Transplant Evaluation week is coming

We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.  

Many people have always asked/said, “why is it so hard to just get lungs? Why can’t you just get lungs? Ya know, like you have your gallbladder out. Why do you have to be so sick to get them?  Obviously you need them!”  There are many more things people say and question about it.  It is hard to explain why I can’t just “sign up” for lungs.

I have told people that I am going for my transplant evaluation and they have said, “It’s about time you got lungs.”  Ummm  I’m just being evaluated to see if I qualify and if so where I am on the transplant spectrum; listable, unlistable at this time, inactive listable, etc.  I do truly wish I could just say “I’m ready for some lungs today.  I’ll be checking in at 9am, please have them ready for me!”  It is a process and a long one at that.

I will keep notes throughout the week and update Friday or Saturday on the blog about how it all went and what the outcome was.

To answer some common questions about transplant:

  • I have to be sick enough but healthy enough to be listed for a double lung transplant.
  • No they would not just take one lung out and put a good one in.
  • Yes there is living lobe donor options but that is much more complicated than just finding someone who is a blood match and swapping it out.  It is usually someone from your family and I’m sorry to say a lot of my family are not candidates mostly due to their smoking. (sorry folks, I need good lungs)
  • Will I still have CF after a lung transplant?  Yes I will still have CF but the new lungs are genetically different so they would NOT have CF.
  • I would be on a regimen of medicine to help my body accept the new lungs and not reject them.
  • Rejection of the implanted lungs is very common.
  • The statistic is that after 5 year of having a transplant 50% of the people are still alive.  That statistic hasn’t changed in years so maybe it should be updated, I don’t know.
  • Will I cough after transplant?  Most likely no,  I will have to learn to cough because all of those nerves are severed during surgery (weird huh?)
  • It will be a really long road and journey and I will need all the cheering and praying I can get during that time.  Heck I could use that now to get me through the anxiousness of seeing new doctors and them deciding my lung transplant fate.

Please pray me, my husband and all the doctors to have wisdom this week during this jam-packed week of appointments.

Until next time…

3 thoughts on “Transplant Evaluation week is coming

  1. You are continuously in my 🙏🙏 and will update our Sunday School class tomorrow morning and ask them to continue praying also. Will be anxious to hear from you at the end of the week. Praying for Jason too as he cares for you.

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