Sunday, June 1, 2014


This is hard. My life with IC was hard enough as anyone living with it knows. I had worked very hard to learn to live with my IC and find coping skills, volunteer, advocate for others. Then out of the blue for no reason anyone can determine, I came down with this incurable lung disease of unknown origin - Idiopathic Bronchiolitis Obliterans.

How did this happen? We'll never know. And I really have stopped asking that particular question. But nonetheless, the thing that hits me smack in face every single day is - this is hard.

The good news is I have been accepted for a lung transplant. I still have a few lab tests to be done before I actually get put on the waiting list and told where on that list I am. So I am anxious for that to happen. 

Pulmonary Rehab is hard. I began last week and must go twice a week for as long as it takes to get a lung transplant. The doctors want me to regain as much conditioning as possible before I get a transplant so that I will be as strong as I can possibly be for the surgery and post surgery rehab. Again, hard. But I am committed. I actually look forward to regaining some of the strength I've lost since becoming sick.

All the side effects of all the medications I am taking are hard to deal with. They mess you up in so many ways. My sleep has been effected since this all started and there are many nights I don't sleep at all or don't fall asleep until 3-4AM. That was last night. When that happens, the next day is just awful. Aside from feeling so tired from not sleeping it impacts the symptoms of my disease, making me more short of breath and weak. This is hard.

It's a roller coaster of emotions and physical symptoms. My "good" days are not really good but a good day is better than a bad day. A bad day is the worst, with my symptoms as bad as they can be and finding it difficult to stay awake. Which then impacts my ability to sleep at night.

So it's a vicious cycle. "Good" days and "Bad" days; sleep one night; none the next. 

This week I have rehab on Tuesday and Thursday and multiple lab appointments on Wednesday which, when the results are in, will finally get me placed on the transplant list and tell me where - or how high - on the list I am.

My IC continues to be a never ending struggle, made all the more challenging by this lung disease. 

I have to find a way to learn to deal with all of this. But, it's a lot. I know even when I get on the transplant list, I have no way of knowing when, or even if, I will ever get lungs. Waiting, they tell us, is the hardest part of being a transplant patient. You never know when the call will come, if ever. I met a man at rehab last week who has been on the list for 10 months; he's still waiting. And still going to rehab so he can be ready when he gets his call. I wished him well.

This is a journey for sure. And yes, this is hard. I have a lot of support who never give up on me when I feel weak. This is hard, but one day at a time and slowly but surely, I will find a way to get through it.

My Lung Pillow Sent by a Dear Friend

"I Didn't Know My Own Strength" - Whitney Houston

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