Today, on August 22nd, I celebrate 13 years of life since my bone marrow transplant in 2012. On this day every year I think about my donor who gave me a second chance to live. I am forever filled with immense gratitude for her selfless act.
The number 13 is seen as lucky by some and unlucky by others. As I reflect on a string of health challenges which consumed me throughout the past year and a half, I have come to realize that my 13th year post-transplant was simultaneously unlucky and lucky.
Do not be alarmed! I am now nearly on the other side of these health struggles. For those of you who don’t know what I went through during the year of our wedding, I will fill you in on the order of events first. Then I will share my reflections and learnings. It has always been my experience in life that my greatest challenges have also been my greatest teachers.
(I apologize in advance, because there is no way to keep this brief. So, grab your coffee, and please stay a while! Or, just skip to my list of reflections at the bottom of this post.)
In March of 2024 I had COVID for the first time, and it knocked me down. In April I learned that my pericardial effusion (fluid in my heart) had returned (I had fluid in my heart years ago, as a result of the heart damage I experienced from chemo when I had Leukemia). I also began a hair loss journey in April 2024, from the trauma of having a high fever for several days during COVID. In June of 2024, I contracted Influenza A and shortly after experienced pain in my chest. Knowing that I had fluid in my heart, and out of an abundance of caution, I decided to go to the ER. This is when I was found to have also contracted Valley Fever (it’s an Arizona thing). In some cases, Valley Fever resolves without treatment, but in my case, it left a cavity (hole) in my lung which would need to possibly be surgically removed due to its location on the edge of my lung, but definitely it had to be treated with an anti-fungal (Fluconazole). Fluconazole is known to cause hair loss, so double whammy on my hair loss situation! Just what a bride-to-be wants to hear, right?!
I underwent a bronchoscope in July 2024 with some recovery complications and intense pain which landed me in the ER once again. Loads of labs, scans, tests, doctor appointments, treatment plans, and some confusion ensued during the summer months of 2024.
Meanwhile the fluid in my heart continued to build, but the “watch and see” approach was still my doctor’s preferred treatment plan, as draining fluid from around the heart is risky and avoided when possible. “Your heart is not being impacted” is what I kept being told. To which I would say, “please keep in mind I am getting married in November!”
In early September 2024, I was no longer tolerating Fluconazole, which prompted a switch to a different anti-fungal (Posaconazole). It was now mid-September, our wedding was in less than two months….and my hair continued to fall out! In late September, I went for an echocardiogram and was told that the fluid had increased again and there were now pressures on my heart to be concerned about. The doctor on call (not my doctor) told me that I should go straight to the ER. Having been to the ER twice already in 2024, and not wanting to go back, I REFUSED (looking back it was very unlike me and I should have followed doctor’s orders)! I consulted with MY doctor the next day, and based on the fact that I wasn’t having any symptoms, she validated my decision to not go to the ER.
My doctor wanted to schedule another follow-up echocardiogram on October 22nd so that IF I was in need of the pericardiocentesis procedure (to drain the fluid in my pericardium) there would be time for that before our wedding on November 10th. Due to a scheduling glitch, this appointment never got scheduled! “Ooops, we will do it in November”, said my doctor. So, on November 7th, just three days before our wedding, I was having an echocardiogram to check on the status of the fluid in my heart. This was both a recipe for disaster and a saving grace!
At that echocardiogram appointment I was found to be in a state of emergency and needed to have the pericardiocentesis as soon as possible. My heart’s ability to pump was now being impacted from the pressure of the fluid in my pericardium. My doctor said, "maybe we can do the procedure tomorrow, on November 8th. It is a one-night stay at the hospital, and you’d be out the following day in time for your wedding." Well, the following day was our wedding rehearsal at 11:00 AM, and I knew from having this procedure before, that you are not discharged from the hospital until 5:00 PM the next day. I was NOT about to be absent from my own wedding rehearsal, so I elected to postpone the procedure until after the wedding!
I had remained calm up to this point, but being three days out from our wedding and needing an emergency procedure, I felt slightly defeated. Do I cancel the wedding? Do I cancel the mini honeymoon that was planned for afterward? My goodness, what unbelievable timing! Meanwhile my hair was still falling out and people were due to arrive in town the following day on November 8th for our November 10th wedding. I just couldn’t bring myself to cancel! (Keep in mind that during all of these months of health events I was just trying to plan our wedding…while also working a VERY full-time job!)
I took my chances and proceeded with the wedding and our mini honeymoon to Santa Barbara. On our wedding day I was a bride in need of an “emergency” heart procedure, I sported a hair topper to hide my hair loss situation, and I had lost a lot of weight due to the Posaconazole (the second anti-fungal med), and there was nothing I could do about that. I made it through the wedding day and we were on our way to Santa Barbara for our mini honeymoon (against my doctor’s and my family’s wishes), with the pericardiocentesis procedure scheduled for as soon as we returned. My doctor insisted on doing a telehealth call DURING our honeymoon to make sure I wasn’t having symptoms, and to make sure I had chosen a hospital in that area in case I needed one. Looking back, I was really taking my chances!
