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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.
I’ve been on my IPF journey with many twists and turns from early 2015, when I was diagnosed, to present. This encounter with Dan was in the fall of 2018; and I knew that someday, hopefully, I’d be facing the opportunity of a transplant myself. It is now late fall of 2021, and that time has come.
I am one of the lucky ones. They say less than forty-five percent diagnosed with this disease live more than five years; I am over six years now. Fortunately, and unfortunately, my disease is familial, meaning it is hereditary and we have a family history of this disease. I know this is what helped with an early diagnosis, and I know that the medical community has taken huge strides in understanding (and someday curing) this disease in the six years that I have been treated.
I won’t lie to you and tell you that this has not been flipping scary from the first day I was diagnosed, it has. That there aren’t days when I drive myself home from an appointment and tears hit my eyes as I face my known mortality. That I don’t look at every trip I take, moment fishing, adventure, pleasure, and holiday a little bit differently. The thoughts of missing the ones I love, the good times with family and friends – it all hurts to the core.
So here we are, its 2021 and time to take this story to the next chapter: lung transplant and many years of productive survival. Lung transplant is not a cure, it is trading one disease for another, but with a more optimistic outlook. It is a lot of work not only for me but for everyone who surrounds me. There are downsides, which I understand, but there are many upsides, which I will focus on.
With great hope, strength and relentless support of the wonderful teams that surround me, may this journey continue. I Got This! – Doug
As many of you know, my transplant journey has taken me to Phoenix, Arizona where I have been accepted as a patient at St. Joseph’s Medical Center and I have be listed with UNOS (the United Network for Organ Sharing) as a transplant candidate as of November 29, 2021.
Many of our friends and family have reached out asking how they can support us, and it has taken us some time to find the right answer. Help Hope Live is a non-profit that was introduced to us at St. Joseph’s Medical Center, and we believe it is the right organization to assist us through this journey. Help Hope Live’s history is rooted in transplants and was founded by a transplant surgeon and nurse to assist patients with the financial challenges of transplants.
After discussion, we feel that having to relocate and the related expenses are our greatest burden. We have found that housing in the Phoenix area is exceptionally popular and expensive this winter as many snowbirds are back after not being able to travel last year. Transplants are not typically quick, but fortunately St. Joseph’s has one of the shortest waitlist times. The average timeline of a healthy recovery includes two to three weeks in the hospital after surgery, four to six months of frequent visits to the hospital, followed by monthly visits for a total process that is yearlong.
Family and friends of Doug Woodside are raising money for the nonprofit Help Hope Live (in Doug’s name) to fund uninsured medical expenses associated with transplantation. Funds raised in Doug’s name are managed by Help Hope Live and will be allocated to us for medical expenses throughout this process. Any unused funds raised in Doug’s name will be passed on to future transplant recipients.
We have chosen to fundraise for, and in conjunction with, Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Cheers, Doug and Family
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
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....
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 85021
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!!
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!
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
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
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.
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
Best news ever! Thinking of you Doug… much love to you all ❤️
Arrow & Misty McClain
Thinking about you a lot, Doug. Heal fast. Love you little brother.
Congrats on the new lungs Father Fresh!!! Can\'t wait to see soon!!
Heard about the new lungs. That's AWESOME, we are very happy for all of you! Let me know when you want to do some Yoga! Thanks again for the floor.
Doug, you will always be my Dougie Do Do. Will be seeing you and family soon. "You got this"! Love ya Big. Your Sis. Renee
Looking forward to seeing you and family soon.
As you say, you got this.
God bless the Woodside Family!!
Congratulations on the lung - especially on such a special date - 12/11/21!!! Sending positive healing vibes for the most uneventful, smooth and speedy recovery, Doug. Love you guys tremendously - I am sorry to hear about this journey, but thrilled that you were able to receive the surgery. I am always available for whatever I can do - send some healthy meals, provide cleaning, lend a listening ear, or just send air hugs and healing vibes.
Shelle Grimm Freind
Doug, Karla and Family,
You are in our prayers. Hoping all continues to go well.
Love you all,
What a whirlwind for you all. So thankful they were able to find a donor so quickly, and that Doug has come through the most critical parts of this journey so well. We are sending you love and healing thoughts.
Debbie and Robert Manos
Our prayers are with you for a successful transplant, Doug!
