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transplant talk

i have what now?

As I sit quietly in my individual “pod” in the infusion suite at Columbia Presbyterian, I reflect on my recent diagnosis. I am between wanting to sleep due to the Benadryl and jumping out of my skin from the steroid push. My infusion of Rituxan comes shortly after these medications and will last around three to four hours.

Have you ever been at that point that you are incredulous about a new diagnosis? Have you ever been angry about it? Scared? Have you ever thought: I have WHAT now? And why? Normally, I answer “no” to all of the above. Just having started treatment for Post-Transplant Lympho-Proliferative Disease (PTLD), I went through a range of emotions from disbelieving, scared, angry to finally accepting it. But it took me many months and a lot of processing.

I feel I am constantly coping and adapting to a new normal. Whether it is a decline in my PFTs, a pulled muscle or osteo-arthritis that limits my ability to exercise, skin cancer or my having constant sinus infections, I try to work around it when possible to live my life. I am always pushing to find options to my various situations. I am constantly working around my sinus pain or just keeping up with my doctor appointments to stay on top of it all. But having this cancer, PTLD, really threw me. One of the hardest parts was waiting for a correct diagnosis. The testing and having a surgical biopsy were more traumatic and painful than I expected.

The last year brought many health issues directly following the death of my mother—melanoma, two rounds of IV antibiotic treatments within eight weeks for sinus infections, a blood clot from the PICC line that involved a hospital stay and then these mysterious lumps that were showing up in a few parts of my body (the lymph nodes protruding leading to PTLD). Even though my mom had not cared for me physically, as she did when I was waiting for a transplant, she had been my emotional support.

That period of extreme loss and depression really was a challenge. I missed my mom horribly. I cried almost every day. I wanted to die. And I am embarrassed to write this, but that was how I felt for a few weeks. Then I realized, my mother would not want this, she did everything in her power to keep me alive and feeling well. After that the proverbial doo-doo hit the fan. It started with the sinus infection that lasted most of the summer. And then the rest followed.

My mom also taught me how to cope and problem-solve. Being proactive this past year was one of the things that helped me stay focused and feel like I was trying to solve the problem(s). I kept lists of when to see doctors, when to stop taking Coumadin for the surgeries, when to order my meds etc. I tried to stay orderly even though at times my mind was in disarray from the loss and diagnosis. Also, staying with a regimented exercise routine, even if it was only 30 minutes a day and was a walk in the park with my dogs, I did it. These things usually helped me clear my head to be less anxious.

There was fear of the looming “what if” people face with cancer. There is no cure, only remission; what if it comes back? I had to acknowledge my fear personally and with others to process it and then move forward.

I didn’t have the time to feel sorry for myself and even if I did, it really would not have served me. Victimhood can be stifling in its own way. Mainly, I was angry. And maybe that anger propelled me to start to try to just take care of things as best as I could. During my IVs, I got the melanoma removed. Then after that, eventually, I dealt with the PTLD diagnosis to start the treatment of infusions that would hopefully get me into remission. I tried to stay positive. I distracted myself when possible with tennis and learning pickleball, which are both more social than just biking or swimming can be. Initially it was hard to be around others, but since it was usually fun to be in a group, my hectic health life melted away for the duration of play.

For the depression, I knew I needed help to work through my sadness after my mom died. I met with the transplant center’s psychiatrist who gave me an antidepressant that I had been on before. This helped me sleep and function. Just speaking to the psychiatrist to “unload” was a start. I then found a great CSW whom I now see weekly. She initially helped get over my guilt and loss over my mom’s death. I am more at peace with her death, but I will never be over it entirely. Talking to someone who “gets it” really makes a difference. She also helped me process my anger with the surrounding cancer, too. Of course, I spoke to those who knew me but I didn’t want to be a broken record and that was how I felt. I was stuck on my sad song.

I considered a bereavement group but realized I would be exposed to people with colds and possibly flu. Having to explain why I cannot do group hugs or be close to others during these sessions of crying and letting go would get tiresome. Wearing a mask might be too off-putting for something like that. I just felt, as I moved through this journey, seeing someone one-on-one was my best recourse.

Mom frequently told me, things could be worse. There always are people who are worse off than you. During all of this upheaval, I tried to remain grateful and see the bright side of things. I was grateful for many things: having my mom around for so many more years than I expected, being alive and celebrating 18 years post-transplant in relatively decent health, even the PTLD I was diagnosed with was the more benign kind. And I recently learned that I was in remission. I was not taking those things for granted.

Learning all I have in difficult situations (having CF, receiving a lung transplant, spinal fusion for scoliosis, late onset diabetes etc.) has taught me to discard misgivings and regrets and try to focus on what is happening now to actively move forward. Moving through a minefield is easier said than done. Going through life with many challenges helped me learn to communicate with my physicians: speaking up and advocating for myself. It helps me with tracking my health insurance—taking notes and whom I spoke to when and on what day. And, I really saw how it served me in taking care of my mother’s will. The lawyer’s office did a lot of it, but I still had to do the footwork: calling and going many places, mailing things to close her accounts and making copies of everything, keeping track of who I sent what etc. Even though it was tedious, being organized and staying focused got the job done. There were days I could not do it or I reached a roadblock. Usually, I could just put it all away and go back to it the next day…something I could not do in a crisis with CF.

For years, I lived in fear of how the loss of my mom would create a huge hole in my life. But now, almost a year later, I am more settled. I still cry about her not being alive. But I somehow came through this whole experience of losing her and going through a gauntlet of health challenges a bit stronger. And I feel that my coping and adapting skills that she instilled in me helped the most. 

Andrea is 53 and has CF. She is a Director of USACFA and is Webmaster and Executive Editor of CF Roundtable. Her email is:

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