“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.
April 6, 2022
April 5, 2022
It's been a long time since the last update, and a lot has happened around here! Aside from the regularly scheduled and predicted appointments for Physical Therapy and Occupational Therapy (typically twice a week) and Doug's regular "clinic" appointments consisting of chest X-ray, labs, med checks and a visit with the Doctor, we have experienced a whole lot of extra things that filled the calendar.
For those of you who want a brief update - Doug is doing well! As of now we aren't positive when we will be coming home, but he has some local treatments scheduled out through the beginning of June, soo as of now it looks like we will be in Phoenix at least until then. If you are curious on what's been happening on a more detailed level, feel free to read on...
January was cruising along until about the time of the last update. Then I, Karla, tested positive for COVID on January 18th. Luckily, I was vaccinated and boosted and the symptoms were mild for me. However, Doug could not have any exposure AT ALL to me until I was testing negative with a PCR test. Paige and Doug were able to cordon off a hallway with sheets of heavy-duty plastic on two ends leaving me access to a bedroom, a bathroom and an office (I did a lot of puzzles). Paige would slide me things through an opening that could be re-sealed each time. Paige was working overtime during that period and was completely indispensable! She did everything!! This lasted 14 days. During this time, Doug had an abnormal amount of swelling on the inside of his knee where they had harvested his vein for his double by-pass, and had to go the the ER for an ultrasound. Although the swelling caused him to have "drop-foot" on his right side, there were no blood clots to deal with and the hematoma has decreased over time. He is slowly regaining the range of motion in his right foot/ankle.
Doug also had his 30 day post-surgery Bronchoscopy in January to check for infection, rejection and function of the lungs. He will receive these at 1 mo, 3 mos, 6 mos, 9 mos, 1 year and periodically throughout his life. After transplant they found that his immune system was creating Donor Specific Antibodies (DSA), which can lead to rejection of the transplanted lungs, and in January the level of DSA's had increased. Out of caution they prescribed IVIG treatments. IVIG is an intravenous infusion of Immune Globulin that is administered by a Home Health Care Infusion Nurse and is performed monthly. IVIG provides anti-bodies into your system to help the body fight possible infection. Each session is about 4 hours long. He has had three sessions at home so far and overall these have gone well.
Moving into February, there was never a dull moment!! We rounded out the month with a total of 25 appointments in 28 days. Doug had a lot of tests such as a manometry, stomach emptying test, endoscopy, and an esophogram to ensure his system is functioning properly and that he is not having any acid reflux or digestive issues. Acid reflux can adversely affect your lungs and all precaution is taken to make sure it isn't happening.
Throughout February Doug continued accumulating fluid in his feet, ankles and lower legs. They did another ultrasound to ensure there were no blood clots causing the swelling, and there were not. The swelling was most likely caused by one of the anti-rejection drug levels not agreeing with his system, and they have been adjusting that as well as prescribing a diuretic, which has really helped.
March proved to be just as busy as February. Doug had his routine visits plus a visit with a Nephrologist who has been monitoring his kidney function since before transplant (which is stable at this time). His routine chest X-ray revealed that there was fluid built up in the chest cavity between the lung and the chest wall. This fluid is not unexpected for the first six months after transplant and it is removed through a process called thoracentesis in which they extract the fluid with a needle, aided by an ultrasound to avoid puncturing the lung. Doug has had to have this done three times post-transplant so far. If the accumulation continues to occur, they can perform a surgery called pleurodesis to stick the lung to the chest cavity wall, but at this point that hasn't been necessary.
Doug had his 3 month post-op Bronchoscopy in March and they found no signs of rejection (Yay!). His bloodwork, however, did reveal that his DSA (Donor Specific Antibodies) levels had doubled, and they prescribed another treatment called Plasmapheresis, with the intent of removing the Donor Specific Antibodies that Doug is building to minimize the chances of his body rejecting his donor lungs. If DSA's become an issue early after the transplant, it is more likely that this treatment to eradicate them will be successful, so we are hopeful! The last week of March was Doug's first course of Plasmapheresis. This treatment is 5 days in a row in the hospital infusion center, and each session is approximately 4 1/2 hours. To do the Plasmapheresis, he had a surgery to put a port into his chest to be used as a "shipping and receiving" station for the procedure. Plasmapheresis removes Doug's plasma from his body and replaces it with donor plasma and albumin at 1.5 times the volume of fluid. The hope is that this process will remove all the antibodies that Doug's body has created to specifically fight the lung donor and that the introduction of donor plasma will teach his body to stop creating the DSAs, therefore avoiding rejection in the future. It was a long week for Doug as the process left him a bit worn out. He has another five-day session of this scheduled at the end of April and another at the end of May.
We had hoped to be heading home by now, but some of the "bumps in the road" that have come up are requiring us to extend our stay for a bit longer. As much as I would like to be able to project a timeline, it is not possible to do that at this point. Keep your fingers crossed, send your good juju or warmest thoughts - we appreciate all of them.
Again, Doug is doing very well considering what his body has endured. The nurses, doctors and therapists are always telling how great he is doing. He is open for communication. Please shoot him an email or give him a call if you want to check in.
In the middle of all of this, we have moved again (address below). Our lease was up at the end of March and the owners of the house we were in are putting it on the market. We have moved to Peoria to a very nice community (with a pool!) just in time for things to start warming up....
Best to all ~ Love,
15118 N 86th Lane
Peoria, AZ 85381
January 18, 2022
Today (January 17th) is a very special day, as it is Doug's 63rd Birthday!! We feel extremely fortunate that he is here to celebrate it with us, and feel confident that we will experience many more to come! It is quite remarkable to think that had he not been accepted for transplant and received new lungs, this most likely would have been the last Birthday we would have had with him. A special thanks goes out to the donor's family and we ask for continued prayers, warm thoughts and peace for them all.
They said there would be bumps in the road and we are navigating around a few of them now. A small price to pay for the trade off of Doug's future. Although we keep feeding him high caloric foods while trying to avoid excess sugars and too many carbs, gaining weight has been a slow process. One of the biggest obstacles Doug is facing right now is lack of sleep. He gets an hour or two at a time throughout the night, and is exhausted during the day. The doctors are trying to treat that with Melatonin, which really seems to mess with his head. Meditation is next on the agenda. Hopefully that will provide some relief and sound sleep.
I have posted a Birthday picture in the photo album, taken right after one of our walks around the block!!
Much love and gratitude to you all ~
The Woodside family
P.S. Doug hasn't had a haircut since October....
Photo Galleries (2)
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.