Dialysis lifestyle post-transplant

[stauffenberg]

Professor Gregory's book, "Eye and Brain," describes an interesting phenomenon in patients who have been blind since birth but have been restored to sight by an operation on the optic nerve.  While these patients quickly learn how to live as sighted people, they quickly revert to the behavior of blind people, and they don't bother turning on the lights when it gets dark, they prefer to feel their way along the walls for guidance rather than look to see where they are going, and cross the street with their old white cane held in the air to warn motorists, not looking to see whether they have a green light or whether there are cars coming.  Gregory theorizes that they have become so acclimatized to living like blind people that even when this is no longer necessary they still cannot change their ways.

Just like those blind patients, I find now that after eight years on dialysis and three years with a transplant, I have still not fully returned to my old way of life prior to renal failure.  I tend to stay home much more and live more passively than I used to, just as I had to do during dialysis.  Even though I can travel now, I don't, again persisting in the old way of life I developed while on dialysis.  I wonder if this is the same phenomenon as Gregory observed, and if other transplant patients have experienced it?

[MIbarra]

It took a few weeks for my transplant to begin working. I stayed on dialysis for about 3 weeks. The fourth week my doctor said we need to try and let the kidney fly on its own or we'll never know if it is going to work. I was scared the first day I didn't go to dialysis and very apprehensive. I didn't want to get sick again. I started retaining fluid again and wanted the security of dialysis, but my doctor was firm. After about a week without it, my creatinine begin to decrease on its own. There are many days when I'm at work around 3:30 and I get quite nervous and upset thinking I have forgotten to do something. Then I realize, Oh my gosh! It's a Monday, Wednesday, or Friday and I am late for dialysis and haven't put on the lydocaine cream and I need to get there right away or I'll be really late getting home. I have to take a breath and say to myself, oh yeah... I don't have to do that right now! So, I kinda get what you're feeling. Old habits die hard?
 
I do have to say though, I enjoy being able to travel and make plans like I didn't get to before or leave for a road trip on a Friday night at the spur of the moment.

[jbeany]

Yikes - I've had a decade of living at half-speed because of my failing kidneys.  I hope if I get a transplant I can make the adjustment back to working full time and having energy again!

[monrein]

That's very interesting and I'll be curious to see how I react if and when I get a second transplant.  During my first 5 years on dialysis, before my first transplant, I was young (26-31) and did everything my docs told me regarding diet and fluids etc. but I did try to keep doing most of the things I did prior to dialysis.  I worked full-time, cut my lawn although it took 4 times longer than before, went to clubs with my friends etc.  Once I was transplanted I crammed as much as possible into every day, went back to school, expanded my garden, supervised several renovation projects at the cottage, went white water canoeing,  traveled to France once a year for about 6 years and basically never sat still.  I felt that I had to do all my living without procrastination because I might run out of time and be back on dialysis.  For the first several years I marveled that I could be away from my machine.  Nxstage wasn't around. Then I got more used to being free but still never sat around much.  I've been known to garden by flashlight.  My husband doesn't like gardening but my neighbour offered me a job in his garden.  Of course I was too busy.
Now I have to remind myself that I'm not well because my brain keeps pushing me to overdo things and I find myself thinking that I've become lazy.  One of the best things I think I did was retire at 50 because I wanted to spend more time with my mother-in-law (who will turn 90 in October) and the past four years I've been able to do my own stuff without trying to fit it in around work.  I'm sad that right now I can't help out my m-i-l but we go out for lunch regularly and she tries to help me instead.  She keeps telling me that I have to hurry up and get myself sorted out because she wants to go back to France and I'm our interpreter.  I'm working on it.  I'm older this time around however so we'll see if I stay close to home.

[RichardMEL]

That's a very interesting idea. I know right now I am hanging out for that working transplant because as soon as I can I have PLANS BABY to get back to travelling the world, and going places and doing stuff and hopefully having the energy to boot as well as drinking all the stuff I have to ration now

I think though knowing my personality type I'll likely take some (hopefully positive) hangovers from dialysis with me - i'll be much more conscious of my diet for sure - living with restrictions and see how the labs can fluctuate when you deviate certainly has shown me how important that is (though I will NOT miss those dieticians... well except the cute one with the nice firm.... dietry outlines). So I think I might be more considerate of that. I think I'd also try to keep up with exercise more.. not go crazy or anything.. but I think it's healthy to have 20-30 minutes walk every day and I do my best to manage that now... so hopefully that might be something to carry over.

Overall though I am certain two things will stand out for me:

1. Life is precious and potentially shorter for me - so live now don't die wondering - make the most of it when you can

2. A transplant, when it happens, would be a miracle I will cherish each day it works knowing it could be the last and NOT take it for granted!!

Sometimes I want that more normal life so badly I feel like I can almost touch it.... and I know it is a matter of time till that call comes.. And hopefully when it comes and I get that kidney it will work and work for a long time. It's not a cure, but a treatment option that I want to experience!

Oh yeah, I am sure I will definitely have a thought about dialysis as in a TTS afternoon when I would normally be dialysising I KNOW I will quietly thank the universe when I don't have to attend! I'm sure initially though I will be thinking "hey I need to leave work now and get to the unit!"- frankly I'd LOVE to be in that situation

[petey]

Marvin was on dialysis for 5 1/2 years before he got his transplant.  When he got it, he returned to an active, busy, full lifestyle.  He went back to work -- and loved it!  He was so active that I actually had trouble keeping up with him.  He truly lived like a man who had been given a second chance, and he watched his health (and his new kidney) like a hawk, too.  It was an absolutely wonderful three years and three months.  Then, his "new" kidney developed the same disease that destroyed his original kidneys, and Marvin had to go back on dialysis.  He's been back on dialysis now for 4 1/2 years.  But, this time on dialysis, he decided that he would live like he was still dialysis-free, and, for the most part, he has.  He's still active, busy, and crams just as much as he possibly can into each day (the first time around on dialysis he turned into a home-body, very limited activity, etc.).  The second dialysis round for him has been good, but we're still waiting for his second transplant.