May 17, 2022
Greetings all!
It's been a bit since my last update, but all is good. I was at MGH on 27 April for my breathing & walk test, chest xray and blood work. Unfortunately my condition has deteriorated and now my LAS is 40. Deterioration is expected as that is the nature of my pulmonary fibrosis. My next visit is 15 June.
Lexie and Reino have done a great job on the fund raising front.
Reino ran the Super Bowl Squares and the March Madness. Congrats to the winners of each contest and thank you to those who turned their winnings back into my HopeHelpLive campaign. Very generous! Thank you again Reino as running each contest is a bunch of work.
Lexie is currently running the drawings for various art items. The first drawing is for Lisa's Regopoulos's wonderful
pastel, 'Cascading Light, Crane Beach'. Rayah has two great watercolors and a felted trip-tic ready to go. I've even entered a piece!
I thank everyone who has organized, participated and donated to my campaign. I can't say it enough . . . I am truly humbled and very thankful to everyone's contributions.
Jay
January 7, 2022
January 7, 2022
Hi All!
Thumbs up for 2022 and hoping all is good with everyone!
Just received the call on January 5, 2022 from MGH that I have been officially put on the 'active list' for a bi-lateral lung transplant. Nine months of testing is complete and now I move on to the next phase, waiting for a suitable donor.
One receives a numerical Lung Allocation Score (LAS), from 0-100, to determine the ones priority for receiving donated lungs within the United States. The LAS takes into account many parameters of my health including age, blood type, BMI and a number of other conditions. As of today my LAS is 31.
MGH will be testing me on a monthly basis for breathing test, O2 levels at rest and during a 6 minute walk.
How long to I need to wait? No one knows for sure, but 6 months, +/- 2 months was MGH’s thoughts. Also, Covid has had a big impact on lung allocations and the staff to perform, treat and care for patients.
We shall see.
Thank you all again for your thoughts, prayers and donations.
Jay
December 23, 2021
December 23, 2021
Hi to everyone!
Just a quick progress update, I have completed all the testing and all the final request by my transplant team. They wanted me to get a complete dental checkup, a Shingrex vaccination for shingles and be up to date on all Covid vaccinations including boosters. All which I have completed.
The final puzzle piece is being off my specialty medication (Ofev) for two weeks, then I would be officially on the active list for transplant. If all goes to plan, that would be January 6, 2022.
I thank you each of you and your families who have contributed to my campaign. I am overwhelmed with gratitude and humbled by your caring.
I hope everyone has a safe, warm and loving Christmas and a great New Year.
Thumbs up and cheers to everyone! Jay
November 2, 2021
November 2, 2021 Hi All!
I was hoping to get the official word on being listed by now, but the wheels of progress turn slow. MGH added some more testing. Yesterday, 11/1/2021, Raya & I went to MGH to see the endocrine doctor. We spent an hour discussing my bone heath with a focus on diet.
On December 9th, I'm scheduled for a spine x-ray (to be sure I still have a spine!) and a complete allergy work up.
Hopefully that will be the end of testing. I can't imagine any more tests are needed, but we'll see.
Hopefully by the end of December the transplant committee will come back with good news.
I thank everyone from the bottom of my heart who has donated to my Hope Help Live campaign.
I am overwhelmed with the outpouring of generosity, concern and love. This is all very humbling!
Thank you all!
September 24, 2021
Sept 2021 - Hi to everyone!
I'm still in the process of getting listed, but coming to the end. I suspect I'll know by beginning of October.
I want to give huge thanks to my daughter Lexie, her husband, Reino for setting up this contribution campaign for me. Raya and I were very reluctant to do this, it's just not in our nature to ask for money. But Lexie and Reino, living in Chicago wanted to help out and this is their 'far away' way of helping, showing love, care and being involved in our welfare.
Major hugs and kisses go out to Lexie and Reino!
I also want to give a public shout out to my lovely wife Raya for all she has done for me so far. All our trips back and forth to Boston and this is just the beginning! Not only the trips, but being ever watchful over my condition. Sometimes, I'm not always the best patient and I can use a bit of 're-alignment'.
Lastly I want to thank everyone who has contributed to my campaign. I am forever thankful to your generosity and will never forget. Thank you again.
I will continue to update everyone on this page with my ups and downs with good progress.
Thank everyone again. I am blessed to have terrific people in my world!
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.
