13 year old just diagnosed

[Jack]

I do seem to have experienced most of the spectrum over the years, but there are still people on here with things that I have not had. I'm not sure that I want to collect the full set!

As for your remarks - I try to make allowances for people stuck out in the colonies.

[Sangye]

I agree that with Wegs, it's better to collect one piece at a time. Sure, getting a full set all at once might be less expensive-- one giant hospital stay vs many shorter ones-- but it's nice to spend a little time with each new piece and really enjoy it. The great thing about Wegs is that you can add pieces in any order or combination.

Being an experienced collector, Jack has also become skilled at trading pieces of his collection. He once made an excellent kidney trade and got a great deal. Really enhanced his collection.

[Jack]

The Kidney deal was the best ever!

Before that, I was on the type of dialysis called CAPD (you might like to Google it). That was good because it interfered less with my daily life and I was able to continue to work. However, I was not exactly thriving on it. I was becoming weaker, feeling ill much of the time and would sometimes faint.
Not too sure how much longer I had left if I had to continue.

The usual wait for cadaver transplant in this country is between 2 and 3 years if you are Caucasian, but much longer if you are Black or Asian. I had to wait for 18 months so consider myself lucky.

There is a long standing debate here over the transplant system. Currently doctors need to obtain the permission from next-of-kin, but I think that it is often difficult for them to raise the subject. An alternative would be an opt out system that would assume agreement unless an objection was made.

What are the rules for cadaver transplants in other countries?

[Sangye]

In the US, you can put a sticker on your driver's license that says you want to donate your organs in the event of your death. You can specify particular organs, tissues or all. Otherwise, unless someone has indicated it in a personal will, it comes down to the same difficult conversation from doctors.

[Jack]

We have a similar system for registering your personal wishes, but it cannot be used to give the go ahead to donate. This still requires next of kin consent no matter what your wishes were. I think that the only reason for registering is that it puts pressure on the doctor to ask the question.

I doubt that anyone would want any bits of me once I've finished with them, but they are welcome if they can find anything still working!

[Doug]

As for your remarks - I try to make allowances for people stuck out in the colonies.

You know what we say here: "Give them an inch, and they'll take a mile." But that's only because we resist metrification to any significant degree because of some idiot notion that the rest of the world should follow out lead. What?!

[Doug]

As for transplants, best bet is a live volunteer donor. Availability isn't much better than cadaver donors, I'm sure, and there never are enough.

That business of growing parts from stem cells strikes me as a great avenue for the future, if it can bring about organs created from stem cells created from cells taken from the recipient. I am am bit concerned that there will need to be another way of growing them other than on the backs of mice, in the way an ear has been, say!

Gad! I think donors by a check mark on their driver's license is a great idea except for these things: 1. Who determines suitability for donorship? No one. 2. How are people with HIV, AIDS, Hepatitis in its various stripes, etc. weeded out of the donor organ system? They aren't.

I'd think controls at least as stringent for blood donors would apply to organ donors.

[jola57]

I have heard of people advertising for kidneys on eBay and craigslist. As long as no money changes hands it seems to be Ok. I would assume that all the necessary test would be done. When I worked in transplants eons ago, we only did the donor and receipient typing, we didn't worry about HIV, in those days we didn't even use gloves to process the blood. How the world has changed.

[Jack]

An update on my pred reduction regime -

Well, I've reduced from 10mg to 7mg over the past 3 months or so and have now taken stock of the effects.
My walking and leg strength has improved by a fraction, but on the down side my hearing and eustation tube problems are worse and my cough is also worse. On top of that, I had a bit of crusting in my nose this morning and a nose bleed! This is the first time for many years and used to always be my indicator of Wegener's activity so I'm running scared and have reverted to 10mg. I feel safer at this level in spite of the problems it brings.

[Sangye]

I'm sorry that you had to go back up, but glad you know how to catch the early signs and prevent a flare.

After losing a month in the pool, I just got back in last week. I felt so much better moving again. Don't know if I can get in this week--it's a busy one, and I need to conserve my strength to get through it.

I hope you can find a way to get stronger, Jack. There must be something that would work for you.