July 2, 2021

Hi all, thank you for checking out my site. I wanted to give you a bit of history as to how and why we’re here.

2019 January – Not feeling great with high temp and flu symptoms, I went to Emerson Hospital Emergency, Concord, MA to be checked out. Long story, short, I was admitted and spent the next five days at Emerson with double pneumonia and H1N1 flu.
During my stay, I was given a chest CAT scan and there is where they found scarring on my lungs. What! Yup… The docs called it Interstitial Lung Disease, a general term for lung diseases. They tried to pinpoint why and how I got this scarring. Maybe work related or family history but all dead ends, which apparently is not uncommon. The new and current classification is Idiopathic Pulmonary Fibrosis or IPF.
I find out IPF is a progressive and incurable lung disease. In my current condition, life expectancy is 3-5 years. To make matters worse, the docs think I’ve have this since 2016!
So, Emerson discharges me and I need to be on 24/7 oxygen. That was a gut check. I was tethered to a 50 foot O2 hose throughout my house. That lasted for 6 weeks and thankfully I weened off the O2.

2019 August – I go to Mass General Hospital, Boston, MA for a second opinion. There was no getting around my diagnosis, they confirmed IPF. I was put through a series of breathing tests for a base line determination of my lung capacity.

2019 September – Put on the medication Ofev. This medication slows down the progression of scarring, but does not stop it. By the way, the medication cost $11,500 per month! For the first year I was able to find a grant to help pay for the Ofev thru Healthwell Foundation. It still cost me nearly $600 per month! I did that for a year, then the Healthwell Foundation funds ran out. Now what – more research. I contacted the maker of Ofev, Boehringer Ingelheim and found they had a program help paying for Ofev. The BI Cares Program was a financial lifesaver for us – thank you to BI Cares!

2019 September thru 2020 January – Signed up for a Pulmonary Rehab Program at Nashoba Hospital, Ayer, MA. Great people and thank you for all your hard work.

2020 January thru 2021 March – Covid 19 days. Pretty much stayed home. Didn’t want to catch any of that Covid stuff! MGH was pretty much shut down. I did a few telephone visits with my pulmonologist. But just tried to stay on a level playing field.

2021 April – Started back to MGH with in person visits and back to the killer breathing tests. Ugh! But now a new twist – my pulmonologist ask if I would consider a double lung transplant. A what? Yup.

2021 May thru July – To be considered for a double lung transplant, one must go through a series of tests to see if your organs, and I mean all organs, will stand the stress of the operation and recovery. Plus, the medical team wants to know what is going on in one’s body. CAT scans, MRI, blood tests, swallow tests, acid re-flux tests and heart testing are some of the testing highlights. MGH also conducted Physical and Occupational Therapy, Pharmacy, Speech therapy, Nutrition, Social work, Psychiatric, Financial, surgical and medical review.
This is the most comprehensive medical workup one could have.