Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.
Lamentations 3:22-23
According to UNOS, the average one year patient survival rate after lung transplant in the US is 87.4%. I am now part of that statistic. At three years, an average of 69.5% are living, and at 5 years, 55% are living. Of course, we know that statistics suggested that I should still be waiting for my transplant, instead of celebrating a year with healthy new lungs!
My friends who have had organ transplants told me this would be a rough and "bumpy" year, but that it would get better. Looking back, I can tell you they were right! It has been a roller coaster, but I am all the better for having taken the ride.
There are many words I could use to describe the past year- grateful, excited, scared, amazed, surprised, confused, humble, but there are no words in the English language that will adequately describe many of the emotions I have felt. What I can tell you, is that through all of these ups and downs, God's faithfulness has prevailed.
Here is a recap of the last year. When I started this blog, I was advised not to "sugar coat" anything. I have been transparent, but also I have tried to be encouraging. Some of the things you will see ahead may not seem so positive, but in the end, it's all good!
An angel, my hero, gifted me his/her lungs and I had the miraculous surgery that would change my life on 1-24-19.
Dr. Erin Gillaspie and Dr. Matthew Bacchetta, surgeons extrordinare!
Over the last 365 days:
I have had more IVs than I can count, including one in my foot
I have taken at LEAST 7500 pills (true statement)
I have been cared for by the best lung transplant team ever (Dr. Robbins, Dr. Norfolk, Dr. Shaver, Dr. Trindade, Jean Barnes, Elizabeth Gerstenfeld, Erin Mwizerva, Ginger Whittaker, and so many more!)
I have experienced two episodes of rejection
I have had had 9 (I think) bronchoscopies
I have had two sets of GI studies to be sure there is no reflux
I lived in a tiny apartment across the street from Vanderbilt with my husband for three months- and he survived!
I received sweet gifts, cards, and visits from friends
I had at least a million gallons of blood drawn
I have met fellow transplant recipients who are now like family to me (Terry Nixon, Stacey Cox, Amber Runions, Rachel Stanley, Courtney Nichols)
I received much encouragement from friends who received organ transplants before me- Karen Mitchell (double lung), my rock Ashleigh-Anne Hughes (liver), Cynthia Simmons (liver) and Jay Bernheisel (liver).
I grieved the loss of one of our 2019 Vanderbilt lung transplant buddies- Bridget "Sunshine" Perez, relentless fighter!
I met friends who have not yet had their transplants (Kristin Mitchell, Bushonna Early)
I had at least 5,000 pulmonary function tests
I developed high blood pressure from the anti-rejection drugs
I developed Stage 4 chronic kidney disease from the anti-rejection drugs, and got to have a fun kidney biopsy courtesy of the amazing Dr. Natalie McCall. (Take a look at the needle- I did not feel it even though all you get is lidocaine.)
I attended my nephew's wedding, and celebrated my birthday, and Mother's day with plenty of energy! I was even able to blow out my own candles.
I spent quality time with family
I endured three months of intense rehab, and walked my first 5K at 96 days post-op!
I was able to return to the job I love and colleagues who are prayer warriors and friends. Also, I did not miss any graduations!
I missed two mission trips to the Dominican Republic (two of the hardest weeks of my life)
I visited the emergency department four times, and was admitted to the hospital three times. Several of our graduates took care of me!
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I met Sandi Patty and Point of Grace!
I spent time with friends
I became a Donate Life ambassador
I did all of these things without supplemental oxygen. I came out of surgery without it, and I have not needed it since.
I learned how powerful body image is. Prednisone generally causes a puffy face and weight gain in certain areas of the body. Please do not tell transplant patients "Your face looks better fuller." Do not say "You needed to gain weight." Steroid weight is not healthy weight, it is a side effect of a drug. When we look in the mirror we do not see ourselves. We see Alvin, Simon, or Theodore. It is distressing. We know you mean well, but it hurts our feelings when you argue with us about it. After a while, it even makes us angry. You have no idea what this is like. As a matter of fact, you probably complain when you take a short course of steroids for poison ivy. We take large doses to begin with, and will take it at some level for the rest of our lives. If you want to say something, tell us our skin is so pink, or our eyes are brighter, or comment on how energetic we are. (Sorry if that was harsh.)
I learned that one of the most important things you can do is register to be an organ donor. 21 people a day die in this country waiting for organs. Sign up now at:
I learned that transplant is VERY expensive. We had to stay within 10 minutes of Vanderbilt for three months. Our apartment was $2800 per month. Hotels in the area are several hundred dollars per night. There are almost daily drug copays in the beginning because medications are changed so frequently. Your caregiver has to stay 24/7, and FMLA is often unpaid. We were blessed because we had resources. Many people don't. Some insurances have a small allowance for lodging, transportation, and food, but most do not. If you hear of a fundraiser for someone please participate. Lung transplant patients have to raise $10,000 before they are listed. Some of my good friends from church brought us frozen casseroles, and my work family filled our cabinets like an old fashioned "pounding,." It was hard to receive these gifts as we prefer to be the ones helping others, but we swallowed our pride and enjoyed it. If you are looking for something to do for a patient right after transplant- those are great ideas.
I sent a card and letter to Tennessee Donor services and they will send it to my donor's family if they would like to receive it. I really hope they do. It was so hard to write because I did not know what to say except "thank you." My words seemed so inadequate.
I adopted a tree in Union's arboretum in memory of my donor, and in appreciation for the lung transplant team at Vanderbilt. It is a shagbark hickory and is a high oxygen producer. Although it is just a seedling now, it will be meaningful to watch it grow as I pass this milestone each year. I hope to show it to my donor's family some day.
So, year one is a wrap. Although there were some "downs" with the "ups," I remained grateful. At first I felt guilty that I was not always cheerful and bubbly, and even grew weary of some of it. Post-transplant life is a full time job. Then I learned that others had the exact same feelings. I realized it was possible to be grateful and frustrated at the same time.
There is nothing I can do to show my appreciation for the miraculous gift I was given. I pray the family can find some peace in a life well -lived. May God bless them, comfort them, and give them peace.
I hope this story- God's story- encourages others. I don't know why he chose me to be a part of this. All I can do is give him every bit of the glory for anything good that has happened to me.
