Wednesday, November 14, 2012

Waiting . . .

is the hardest part.

As a person living with a chronic illness, I spend a lot of time waiting:

Waiting in the doctor's office

Waiting for prescription refills, test results, or insurance approvals

Waiting for pain to go away

Waiting for promising new medical treatments or research

Waiting for good news . . . or bad

All that waiting is a huge weight on my shoulders. It's a burden I carry with me every day. It's exhausting, and makes me quite anxious.

For about a month or so, I've been waiting for an upcoming visit to the Cleveland Clinic where I will be evaluated for a lung transplant. The organ transplant process is quite complicated, and I am complicated patient with a rare, incurable disease, Scleroderma. Earlier this year, I was turned down as a potential candidate by Loyola University Medical Center after more than a year of being watched by their lung transplant team. I was not accepted by them as a patient due to my various problems related to Scleroderma. I wrote a little bit about my Loyola experience on my archived blog, In Sickness and in Health.

After being declined by Loyola, I took a little break to re-group. Then my pulmonologist at Northwestern sought out other potential transplant centers with mixed results: Duke - no, too risky, University of Pittsburgh - maybe, but problems with my insurance coverage, then the Cleveland Clinic - yes, but . . .

Yes, they will take a look at me, my medical records and my history, and my complications related to Scleroderma. Yes, they will give me a series of medical tests, mostly pulmonary function testing, and I will meet with several members of the transplant team during my two-day visit. Then . . .

The waiting will begin again as we do not expect to have any answers during next week's visit. But we will have questions:

Will I be accepted as a transplant candidate? If so, when would I be listed? If not, what happens next?

The waiting is the hardest part.
Every day you get one more yard.
You take it on faith, you take it to the heart.
The waiting is the hardest part
- Tom Petty

10 comments:

  1. Thank you for sharing your story. I pray you get answers -- good ones.

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    1. Thank you for your thoughts and prayers A.

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  2. I hope and pray that the "waiting room" will be a short visit, as you wait for answers to the tests.

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    1. I appreciate your prayers A. Thank you!

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  3. You have persevered through many challenges over the past several years and now you are facing yet another. The waiting and uncertainty has to be the most difficult part. I am here for you. I am praying for strength, peace, and calm for you and your family during this difficult time of waiting and that you will receive a transplant. God bless.

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    1. Donna, thank you for your kind words and prayers, and for all that you do for all of us at PR!

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  4. My thoughts and prayers are with you!!! I'm so sorry that you have to carry this burden with you. You are a very strong person. I hope that it is a positive experience next week. Hugs, Paula

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    1. Thank you Paula. Having love and support from my friends means so much to me!

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  5. Praying for you, Sue. For continued strength, never-ending hope, patience and faith. May you be surrounded by compassionate doctors and the love of family and friends. I wish you the best.

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    1. Thank you Lisa for your kind words and prayers. They mean so much to me!

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