Hello, intro

[IamKnuckles]

I just started PD and have been on dialysis for 5 months. I'm 56 and still working, bicycling and am involved with 2 volunteer fire companies. I'm trying to stay active and busy. Not really sure what to expect and will be getting an evaluation for transplant shortly.

[Jayhawker]

I'm in Stage IV/V CKD right now. I've recently experienced a modest improvement in my renal function, prior to that improvement I had been in Stage V since January of 2017. I am not yet on dialysis. I do plan to try PD dialysis first when it is time.

I am currently undergoing transplant eligibility and would be happy to share what I've experienced to date with you if you wish. I'm sure others will jump into the conversation as well.

What are your specific questions?

Jayhawker

[IamKnuckles in reply to Jayhawker]

I came down with endocarditis in March of 2019 and either the infection or the antibiotics made my kidneys shut down. I started with Hemodialisys and just switched to PD. I have an appointment next week for transplant evaluation. This was all a shock and came on suddenly. They had hopes that my kidneys would return from the shock but haven't so far. They have improved slightly. I'm still hoping for a miracle. I'm not sure what to expect from the evaluation. I've been doing everything the doctors have told me to do and trying to get stronger and healthier. What else can I do to improve my situation? Does sleeping get easier on PD? The machine isn't loud, but it is a little annoying. I run my air conditioner to get a single noice now, but with the cooler weather coming that will change.

[Jayhawker in reply to IamKnuckles]

Since I’m not on dialysis yet I can’t talk from personal experience about dialysis. I do know that if I was having trouble sleeping, etc, I’d talk with my dialysis team. I’m sure others who are on PD dialysis will jump in to share some of their personal experiences.

For the transplant eligibility testing, I was referred in for testing by my nephrologist. I went to the initial appointment with the transplant team on July 31st this past summer. In that appointment I first participated in two hours of patient education. I then met privately with the transplant nurse to discuss my situation specifically. That was followed by a physical exam and conversation with a transplant nephrologist. He shared specific information regarding length of wait time to receive deceased donor kidneys for different blood types. He provided more information about anti-rejection medications and their side effects. He talked about living donor transplants verses deceased donor transplants. He shared information about average time deceased donor kidneys work for persons in my age. (I’m not pursuing a living donor kidney.) And finally, he talked about the additional testing he was ordering and why those tests are run. There was then a lunch break. After lunch I met with a financial adviser. (They had already checked my finances before scheduling the appointment to move forward with the eligibility testing.) I then met one more time with the transplant nurse who provided more information about the requisite testing, etc.

As I drove home from the appointment I received a call to schedule the first testing appointment with a cardiologist. The tests I have been required to complete st this point are:

Blood tests (16 vials of blood)

ECG

Echocardiogram

Stress test

Imaging of all my major blood vessels

CT scan of my heart and my abdominal area

Mammogram

They are not requiring a pap smear or a colonoscopy for me at this point.

I have my next appointment with the transplant center on Tues, Sept 24th.

All the required testing has been completed and the results are available. Everything is “normal” with the exception of my cardiac calcification which came in at 66. From what I’ve been able to learn about this test, anything under 100 equates with 8% or less chance of having a heart attack or other cardiac event in the next 10 years. I think this is likely pretty good data for a 66 year old woman. However, I’m looking forward to hearing the transplant nephrologist’s interpretation of all this data. I’m guardedly optimistic at this point; but I’m ready for whatever he will need to tell me.

During my appointment on Sept 24th I’ll see the transplant nephrologist again. I’ll see a social worker (mental health screening). I’ll see a transplant surgeon who will complete a physical exam. I’ll see the renal dietician. And I’ll see the transplant nurse again. This appointment will be shorter; it will run from 10am to 2pm.

This is all I know at this point. I believe different transplant centers have slightly different processes. But I believe the center you go to will strategically and methodically work through the process with you.

Jayhawker

[EchoMax1012 in reply to Jayhawker]

May I ask why you are not pursuing a living kidney donation? I was a non-directed donor, and have met many people who have donated, and it has been one of the best things in their lives to have done. Living kidneys last longer than deceased ones, as you know. Anyhow, it is a great option. Just saying...

[Jayhawker in reply to EchoMax1012]

First, I'm the last one alive in my family so I've got no family members who might want to provide a living donor kidney for me. Second, I'm truly not comfortable asking friends or strangers to donate a kidney.

If there was a person who just wanted to donate a kidney to help that might be a different situation for me. But I'm not sure that ever happens.

Frankly, I can easily talk myself out of pursuing a deceased donor kidney too I've got 3-4 years only of work left at this age. I can't help but think about how few donor kidneys we've got and how many people need these kidneys. Many are younger than me and have many years of life and work and family left. It's not hard for me to talk myself into thinking the donor kidney would go to better use with one of these people rather than me.

