Lung Questions and Stresses

  1. Since my diagnosis is obliterans bronchiolitis, with a lung transplant, technically should be cured?
  2. Would the lung function immediately be high, or would it be low and slowly improve over time?
  3. Two incisions under boob (video assisted thoracic surgery?  or one across?  Dr. Cantu had mentioned two incisions which heals faster)
  4. How would we know when we can go off the ventilator?
  5. Are we very conscious the days following surgery?
  6. Chest tubes I heard are painful ?
  7. Dr. lee mentioned some improvements made since the time I got evaluated 2 years ago- can you give me some more info on that?
  8. Support group —> particularly for parents; and info session link.
  9. How would the cold affect my new lungs?  i know sick people are risky, how would that compare to cold weather?
  10. Dr. lee would present to case, then would i be activated on the list?
  11. When we get the call for a lung transplant, do we get to know what the age is of the donor, besides high-risk factors?  What are the determinations for a qualified donor lung?
  12. What is the opinion of the lung transplant’s team ?
  13. Can I go skydiving?

215 662 6200, press 3 for lung team

Emergency call 215 662 4000, ask to be connected to provider on call.


I think because I’ve had therapy for 4 years, I’ve gone through the 5 stages of grief.  Obviously, I’m not “ok”, but I’m okay enough to understand and accept that this is what I have to go through eventually if I want to live.

My mom on the other hand, is definitely going through all stages of grief.  I think even though doctors have told her in the past, she was always in denial and firmly kept believing that there were other things she could do to maintain me where I was.  Like giving me chinese medicine, having me avoid certain foods, and being upset at my dad because he didn’t move us to a warmer climate (California).  While it may be true that that that could’ve helped, or prolonged my diagnosis, it is also true that that would not have been a cure at all.  Functioning at 19% was a miracle for the time that I’ve grown up, but I had never known otherwise.

I’m really worried about my mom and how my parents will handle this, particularly if it goes south.  She kept having a meltdown and saying that there’s no point in living without me, that her meaning in life was for her kids and her family.  It is really burdensome for me to hear this, and part of what is making me uneasy and hesitant to tell the lung transplant team that I’d like to move forward.  Her stress is understandable, but it definitely is bouncing the stress over and over between us.  I want her to separate our lives a bit, because like Michelle Obama said, you are only responsible for your own happiness.   My acceptance and peace that it could all end up okay was faltering, and I ended up having a terrible nightmare of me being chopped into pieces like ham, and being sewn together with body parts of another person.  I saw blood on the bedsheets and all that, it was pretty horrifying.

I also had doubts that I’d have the strength and determination to swallow all those pills daily for the rest of my life.  But of course, when I thought of the bad things, I forgot about the good things, and vice versa.  I was trading in my life now, for a new life where yes, I’d have different risks and complications, but I could be able to breathe and run and dance and travel.  I think I would feel superhuman at that point.

Also, the cabin fever is really wearing me down.  Every winter, I feel like I’ve lost my mind, and wonder how I was able to make it through each year. Quite honestly, the quality of life imo is appalling.

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