I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: jambo101 on December 05, 2018, 06:40:13 AM
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How bad did the symptoms of kidney failure get before you started dialysis and how soon after starting dialysis did you feel much better?
Thanks
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I never got as bad as you describe, but I napped a lot less after starting dialysis. Pre dialysis on the weekends I could almost get up, have breakfast and then in a bit want a nap, but workdays I worked normal days.
I've not commented on most of your posts, but based on what I've read (each time), I’ve wonder if it’s not time for you to start? My nephrologist always said I'd know when it’s time to start dialysis, and that the labs only mean so much, everyone is different. Obviously starting dialysis is a big change, but if you feel like crap there is a good chance that you will feel better.
I also believe that having a bit of kidney function might help as you start dialysis. For example if you are still peeing it gives you some time to learn about the fluid restrictions and prepare for the day when have to control fluid (and diet).
Good luck.
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My MD tells me that starting Hemo as late as possible has the best long-term outcome, but that patients can benefit from starting PD somewhat earlier as it helps preserve residual renal function (whereas HD tends to kill off residual function)..
I remember puking on the LV strip after breakfast when I was on PD but it was starting to fail me.
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Late to this party, but FWIW, I'm not going on dialysis until I absolutely have no choice.
I'm planning home hemo (I don't think perio is an option for me for health reasons).
I'm currently in stage 4 now but other than occasional bouts of very real fatigue (sometimes lasting days - again, unusual but I had a bout a month ago), and uncommon lower leg cramping, I'm in pretty solid shape.
Staying active - walking 10k steps a day, doing yoga once/twice a week, weightlifting three times a week. I've been fighting my own demise for years, squeezing all the quality of life I can out of my body.
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Hi, fightingPKD:
Your story or experience is really inspiring. I was in your shoes 20 years ago. But at that time I didn’t have enough education or internet to grab the information. I was very panic and did nothing, did 2 year dialysis, desperately just waiting for kidney transplant. Now I’m addicted to exercise. I spend at least 3 hours exercises if I’m not work. Exercises help me overcome depression and anxiety.
Keep fighting. Best wishes.
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Hi, fightingPKD:
Your story or experience is really inspiring. I was in your shoes 20 years ago. But at that time I didn’t have enough education or internet to grab the information. I was very panic and did nothing, did 2 year dialysis, desperately just waiting for kidney transplant. Now I’m addicted to exercise. I spend at least 3 hours exercises if I’m not work. Exercises help me overcome depression and anxiety.
Keep fighting. Best wishes.
Thank you so much! If I can motivate anyone on this sub then I am happy to do so. One thing we're all in common - we're all in a fight we didn't ask for.
Yeah, the funny thing about the steps. I only walk. I don't do cardio (running joke with my wife, who also lifts with me), but it actually started 3 months ago in an attempt to lose some weight. Not a lot, mind you - I just snuck up to 175 lbs over the holidays and auto-pilot diet wasn't working. Mid-March I decided to ramp up my light cardio and dial back my alcohol consumption (which wasn't massive, but sometimes, I'd have a drink 4-5 nights a week). I wanted to get down to 165, which I feel is the best weight for me (I've been lighter, but I just don't look good). Basically losing weight by mostly ramping up calorie burning. This is a particularly good way for women to lose weight since they are always working with less calories for maintenance to begin with - generally 400-600 calories less than a man at the same age and weight.
As to why no cardio, it's because I just can't do both, I do have real recovery limitations. I push myself really hard and I feel it's honestly benefitted me, but I AM 46, and as fit as I may be, there are hard limits that can only be pushed so much, so often.
Anyhow, about 3 months in, and it's working as planned. I weighed 168 last week. 4-5 more pounds to go then I'll settle in, keep the walking up and go a little easier on my eating/drinking.
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Just an update: I was formally put on the list Monday.
Still trying to do all the activity I said 6 months ago, but it's been tougher the past couple weeks. Combination of holidays and needing naps to keep going. Walking and yoga still happening. Lifting reduced, hopefully this is just temporary.
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How bad did the symptoms of kidney failure get before you started dialysis and how soon after starting dialysis did you feel much better?
Thanks
Please don't wait too long and please listen to your body and instinct to figure out when it is time ... and please don't wait too long ...
... I might have waited a little too long, but I was still hoping that my kidneys could pick-up again as they did in 1971, but, of course, they did not pick up again, as the disease had almost made them vanish ...
One doctor told me later, that the longer one waits, the longer it takes for dialysis/transplant to recover the body as well as can be.
In my case it happened that as soon as I was put on dialysis, I felt instantly better, but that might have been down to my great relief that dialysis was not as bad as I had anticipated and feared.
Good luck and best wishes from Kristina. :grouphug;
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I didn't feel to bad. Legs were the size of tree trunks, I got tired easily, and out of breath if I walked more than a short distance, but I felt OK otherwise. However I was obviously in a bad way, because they fitted the tubes for HD on a Tuesday, and the plan was to start dialysing the following Thursday (two days later). But before the operation (procedure?) to fit the tubes they took a blood test. Afterwards the surgeon told me to go directly to the dialysis unit immediately, and they would fit me into the next session. This was because my blood work results were so bad, she thought I might die before Thursday. The moral of this story is: Don't wait until you feel bad enough to think you need dialysis, because before you reach that point you may be dead.
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Thanks for the advice.
I just see dialysis as the end. There's no going back from it physically. I shudder to think of what I'm going to be like then. It's depressing. The idea of having yet another hole put inside of me for the sake of survival - I'm just not sure.
I'm most likely going the Kristina route and waiting until my body just doesn't function anymore. Workouts are back to something resembling normal though, pulled 2 sets of 250 for 8 reps and felt good. Not going to stop fighting.
Hope you guys have a Happy New Year.
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Thanks for the advice.
I just see dialysis as the end. There's no going back from it physically. I shudder to think of what I'm going to be like then. It's depressing. The idea of having yet another hole put inside of me for the sake of survival - I'm just not sure.