However, having said that, I've decided that I'm going to pursue all treatment options including a transplant, should I qualify. Why? Very simply, I have no idea what God's will is in this situation. So, I'm not going to close a door on a viable treatment option.

But I am at peace with the outcome of the transplant eligibility test regardless of whether I qualify or not. I saw my father live well with CKD for his entire adult life. He would definitely be telling me how well PD dialysis works and how much more they have learned about dialysis. He had a great attitude and a wonderful sense of humor. I'm much healthier than he was. Thus I have no doubt that I will both feel and function well on dialysis.

So, I believe that either treatment option will have me feeling and functioning well. Neither is a perfect treatment; they both have their drawbacks.

Jayhawker

[EchoMax1012 in reply to Jayhawker]

Thank you. I can tell you have thought deeply about this, and are at peace with your decision. I was 62 when I donated, and I'm sure my kidney went to an older person. It would be a surprise to you, I think, of how many people there are who would donate, if they only knew. I have heard so many stories of others who have donated in a non-directed or directed manner, and they find out about the need for kidney donation in very random ways--it is certainly not in the public domain. Anyhow, best wishes to you for a happy and healthy life!

[Jayhawker in reply to EchoMax1012]

Thanks for sharing a little about your experience donating a kidney. I’m curious, why did you decide to donate? Do you have data regarding how many people choose to be living donors for persons they don’t know; just to donate a kidney to someone with no family or friends who need a kidney?

Jayhawker

[EchoMax1012 in reply to Jayhawker]

My story of donation was: I worked as a counselor for a HMO, and had two clients on my caseload at the same time: a woman who had CKD and another woman whose mother had CKD. I decided to research CKD on the internet, and in the discussion, there was a reference to kidney donation. I looked at that, saw I met the inclusion criteria, and the decision was made that this was something I wanted to do. For me, there was no equivocation, no ambivalence, and there never was throughout the process--I contacted a local transplant center in May and donated the following February. I have never met my recipient, nor do I really want to.

There are statistics about what category people fall into when they donate: deceased or living, and then if living, were they a family member, friend, or someone like me (non-directed). I think you can access this info through UNOS. Because I am involved in a non-profit which advocates for organ and tissue donation, I have heard several stories similar to mine: people had no idea there was a need, and when they found out through some random event, they decided on the spot to go through the process. Many times how they find out of the need is by a conversation with a friend, a Church bulletin, a news program or newspaper, or even when they register at the local motor vehicles department and are asked whether they want to be a donor. I am involved in a program called Erase the Wait, which encourages people who are on the waitlist for a kidney to become an advocate for receiving a live kidney, and how to make that happen with more probability of success. Typically, the people who attend the program are on, or close to being on dialysis, and have exhausted their friends and family--many of whom cannot donate because of their own health issues. The decline in quality of life from having been on dialysis is a huge motivator, as they see that they are no longer living the life they had wished for.

Anyhow, I hope this helps, and I am very happy to discuss this further with you!

[rabbit01]

Hello and welcome. I am down to 8% eGFR so am going to be starting PD soon. I have the PD pipework being fitted on 7th October. It was good to hear you are still able to cycle as I thinking that I would not be able to once I have the PD catheter fitted. How are you finding dialysis?

[Jayhawker in reply to rabbit01]

Do you find that you’re ready to start PD now?

Jayhawker

[rabbit01 in reply to Jayhawker]

Hi, Great question. No I actually feel not too bad at 8%. I get tired easily but I can still do most things that I personally want to do. I would be happy to stay like this rather than doing PD. I doubt that I will feel much better on PD but at I hope that being on it I will enter a period of stability both in my bloods and mentally as this is no life just seeing our kidney function dropping every month. I have spent the last 4.5 years living blood test to blood test and man I am just done with it. So very reluctantly I am having this operation on the 7th October with a view to starting dialysis in early November.

[DAF1234 in reply to rabbit01]

I started PD In April, so it’s been about 5 months now. To be honest I have not experienced any negative reactions. It was a little challenging at first to get used to sleeping. Now I really don’t even give it a second thought. I think this is a much better option than Hemodialysis. Make sure you discuss catheter placement before surgery. Try not to place it on the side you sleep on. Good luck to you!!🍀 👍 you’re going to be fine and you will feel better.

[rabbit01 in reply to DAF1234]

Thanks very much. Pleased to hear it is working for you.

[Jayhawker in reply to rabbit01]

Thank you for sharing more. I can certainly relate to living from one lab test to another! I’ve been doing that for the last 4-5 years as well.

Jayhawker

[IamKnuckles in reply to rabbit01]

So far PD is working for me. I had to wait until I healed to start bicycling again. Since I use the cycler over night I didn't really feel much different riding, just tired from being off the bike a few weeks.

