It feels, in some ways, as though I’ve been adopted by a family, but they forgot to come and collect me at the orphanage.
Or as though I have been injured somewhere along the journey to the summit of Mount Everest. I have put the call for help in and I know it has been received, but I don’t know if anyone is actually coming to get me.
It has been 14 months since I was granted an audience at the transplant unit at Beaumont Hospital. This was a formality. All my tests were complete, and the surgeon signed off with his esteemed opinion that I was fit and healthy (well, relatively). I was then officially pronounced “active” on the transplant list.
Since that day, nothing. Not a phone call, not a Christmas card, no general mail-shot from the hospital, no text to assure me my name is still in their files somewhere.
This irritates me greatly. I know they communicate with my medical people every month and I know that my bloods are sent to Beaumont every three months for regular testing for antibodies.
But the communication I crave is something more direct. A line between patient and transplant coordinator. I know they have bigger things to worry about in the immediate activity of a busy hospital ward, but still, a little initiative for the hundreds of people on the transplant list would not be difficult to arrange.
An emailed newsletter every quarter, perhaps; an update on how many transplants they have carried out recently; any indication to the patient that there is a whole hive of life-saving activity ongoing in that unit and that you will eventually have your turn to benefit from it.
I know some of you will be thinking ‘why doesn’t she tell this to someone who can do something about it’. I have. I mentioned it to one of my consultants some time ago and he agreed to bring it to the attention of his colleagues in Beaumont.
This is the Irish health service however. Therefore, the best I can hope for is that some action might be taken in the next decade.
I will most likely require a second transplant in my lifetime. Maybe by then, Beaumont will have an app for the futuristic version of the iPhone, sending an alert every time an organ is donated.
Then, that phrase I used to rhyme off when I was young would make a new kind of sense.
"Every time a bell rings, another angel gets its wings".
For trivia kicks, name the film in which that line appears...
That's right. It's a Wonderful Life.
Love the new look of the blog.
ReplyDeleteI was thinking as I read about the lack of communication, poor Regina, stuck dealing with the Irish Health System, its different for me dealing with Saskatchewan Health and its transplant program. Ha!, no its not. I spent 2.5 years moving from being a candidate for transplant to being on the transplant list. During that time I heard from them only when they wanted more blood, go see the cardiologist, travel 250 Km to Saskatoon to meet with a Vascular Surgeon, get the EKG, get the x-rays, etc. Everything on that list twice because it has to be done every year, and the letters will be going out next month to start the process again to make sure I am still qualified. Only difference is I have blood drawn every month for anti-bodies.
I would be nice to have more contact with the transplant centre, but I know their funds are limited and from August 09 to May 2010 the health minister was trying to shut them down. One young women who was waiting for a transplant and had a living donor lined up even shamed the minister by doing a manual PD exchange in the lobby of the legislative building (she had to do manual because she was too far gone to do cycler exchanges).
Different countries, different Health systems, but so much of your experience seems oh so familiar. Sending you a email with my email address.
J Harper
Regina, SK
J Harper - I think health systems all over the world probably regard the person on dialysis as being a nuisance. We just won't do the decent thing and die already! I have to have a heart echo done again shortly, but that's the only test I have to repeat after my first year on the list. Apparently, it used to be policy in Ireland to repeat several of the tests (x rays, dental, etc) after a year, but they've relaxed that now.
ReplyDeleteYou don't want an e-mail newsletter. Even after you get your transplant, you'll still get it. For years. The unsubscribe link will not work and you'll also start getting newsletters for a plethora of related services.
ReplyDeleteNice new look!
Holemaster - A balance would be nice. A little communication prior to the event, only the occasional hello afterwards. That would suit me. I like my new look blog also. My designer assures me it is both "crisp" and "fresh"
ReplyDelete