Tag Archives: transplant caregiver

Transplant Caregiving “Is Not My Calling, But It Is What I Do”

In October 2013, Douglas Petrie complained to his doctor about shortness of breath. A lung specialist diagnosed him with idiopathic pulmonary fibrosis (IPF). By September of the following year, a lung infection had propelled Doug onto the lung transplant waiting list. This is Doug’s transplant story, as told by his wife and caregiver Carol Petrie.


Doug got his transplant August 16, 2015. As I drove home at 2 a.m. after the operation and seeing Doug in the ICU, I thought, “Doug has been born again. He has a new life. He can breathe.” This is the first time I have written about our adventure.

Douglas Petrie HelpHOPELive

Doug, left, was “born again” after transplant, says wife Carol

I have likened our transplant experience to a pregnancy. We were on call, with a bag packed, and Doug was on the list for nine months. Wherever we went, we had to travel with Doug’s supplies just in case.

When Doug was first diagnosed, he was told, “Don’t worry–you have the slow-moving kind of IPF.” What we didn’t know was that even a cold could cause his health to deteriorate quickly. We had to learn that everything was a “big deal.” Even though I had done a little research on the Internet, I did not know which questions to ask. We are very grateful for the medical professionals who helped us because we were out of our depth.

We could see Doug’s health go downhill. We kept liquid oxygen in the house for him to use. When he had a doctor’s appointment, we always had to make sure we packed enough oxygen. Going anywhere became a production. We learned to adapt and manage Doug’s time so we wouldn’t miss any big occasions.

Douglas Petrie HelpHOPELive

Carol “could see Doug’s health go downhill” pre-transplant

Doug got a bill from the hospital for $572,000 about four months after the transplant. I was told the whole package would be about $1 million. There are constant doctor visits to pay for. While Doug took two medications prior to his IPF diagnosis, after transplant and for the rest of his life, he’ll be taking over 15 pills per day. He can’t even skip one day; these pills keep him alive.

Doug’s insurance helps to reimburse us for mileage, tolls, some meals and some lodging up to a year after transplant. We have not been able to qualify for help from Medicaid like some organ transplants do.

HelpHOPELive has been a big help to us. The bills from the pharmacy go straight to HelpHOPELive for payment so we don’t have to cover the cost up front. The staff at HelpHOPELive is helpful and knowledgeable and has advised me on which fundraising ideas work better than others.

Douglas Petrie HelpHOPELive

Carol added Doug’s HelpHOPELive page to her email signature to reach new contributors

A doctor friend of ours sent out letters to his colleagues informing them of Doug’s condition and asking for donations, and they raised more money than any one big fundraiser would have. I’m working on an idea for a large annual event that would pay for Doug’s medicines for a year.

Doug says he had to learn to breathe again after the transplant. With a few precautions, he should be able to do almost anything. It’s been a year since his lung transplant and we are forever grateful to the donor and family, and to all of the folks at Tampa General Hospital and HelpHOPELive.

Douglas Petrie HelpHOPELive

Doug “should be able to do almost anything” post-transplant

This has been my third time serving as a caregiver. I took care of my parents before they died. I have never been interested in medicine or taking care of the ill, so taking care of someone this time around is surreal. This is not my calling, but it is what I do for a loved one.

There are decisions I had to make for the family when I first took on this role. I had to tell Doug he had to stop driving until after the transplant. I had to make sure I had all the contact numbers for doctors and the hospital. It was my job to tell the doctors how Doug was progressing. I had to make sure Doug did not do too much. It was frustrating for him when he would become tired and he would not be able to do little things like carry dishes from the table to the kitchen. I had to learn [to identify] when he reached this level and help him calm down.

You need others to help when you are a caregiver. Our son, Chase, and a young family friend helped out. It is good to have someone on call who can drive for you. After transplant, Doug had to see the doctor once a week for 8 weeks. The doctor was an hour away and the drive became tiresome for us.

Douglas Petrie HelpHOPELive

“You need others to help when you are a caregiver.”

Since the transplant, I’m more of a manager and I’m less hands-on. Doug takes his own vital statistics daily, checks his lung capacity and logs the information to take to monthly clinic visits. I just make sure it gets done.

We have tried through this journey to keep our sense of humor and that has been a big help. We have also had a strong prayer support system. I have tried to carve out time for myself away from the house, whether it’s a movie, lunch with a friend or a haircut.

