“Breathless” Transplant News
I was diagnosed with IPF in 2019 after living with my hacking cough for 6 months; so best guess is that I am now 4+ years into this miserable disease. First put on OFEV, but after 18 month or so had to give it up because of the GI trauma it caused. Been on Esbreit since May of 2021 with much improved GI.
But, as everyone here knows, the disease is relentless and the slope on my decline has increased. Two weeks ago, the Duke University Hospital Pulmonary Transplant team told me I was ready (i.e. sick enough, but not too sick) and invited me to relocate to Durham NC to prepare for the bi-lateral lung transplant surgery.
And even though I have been working toward this point, their decision it left me “breathless”, and a mental state that I’ll describe as a cauldron of concerns and chaos. I am committed to seeing this through to whatever end the Lord has in store for me. But I keep worrying about things I have no control over, or any way of knowing.
Duke has laid out a sample schedule that starts April 1 with 4-6 weeks of “pre-hab”. Then 2-4 weeks on the OPTN waiting list, then the surgery. Post-op is expected to be 40 days in the hospital followed by 4 or so months of follow up and rehab. SO, if things go as planned, we won’t be able to move home until October-ish. That’s a long haul and has plenty of opportunities to be shorter or longer…depending.
I have my Faith; I have my conviction; I have my meditation; and I have deep trust in the Transplant Team…it’s just so many things could go sideways. This is my current consuming struggle
Any supporting thoughts or ideas from the group will be greatly appreciated! Especially if you have found yourself or someone you know in similar circumstances.
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