Below is an update from Mike, who is now home. Thank God. Thank you all for your support.
Update from Mike:
Dear friends and family -
I wanted to take a moment to thank everyone for their generosity and continuous support. I’m so grateful to have such amazing people in my circle. It truly makes a huge difference going through a major event like this both emotionally and financially.
Below I have shared some dates along with some details around my journey this time around:
September 2023 - I was told that my transplanted lungs (Oct 28, 2021) were in chronic rejection and that it was progressive.
Sept 2023-March 2024 -- In and out of Mass General attempting to treat it with high dosages of steroids. Went through photopheresis which is a therapy that can reduce respiratory function decline and improves survival in chronic rejection for some patients.
Went back and forth to Cleveland Clinic going through the lung transplant evaluation process to hopefully be put on the transplant donor list again. MGH would not perform a 2nd transplant due to the risk and not having the expertise.
March 12, 2024 - I was accepted as a candidate for a double lung transplant at Cleveland Clinic. I was put on inactive status for a a week or so due to them wanting to look closer at my diaphragm based on it being compromised during my 1st lung transplant surgery. They decided that although it was not working at 100% that they still would proceed forward and I was put back on active status.
July 12th - my health finally had deteriorated so much that I had to go to Mass General’s ER due to difficulty breathing and high carbon dioxide levels.
July 13th - moved to Mass General’s ICU
July 14th - flown to Cleveland Clinic’s ICU via MedEvac.
July 22nd received a call that they found a donor and match, but later it turned out that the surgeons would not approve transplanting them once they put eyes on the lungs.
July 28th - I received another call with another set of lungs and this time the surgeons said they were a go. I had double lung transplant surgery. An organ donor’s lungs became available for the second time in two weeks and although my score was very high on the lung transplant list (based on several factors but how sick a person is has a lot to do with it) only 10% of all donors match my requirements due to blood type and antibodies from my prior transplant. It was incredible to happen so quickly but given my health at the time, necessary or the outcome would have been much different.
The operation took over 11 hours to complete. It took many nurses, technicians and doctors, but one individual performing the majority of the transplant was a talented cardio thoracic surgeon by the name of Dr. Shinya Unai. He is a top surgeon in his profession and glad of it because I needed someone like that given that this was the second transplant and that my case was complicated. From there I was transferred to ICU.
On July 31st - had complications and needed to go back on a ventilator. I remained there until I could be weaned off of the vent. I was transferred out of ICU on August 12th to the transplant unit.
August 30th - Discharged from Cleveland Clinic. I went to my Airbnb and remained there while going back and forth to the Clinic for follow up testing and appointments.
September 28th - was approved to go home to Cohasset, MA for a month until I need to return to Cleveland for my 3 month check up and Bronchoscopy.
So far so good. No form of infection or rejection up to this point. Hopefully it will remain this way for years to come. I plan on doing everything in my power to keep it that way. I’m truly blessed and grateful for my donor and having another opportunity at life.
Again, thanks for everyone’s support it is truly appreciated.
All the best,
~ Mike J