Doug and I have a deep faith and that has kept us grounded. I look at Isaiah 43:1-3, a passage that includes two of my favorite words from scripture: “fear not.” I claimed this scripture for our family and have gone back to it time after time, praying it back to God.

Our neighbors and friends have helped with contributions and checking in on me and our son. I have a group email list for family, friends and contributors and I have a group text for family to keep everyone up to date. Between that, posting on Facebook and calling our church, I can have several hundred people praying for Doug in a very short period of time. This has been a source of hope and assurance for us.

I would advise other transplant families to keep their sense of humor and laugh lots. Doug recommends to other transplant families that they should do everything medical professionals tell them to do, no more and no less.

Don’t try to do more because you’ll tire yourself out. Be sure the doctors order home health support for you including a physical therapist. Don’t be afraid of filling up your pill box. Don’t be afraid of calling your post-transplant coordinator with questions. Don’t be worried about raising money – HelpHOPELive will help you.


Learn more about life after transplant by checking in with Doug and his family at helphopelive.org. Want to learn more about transplant preparations, costs and fundraising options? Find more transplant stories like this one.  

The Rewards And Challenges Of Transplant Social Work

You already know what it feels like to prepare for a transplant as a patient. But how do transplant professionals view the process? We asked Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care, to answer our questions.

heart in hands transplant


What are some of the biggest challenges of transplant social work?

At times, I really, really want a particular organ recipient or donor to succeed, but based on his or her circumstances, that person is just not a suitable candidate. After years and years of this line of work, I have to console myself with the truth: transplant is not for everyone. For some, a transplant will make the situation worse instead of better. It’s difficult to keep that message at the forefront when the person in front of me truly believes a transplant will save them.


What are some of the rewards you experience?

Just this week, two people were transplanted in a row. Now, they are delighted to be breathing without supplemental oxygen and walking more easily than they have in a long time. To see joy and relief on the faces of transplant recipients and their family members is wonderful. I love seeing patients years post-transplant living full lives that honor their donors. Transplant remains a daily part of their lives, but it is no longer the central focus.


Have you witnessed areas of progress in transplant assessment?

Within the past few years, we have become more invested in transplant assessment tools that will give us concrete, unbiased information. When a doctor recommends lab work, those tests will result in definitive numbers that the doctor can use to diagnose and treat you. When you’re dealing with social and emotional factors, it’s far more difficult to accurately quantify and represent a patient’s profile.

We have started using a validated measure that is linked to patient outcomes developed by Jose Maldonado at Stanford. I use this risk assessment tool to come up with a score that reflects a candidate’s psychosocial situation. It’s imperfect, but it’s absolutely progress. It makes it far easier for team members to compare information and communicate across specialties. Personal and even subconscious biases are always a factor, so it’s extremely important for us to continue to take steps in this direction.


What advice would you give to those who are considering transplant social work?

Do it! It’s stimulating, rewarding, wonderful work. I absolutely love it. 15 years in and I’m not bored yet!

Quality improvement is really important in transplant in general and at UNC in particular. We are always learning and working to do things better. There are advances in medication, medical techniques, social evaluations and other areas happening constantly. It’s really an interesting place to be.


Share your experiences as a transplant candidate, recipient or social worker on Facebook.

6 Ways To Help A Loved One Prepare For A Transplant

Do you have a friend or family member who is preparing for a transplant? Here are six key pieces of advice for caregivers and supporters from Laurie McDonald, a clinic social worker and case manager for the UNC Center for Transplant Care.


Ask the person what he or she needs. Don’t assume you already know.


Be involved with the person’s care team. I love when I see a whole group of people come to a patient’s evaluation. They all get to learn about the process together, and identify where they can fit in and help.


Your loved one will need emotional, physical and financial support. Every person must find the way they can contribute most based on interests, skills and comfort levels. One person shouldn’t (and can’t) do it all.


Prepare for some surprises. Support networks are not always what you’d expect. Long-time friends may falter while people who are barely acquaintances step forward and come through.


A real challenge after transplant is dealing with medications and their side effects. Your loved one’s mood might be all over the place. Don’t take irritability and other side effects personally. Develop a protective skin.


Find your own outlets and support networks. Everyone needs a break.


What’s your best piece of advice for helping a loved one prepare for a transplant? Share your thoughts with us on Facebook and on Twitter.