialysisallhislife.utwheneverhecametododialysis,heandhiswif ewillgotothathiospital'scaffeteriatogetfoodforfree,thehospitalwouldprovidethemfreemealsforlifeaspartofthecompensation.SorryMycomputermessedup,itwon'tdospacing,I'msorry.idon'tknowhowtogetittobehave.

[felizesperar]

Hi- my husband has been on dialysis for years and is not eligible for another transplant, so we think about the effects of dialysis a lot. He too gets worn out from dialysis and sleeps a lot to regain his energy later. We find that if he does exercise (its a bit harder for him as he is in a wheelchair) tries not to nap during the day or at dialysis, and gets his 100 gms of protein a day that he feels better and sleeps better. I hope this helps.

[Vacuumnerd]

I personally think it will help A Lot if you check what your "Benefits" are with Medicar and see if you can see a psychologist it Really will do Wonders i am about to finish up treatment right now and i am also seeking a new psychotherapist as my last was not in network but the few treatments i had helped so much i come from a family that looks down on that but that i realize is Old thinking because what you are going through is so difficult and you aren't alone. And if you are not really being treated right or feel comfortable at your clinic "as my experience" it makes it so much more difficult.