I'm most likely going the Kristina route and waiting until my body just doesn't function anymore. Workouts are back to something resembling normal though, pulled 2 sets of 250 for 8 reps and felt good. Not going to stop fighting.
Hope you guys have a Happy New Year.
Hello again and please don't take my route as an example, because you and I are completely different medical cases !
Please consider this fact at all times and please think about it in a very serious way ! Please !!
For example : I suffered complete kidney failure in the early 70's because of an underlying disease and so it came that I was found unconscious in a coma with total kidney failure and after a long time in hospital (without dialysis) my kidneys recovered well enough for me to carry on with my education.
When again I "entered" kidney failure in 2014, I was hoping to repeat the same experience as in the early 70's and it was that hope that made me to wait so long with dialysis-treatments... Can you see the difference of our medical cases? Please do !
And most importantly : Had I decided to face dialysis-treatments earlier, I might have been put on the transplant-waiting-list earlier as well. As it was, my body had become quite fragile by my waiting and I needed dialysis-treatments to get myself fit enough to be put on the kidney-transplant-waiting list.
I could write so much more but please re-consider your decision and please re-think !
There are painless ways to be put on dialysis like my chest-access. No pain, except for the first moment during the operation when the surgeon put my chest-access in its proper place. After that there was no more pain at all and all I had to do was to forget about having a bath in order to protect my chest-access.
What is wrong with that? And ... what is wrong with finding ways to continue living?
Please re-think !!! Dialysis is not the end, it is only another way to continue live for the time being until the transplant. .. And if not ... don't forget how many years people like our kitkatz here have continued living whilst they have been on dialysis!
Please re-think again. It makes me feel completely terrible right now to think that you could be doing the same as I did when my medical case is so different and I honestly was living in hope to have the same good luck as I had in the 70's, which of course, was stretching it a bit.
Please do me a favour and please re-think again and please take great care in 2020.
From dialysis-friend Kristina. :grouphug;
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Indeed, we are totally different cases. I'm not fragile (physically) - perhaps psychologically at this point.
Seriously though, what good is life if you're going to be unhappy with the state of it? That's what I struggle with. I've spent my entire adulthood with a positive self image, and this PKD is turning me into someone else I barely recognize when I look in the mirror. Every few months my kidney function drops just a little bit more - it's like impending doom. Even with a transplant I'm going to be on a battery of meds I have to take in a timely manner for the rest of my life.
I honestly begin to question if it's all worth the trouble. Ridiculous medical expenses, for what kind of existence?
Sorry if this rubs anyone the wrong way - I'm not looking to insult anyone or their personal decisions. I just look at my future at 46 and it looks mediocre at best. It's just not enough for me to live for the sake of my family. Not really. Without a real sense of self I'm just grumpy all the time. Weightlifting, drinking, and gaming. That's all that's left of my leisure life. It's a small amount compared to 15 years ago.
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Indeed, we are totally different cases. I'm not fragile (physically) - perhaps psychologically at this point.
Seriously though, what good is life if you're going to be unhappy with the state of it? That's what I struggle with. I've spent my entire adulthood with a positive self image, and this PKD is turning me into someone else I barely recognize when I look in the mirror. Every few months my kidney function drops just a little bit more - it's like impending doom. Even with a transplant I'm going to be on a battery of meds I have to take in a timely manner for the rest of my life.
I honestly begin to question if it's all worth the trouble. Ridiculous medical expenses, for what kind of existence?
Sorry if this rubs anyone the wrong way - I'm not looking to insult anyone or their personal decisions. I just look at my future at 46 and it looks mediocre at best. It's just not enough for me to live for the sake of my family. Not really. Without a real sense of self I'm just grumpy all the time. Weightlifting, drinking, and gaming. That's all that's left of my leisure life. It's a small amount compared to 15 years ago.
Hello again ... and ... please feel assured that you don't "rub anyone the wrong way", here on IHD, all of us here are in kidney trouble one way or another and we understand and are trying to assist each other as much as we can as patients ourselves and being in slow or sudden kidney failure is in any case very difficult to deal with, physically and/or emotionally and we certainly understand the difficulties.
... And you are right, everyone decides for themselves, what is best for them and we are all different in our ways and we also come from different backgrounds, but just to mention : whilst being on dialysis there are still many "things" to discover and do and there are also many different "things" to chose from. How about getting into the history of weightlifting etc.?
I wish you good luck and all the best from Kristina. :grouphug;
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P.S.
I have just looked-up the word "gaming" and apparently there are quite a few different meanings :
i.e. gambling money away and/or manipulate (a situation), typically in a way that is unfair or unscrupulous to others, and/or as a financier "gaming the market" ....
... which one did you mean ?
Thanks from Kristina.
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Perhaps "gaming" in this context means playing games - literally.
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Perhaps "gaming" in this context means playing games - literally.
Many thanks Simon for the kind explanation and I send you my good-luck-wishes for 2020 from Kristina. :grouphug;
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Perhaps "gaming" in this context means playing games - literally.
It means both athletics and video gaming.
My life since high school has been a bit of a paradox. 30 years later, it's somewhat debatable if I've ever, really grown up :) Before weightlifting was actual sports - tennis and ice hockey. Later on post PKD I played some rec soccer and I coached youth soccer for five years.
Weightlifting is a thing now because I decided I'm better off improving my overall quality of life instead of babying my remaining kidney and allowing the rest of my body to atrophy.
I started with one kidney left at 50% function at 31. Now I'm down to 16-17% at almost 47. My diet has been good as far as 'kidney friendly' - potassium is my constant struggle mostly. Blood pressure is OK. However, physically, I push myself hard. Not absurdly hard, but hard and consistent.
Weightlifting/Exercise has become the only crutch these past ten years or so that I could look in the mirror and see some semblance of who I believe I am. Despite the scar that goes from the top of my abdomen to my groin.
