See…I knew that was a train!
Posted by Raeann Blake (Author) on September 5, 2013
In fulfillment of my promise that I would most surely complain during this journey, here I am. On my last visit to UT Southwestern, we were given a little hope, a little tiny beam of light at the end of the tunnel. It was called Endoscopic Bronchial Lung Volume Reduction. To make a long story short, they wanted to go in via the throat and use a sealant to seal off the worst damaged areas which would then die back and give the remaining parts of the lungs room to expand. No incision, couple of days in the hospital and in about 3 months I would be rocking and rolling. Well…we went back again yesterday and found out whoever predicted that the light at the end of the tunnel was often an oncoming train was right. I am not a candidate for this. First my FEV1 is 17% and it needs to be over 20%. The damage to my lungs is too diffuse rather than concentrated more in the upper lobes as it would need to be. To do that surgery would actually make me worse. So the only option I have is the transplant.
Sometime within the next few weeks, I will be running back and forth from the west side of Fort Worth to UT Southwestern in Dallas every day for 6-7 days straight for a whole myriad of tests. Everything from colonoscopy, to heart cath, tests and scans for brain, liver, lungs, kidneys, bones, and heart. The list they gave me is heart catheterization, echocardiogram, head MRI, EEG, skin tests for TB and skin cancer, Mammograms, bone density scan, etc., etc. I also have to see a cardiologist, transplant surgeon, neurologist (brain and nerve specialist), pulmonary specialist, gastroenterologist, nephrologist (kidney specialist), and dietician. And if that’s not enough then along comes a social worker to do a psychosocial assessment to assess my ability to comply with a complex medical regime as well as my social support during the immediate transplant period and for a minimal of four to six weeks after the transplant. And THEN they get to decide if it is indicated that a psychologist/psychiatrist should also be consulted to help them further assess my needs. As if by then ANYBODY wouldn’t need a psychiatrist. How many points do you think I would get taken off for the “and the horse you rode in on too” remark that I’m bound to make before we are through?
Then and only then will they compile all that information (assuming they didn’t find something that is prohibitive like any kind of cancer) and present it to the “Selection Committee” who has the power to deem whether or not I am an appropriate transplant candidate. Only then can I go on the transplant list and we would wait for somebody who is a donor that is approximately my size with good lungs and blood type which could happen in days, weeks, months, or years.
And if this all comes to pass then I would be in the hospital for 2 weeks, have to go to the hospital 2 x week for a month, then 1 x a time for month, then I think he said 2 x a month for a while then once a month for a year. Off work for 4 months so worry about the bills. Worry about rejection and anti-rejection medication for life. His assessment of my life expectancy if we do nothing: 3 years. Average life expectancy after a transplant: 6 years.
Oh…and I have to gain 10 pounds and tone up the muscles in my legs.
Now for those who know me, they will already know this. I am extremely claustrophobic and I have control issues (I guess that’s what you’d call it) to the point that if you ever tie my arms down you better damn well be gone when they turn me loose and hide very, very well for the rest of your life. Now think about this surgery. I will have to be on a ventilator…which is the one thing I have listed in my advanced directives that I do not want. When I’m on the vent, they’re going to tie my hands down. They might fix my body, but my mind will never be the same.
Just shoot me now!