Quality of Life vs Life Expectancy

I decided it was probably better if I focused on getting the ball rolling on my own testing than things I could not conrol (like government regulations and our health care system). That meant getting my dads team to do his transplant paperwork.

I contact the live donor team down at St.Michaels hospital who send me copious amounts of paperwork. ALOT of questions that I wasn't expecting (for example, if I had been with any male partners who may have been in any same sex encounters). Hmm, I'm not sure of that one. It's not really a question I have ever asked anyone before, partner or not. I do the best I can with answering all the questions and fax it back in. The next day I receive a requisition for blood work and they would contact me as soon as dads paperwork is received.

Within a few weeks (quicker than I thought) my team is put in place. Excellent - this is what I like. They will contact me once dad is accepted into the tranplant program. Why wouldn't he be?

Every 2 weeks or so (sometimes sooner), I call the office. At somepoint they are going to either;

A - Receive dads paperwork

B - Be so annoyed with me that they start contacting dads clinic specialists to get me off their backs.

Either way, I feel like thats a win/win situation for me.

Dad seems to be adjusting fairly well to dialysis. The clinic is really happy with his site and the instruction/confidence he has in doing the transfers at home. You see, normally a family would have a few weeks (3-6) of training prior to the dialysis catheter being put in. Mom and dad had zero. As they gradually work up to being able to do all transfers at home, the clinic was monitoring the majority of transfers. Eventually he would be able to work up to doing all transfers on his own, 3-4 times a day and nightly.

Each transfer takes approximately 45 minutes. This maddened me too. Now his whole day was worked around each transfer. But he should start feeling better. With cleaner blood (since his kidneys were only functioning around a 7 that meant he had 93% extra crap he was circulating) there is no reason why he shouldn't start to be right?

Dad was having good days, and bad days. He started to walk Mac again daily, have more energy, there was a small spark back in him. I assumed that after a few weeks of being on full dialysis, that this positive health incline would continue to improve. Boy was I wrong.

After a couple of weeks dad seemed to flat line. I was confused, yet again. I couldn't understand why he wasn't continuing to improve since the dialysis would continue to clean his blood and do the work the kidneys were not. In my mind, and from the information we had, that is what seemed logical. But, as I had mentioned, I was no longer going to go to dads doctors appointments until I could keep my mouth shut and my emotions in check. I still had alot of work to do in that department. I was sending my mom in with all the questions. One major question, why is he not continuing to feel better? We would later learn that dialysis just sustains what your kidneys are currently fuctioning at. If your lucky, it will improve slightly. In my opinion, that is no quality of life. My dad is only just 61. I cannot fathom remaining "as is" for the rest of his life. Why wouldn't our health care system want to start dialysis earlier? Why do they now wait until someone is functioning at less than 7 or 8% compared to 15% a year ago? Because whether a persons kidney function is 15% or 8%, or even less, statistics show dialysis does not prolong a patients life expectancy.

BUT WHAT ABOUT THE QUALITY OF LIFE?

Definition of Quality of Life:

The standard of HEALTH, comfort, and happiness experienced by an individual or group.

"the things that are needed for a good quality of life".

Definition of Life Expectancy:

Life expectancy is the number of years a person would be expected to live, starting from birth (life expectancy at birth) or at age 65 (life expectancy at age 65), based on the mortality statistics for a given observation period.

Well in my opinion, our health care system needs to revisit the definitions of life. If someone is suffering, their standard of health is clearly compromised regardless of their age.

I better stay away from my dads appointments still, I'm fuming!