I guess the biggest mental struggle with this disease is that the average person just thinks yeah you struggle, but you can get a transplant and life's all better. From what I see, that's only mostly true. There is no real endpoint for any of us. It's like cancer that way. I think that's the real source of hopelessness I have to repress from time to time. Every bad workout reminds me of 'the end', so to speak. Every good workout means I feel better about the fight.
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There is no real endpoint for any of us.
Actually, there is :(
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I have not been able to post in this forum for a few days because I have been in a local hospital Intensive Care Unit recovering from complications of fluid overload among other things. I say this in all sincerity do not give up. After I got out of intensive care yesterday I will be in rehab for approximately 3 weeks. The experience of being given the opportunity to actually give up was almost taken by me. Lying there on the ER table waiting for death to overtake me I could see myself in my imagination struggling to raise my head to let someone know that I was still here. It sounds very dramatic but it is not meant to be dramatic. The only reason the very only reason I share this is to let you know that letting go is not the thing to do. You need to fight. You need to find other things to do. You need to channel your energies in finding ways to get better. You have not been allowed to continue on this Earth because you have been considered a quitter. You are still here because you are considered to be a fighter. Join the fight!
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Oh, lulu! I will remember your post for a very long time! That must have been such a frightening experience for you, and I am very glad that you are still with us.
Thank you so much for posting. Your words are very wise! :grouphug;
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Hello Lulu and many thanks for your wise thoughts. I send you all the best good-luck-wishes for 2020 and hopefully all goes well for you in rehab. You are right, it is quite a fight and sometimes it goes a bit easier and sometimes it is a bit more difficult, but it is well worth it ! Good luck !
Take great care and see you soon and best wishes from Kristina. :grouphug;
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Oh, lulu! I will remember your post for a very long time! That must have been such a frightening experience for you, and I am very glad that you are still with us.
Thank you so much for posting. Your words are very wise! :grouphug;
moose mom thank you for your thoughts. I hesitated posting all of that because in some cases it sounds way too awful to have actually happened. But happen it did and in many ways it has been a very beneficial experience for me. Again, thank you for your reply and very happy New Year to you and yours.
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lulu, while I'd never want you to "relive" such a bad experience by posting about it on IHD, I'm glad you decided to do so because 1. sometime it can sort of "wash" bad memories away to some degree, and 2. other members and/or lurkers can learn a lot from you words and take them to heart.
"Thanks for sharing" sounds so trite, but with all sincerity, thank you for sharing.
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Getting back to the original question; "How bad did it get?"
In my case, I knew my kidneys were failing for years. I was even getting regular GFR tests, so I knew. It was about May when I lost my job when the company started to fail. Had been on limited hours for months, and upon losing my health insurance, I couldn't afford to purchase outside insurance, so I took the first job that came along, which was a mistake that lasted only 3 months. Looked for work for the next 3 months, found another job at a less-than desirable company, hoping to make it the required 3 months before insurance kicked in. It had been 6 months since my last GFR test showed me at 11. I worked as hard as I could, but barely had enough energy to make it through the day. Probably had to pee a dozen times a day, too. And the headaches from my elevated potassium level made it difficult to concentrate. My work suffered, and I was let go just before getting insurance. I was broke, went to Social Services, and went on MedicAid and unemployment. Got a GFR test; I was at 6, my potassium level was so high my nephroligist had me take Kalaxotate(sp?) to purge me, and had me start dialysis the next Wednesday. I was severely anemic, was 6'3" and only weighed 160 lbs. Could barely get up, and slept about 10 hours a day.
After a month on dialysis, I noticed that I was feeling better. Kept eating well and doing mild exercise. After 8 months, I was feeling healthy and more-or-less energetic, so I decided to look for work. Since then, I've worked full-time most of the time, taking what few jobs I could find with the scheduling constraints my thrice-weekly dialysis treatments allowed. Some were temp, some were just crappy, but at least I've stayed employed. The job I finally found looks like it will keep me busy until I can retire at age 62 and get social-security benefits rather than disability benefits.
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age 62 and get social-security benefits rather than disability benefits.
An interesting technicality is that if you transition to SS from SSD benefits, you get to keep the higher disability benefit. Something to consider as going against the "wait until later to collect the higher amount" - not only do we have shorter life expectancies, but get off SSD and transition from no benefit to SS and you get a lower amount.
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As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.
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I'm glad you are able to work! Makes life feel more secure.
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As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.
You can work part time on disability without losing eligibility, however, there is a monthly earning cap somewhere around $1K.
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As long as I am working, I'm increasing my SS monthly payout. Also, you can actually work part-time without reducing your monthly check, unlike disability.
You can work part time on disability without losing eligibility, however, there is a monthly earning cap somewhere around $1K.
Yeah, but I've got an education, and frankly the extra earnings allowed ain't gonna cut it. Nobody seemed to be interested in PT work locally, except for low-paying service jobs, and working PT in my field would max me out after about 10 hours a week.
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I retired on SSDisability when I was 62, I didn’t loose any money since my Benifits were calculated as if I was 66, in other words my payments were not discounted for collecting 4 years early. When I reached full retirement age I was moved to regular SSA Benifits, so there was no difference for me in working 4 more years or going out early.
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How bad did the symptoms of kidney failure get before you started dialysis and how soon after starting dialysis did you feel much better?
Thanks
Are you feeling any better?
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Yeah feeling better after a year of dialysis. a lot less water retention all over ,the itching is gone, blocked ears is gone,slightly more motivation, however the title of this forum (i hate dialysis)is an understatement..
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Yeah feeling better after a year of dialysis. a lot less water retention all over ,the itching is gone, blocked ears is gone,slightly more motivation, however the title of this forum (i hate dialysis)is an understatement..
:cuddle;
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It's funny. I came back to read this thread tonight and I see I was posting on it a couple years ago.
So, the short update is I am STILL not on dialysis. Diet/exercise/hydration/whatever I've managed to get by all this time. Although my time is just about up - my last labs were OK except for that ugly eGFR 8.
