Saturday, September 6, 2014


Since my "false alarm" call for the transplant that didn't happen, I have spent this past week trying to recover from the emotional roller coaster that went along with that experience.  I'm still on the roller coaster. It doesn't seem to want to come to a stop! You get that call and even though I was confident it wasn't going to be my turn, there is still disappointment and so the hope you tried to keep with you through that experience disappears and the disappointment comes to the fore.

Anxious. That's what I feel the most these days. I was never one of those who, during stressful times, got that "knot in the stomach" as many do. Many lose their appetites; I never would. But this is a whole new ballgame. I do have a knot in my stomach all the time and my appetite has been affected. This is uncharted territory for me.

That feeling of anxiety of WHEN will the call come. How much longer will I have to wait. Everyone tells me they believe it will happen. My Lung Allocation Score is high enough that I should get a call when a match comes up. But it's waiting for that match. Aside from my score, the only other factors are blood type and size; i.e. a 6' tall man or woman cannot donate their lungs to me. So the donor has to be very close in size as I am and have the right blood type and then my score has to be the one that the UNOS computer system picks as next. It could happen at any time, or it could take six months or more or never. Hence the anxiety.

My other condition, Interstitial Cystitis, which this Blog was started to talk about, has been bothering me even more since this lung disease began. The pain is worse, all the symptoms of my IC are worse and I haven't been able to go see that doctor because it's a monumental undertaking needing so much portable oxygen, plus I can't sit in the waiting room for and hour or two and risk running out of oxygen because he's running late. But I finally called and spoke with his nurse and together we came up with a plan. He's a wonderful doctor and he wanted to do all he could to help me if I could get there. Well, it takes two other people and a suitcase on wheels filled with 4 spare oxygen tanks to get me there, but we managed to do that yesterday. I got my treatment and my bladder felt so much better it was worth all the hard work it took to get me there. My bladder felt better for a while.

We're going to do it all over again next week so I can go see my psychologist. I am long overdue for an appointment with her and all this anxiety needs some talking out. I need her help. But these trips take a toll on me and it's rough going.

Everyone says "try not to think about it".  Really? If there's something to do to take my mind off my situation, I've tried it. But it's the first thing that hits me when I wake up in the morning, and the last thing I am thinking about as I try to fall asleep at night listening to the oxygen & Bipap machines keeping me breathing.

It's hard. But yes, I am trying not to think about it so much. I'm not doing a very good job at that but I keep trying.

Try Not to Think About It! OK, I'll try!


  1. I think that "Try not to think about it" quote is a load of garbage. Any psychologist will tell you that if we suppress those thoughts, they will only re-surface again. Thinking about it is your body's way of telling you that it needs to absorb the trauma emotionally. And the only way to get through that IS to think about it, to process it, one minute at a time. I don't blame you at all.

    Your journey has been very educational for me overall. All this time I have wondered the "why's" of when people die, as to what purpose. But seeing the "other" side, such as a lung transplant patient like you, I now see that everything happens for a reason. Was it an instillation the doctor gave you for your IC? Have you still been needing to cath?

    I will keep you in prayer on the transplant.

    1. Yes, I got an instillation at the doctor and it helped. And I was even motivated today to mix one up at home and give it to myself today which was also very helpful. I have to self-cath at least 7 times every day but it's so helpful for me.

      Yes, I will be having that conversation with my psych this week. While I need ways to cope with the anxiety, I too believe it is impossible not to think about it and I think my psych would agree.