Special Edition: My Lung Transplant Journey, September 9, 2014 - Impatient Inpatient

15 months, 16 days and counting . . .

That's how long we've been waiting for my new set of lungs!

The wait now continues with an unexpected twist. I'm waiting at the Cleveland Clinic on the lung transplant floor because my condition has seriously declined and my supplemental oxygen needs are too great to be managed at home. The wait may be a few days, several weeks, or even months, but the ultimate goal for the transplant team is to keep my condition stable, build my strength, and boost my weight during the wait for the perfect match.

And that there's the rub, finding the perfect match. Although my lung allocation score is quite high, in other words I'm high on the list, it really doesn't matter if they cannot find the best match for me. The single most difficult problem with finding me the best match involves a complicated problem known as high antibodies. It's difficult to explain because although I'm a very educated patient, I'm not a doctor or scientist. The transplant team attempted to address this problem by giving me monthly IVIG infusions for the past six months in an effort to desensitize my body to the antibodies leading to the goal of finding a perfect match. However, as of today, they do not know if this protocol is working, nor if they plan to continue it until they obtain more information from recent test results. Without the best match possible, chronic rejection of the new lungs is likely, and with limited lungs available for donation across the country, lungs that are not not suitable for me could give new life to another person on the waiting list.

Yes, that's heavy stuff. That's what we're up against. It's been a very difficult journey for me (and the family). There's been lots of tears, frustration, anxiety and more along this road, especially during the last three months or so as my health declined, making it harder and harder to breathe even while doing the simplest of daily activities. I certainly will not be described as one of those people who "never complained about their illness" or questioned the fairness of it all, because I have many, many times over. I'm human.

My hope that with this huge bump in the road, I can be brave and patient, and have faith that God will bless me with new lungs very, very soon.

I will not go down without a fight!

Special Edition: My Lung Transplant Journey February, 21, 2014 - The Waiting List

It's recently been called to my attention that I have not updated this blog since November! Oh my! But in my defense, it's been a long, long winter wrought with cold and snowy weather that essentially has kept me in the house since Christmas Day. I know some of you may be thinking, "Hey, that's the life! She must lounge around all day and eat bon bons. I wish I could do that." Trust me, no you don't. It's boring and sometimes lonely, and there is only so much bad daytime TV to watch before you start going stir crazy. But enough about all that, I'm going to share with what's happening next week.

FYI - it's not the transplant surgery because if you've been following my story, you should know by now that I'm waiting for the perfect match, and that match needs to come from a deceased person who made the selfless decision to be an organ donor. It's been nine months since I've been listed at the Cleveland Clinic, and my match still has not been found. Geez, I could have carried and birthed a baby during this time! Anyhoo, back to next week.

Starting on Monday, February 24, I will be a guest editor on The Waiting List, which is a storytelling project focused on organ donation. The Waiting List can be found on Facebook, Tumblr, and Instagram (@the_waitinglist) I came across the project by following the story of a brave young girl named Angel who has been waiting for a double lung/bone marrow transplant since July 2013. I will be sharing my transplant journey with photos and writing focusing on the challenges of living with a serious illness while waiting for new lungs, and in turn, a new life. Please join me on this journey by following me here, on Facebook or Instagram @suzib66 or @the_waiting list. Thank you!

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