I'm still functional day to day, I'm still lifting twice a week and walking 8-12k steps most days- getting in 15-20 miles a week outside.
I had a fistula installed this spring, it's ready.
I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester. It'll be easier for her to manage me through the transition at the start of next year...
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I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester. It'll be easier for her to manage me through the transition at the start of next year...
It does not have to be your "one last time" visiting your brother for Thanksgiving.
Whether you are on the DIY home dialysis program or use in-center, it is easy to book appointments nearly anywhere in the US when you travel. The is generally taken care of by the staff at your dialysis center, and they arrange for transfer of the medical/insurance records. If you do home dialysis with blunt needles, I suggest bringing your own when traveling since I encountered one clinic that did not keep them in stock - it fact, the entire staff surrounded my chair to watch as they had never seen a patient self cannulate before. (Very rural clinic)
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I know you CAN, but it seems like a tremendous pain in the ass for all parties involved.
Travel has already been a massive nuisance for me the past few years due to having to lead a high-maintenance health life as it is. Micro-managing my day-to-day life to stay healthy seems (and has been when I've done it, I've traveled a good bit this summer) absolutely exhausting to do away from home.
"If you do home dialysis with blunt needles, I suggest bringing your own when traveling since I encountered one clinic that did not keep them in stock "
Thanks for this tip!
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It's funny. I came back to read this thread tonight and I see I was posting on it a couple years ago.
So, the short update is I am STILL not on dialysis. Diet/exercise/hydration/whatever I've managed to get by all this time. Although my time is just about up - my last labs were OK except for that ugly eGFR 8.
I'm still functional day to day, I'm still lifting twice a week and walking 8-12k steps most days- getting in 15-20 miles a week outside.
I had a fistula installed this spring, it's ready.
I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester. It'll be easier for her to manage me through the transition at the start of next year...
Hello and I congratulate you to your success and I am very glad for your diet & exercise etc. to work so well in order for you to avoid dialysis.
But please have a quiet word with your friends & family etc. to check-up and make sure that your “grey-cells” are still serving well and give you their very best? I only mention this because “in my case” for example, I was quite sure that my “grey cells” were still functioning perfectly well, but my husband noticed, that my “grey cells” were not quite at their usual knife-sharp-best anymore before I started with dialysis-treatments ...
Please take great care and I wish you the best of luck from Kristina. :grouphug;
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I know you CAN, but it seems like a tremendous pain in the ass for all parties involved.
Not really, except for chasing the insurance dunning letters when your carrier screws up the out of town treatments. My record is two years to get my insurance to pay for two treatments in Texas.
The actual mechanics are easy - Tell your clinic where you want to go and when. Either they can find you a clinic, or you can go online and locate the most convenient one (my approach), and ask your clinic to book that one. The clinic can cross-register between companies (I used Fresenius, but was occasionally booked at a DaVita). If you do DIY dialysis, you still have a "home clinic" for support. I never had a problem with my appointment at a travel clinic, and they were always expecting me. I would sometimes drive to the clinic the day ahead to make sure I know how to get there.
There is no generally additional cost to you having dialysis at another center. (Easy enough to check). Private pre-medicare insurance may limit the number of days per year (I think I had a 30 day limit, not sure, only traveled about 15 days per year)
You get a printout with your appointment info, show up 15 minutes ahead of time for your appointment, and everything is just like a local treatment from there. I was on D for 6 years 3 months and 5 days and did dozens of "on the road treatments".
When I traveled on PD, I had lots of bags of solution pre-shipped to the hotel. Some hotels (all the Las Vegas biggies) run package receiving as a business and charge by size and weight to receive (as if you were shipping the package) amounting to $20 a box or so. I found Las Vegas hotels were very accommodating when I asked for the PIC (person in charge) and requested a waiver of the fees for medical supplies .... but I still tipped the bellman who delivered them, so I suppose that was an additional cost.
In my case, I was determined to control the process to the extent possible, not let it control me. I did home PD (Peritoneal for 6 months then hemo when it failed), and traveled dozens of times. The first few trips were on PD and I took the machine (fits in airline overhead and counts as 0 bags and 0 carry ons) and had supplies shipped. It is possible to travel with NxStage but that approach fits you definition of "too much pain in the ass" since the machine and case weigh 99lbs and the case does not have wheels.
Don't brush off "travel dialysis", especially if it enables you to attend family get togethers. If you give it a try once you will then be qualified to judge if it is worth the hassle. You may be pleasantly surprised.
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Hey fightingPKD,
Just want to give my kudos that you remain so active on such little function. That's so great!
Got a question for you about the fistula. How do you find that it "feels" or not feel during your weight training? Besides the dead fistula or two, I've got an unfinished one that I need to "preserve for the future" growing and buzzing. I want to finally get back into biathlon but just giving pause due to the weight training.
*And hey, I know the feeling of looking at the long journey of it all with CKD. I've been through the mill with this disease, not even 40 yet, and some days wonder what in the actual F I am doing. :P
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I'm just hoping to last until the end of the year, so I can still spend Thanksgiving with my brother in Boca Raton one last time, and allow my wife to finish her semester. It'll be easier for her to manage me through the transition at the start of next year...
Hi, I've not gone back to read your intro post so sorry if you answered this already... Are you already listed for transplant? You can do it prior to starting dialysis and get credit on the wait list while you are able to manage yourself pre dialysis.
Regarding travel hopefully your energy levels and overall lifestyle will improve a bit with dialysis. You might find you are better off lifestyle wise once treatments start and your blood receives extra filtering to remove toxins that you have to deal with now. Assuming you are US based its fairly simple to setup treatments in the US. But regardless, you might see a bit of a pickup once dialysis starts.
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Thanks for all the responses and thoughts!
Simon: As far as dialysis and improving my quality of life - that's the thing. I'm not at all convinced it will. I'm convinced it'll be worse.
