Don’t let this breath be John’s last….

February 7, 2022

December 5,2021

Got to spend Millie’s birthday with her and celebrate the 1 yr milestone! So much has happened this past year for both of us I can’t believe it . It was a small celebration just immediate family and she really didn’t even know what to make of it all. So adorable to watch her explore her new toys and her new abilities. She’s cruising a lot more and ventured a few steps without holding on. It won’t be long now! Hope to be down again at Christmas in just a few weeks

February 7, 2022

November1,2021

As things continued to move along nicely throughout the rest of the summer and early fall, I continued to need IV antibiotics to treat several resistant infections in my lungs. Despite the fact that I felt fine and wasn’t having any real “symptoms“ they could tell those bugs were still there by testing my sputum, an occasional cough and by bronchoscopy. The lung team really thought this was due to silent aspiration even though again I had no real symptoms. It was recommended that I have a procedure called a Nissan fundoplication. What they do is take the top of your stomach wrap it around the bottom of your esophagus and make things tighter so none of the fluid from your stomach can go up into your esophagus and get into your lungs since that’s where they thought these bugs were originally coming from. They do it laparoscopically and I was only in the hospital overnight. Stayed a couple extra days in Boston and then home to enjoy two weeks of a liquid diet. Yuck! If you ever want to lose weight quick that is surely the way to do it. 20 pounds in a few weeks. And diarrhea to boot. Once I got over that part of it and started to resuming normal diet everything seemed fine. They won’t really know if it was “successful“ until I have my next bronchoscopy which should be around a year post transplant. I continue on my daily routine of walking and exercising and limiting myself to just that due to Covid. Hoping to be able to go and celebrate my little Millie’s first birthday with her the beginning of December and keeping my fingers crossed that it will be safe to do so.

August 15, 2021

Today is 6 months post transplant! I am feeling good although apparently still having some issues with some bugs that don’t want to leave my lungs and am currently on IV antibiotics. Walking 2 miles per day and continuing my strengthening exercises and I realize how important it all is to continue to make gains. Karen and I were able to go on vacation to the Delaware shore- a trip that I look forward to every year! Just being by the ocean rejuvenates my body, mind and soul. This year was a little different as I really just got my feet wet- no swimming but I enjoyed walking on the beach,relaxing and reading. I had struggled so much on oxygen to even get from the parking lot to the beach the last time I was there 2 years ago. I’ve also been able to see my little joy Millie! We babysat and she was just the best girl. Loved to get down on the floor and crawl around with her. She is crawling and pulling to stand and using her voice although not sure what she is saying. Our son Chris ,daughter in law Kelsey and Millie were finally able to come and visit us. Just as my confidence was building to try and venture out to experience a bit of normalcy, COVID is rearing its ugly head again. I’m wary of taking any unnecessary chances . I treasure the gift I received and believe in protecting it. Won’t find me without a mask that’s for sure!

July 4, 2021

It is now the 4th of July, Happy 7 months to granddaughter Millie Anne, and I am approaching 5 months post transplant, how time flies. I am feeling great still being cautious in public even though I have received both Covid-19 vaccines. The mask won't be going away for me anytime soon as I have too protect my precious new lungs. Starting to slowly venture out in public. Still doing monthly visits to the transplant clinic in Mass General in Boston. Meeting up again with Millie Anne was so precious when we saw her in May. Since then she has learned how to crawl and eating foods. It is such a Godsend to be able watch her grow. To think a few months ago I wasn't sure that would be possible. So grateful for science and medicine of today. The heavy duty meds are giving me some hair loss, it's getting very thin but that's a side effect of the prescriptions I am on as well as shakiness. I'll take it as I am alive and well and able to do things that I wasn't able to do for years. So thankful for this major event in my life, thank you to my donor and their family whoever you are. I hope to find out some day so I can thank them in person. This is a wonderful journey that couldn't have been possible without the support from my friends, family and co-workers and acquaintances. Our fundraising has stalled so please consider donating to the cause. Again thanks so much for helping me and I hope to give back in the future to help others that are struggling with these horrible diseases. I pray for those who are going through difficult times, it is a very hard road to travel but it's worth it to stay alive and enjoy the life we have left. My new motto is life is too short and very precious so enjoy it because you never know what you are going to wake up with. Don't take things for granted, life can change drastically in a heart beat. Donate blood, give to charities, help others, it's all good for the mind and soul. As this site says Help HOPE Live. Thank you

June 17, 2021

June 17, 2021 I have hit a new milestone for me,, 10k steps in a day. Just a couple of weeks ago I was doing 5-6k steps per day. Getting stronger everyday, still walking and exercising. This is so exciting and exhilarating to be able to do these things again. I have to get stronger as my granddaughter Millie Anne is now crawling!!! She is on the move and grandpa better be able to keep up with her. See pics. I am now doing monthly follow ups with the clinic at Mass General for lung transplant and hoping that will get spaced out further as I heal internally. So far so good!

May 27, 2021

It's been 14 weeks now since my double lung transplant and I am doing great! It's a life changer for sure, doing things I used to be able to do is fantastic. I am so grateful for such a wonderful gift and blessed to have the opportunity to continue on with life. Last weekend I was able to travel to Delaware to see my granddaughter Millie Anne. What a wonderful time it was to see her and my son and daughter in law! Last week I was cleared to drive again, so I did drive some of the way down and back. Going back to Boston the week after next for follow up clinic. Still exercising and walking more than a mile each day and it feels great! Looking forward to a beach vacation this summer as well as seeing Millie again. My new life is taking me back decades as my asthma is no longer since the transplant. What a relief that is. Making progress everyday as I continue to heal on the inside and get stronger. I will update periodically so stay tuned.

May 4, 2021

At home for almost 3 weeks now and feeling wonderfully . I am walking a mile every day including a pretty steady incline up to the main road in my development. The only limiting factor is my legs get tired but there’s absolutely no shortness of breath! I am also using weights for my exercises to strengthen my arms and my legs. I am also re-experiencing the basics in life without struggling. For example taking a shower without having to sit down stop and rest or need assistance. I’m able to do dishes without sitting down and resting. I even got to go to the hardware store and walk around (with my mask on of course) . What a treat since I haven’t seen a store in over a year. Doing all these things without giving it a second thought. Today I went back to see my pulmonologist David Strumpf in Troy for the first time in almost 3 months post transplant. The entire office staff had to come in to congratulate me and were amazed at how well I looked compared to pre-transplant. They were so glad that I was doing so well. I owe the whole team there a lot - if not for all their efforts of scheduling tests ,forwarding records , the support and guidance from Dr. Strumpf I wouldn’t be where I am today. Hats off to all of them. Tomorrow my wife Karen and I will celebrate our 42nd wedding anniversary. A few months ago it was questionable whether or not I would see that happen. We were looking forward to perhaps attempting a little outside dining somewhere to celebrate but the weather does not look like it’s going to cooperate. We’ll save that for sometime in the future. Back to Boston next week for a few tests and a follow up visit with the transplant team.

April 24, 2021

4/13/21 Home at last two months to the day after my lung transplant. It’s been quite the journey lots of hard work but worth every bit of it. I was able to walk about a quarter of a mile in my neighborhood for the first time since I moved there a year ago. I also was able to go up and down a full flight of stairs without stopping in without shortness of breath. It all felt surreal and amazing at the same time. I can’t wait to see what I’m able to do next!

April 8, 2021

Almost 2 months post transplant and things were progressing well up until Easter Sunday. We got a call from one of his lung doctors telling us they had found an infection during his bronchoscopy. It required IV antibiotics and so we walked across the street to the hospital and up to the familiar floor where he had spent his initial month after surgery. The nurses were glad to see how well he had progressed so far. Fortunately , it was a short four day stay. He had a pic line placed so he can continue his antibiotic therapy at home for the next two weeks. While we were there we happened to notice a beautiful beautiful painting on the wall painted by a transplant recipients along with some beautiful words of inspiration that were meant to be seen and provide encouragement to others. I have posted both here on the website. John is feeling good despite having the lung infection. He continues to work on his exercises to build strength ,walking to build his endurance, snd continues his positive outlook during the recovery process.. We realize that re-hospitalization after transplant especially during the first year is normal for either infection or rejection so that did not deter his determination and hopefully will not impact our plan to return home to Troy next week. Continued support from family, friends, neighbors, co-workers and those of you we may not know continue to be much appreciated and of course prayers are most welcome!

March 23, 2021

Five weeks post lung transplant and out of the hospital one week. I am feeling great! Breathing is good able to walk longer than I have in years. Using the rollator right now for long distance as I’m having some hip discomfort from weak muscles. Working on my exercises and walking every day to strengthen my legs and build my endurance. I’ve been to the transplant clinic once so far and got a good report from the nurse practitioner and transplant doctor. Still taking blood and doing chest x-rays on a regular basis and tweaking my meds. Enjoying the spring weather in Boston . Thankful for all the continued good wishes and prayers from family friends and coworkers.

March 16, 2021

John was discharged from Mass General at 7 pm last evening . Walked up from the parking garage to the apartment in Boston where we’ll spend the next month for phase 2 of his recovery. We are very grateful to all the staff at the hospital for their exceptional care and encouragement throughout this process. John and his family are overwhelmed by the continuous good vibes and prayers being sent our way and of course for your continued financial support as well .

March 12, 2021

Almost 4 weeks post lung transplant John had a very good week. Finally the pain in his thighs is almost gone enabling him to get up out of the chair with nearly no effort. They continue to work on removing the fluid from his arms and legs and that has been a noticeable improvement this week. A pic line was placed for continued antibiotics and IV diuretics. John’s now walking around the step down unit with a walker independently. He’s able to get washed by himself and put his own Ted stockings and he did 30 step ups with the physical therapist. He feels he’s really turned the corner. His strength and endurance continue to improve. And most important of all he’s breathing great and is not short of breath.He’s hopeful the doctors will let him leave the hospital next week. Keeping our fingers crossed on that one. John and his family continue to be grateful for everyone’s prayers, good wishes and support. Please keep them coming.

March 5, 2021

Almost week 3 post lung transplant. John had a few more bumps in the road this week. Still having lots of swelling in his arms and legs and some issues with some lower blood pressure. The swelling makes it difficult to draw blood or keep IV sites viable causing the doctors to consider placing a pic line for easier access and less discomfort for John. In preparation for that they did ultrasounds on both his arms to rule out any blood clots and coincidently one was found in his left jugular vein. Fortunately they had already started him on some Lovenox injections to address his chronic clotting issues . The significant swelling in his legs continues to cause pain and makes it difficult for him to stand up. He’s a trooper though and pushes through as best he can making progress with both his physical and occupational therapy. Admittedly he’s getting tired of being in the hospital and is anxious to get out. Getting a little lonely in Boston as well. As luck would have it Massachusetts General visitation is resuming this week so off to Boston for the weekend his wife goes . Fortunately she had secured a lease on an apartment in anticipation of his upcoming discharge. Although that looks as though it may be a little delayed and may have to extend that lease. A wise man said “the road to recovery is never straight but as long as the trajectory is positive .”

We believe that to be true. John and family continue to welcome your good wishes, thoughts and prayers and of course your donations.

February 27, 2021

It’s been almost 2 weeks since John got his new lungs. He continues to make great progress although there were a few ups and downs this week. He did experience some atrial fibrillation and some orthostatic hypotension which kept him in bed for a few days. He also had a small pocket of fluid drained from the lung cavity and now appears to be back on track. All the chest tubes are now out and he’s feeling a bit more normal. Despite retaining some extra fluid in his arms and legs, today he walked 170 feet in the hall with the wheeled walker. He also stood and brushed his teeth! There’s even been some rumors that he might be ready to Be discharged sometime next week.That means a little extended stay in Boston. John and his family continue to be amazed by all the support from family, friends, acquaintances and strangers. Keep all those positive thoughts and prayers coming. We continue to need your emotional and financial support on John’s road to recovery. He looks forward every day to the pictures of his granddaughter little Millie knowing every day in recovery is a day closer to seeing and holding her again

February 20, 2021

Day 6 post transplant: As you can see by today’s picture post he’s looking more like himself! He’s now off the oxygen( first time in 2 1/2 years),eating a regular diet, had one of the pain block catheters pulled, and will have another chest tube pulled later today.Yesterday he was up walking a short distance in the room with therapy and using a walker and he surprised the occupational therapist but putting his foot on his knee to show how he’d Put on a sock! Says he’s feeling better everyday! Your continued support means the world to us and his family!

February 19, 2021

John is now four days post bilateral lung transplant at Mass General where is receiving amazing care. He is doing exceptional per the staff there. He had the breathing tube Removed in under 36 hours, passed the all important swallowing test, has already had a chest tube and a drain removed, has been up in the chair for the past couple days and started physical therapy. Today he had a bronchoscopy which went well and showed the lungs are in good shape. His oxygen saturation is good and they are hoping to totally discontinue that tomorrow. Pain is well-controlled . John and I are so grateful for everyone’s prayers, well wishes and support throughout this process and as we continue to move forward in this journey.

February 15, 2021

After about 6 weeks, John received the call on February 13, 2021. He headed to Massachusetts General Hospital in Boston and received the double lung transplant he so desperately needed on February 14, 2021. The procedure went well and he is currently recovering in the ICU. Thank you to all who have generously supported our family already. We will continue to provide updates throughout the recovery process.

February 2, 2021

2/2/21 Thank you so much to those who have donated or sent kind words. This is very overwhelming to me and we deeply appreciate the generosity. Positivity is a great tool to get through difficult times, you all are lifting our spirits. I look forward to a great outcome, keep the thoughts and prayers coming. John and Karen