Ben's back.
Yes, just ten days ago I was blogging away saying how bad it had been leaving this thing for two months and suddenly, BANG!, I'm back in hospital, Paul's taken over the blog site (I think he should do it full time he does it so well). My "Half Wrap Fundoplication" has been put on hold and the financial world as I knew it has, well, partly collapsed, for the short term at least, until things settle down. Won't go into the details but let's say we're a bit poorer than we were a week ago and we hope things will get better.
Janyne and I felt we might just sell up everything, buy a 4WD and a caravan (or trailer if you're in the US) and piss off. But of course we won't. Far to sensible for that. Anyway I have my "Fundo" due 2nd March and I am sure that will make things better. Less risk of infection and rejection.
So what's good. Everything is good. Little experiences such as this just bring back the importance of what it is to be alive. Not just exist but to be ALIVE! In the end, no matter how bad you feel, how ill you are, life doesn't owe you anything. No special favours just because you're feeling sorry for yourself. In the end, no one really cares about all that. No one but you can make you better. Only you can make a difference to the way you feel. Thank God your family and loved ones can help you through it. No one likes a pain in the arse ("ass" for US viewers)so think positive and get on with it.
So what have I done?
Well last night around 10.00 pm I made a decision I have been agonising over ever since my lung transplant. I wrote a letter of thanks to the family of the person who donated my lungs. Now to those of you who haven't experienced this, that may appear a simple matter of course, but it is one of the most difficult things to grapple with. Remember someone has died in order for me to live.
I don't feel guilty about that. That person would have died anyway. But imagine how that person's family and loved ones must have felt at the time. To think that various body organs of the one they loved are going to different parts of the country, sure, hopefully saving lives, but how do they know? I, we, who have received those parts and are now alive because of that owe a great debt of gratitude to those donors and their families and to be able to express that gratitude is more difficult than I had imagined but something we all, we transplantees that is, simply have to do when the time is right.
Last night the time was right. One day I may publish my letter. For now I want it to be read by the donor family first. It is for them. No one else. I would publish it only if I felt it could help others like me to do the same; thank their donor families.
But isn't life strange? I got to bed about 11.30pm, woke Janyne and asked her to read it. Here it is, the most emotionally difficult thing I have done in a while, and Janyne's first impression is that I should remove the word "corticoid" and replace it with something the common man/woman could understand. Forget the outpouring of emotions that I have built up over nine months; just concentrate on one word, used twice I must hasten to add, but in the end, just one word. See why I love her so much? She keeps me sane.
So I am feeling positive. The massive doses of steroids (rejection) and antibiotics (infection) leave one a little strange but that will pass. My lung function is better than it has been for a few weeks and everything else seems to be going in the right direction. I have also had a change in one of my immuno-suppressants from Cyclosporan to Tacrolimus. Paul has already explained these drugs in previous posts but all these changes have an effect on one's metabolism and it takes time for things to settle down.
I am back for a check-up on Thursday 15th February and we'll see how we go then.
Well, for now I'll enjoy my glass of wine and then off to bed.
Talk again soon,
Ben
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1 comment:
What a week indeed! So happy that you are back home & feeling better. Of course, we were all on edge as we waited for the news. Thank you to Paul for frequent updates - especially at a time when he may not have felt up to it.
If and when you decide to publish the letter to your donor's family, I would be very interested in it. I would completely understand though if you felt a need to keep it private and personal.
Yes, the steroids do play "tricks" on us, don't they? My surgeon has been weaning me off of prednisone in preparation for by Feb 28th Nissen (a full-wrap fundoplication). So, I've gone from 80mg daily to 20 now (in increments of 10mg - not all at once - I think that would kill a person). And the effects of the decrease have actually been more pronounced and remarkable than being on a consistently high dosage. Peculiar, and at times difficult to handle. My breathing is noticably worse with this decrease. I return to the pulmonologist on the 21st for a full set of pulmonary function tests.
One more thing - we're much poorer also. We have had that same conversation about selling everything. In fact, we have started sorting through all the "stuff" in our attic and making a "sell it" pile. We're also talking about selling the house. Stuff just does not mean anything, does it?
Loved hearing the good news, I'll follow up with details of some of this via email so as not to bore everyone else to tears. Rebecca
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