Quality of Life vs…
Posted by Raeann Blake (Author) on December 30, 2013
Well it has been a while, hasn’t it? Since I was last here the days have been filled with some hospital time, some time feeling not so great, and some feeling okay. I’ve worked some on the books as has my editor who is currently working on ‘Michael’ (coming real soon). I have reached the point where I can no longer work up to my own personal standards in a full-time capacity and have been forced to reduce the number of hours I spend working at the day job. The passing time has not been easy as you could guess from my conspicuous absence from Facebook, Twitter, and this blog.
As most of you know, I’ve also been through some very extensive testing for evaluation of my suitability for a lung transplant. Thankfully I am nearing the end of that process and have been approved to be placed on the list although I would be considered a high-risk candidate and rejected by most transplant facilities. Which brings me to a question that I have asked myself several times since all of this started but have never felt as deeply as I do with the decision I face now. When does the quality of life outweigh the quantity of time you have left to spend with those you love? Knowing that there is no guarantee of another day with or without the transplant makes it even more difficult to answer that question.
Depending on the final tests, I may require the permanent placement of a feeding tube to be put on the transplant list. One of the earlier tests showed an issue with reflux up to the point that it could reach the juncture with the windpipe and thereby run the risk of food and/or acid seeping into the lungs and cause either damage or aspiration. I personally think their initial test provided a false result, but who knows. The first of the last two tests came back normal. The other test is not until Jan. 9th and 10th. But, in the meantime, I have to make a decision whether I will or will not agree to the placement of the tube if it is deemed by them to be medically necessary. If I say ‘yes’, I am on the list. If I say ‘no’, I am not. On the surface it sounds like a no-brainer. Of course I will accept it. Well…hang on a minute.
Let’s think about this. While a transplant is my best chance of living more than one or two more years, it is not a guarantee. I may not make it out of the operating room. I may reject the lungs in one day, one week, one month. And while I absolutely LOATHE dragging this oxygen tubing around behind me 24/7 and would enjoy nothing more than chopping it into tiny pieces, I would be swapping that for not only managing the anti-rejection medication, but also a myriad of procedures and rules that transplant patients must adhere to. But, if the tube is needed, then I’m also adding all of those pieces required to “feed” and hydrate myself several times a day and make sure I carry all the supplies around for that wherever I go. Looking at it from that perspective, the oxygen tubing doesn’t seem to be so evil after all. It’s at least six of one or half-dozen of another. Or to put it another way, damned if I do and damned if I don’t.
And what about the food? This means nothing by mouth…EVER. Fried chicken with white gravy. Steaks. Hamburgers. McRibs! Burritos and tacos. Black-eyed peas and cornbread with fresh tomatoes and corn on the cob. Homemade stew. Pecan pie. Ice cream. And let’s not forget…sweet tea and coffee. Holidays must be fun smelling all those wonderful smells and watching the “mouth eaters” feast while you slink away with your little can of food and a syringe. You get the picture…or at least the picture in my brain.
So what is the answer? Is it worth it knowing that it comes with no guarantee of more time knowing that the high risk of complications could actually cost you time?
I do not know. I just know I have to make a choice. I could choose to accept it and then not need it, but I can’t count on that. If I say ‘yes’ then I have to be willing to stand behind that decision, regardless of the consequences. I just don’t know.