STRONG LIKE BULL!

Posted on January 10, 2013 by Gale

I woke up around 2 a.m. feeling uneasy and unable to get back to sleep. Every now and then that old transplant boogeyman rears his ugly head and prevents me from getting back to sleep. I went in and gave him a good hard whack over the head  by taking one of my boogeyman whacker pills, better known as Ativan. These will take away some of the anxiety and help me settle down but they don’t always make me feel sleepy.  It is now 4:13 a.m. and I feel much calmer so I’m trying to convince myself that I’m tired and I need to go to bed but I don’t believe me.   I had kind of a mixed up day emotionally so I can go easy on myself for my insomnia. I’ll catch some ZZ’s later in the day if necessary.  The reason for my jitters?  Well it’s because of a conversation I had today with my respirologist in Toronto.  I know that my condition is very serious .. the health care team in Toronto has always been very up-front about that.  Pulmonary Fibrosis (PF) by itself is serious, Pulmonary Hypertension (PH) by itself is serious.  Normal pulmonary pressures should be around 30..he told me yesterday mine is 98 and is classed as severe. So in addition to the possibility of respiratory failure I’m also at risk for right-sided heart failure if it the PH gets bad enough. 

The good news though is that my heart is strong and so far holding it’s own against my poor old diseased lungs.  My doc said that he was surprised when he looked at my ankles and legs because usually people with pressures as high as mine have swollen feet, ankles and legs but mine are completely normal.  Both the PF and the PH will be resolved once I have my transplant.    However with this horrible lousy disease there is always a but.  The but in this case is what would happen IF my disease starts to spiral downwards fairly quickly,  to the point that they might consider putting  me on a ventilator. Could be that will never happen and I will receive new lungs before I get that bad. Still my doctor had to discuss with me all possibilities so he proceeded to inform me of studies that ascertain that lung transplant candidates over 50 years of age do not have good surgical outcomes if they are vented when they go in for transplant surgery.  I’m not sure why that is, I guess I would have to read their studies to understand the age 50 cut-off point but there it is.  Therefore if I were to be put on a ventilator, I will cease to qualify and I will be taken off the transplant list immediately.

If I get into that precarious a state of health I have to make it clear to any treating physician that they may not put me on a ventilator for any reason, then the transplant team will admit me to hospital, put my status at “level 2 and rapidly deteriorating” and try to stabilize me with antibiotics and steroids till my health improves or lungs become available. If these extraordinary measures do not work and I continue to decline, I will be given palliative care and made as comfortable as possible till the end.     So, needless to say, this was not a fun discussion *grimace*

After this we  talked about and were both very enthusiastic about my prospects for successful transplantation.  I expressed my sense of anticipation about getting a new set of lungs and being excited about what else this year has to hold and he also expressed his belief that he thinks this is going to be a good year for me and that I will do very well with the surgery.
Of course that’s not a medical promise but I do know that people who go into this with a positive outlook and follow the med and hygiene routine religiously afterward, usually do very well.  That’s not to say there won’t be bumps in the road, there may very well be. Yet I know  I have the spunk and the spirit and the passion to deal with any hurdles that dare to get in my way!  Even the ‘transplant boogeyman’  *Pounding on my chest* I strong like bull!  I know, I know .... it’s a gorilla that pounds on his chest but it’s my blog so I can be a chest pounding bull if I want. *grin*
Later everyone!