[rabbit01 in reply to IamKnuckles]

Thanks. That is good to hear.

[3Kidneys]

I am on PD had renal failure in 2004 due to a heart attack my kidneys did come back for a short period of about six months . Initially they had me on in center hemodialysis after my kidneys started functioning again; it was only for a few months until they failed again. I started PD and within a year had a transplant. My transplant lasted 9 years, and I’m back on PD. I also work full time. You adjust your life to fit everything in....you miss out on a few little things here and there, but for the most part I do what I want. If you have any questions let me know and I’ll try to answer them for you

[Alexperk in reply to 3Kidneys]

Could you please tell me what was your GFR after the heart attack and what was it when your kidneys started to function again for 6 months? Did you have any problems with your kidneys prior to the heart attack? Did doctors explained to you why your kidneys stopped working 6 months after the heart attack? Maybe it was medicine that you took? Sorry for so many questions, but I thought that if one had acute kidney damage and then recovered, one should be OK.

Thank you.

[3Kidneys in reply to Alexperk]

It was a massive heart attack. They didn’t expect me to live, much less walk out of the hospital. I thought I had the flu for two days I had flu like symptoms with vomiting and fever. I couldn’t keep anything down, the second night I couldn’t sleep, and my back started killing me. It was when I attempted to go to the bathroom (and couldn’t go) I noticed my feet were turning blue. I woke my husband and he took me to the hospital where after testing they informed me of the heart attack. My husband tells me I was kinda talking out of my head by the time we got there (due to high creatinine and BUN) My creatinine level was 14...a gfr of 4. They put me into a medically induced coma for almost a week and a half, and started dialysis, then I fought my way back. I had no prior kidney issues,but they said It was a miracle , a few more hours without treatment and I would have passed away. The doctor said the damage the heart attack did caused severe scarring. They recovered only for a short time, at this point my creatinine level was 3.2, severe scarring is not repairable, we just kept an eye on it and it gradually declined. Then I had a transplant which lasted 9 years. I’m back on PD since 12/2016..

[Jayhawker in reply to 3Kidneys]

When you started PD dialysis this time how long did it take before you were feeling better?

Jayhawker

[3Kidneys in reply to Jayhawker]

About a month, maybe a little less. They didn’t let me get to out of hand because they knew my kidney was failing and they kept a close eye on me. So between the weekly blood draws, and my symptoms they were on top of it. When my GFR dropped to 10 they had me lined up to get my PD catheter within days.

[Hidden]

I'm not certain about the transplant thing. What does it do to your immune system? Xtra pharmaceuticals? I am ADPKD so transplant is not an option anyway? At least not right now.

[Bunkin in reply to Hidden]

PKD doesn’t prevent you from getting a transplant. I have PKD and am on the list

[Hidden]

You're so right but autosomal dominant adds to the equation. Remove the AD kidneys and the cause then transfers to the liver and brain, so I've read. So, after a transplant, my new kidneys would be being attacked, along with the liver and brain being attacked with my immune system being destroyed. I have put up with no longer having a 6 pack for many years but I'll take that and so far have lasted a lot of years with it. I am 83 now and reaching for more.

[Jayhawker in reply to Hidden]

How long have you been on dialysis? And, I may have missed this, but are you using PD or HD dialysis?

Jayhawker

[Hidden in reply to Jayhawker]

Neither, I'm holding off until the last minute. I watched a good friend die after 3 years. I'm watching my next door neighbor deteriorate on dialysis. He'll be lucky to last 3 years but he has always believed what the doctors told him. In my area, the nephrologists own the dialysis clinics so they are encouraging to go on dialysis. That's where the money is. Mine even told me that there are no treatments for ADPKD. After I told him I had been to China for treatments where they have been treating it for nearly 4000 years and asked him where he had been, he no longer will even speak to me. My GFR is 21, keeping my PH right and am in the process of going vegan. I have had a valve replaced in my heart, have budding emphysema and holding off diabetes but I am trying to last a while longer with a reasonable quality of life. Who knows though, this may be my last night but my will is made and my property is signed over to my kids to save them probate. That's sort of a lengthy answer, sorry.

[Hidden]

How do you find the time! Dialysis takes several hours, 3 times a week and you work too? I thought I am busy and don't even do dialysis. You set the pace for the rest of us.

[IamKnuckles in reply to Hidden]

I work in IT, so it's not physically demanding. My employer has been very good with me and has helped with my schedule and doctor appointments. While I was on Hemodialysis they allowed me to work 3 days a week. I scheduled my dialysis on Tues, Wed and Sat so I could work as much as possible. Now that I'm on PD I plan to work every day. My wife doesn't work, other than her full time job of caring for me, so I need to work to cover the insurance and keep they paychecks coming in. The 9 hours of PD are tough, but most of the time is spent in bed.