Sarah’s Upcoming Big Operation!

Well, 2005 was certainly a year of highs and lows for David and I, from our wedding in April to a lot of time spent in hospital from July to the end of November where I attempted to beat one infection or virus after another. By early December we were both back home and I concentrated on gradually building up my strength, while getting back to a normal (ish) life. (Snails and tortoises are now lining up to race me, savouring the anticipation of a sure victory.)

Then, on December 19th, we heard from the hospital that I have been accepted onto the list to wait for a double lung transplant.

My operation will take place in Newcastle at the Freeman Hospital, which has one of the most experienced transplant teams in the country. We have been up to see them a few times in the past couple of years. The first three times found me too well but when I last saw them in October it was clear to everyone that the time had come to be listed.

About transplants:-
Someone who has been thoughtful enough to register as an organ donor and inform their loved ones of their wishes could give me a second chance at life. It is a big thought and the word ‘grateful’ will become a bit of an understatement when the time comes.

How did it come to this?
I have been very lucky to have Cystic Fibrosis relatively mildly and as you know, I have led a pretty active and full life. Apparently young women with CF can go downhill quite rapidly and I have been lucky that my rapid decline has taken place in my 40s, rather than my 20s.

When will it happen?
I don’t know when the operation will be. There are over 200 people waiting for a new set of lungs and although people with my blood group A+ tend to have a shorter wait, my blood contains a number of antibodies which will reduce the number of potential donors I could match with. I could be waiting months or even a year or so, but I could be called at any time.

The call itself is likely to come at night and give us 15-30 minutes to prepare ourselves before the ambulance arrives to take us to Newcastle.

We won’t know if my operation is to go ahead until checks have been made on both myself and the donor’s lungs to make sure that I am fit enough and the lungs are healthy enough and are a good match for me. It is possible that we could have one or more ‘false alarms’.

The operation and beyond:-
After the call comes and if the new lungs are suitable, I will have the operation, after which I will be in intensive care for one to three days if everything goes well. Then I will be moved to a special ward for recovery and rehabilitation – learning to use my new lungs. It is hard to predict how long I will be in hospital, but if all goes well it should be a month or so.

What are the risks?
A transplant is a big operation and only a last resort treatment but The Freeman has some pretty good statistics. Currently 85% of their lung transplant recipients with CF are alive a year after their operations; 75% are alive after five years and 50% have survived eight years or more. Most people experience very good quality of life post transplant.

A bit of science:-
My new lungs will not have CF but the rest of me still will. This means that once I am recovered I should not have to do daily physiotherapy but will still need to take the pills with my food and treatment for my diabetes. I will be prone to bouts of rejection and infection but this is apparently normal and the many pills I will be on should hopefully keep these in check.

Reflection:-
If the transplant is successful, I will be granted another chance at a full life and I look forward to doing a lot of the things I used to enjoy and hopefully more. Being ill and slowing down over the past few years has taught me to appreciate life and take less for granted. On our second honeymoon in the Lakes in June we went on a couple of walks. Because I couldn’t move fast I was able to appreciate the flowers in the hedgerows where before I would not have even noticed them. I may be on the waiting list for a long time so I don’t intend to put life on hold. David and I intend to do as much as we can to lead a normal, happy life within our limitations, and keeping in touch with our friends and family is an important part of that.

Information:-
If I’m home and well enough, I’m happy to answer any questions about the transplant and anything else. Email or call!

Please sign the organ donor register – www.uktransplant.org

Thankyou.