To make a long story short (haha), in mid-November a half liter of fluid was drained from my heart. A week later the fluid was found to have returned, which earned me a seat in the cardio-thoracic surgeon’s office. My team of doctors decided that I should have a pericardial window surgery where they would cut a hole in my pericardium in order to re-route the excess fluid in my heart to my abdomen. This would allow me to not constantly be tracking the status of the chronic and recurrent fluid. I went as far as being scheduled for my pre-op, and went in to have labs in preparation for the surgery and then my doctor discovered that my problem was actually the inflammation in my pericardium (called pericarditis) which she believed was causing the fluid build-up. She decided against the surgery at the last minute because she thought the surgery would cause more inflammation, and then there would be a greater amount of fluid, and I would be worse off after the surgery. PHEW! It was then decided that I needed to be put on steroids (Prednisone) to try to treat the inflammation, with hope that the decreased inflammation would also decrease the amount of fluid. Ok, let's try it! It was now December 2024, and my falling out hair finally began to slow. However, in January of 2025 it started to fall out again due to the prednisone dose I was on. So, that's a triple whammy on the hair loss!
I was on a very slow tapering dose of Prednisone….until I wasn’t, because in late Feb/early March the Prednisone was no longer working. I was having pain from the inflammation in my pericardium every time I tried to taper the Prednisone. At this point my doctor decided I was a candidate for Arcalyst…a weekly self-administered shot which helps to curb pericarditis (inflammation in the pericardium). It took a while for me to begin this treatment, and I still had several weeks of tapering the Prednisone even though I had begun the Arcalyst shots. Eventually, I went off of prednisone completely as well as all other meds I had been on, except for Arcalyst, which I will remain on for one year. My Valley Fever was eventually resolved, and I did not end up needing to have a surgery to remove the cavity in my lung, as it had closed up. My hair began to sprout sometime in late April/early May after losing about 75% of my hair and after it had been falling out for a full year!
Today, I am doing pretty well…except for some pitting edema I experience on a regular basis in my left foot and ankle. The Arcalyst shots seem to be doing their job to curb the inflammation in my pericardium. I am on the brink of about 10 follow-up appointments at the Mayo Clinic, so we will know soon exactly where I stand.
That’s my 13th year post-transplant health story (in a nutshell, haha). Now for my reflections:
1. My health challenges kept me grounded at a time when it would have been really easy to be hyper focused on planning a “perfect” wedding. My over-achieving perfectionist tendencies had to succumb to my focus on fighting through my health battles. Yet, at the same time, the wedding planning process also served as the best reprieve from my health challenged life.
2. Sometimes what we dream of and envision for ourselves is not actually achievable, due to no fault of our own. We have to accept what is and find contentment in our alternative existence, whatever it may look like.
3. In tough times it is important to lean on those who support us most. I am grateful for the many people who became my support system through all of this. Thank you to my family, my husband’s family, my work family, my doctors, and my friends. It was A LOT, and you supported me in all the many different ways that I needed support. To quote the mother of Mr. Rogers (from Mr. Rogers' Neighborhood), who would tell him to "always look for the helpers. You will always find people who are helping", when he was a young boy and would see scary things in the news..... I had so many "helpers", figuratively speaking, to get me through this time.
4. I was once again reminded of how fragile and precious this life is. I came out of all of this with a renewed joy for the little things, a stronger desire to stay positive and to keep laughing, a reminder to cherish time spent with those I love most in this life, a renewed passion for the things that bring me the greatest joy, and a reminder of how so many of us are fighting a battle others know nothing about. Give one another grace. And of course, I was reminded that having good health is the best kind of wealth!
5. There is more to life than our daily grind. It is important to take time out, feed our souls, and fuel our passions. We don't know what tomorrow brings.
6. Adaptability, resiliency, persistence, the ability to remain calm, and keeping a sense of humor are still my superpowers!
7. Always be an advocate for your own health. You know your own body better than your doctors. If something doesn’t feel right, it’s probably not! SPEAK UP!
8. ONE DAY AT A TIME is still my mantra for my life…(since 2012 when I was battling Leukemia). It applies to my health, my work, and my approach to living life in general.
9. Hair growth shampoos and conditioners don’t really work! Save your money! ;)
10. The best reflection from year 13…I am so grateful to be married to my kind-hearted, hard-working husband. He always encourages me, cares for me, and loves me despite my many health challenges. We celebrated with a wedding that was perfect FOR US, and it’s a miracle that it was even pulled off! Year one of marriage has been a little rough managing my health like a full-time job, but it has also been so beautiful. Our favorite place is still wherever our favorite people are, as we build memories and cherish moments. I am lucky because I get to live this life and it is an honor to now share this life with my husband.
Now, on to year 14 adventures…