My present understanding is that it improves your kidney function to roughly eGFR 15-20. It wasn't that long ago I was there, and I only feel marginally worse now. The biggest thing is fatigue beginning to set in. Not 'life fatigue' as much as it it 'cardio fatigue'. I just saw my neph yesterday morning, and she's on the 6th floor of a building. I opted to climb the stairs - just to see if I could. I was absolutely gassed/winded by the top but I DID make it. The thing is, people will tell you the average person with full kidneys/health won't be able to do this, so...
I just know far too many people (and younger) who the process of dialysis has literally worn them out. I was in a dialysis gamer discord for a few weeks earlier this year. Everyone younger than me (which is sad, in itself as I'm about to turn 50).
The people who reliably have told me that dialysis improved their life were the ones who generally experienced life-altering fatigue, inability to hold food down (or lack of desire to eat), nausea, or other awful symptoms.
If I start dialysis, my dietary restrictions don't improve. I get protein consumption back, and I lose fluid consumption. The rest is a wash. Besides, every day I am holding off is one less day my wife has to help hook me up to a hemo device (we're going to do home hemo).
I guess I just don't see the point in traveling on dialysis if I'm not going to actually enjoy myself, you know? Travel someplace all day, dialyze the next morning, be worn out afterwards, and to do what? lay around a different place half the day? still have to have restricted eating, drinking, and so on? I just don't understand, other than doing it for other people - not myself. I suppose IF I end up handling dialysis better than most people I know of, it could be a different story.
kristina One of the recurring issues I've had throughout my kidney failure experience (throughout the years) is being told my 'grey matter' decline is normal. Pretty much all of my 'decline' is considered normal from a 30 year old me to the nearly 50 year old me now. It's one big mindf*ck if I'm being honest. I do know, for sure, that I had a really bad stretch early this year mentally. My blood chemistry was worse than right now. eGFR was still in the 12-14 range but my blood was very acidic and my blood pressure was out of control due to the sodium bicarb tablets I was given to try and improve my blood CO2. I was admitted to the hospital overnight in late March due to a potassium spike. Due to this, the doctors came up with a new blood pressure management protocol - along with implementing liquid sodium citrate, instead of bicarb - that has alleviated these issues since. Even my phos isn't tragic at this point (5.4-5.8 range).
Iolaire: Yes, I am listed :) I got on the list just over three years ago. Problem I have run into is the people in my family (immediate) all DQ'd out for various kidney issues (stones, mostly). A couple other people have told me they looked into donating but didn't qualify due to weight issues. I have a half-sister-in-law who is at the latter stages of the process though, she may make it through. I'm not holding my breath though, I'm just a pessimist like that.
Ukrainian: It's difficult to explain, but I'll try.
As I workout I am constantly checking the pace/cadence of the thrill/bruit/whatever you want to call it. Anyway, as I began to exercise more often I was able to get a 'feel' for when I thought it was "tired". If you are reasonably in tune with my body you can sorta feel the cues of your fistula as you exert yourself over time. if there's any question in your mind, STOP.
The one thing I've learned though is that, done very patiently, you can really strengthen the fistula. There are things I can do strength wise today that I couldn't do 2-3 months ago. I actually mowed the lawn last couple times - that was impossible back earlier in the summer. We live on a modest hill, it's about half an acre. I had a really long and painful recovery from my fistula surgery (long story short, nerve damage in recovery - I was in constant pain for over two months). I started out with very light weight. No, really, I'm talking squatting with just a barbell (no weight)...and doing dumbbell presses with 10 lbs and limited range of motion in the beginning. The key with weight training is to make your only goal not harming the fistula. I did whatever limited things I could with my fistula from the very beginning. Over the weeks and now I guess 3 months or so now, I'm up to doing slow dumbbell presses with 30 lbs or paused bench presses with 85 lbs. I do a lot of reps - 10, 12, 15. I do a lot of pause work. Things to make the exercise harder without adding unnecessary strain to the fistula. I even do bicep curls on the fistula arm now - but just 10 lbs. I do 12, 15 reps. It's light, but that's honestly the point. Patience, patience, patience. don't set timelines for yourself exercise wise. I had to learn to appreciate just being ABLE to still do these things, versus being a gimped potato. I've set weight limits for what I will ever do with this fistula that I am basically at now (30 lb dumbbells, for example). Yeah, I CAN do more - but that's not the point anymore.
Naturally, get vascular surgeon approval - I did. I reached out to him with questions early in the process, making sure I felt like I wasn't overdoing it.
I'm not really knowledgeable on the specific demands of biathlon, other than that's a lot of cardio :) Because of my specific kidney disease (PKD) I had to give up real cardio a few years ago.
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
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If I start dialysis, my dietary restrictions don't improve. I get protein consumption back, and I lose fluid consumption. The rest is a wash. Besides, every day I am holding off is one less day my wife has to help hook me up to a hemo device (we're going to do home hemo).
Congratulations on the home hemo. If you use NxStage with 5x/week you will have less of a fluid restriction since you will have two one day gaps a week, rather than 2 one day gaps and a 2 day gap. BIG difference. If you use a conventional machine, try to talk your MD into letting you do either 4x/week or every other day - that 2 day gap can be lethal.
Everyone is different with home hemo, but travel D works. I remember going to a clinic in Las Vegas at 5AM, getting the Shot Show (huge convention - on feet almost the entire day) the out for dinner and up the next day for a "day off of D". The home treatments, especially if spread out over more than 3 days are not as draining. I have other memories like barrelling down the back roads of rural Texas in a borrowed F250 passing vast desolation and a few oil wells to get to a treatment center in a one stoplight town, plus the one in Nowhere, NH where they asked me to wait on sticking the needles until they could get the staff circling my chair to watch.
And why have you wife start the needles? Unless you have something like Parkinson's you can learn to do this yourself.
Hemo will rob you of all residual funcion and you will probably stop urinating withing 6 months - which ups he fluid restriction. But, you can safely have more than 1L/day on those days that are not followed by a treatment gap. But, as you failure continues without D you will also gain a fluid consumption limit .... if you live.
