Sunday, July 6, 2014


I need a Lung Transplant. I’ve written about this before. But I have multiple other health challenges, so many that the only other hospital here where I live that does lung transplants turned me down.

If it weren’t for my personal Pulmonologist calling Loyola and never giving up fighting to get them to evaluate me, I wouldn’t be here. It was such a long, complicated, complex journey, but I was accepted and I am finally on the UNOS Transplant List! Now I have a chance. All I want is a chance. You have no chance if you can’t get on the list. So now that I’m on the list, at least I have a chance! No one could ask for more.

So one would think I sit at home waiting for the call to come. If only. The Transplant Team keeps you very busy. I haven’t written a Blog in so long because I haven’t felt up to it or had the energy. I am required to attend Pulmonary Rehab twice a week. What it takes to get me up, dressed, fed, and ready to go is no small feat. Everything takes twice as long now that my lungs are so bad. By the time all that is accomplished, I get to Rehab and get back home, settled in and have lunch, over half the day is gone and I’m exhausted. I almost always fall asleep at that point.

I’ve been required to attend several different Lung Transplant Education Classes, so add those to having to go to Rehab.

I just had surgery last Wednesday that the Transplant Team wanted. I have a swallowing dysfunction that causes me aspirate thin liquids. So since being diagnosed I’ve been adding that thickening powder to all my drinks. It works great. But the Transplant Team is very concerned about me aspirating into a newly transplanted lung. If I did that, the odds are high that I would kill the new lung and we don’t want that. So their work around was to put in a feeding tube. So I had that done last week. I am still recovering and it’s going slow, but moving in the right direction. Today is better than yesterday so I’ll take it. I have to see the surgeon who did it in two weeks.  It’s not in it’s final “form”. Right now I have a tube over a foot long, but in several months, once it becomes a real “part” of my body, they can shorten/remove the tube and I might even just have a cap. I look forward to that day. We have to flush the tube every day and clean it. Today I even took a shower! 

Having to have surgery when you are suffering from a life threatening lung disease is no small feat. It’s been rough going. But I’m glad it’s over and I’m recovering. I must see the surgeon in two weeks, so I must call to see about making that appointment. They never tell you that until after your surgery (on the Friday of the 4th of July weekend!), so I have to wait until Monday to call, and then you can never get in to see the doctor when the doctor tells you to come see him!

Getting a transplant isn’t easy. It shouldn’t be. But, boy, what I have been through to get to this point; well, honestly I feel by the time I get mine (thinking positively), I feel I will have earned it!

So, whatever I am asked to do, I will do. At least so far, I haven’t hit anything that would make me say - no, that’s too much and we’ve reached a place I no longer wish to go to. So far, I’m game for whatever they’ve thrown at me.

Don’t get me wrong. It’s all very scary, intimidating, overwhelming. I need to dig deep each time I am faced with another hurdle. So far I’ve managed to do that.

Now, I focus on recovering from this latest surgery to put in the feeding tube. I have Rehab to resume in about a week (per doctor’s orders, wants me to skip this week and even then resume slowly and with caution); a few more classes and keeping up with regularly scheduled doctor appointments.

No one ever said this would be easy!

Me in the hospital after my feeding tube surgery!


  1. Thank you for this post. I still will continue in prayer for you. I am curious tho, with the feeding tube, that means you can no longer eat normally? that also means you will never enjoy eating an ice cream cone again?

    1. I have no problem with solid food; my swallow dysfunction is with thin liquids. I do not have to use the feeding tube until I get my transplant. Then, they will likely have me using it for all my liquids for a period of time until they see how I am doing post transplant. I already have to put thickening powder in my liquids before I drink them. The Transplant Doctors are not sure how long they will want me using it until they see how I do.