I know the costs of living away from home can mount quickly. I'm happy that I can help lighten the load. Keeping you in my thoughts and prayers and looking forward to the day the transplant is a reality. Wishing the best for all of you throughout the holiday season and beyond.
I wish you the best with all that is ahead of you!. I'm sure you are in good hands.
Love to the WOODSIDE Family!
Thinking of you Uncle Doug! I'll be praying for you and your good health this holiday season. XOXO
Doug and Karla, you guys are on my heart and in my prayers. Love you!
We are thinking about you and your journey and your family. We are sending positive vibes, well wishes and strength your way. Please send sunshine our way;).
As you said, you\'ve got this, and with your loving and strong family by your side, you will get \'er done. Thank you for the connection to Help Hope Live. We would like to help where we can and they sound like a great organization. Take care.
Becky and Mike Hall
Doug, Karla, Paige and Mitchell,
Every day we pray for the best possible outcome and the physical and emotional strength to get you there.
All of the good you have fostered through the years is coming right back to you in positive energy. Hang in there.
We Love You,
The Catania Family
Go get ‘em, Doug and Karla! We’re pulling for you! Bob and Ann
Bob and Ann Ingham
Dear Woodside Family ~ We send you much hope and love for your journey ahead. Doug we are so happy that you have made the transplant list and can be in the therapeutic sunshine while you wait. We will follow your journey with accompanying prayer awaiting news of every positive step ahead.
Our love and hugs to you all,
Wendy and Chuck
Chuck & Wendy DeBoer
Thinking of all of you and happy to hear that Doug made the list. We live close by so happy to help with anything you need!
❤️Shelley (Eberhardt) Mazzaferro
We love you Doug.
We are making this donation on our mom Paula Frial's behalf and memory. She worked closely with both Doug and Karla on her beach house projects. We're keeping Doug and the family in our prayers. Take care.
We are so proud to support you and stand with your family during this journey. Spending time with you shortly before you departed for Arizona was a special day for all of us! We're sending prayers, positive thoughts, good karma and anything else that might help lessen the burden. Keep smiling, give your family a big hug and everything is gonna work out.
Steve and Betsy Amento
Doug and Karla - I’ll always remember both of you checking in and supporting me through some pretty tough times during my transplant. Sending all that positive healing support back to you now - XO, Cathy & Glen
Sending all our best to Doug and The Woodside family! Love you guys!
Anna & Eric Finlon
Sending lot’s of love and prayers! You got this!
Christy & Paul
Doug, the words of encouragement you gave me before my surgery 6 years ago helped me a lot so I'm hoping to return the favor now. Knowing you I have no doubt that "you got it". We will keep you and your family in our thoughts and prayers.
Kevin and Ele Sale
You got this Dougie! Stay strong and power through. We love you!
Lisa & Craig Curtis
Woody, Hurry up and get this over so you can come home and go for a ride with the rest of the Rats. You\'ll be in our thoughts! Shuuuuuuu
Doug, Paige and Karla,
Sending you a big hug from Los Angeles! Love you all so much, my Christmas wish is that you get a donation match ASAP! xo Natasha
Natasha De Alto
Doug, Karla, Paige and Mitchell-
We are so happy that Doug is finally on the transplant list! Such a long and hard journey to get here. Our hearts are with you every step of the way.
Love you all,
Judy and Joe
You got this Doug. Looking forward to our next motorcycle adventure!
Love ya man! Johnboy
Praying hard for you, Doug and sending my love and support to the entire Woodside clan.
You got this!!! I can't wait to see you all again.
xoxo- Patti Finlon
Sending you our love and prayers of healing. We also pray for your doctors and nurses along the way. You are very strong and have a wonderful family and the best of friends behind you.
We know you got this!
Joni and Scott Kimmel
Sending my love & all the positive energy I can muster!
The Novack family thoughts and prayers are for short wait time and speedy recovery. Will see you at the beach house for some crab in no time. Yes-- you got this!
The Novack Family
Love and Prayers!!
Doug & Karla
Sending love, hugs, prayers & strength to you.
You guys rock. Onward and upward.
Love you all so much!! So happy to hear to got a second opinion and moving forward!!!!! You got this!!
Love you guys!
We’ll keep up with you guys and keep supporting you all however We can!
We’ve been so blessed to have you as part of our community. I suppose we became part of your community! Xo
We love you Doug!!
Jay and Mary Craig
Doug…we are all praying for you, your family and your care team.
- The Rabens
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Douglas Michael Woodside
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
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