Gray mater? I continued to work for my first 3 years 30/hours at a mentally demanding job until there was corporate turmoil and part time was no longer workable. I'm back at it full time post-transplant ..... pushing 65 and still working with 25 year old on tech projects. Years ago I would have thought it failure not getting to senior management by now, but these days I feel grateful I am able to keep up with the fresh moist brains of the younguns.
D will improve your lifestyle. Without it, you will die as your disease progresses. With it, you can live a long time and quite possibly get a transplant. Keeping your current lifestyle and thinking you can continue to maintain it without out dialysis or a transplant is not realistic. So is Dialysis an improvement in lifestyle over Die? Quite possible yes. It was for me.
I started my journey on D in my mid fifties, but was diagnosed about 17 years before D was necessary so I had time to get used to the idea.
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap. Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.
Simon: Naturally, at some point soon-ish, dialysis is the answer. That's why I have a fistula. It's just not today. Or tomorrow. I'll resist until I can't anymore, and then I'll begrudgingly accept this new phase of 'life', knowing I did everything I could to extend myself as long as possible.
As far as sticking myself, not everyone can do it. Will I try to learn? Sure. However my wife is the chemist and researcher. She's the one who found it incredibly cool and fascinating to replace gauze in my open fascia for months after my accident and lost kidney in 2004. She is an absolute klutz when it comes to gross motor skills, but I can't even get in her zip code when it comes to fine motor skills.
If for some reason after a few months I just cannot do it myself, I'll just set up occasional weeks when I go to a center, to give her a break or something.
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The current thinking is that starting PD early is good because it preserves residual function, but there is no increase in survival rates or longevity waiting to start HD until you really really need it. I knew I needed to switch from PD to HD when I developed the habit of opening the door at stoplights to puke on the road.
Hang in there.
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I hear you!
PD was never really a practical option for me, due to the size of my remaining kidney and cysts on it and my liver. My lower stomach sticks out now like a dadbod despite the fact I'm reliably in the 163-167 lb range. They are guessing when I get a transplant (whenever) and they remove the other kidney, I'll drop about 8 lbs right then and there, and my abs will flatten back up.
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap. Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.
I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.
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Ukrainian: It's difficult to explain, but I'll try.
As I workout I am constantly checking the pace/cadence of the thrill/bruit/whatever you want to call it. Anyway, as I began to exercise more often I was able to get a 'feel' for when I thought it was "tired". If you are reasonably in tune with my body you can sorta feel the cues of your fistula as you exert yourself over time. if there's any question in your mind, STOP.
The one thing I've learned though is that, done very patiently, you can really strengthen the fistula. There are things I can do strength wise today that I couldn't do 2-3 months ago. I actually mowed the lawn last couple times - that was impossible back earlier in the summer. We live on a modest hill, it's about half an acre. I had a really long and painful recovery from my fistula surgery (long story short, nerve damage in recovery - I was in constant pain for over two months). I started out with very light weight. No, really, I'm talking squatting with just a barbell (no weight)...and doing dumbbell presses with 10 lbs and limited range of motion in the beginning. The key with weight training is to make your only goal not harming the fistula. I did whatever limited things I could with my fistula from the very beginning. Over the weeks and now I guess 3 months or so now, I'm up to doing slow dumbbell presses with 30 lbs or paused bench presses with 85 lbs. I do a lot of reps - 10, 12, 15. I do a lot of pause work. Things to make the exercise harder without adding unnecessary strain to the fistula. I even do bicep curls on the fistula arm now - but just 10 lbs. I do 12, 15 reps. It's light, but that's honestly the point. Patience, patience, patience. don't set timelines for yourself exercise wise. I had to learn to appreciate just being ABLE to still do these things, versus being a gimped potato. I've set weight limits for what I will ever do with this fistula that I am basically at now (30 lb dumbbells, for example). Yeah, I CAN do more - but that's not the point anymore.
Naturally, get vascular surgeon approval - I did. I reached out to him with questions early in the process, making sure I felt like I wasn't overdoing it.
I'm not really knowledgeable on the specific demands of biathlon, other than that's a lot of cardio :) Because of my specific kidney disease (PKD) I had to give up real cardio a few years ago.
Hey thanks - this is helpful. Without any “real” exercising of my arms, I went from being able to lift heavy-ish things to noodle arms now. And I found that when I pulled out the roller skis for fun/heck of it, the arms just are weak. I’ve asked around with transplant patients that took a “fitness direction” about weights and couldn’t get a good answer. Some avoided dialysis with a living donor and some had short term catheters. So, it is encouraging to see that it can be done (with approval) and with care of the fistula considered. Great work on your part!
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap. Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.
I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.
Full credit to you for this. No, I'm definitely not putting this kind of effort into it. I just can't be 'that person' I guess. Begging's beneath me.
If I die sooner as a result, I do. This country's circling the drain anyway.
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap. Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.
I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.
Full credit to you for this. No, I'm definitely not putting this kind of effort into it. I just can't be 'that person' I guess. Begging's beneath me.
If I die sooner as a result, I do. This country's circling the drain anyway.
Hello fightingPKD, I keep my fingers crossed for you and I do hope you are going to be lucky, and your kidney transplant is going ahead without any complications... Good luck !
I received my kidney-transplant from a diseased donor who happened to be a perfect match despite us being born in different countries, which goes to indicate, that in a way we all seem to be related to each other somehow ... The first few years were very difficult for me because of "my" underlying diseases with flare-ups etc. which made my own kidneys fail in the first place and my kidney-transplant took quite a few very difficult-to-handle hurdles plus chronic pain because of an injured nerve "in that region" during the transplant-operation. But now, a few years later, it all seems to heal (touch wood!!!) and I feel, that I might be on my way to recovery (touch wood again !!!).
Please take great care and please don't take any hasty decisions and ... please talk it over with family and/or friends ... and I keep my fingers crossed for you... Please don't despair and please take great care and I send you kindly my best good-luck-wishes from Kristina. :grouphug;
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Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938
I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap. Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.
