Wednesday, May 09, 2012

Brother can you spare me a lung?

This article is about a South African author's quest for a lung transplant due to Idiopathic Pulmonary Fibrosis (IPF), the same disease that I and Hélène Campbell were stricken with before our transplants. I can very much relate to David Carte's situation and I hope he get's an early call for his transplant. I had mine ten years ago and life has never been better.

 By David Carte, MoneyWeb

JOHANNESBURG - Glug! Any day now I shall be told whether or not I have made it on to the list of people waiting for a lung transplant.

I should be in suspense. As my original lungs slowly shut down because of scarring that medical science still does not understand, the transplant is my only hope for a longer life and a better quality of life.
But I am in two minds. Should I get the transplant, it will be dangerous, painful and downright harrowing for years, not just for me, the patient, but for my wife, my three grown children and six grandchildren.
This really could be my Everest, taking me into the death-zone quicker than intended.
The present lungs should function for a couple more years. They can no longer cope with sailing the Hoby or scaling theAmphitheatre but they do permit me to work and to take a 1km- daily snail walk. I can even do a couple of hundred reps with 4kg weights.
Hanging up the washing is now equivalent to the 5km-run I did thrice weekly three years ago, but I am living, functioning and looking surprisingly well for one in the Valley of the Shadow. I could accept the alternative to the transplant – gradual decline to a last gasp!
We are therefore resigned on the transplant, one way or another. It is all in the hands of the Almighty.
I have met two people who underwent successful lung transplants and both are an inspiration.
The first was Merwen-Mellet, who was the “M” in BJM stockbrokers. Merwen underwent his transplant in the US. The first one was not a high-quality organ. His body eventually rejected it but at least the failed lung gave him time for doctors to come up with a second, sounder set of lungs.
Even on oxygen 24-hours-a-day, Merwen used to find brushing his teeth hard work. Today, five years after the operation, he walks and rides his bike on the slopes of Table Mountain. He even dives with his new lungs. Merwen is such an enthusiast he has actually sponsored two other transplants.
Then there is Wendy Wallner, an old friend dating back to our twenties. She has lived in Austria for the past 35 years. She had lymphangioleiomyomatosis (longest word in the medical dictionary?). She too was totally dependent on oxygen eight-litres-a-minute and 24-hours-a-day. She could hardly cross the room.
Two months ago she wrote to me, “At no time were there any problems with my new lungs.  They work wonderfully! My blood-oxygen level is now 83% - a healthy person is between 80% and 100%, the latter being quite rare.  
“It has been truly a miracle. I feel so normal now. I can go for long walks in the mountains - we have just had my cousin here and we spent the past two days hiking up two different mountains for two  or three hours, having a meal in the wooden "alm" there and then whizzing down on toboggans. The altitude and the cold didn’t bother me at all. I have taken up cross-country skiing too and Robert and I do that every weekend. I take the dog for a walk every day, I go to yoga once a week. I went swimming in August in a lake - the first time for years and I was able to go rowing which I like very much. I go shopping, go out at night. If there is a large crowd, I wear a mask to protect myself from germs that could be floating about. No big deal.” 
Wendy and Merwen will hopefully meet each other at the annual transplant games, the Olympics for people with second-hand lungs, hearts and kidneys worldwide. The next one is in Durban.
SA’s only lung transplant team at the Milpark Hospital is run by Madiba’s physician, Paul Williams. The members of the team are:  Greg Hammond (surgeon), Aviva Smulowitz (physiotherapist) Tascha Meredith (psychologist) and Marlize Frauenhof, co-ordinator.
I have a user’s manual which informs me that from 1963 to 1978 about 40 lung transplants were performed. Only one recipient made it out of hospital and he died after 18 days. The discovery of cyclosporone in soil fungus gave the world an answer to transplant-rejection. The survival rate has since increased dramatically.
Still, the manual warns: “The decision to receive a transplant organ is a major one and should not be made without a great deal of thought…. Transplant is a major surgical procedure which involves some degree of risk. Second, transplant requires a sincere and absolute commitment by you to maintain a rigid post-transplant regimen, which needs to be followed for the rest of your life. Many patients find that the schedule of following a strict diet, medication, exercise and doctors’ visits requires big changes in lifestyle. And thirdly the medication you take after transplant can have serious side effects, which may cause other medical problems.”
My beloved grandson Matthew (11) gave a speech to his class lamenting that while thousands of people are on waiting-lists and many are dying, every day perfectly good organs are buried and burned. The speech made it to Facebook and thereafter as the lead letter in YOU magazine. Matthew was subsequently interviewed by Wackhead Simpson on Highveld Stereo, so we are hoping for a surge in the number of donors.
One of the transplant doctors said it was unrealistic to expect government to change the law to allow organs to be harvested automatically from the brain-dead in the absence of an “opt-out” bracelet. This applies in several European countries. I am told we are not a progressive country that way.
I do hope that some readers will see that it is better that part of you lives on, giving life, in the event of one’s untimely demise and will quickly volunteer as donors. One donor can save seven lives.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today! Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa,
United States,
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

No comments: