“Glad to Meet You, Sorry That You are Here.”
Those were the words I heard as I was staring at a piece of paper taped to the door of the UW cafeteria that listed the scheduled meetings for the day. It was just moments before I went into my first IPF (Idiopathic Pulmonary Fibrosis) support group meeting that I met Dan, a man with wonderful energy and a multi-year survivor of a lung transplant.
January 6, 2022
First, apologies for how long it has taken us to do another update since Doug’s surgery! We found and moved into a new home in Phoenix right before and during Doug’s hospital discharge, which added an extra level of busyness… but we’re settling into the new house and all starting to get into a new routine. The house is also in a great family friendly neighborhood with flat wide roads and sidewalks – a very comfortable place for Doug to walk and regain his strength.
A lot of people have been curious and checking in on Doug’s progress – and he is doing very well, especially for where he is at in his recovery timeline. Doug was in the hospital for a total of 18 days, released on December 29th. For a time, they were considering discharging him around Christmas because he was trending in the right direction medically and crushing the in-patient physical and occupational therapy milestones. He did have a couple setbacks while they were figuring out the right medication levels and combinations (primarily some double vision and flirting with a-fib), so they decided to monitor him a bit longer over the Christmas weekend. It is very normal to have multiple setbacks during the first few months of recovery from a lung transplant, and we didn’t mind spending Christmas in the hospital. Considering Doug also had a double coronary artery bypass graft (CABG) at the same time, 18 days in the hospital seemed quick!
Since coming home last week, Doug has been back to the hospital three times for labs, x-rays, pulmonary functioning testing and appointments with a doctor. They refer to this whole process as ‘clinic’. Based on the results of the labs they adjust medication levels and advise any necessary diet changes. There haven’t been any concerns coming out of the clinic visits, and everyone keeps assuring us he is recovering fabulously. He also started outpatient physical therapy and occupational therapy this week, and we are all focused on helping him gain weight and strength. He was on a feeding tube for nearly two weeks while in the hospital and is down about 23 lbs from when he went into surgery, so now it is time to eat, eat, eat!
A lot of you have requested our address in Phoenix, which I have included below. If you had the previous condo address, please use this one going forward:
1129 W Orangewood Ave
Phoenix, AZ 85012
Thanks for all the love, support and check-in’s along the way. I know we haven’t done a very consistent job yet, but we’ll try to do more periodic updates on here.
Wishing everyone a healthy and strong 2022!!
December 30, 2021
12/11/2021 – THE BIG NEWS UPDATE! NEW LUNGS!
You may have received this update via email, but we thought it would be appropriate to add here as well….
Dear family and friends,
To start, thank you. Thank you for all the love, care and support sent from near and far to our family. We are overwhelmed by the outpouring of positivity and sincere generosity of our community.
After Doug was put on the lung transplant waiting list on November 29th, it seems very soon to be providing such an important update, but we have one! Doug has new lungs!
We knew that the average wait time of the St. Joseph’s Lung Transplant Program was about 15 days, but it truly didn’t seem possible until we experienced it.
Doug had what they call a “dry run” on December 9th. The hospital called to let him know they might have a set of lungs for him and to be on stand-by ready to come into the hospital if the retrieval team gave the go-ahead. Around 9:30pm he was told to come in and they’d start prepping him for surgery which was scheduled for 7AM Friday the 10th. At about 4AM on Friday December 10th, a nurse came in and told Doug that they would not be able to go through with the transplant. The transplant team determined the donor lungs not to be good for transplantation once they arrived at the hospital. We were aware that this could happen, and some patients experience a “dry run” more than once. Surgeons will test and check the lungs for all types of things at the time of retrieval and again upon arrival at St. Joseph’s. The call could be made at any point that the lungs are not viable for transplant.
After a short return home, Doug received a call at 8:45AM on Saturday December 11th. There was another set of lungs ready to be allocated to him. He was instructed to be at the hospital at 10AM and that the surgery was already scheduled for early afternoon. Everything moved very quickly, and he was in surgery by 2PM.
This call felt a little different than the previous one, we all felt a little more prepared and it felt right. Doug has always placed spiritual value on numbers, and ironically, all of this took place on 12-11-21… and a palindrome always feels a little lucky.
Karla stayed with him at the hospital before the surgery but was told it may be better to wait at home once they took him to the OR. The surgery was expected to take between 6-8 hours. Paige was in flight during the surgery and arrived in Phoenix at 7PM, and Mitchell arrived in Phoenix at 10PM.
The surgeon called Karla at 6:45PM that evening (12/11/21) to relay the news that the surgery was complete, the lungs looked good and were functioning well. The concurrent heart surgery went smoothly as well. The entire procedure took about 4.5 hours, which was much quicker than any of us expected!
Doug had a one-on-one ICU nurse that stayed in his room full time during the first couple of days for continuous monitoring. He was heavily sedated for about 24 hrs and intubated for 2 days, but we were able to communicate with him via messy writing on a white board and charades.
He was in ICU for three days and then moved to the floor of the hospital with other lung transplant patients where he will remain until he is ready to be discharged to go home.
As noted previously, he will likely be in the hospital for 2-3 weeks before being able to come home to our temporary home in Phoenix. He will have many appointments a week and be monitored very closely for 4-6 months before his appointments become monthly.
This journey has felt tediously long and incredibly fast at the same time. We can’t really believe this is where we are now, but we are incredibly grateful. We know that recovery is a new challenge and a lot of hard work for all of us. Doug’s entire immune system was suppressed (basically killed off) to prevent rejection of the foreign organ and he will remain on some level of immunosuppressants forever; therefore, learning and living a new lifestyle dedicated to avoiding infection and bacteria is imperative to remaining healthy from here on out.
We can feel the positive energy, prayers and thoughts from all of you. We also ask for prayers for the donor’s family.
Lots of love this holiday season!
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January 7, 2022
Keep up the amazing recovery work! Go Doug Go! And BIG love and shout out to your support staff on the ground. What an incredible team!
Lisa & Craig Curtis
January 7, 2022
Sending more love and healing thoughts your way! We are so grateful you are on the healing end and not the waiting anymore. We cannot wait to give you a hug and enjoy your laugh and wit at family events next year! We love you,
Mary, Jay, Alessandra & Bella
January 7, 2022
Paige we are thinking of Doug Carla, Mitch and you. Great reports that you are providing. The good news is your In Warm weather. We are freezing and now very wet. The good news is Doug is strong and very determined. We appreciate the good news. Will share with others. Jane and Sonny woodward.
December 22, 2021
Such great news!!! So happy to hear you are on the road to recovery Doug. We will keep you all in our prayers. Merry Christmas to you all. Jon & Kelly