I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.
Full credit to you for this. No, I'm definitely not putting this kind of effort into it. I just can't be 'that person' I guess. Begging's beneath me.
If I die sooner as a result, I do. This country's circling the drain anyway.
I know it's hard to ask for yourself, as I mention in the article. That's why I helped my family members. I think they would all still be on dialysis as they were too sick and overwhelmed to mount a campaign. I never begged, lol! I just shared their story. But if you have no one to help, I am sorry.
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Dear okarol, I am very sorry that you feel like that because your comments do sound very harsh indeed, especially since receiving a kidney-transplant does not only depend on the efforts of family members but mainly on the assessments, efforts, planning and some particular medical thinking of medical staff, nephrologists and nurses … and it also depends on the medical assessments and particular needs of patients etc., it also involves lots of medical skill and help again from doctors, nephrologists and nurses etc.
Are you really sure your family members would still be on dialysis if you would not have mounted a campaign on the Internet? Would not doctors and/or nurses have helped your family members? How about kidney-transplant waiting lists? Of course, there is no need to “go on begging”, because there are surely some non-medical people out there who perhaps could be convinced through humanitarian appeals and plights on the Internet etc. to part with one of their body-parts i.e. kidneys? Especially since there are so many reports of donors suffering terribly after having parted with one of their kidneys (especially the left kidney)?
But, it does come over as pretty unbelievable to imagine that our society can now use the Internet, and especially, that the Internet can now be used as a vehicle for “searching to exchange/receive etc. particular body-parts of living human beings” etc. It just sounds very raw and a bit “Frankensteinish” and comes over as extremely shocking indeed and I am still hoping to have misunderstood your comments?
Best wishes from Kristina. :grouphug;
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I am not going to speak for okarol, but I do believe that her comments were misunderstood.
One has to understand that those needing a kidney (or those seeking an altruistic living liver donor) are (mostly) already on dialysis and have gone through the proper transplantation work-up like any and all patients that have been approved for transplant.
The doctor, nurses, medical team, etc have done their part for approval and signing off on the paper work to get someone listed. As I understand it, people are listed on the same list as those awaiting a deceased donor, but if they find a living match (which doctors will tell you are preferred), it could really move things forward quickly. There are some locations that people wait 7 years or more for that call, but if they can find a willing donor, they can go through the approval process and a surgical date can be scheduled. So, potentially, yes, someone could remain on dialysis for years longer if they did not find a living donor match.
At the meeting with my transplant coordinator (when I needed to sign off on forms), I was advised that I would be listed on the deceased donor list, but in the meantime, I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much. And anyway, I eventually pursued a double organ transplant, so it was best to wait on the deceased list.
That said, there is a push for people to find their own donors. And yes, this has medically-minded people approval. Here is a "How to" fact sheet from a national organization here: https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor
Here is a heartwarming story that swept the nation because it was hockey related: https://www.goodmorningamerica.com/wellness/story/hockey-fan-asked-kidney-homemade-sign-game-found-59337896
This article discusses how "rich" and "cute" people have a leg up on the rest of us average adults because people are more drawn into their stories. For example, I have a family member that got tested to donate to a child that needed a kidney, but never tested to see if he'd be a match for me, because the kid was cute. Even raised funds for them. :rofl; It was for this reason I never sought out a living donor...no one would want to donate to an Eastern European woman that looks like ringleader of a Balkan crime gang though I too was a (not as cute) sick kid. And hundreds of people came forward to get tested to see if they were a match to a billionaire.
https://www.thestar.com/news/gta/2016/10/23/organs-for-the-rich-and-cute-should-patients-campaign-for-their-own-donors.html
It all comes down to the kindness of strangers who want to do something for someone. It happens.
One must unravel the idea of "searching to exchange/receive body parts" over the Internet because that takes one into some potentially dark territory that is illegal, and not what looking for a living donor is about. For example: https://www.dailymail.co.uk/news/article-11461933/Mexican-woman-killed-organs-flying-3-000-miles-Peru-meet-man-met-online.html
Also, if we use the term “Frankensteinish”, we contribute to the misinformation and disinformation about organ transplant because a lot of people still hold some really odd thoughts about the procedure. I have been called Frankenstein. I have been called "Living Dead Girl" by people that simply do not understand.
Anyway, in this long meandering post, I just want to say, that yes, people do search out living donors and it is a lot of work to organize. If people want to do that and are great at campaigning, God love'em! There are not doing anything wrong and transplant programs advise that this is an avenue to investigate.
Some of us can't or don't feel comfortable doing it. Others can and pursue it. Good luck to them.
I mean this all in the nicest way too! But I probably just confused more things...
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"I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much."
Thanks for sharing, UT!
Yeah, this is my experience as well.
My wife is all I have, and I don't think she's the ideal person to 'sell' something on anything. Although if the roles were reversed, I would sell for her like nobody's business - we are two different people and personalities! Meanwhile, I would be a subpar caretaker for her. Oh, I'd learn and improve, but I'd NEVER be as good as her at it!
She's an incredibly loving person who has no issue helping me with home hemo when I start. She was the one who stitched me back together bak in 2004 when I needed a binder to keep my guts from falling out for months.
I also think there's a small part of her that is in denial that I'll ever get to dialysis. Not so much these days, but you have to understand, I've been on the transplant list for almost 3.5 years now. It's been nearly 4 years since I first hit eGFR 19. I'm still plowing along, although the road is certainly narrowing for me. So, until maybe a month ago, the harsh inevitably of dialysis has always been 'sometime', you know?
My nephrologist and PCP don't know of a single person who's survived w/o it longer than I continue to. I'm down to eGFR 8 and other than phos I am OK. I'm going to begin taking phos binders - hopefully buy myself another couple months :)
I put out notifications and updates on facebook every few months, and I have some moderately influential friends in my local community who help 'share' the word, but neither are healthy enough to be a donor. I have had 4 or 5 people ALL fail out for health reasons (typically, either overweight, history of other kidney problems). Having friends in the age group I am (about to turn 50) means finding someone is tougher, because of this.
I have one half-sister-in-law going through the donor process now, but she needs to improve her blood pressure. It is POSSIBLE she may qualify in a couple months. We keep our fingers crossed, but I am chronically pragmatic/realist about life.
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Reading this over got me thinking about the site I keep up with a page about living donors. I was wondering what people thought of it: Find a Living Donor! (https://dialysisethics2.org/index.php/information) Do I need to update it? As I've stated, I've been spending most of my energy lately on Reddit's diabetes subreddits, but occasionally feel the need to go back to my roots here. And I'll mention my daughter was in a clinic back in 2000, but has a transplant now.
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Part of why I actually JUST switched hospitals from University of Maryland to Johns Hopkins, is because UMMS really doesn't have any paired donor programs, besides their own local. Hopkins has multiple besides their own.
Not that I even have an unmatched donor, I don't...but I've got a good chunk of time accumulated now, IF I do find someone who isn't a blood match, it should really expedite my search for (in this case) a paired donor.
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Dear okarol, I am very sorry that you feel like that because your comments do sound very harsh indeed, especially since receiving a kidney-transplant does not only depend on the efforts of family members but mainly on the assessments, efforts, planning and some particular medical thinking of medical staff, nephrologists and nurses … and it also depends on the medical assessments and particular needs of patients etc., it also involves lots of medical skill and help again from doctors, nephrologists and nurses etc.
Are you really sure your family members would still be on dialysis if you would not have mounted a campaign on the Internet? Would not doctors and/or nurses have helped your family members? How about kidney-transplant waiting lists? Of course, there is no need to “go on begging”, because there are surely some non-medical people out there who perhaps could be convinced through humanitarian appeals and plights on the Internet etc. to part with one of their body-parts i.e. kidneys? Especially since there are so many reports of donors suffering terribly after having parted with one of their kidneys (especially the left kidney)?
But, it does come over as pretty unbelievable to imagine that our society can now use the Internet, and especially, that the Internet can now be used as a vehicle for “searching to exchange/receive etc. particular body-parts of living human beings” etc. It just sounds very raw and a bit “Frankensteinish” and comes over as extremely shocking indeed and I am still hoping to have misunderstood your comments?
Best wishes from Kristina. :grouphug;
Sorry, I am very surprised, I don’t understand how you think my comments are harsh. It’s just our reality. The waiting time in Los Angeles is 10 years for a deceased donor kidney for a type O recipient. At 65 years old my sister might not have lived long enough to get one. With my daughter having 100% antibodies, they said she could wait 20 years. As it was it took 5 years on dialysis to find a living donor for my daughter and 7 years on dialysis for my sister. We were fortunate that 2 people were willing to donate in swaps to save them. No hospital, social worker, transplant team or anyone else helps find a living donor. And tons of people die every year waiting for a deceased donor. I am grateful for the gifts they received. It happens every day, strangers saving others. So sorry if you’re offended.
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I am not going to speak for okarol, but I do believe that her comments were misunderstood.
One has to understand that those needing a kidney (or those seeking an altruistic living liver donor) are (mostly) already on dialysis and have gone through the proper transplantation work-up like any and all patients that have been approved for transplant.
The doctor, nurses, medical team, etc have done their part for approval and signing off on the paper work to get someone listed. As I understand it, people are listed on the same list as those awaiting a deceased donor, but if they find a living match (which doctors will tell you are preferred), it could really move things forward quickly. There are some locations that people wait 7 years or more for that call, but if they can find a willing donor, they can go through the approval process and a surgical date can be scheduled. So, potentially, yes, someone could remain on dialysis for years longer if they did not find a living donor match.
At the meeting with my transplant coordinator (when I needed to sign off on forms), I was advised that I would be listed on the deceased donor list, but in the meantime, I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much. And anyway, I eventually pursued a double organ transplant, so it was best to wait on the deceased list.
That said, there is a push for people to find their own donors. And yes, this has medically-minded people approval. Here is a "How to" fact sheet from a national organization here: https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor
Here is a heartwarming story that swept the nation because it was hockey related: https://www.goodmorningamerica.com/wellness/story/hockey-fan-asked-kidney-homemade-sign-game-found-59337896
This article discusses how "rich" and "cute" people have a leg up on the rest of us average adults because people are more drawn into their stories. For example, I have a family member that got tested to donate to a child that needed a kidney, but never tested to see if he'd be a match for me, because the kid was cute. Even raised funds for them. :rofl; It was for this reason I never sought out a living donor...no one would want to donate to an Eastern European woman that looks like ringleader of a Balkan crime gang though I too was a (not as cute) sick kid. And hundreds of people came forward to get tested to see if they were a match to a billionaire.
https://www.thestar.com/news/gta/2016/10/23/organs-for-the-rich-and-cute-should-patients-campaign-for-their-own-donors.html
It all comes down to the kindness of strangers who want to do something for someone. It happens.
One must unravel the idea of "searching to exchange/receive body parts" over the Internet because that takes one into some potentially dark territory that is illegal, and not what looking for a living donor is about. For example: https://www.dailymail.co.uk/news/article-11461933/Mexican-woman-killed-organs-flying-3-000-miles-Peru-meet-man-met-online.html
Also, if we use the term “Frankensteinish”, we contribute to the misinformation and disinformation about organ transplant because a lot of people still hold some really odd thoughts about the procedure. I have been called Frankenstein. I have been called "Living Dead Girl" by people that simply do not understand.
Anyway, in this long meandering post, I just want to say, that yes, people do search out living donors and it is a lot of work to organize. If people want to do that and are great at campaigning, God love'em! There are not doing anything wrong and transplant programs advise that this is an avenue to investigate.
Some of us can't or don't feel comfortable doing it. Others can and pursue it. Good luck to them.
I mean this all in the nicest way too! But I probably just confused more things...
Thank you :2thumbsup;