Introduction

Dear Reader,

        I am a 27-year-old recovering from a bone marrow transplant for very severe Aplastic Anemia (AA). While researching the disease and the transplant process, I found frustratingly few non-clinical accounts of patient experiences, much less of patients with AA. I had so many questions that no one could answer. I was afraid of joining the Facebook groups because it would be too overwhelming. The stories I found, understandably, did not have many details. In this blog, I will detail my experience and what I learned. I am writing Parts 1-4 at about 55 days post-transplant (spoiler: everything worked out). I will post a recovery update later on and other updates years out if I feel it is prudent. I hope this helps people through their unique AA journey in the future.

        I talk about medical things according to my own understanding. I am not a medical professional and what I say should not be a replacement for information from a trustworthy medical resource.

        Although this is a pretty detailed account of my experience, there is a lot of hard stuff I left out. I am happy to answer questions in the comments. I set it up so I will get an email any time a comment is posted, so feel free to ask a question even years after I posted this. Good luck and good health!

Love, Nadia

Table of Contents

Part 1: Illness

1. Onset

2. Infections

3. Patient/ Self-Advocacy

Part 2: Transplant

1. Fertility
2. The Donor
3. The Transplant
4. Hair Loss
5. Catheters

Part 3: Recovery

Part 4: Mental Health

1. Therapy
2. Self-Love
3. Writing/ Drawing
4. Moving Forward

Timeline

June 7, 2021 - First hospitalization

June 14 - Diagnosed with Aplastic Anemia (while in hospital)

August - City of Hope doctor began searching for donors

Late September - City of Hope doctor found potential donors

November 2 - Checked into City of Hope as outpatient for pre-transplant appointments

November 7 - Admitted to hospital; chemo started (Day -5)

November 12 - Transplant Day (Day 0)

December 6 - Discharged from hospital (Day +24)

February 1, 2022 - Left California to go home (Day +81)

February 20 - Day +100!

 

Part 1: Illness

        Other than all the issues with the infections described below, the main symptom of Aplastic Anemia for me was fatigue. I was tired all the time, due in large part to the low hemoglobin. I always felt significantly better the day after a blood transfusion. I would try to get all the chores done then, because the other days, I could hardly walk or stand without getting winded and my heart rate jumping up.

Onset

        My AA basically appeared overnight. The week before I was hospitalized for three weeks, I hiked 11 miles with no problem. The first sign that something was wrong was when I noticed small, reddish dots (petechiae) around my body, then began to bruise extremely easily and severely. I felt and looked fine otherwise, but a blood test showed that my platelet count was at 6k (normal is 150k-450k). My other cell lines were fine and I got a platelet transfusion that day. A few days later, my platelets plummeted again and I went back to the hospital for another transfusion. My other cell lines (red and white blood cells) also began to quickly go down and that’s where they stayed. From June 2021 until after my transplant in November 2021, I had to get blood and platelet transfusions about once a week, sometimes more.

Infections

        From June through September, I experienced nonstop infections caused by microorganisms that normally live in the body and only pose a threat when the immune system is compromised, as was the case with me. No matter how many precautions I took, there was nothing I could do about these infections. Early on, I got sepsis multiple times, which happens when the infection spreads into the blood stream. If not caught early, this will lead to death. I basically lived at the hospital. I felt like a pinball being thrown around with no control over my life.

        By September, I felt that I could not go on as things were. I learned what I could from what I had experienced thus far and made changes accordingly. These changes were:

• Taking my temperature and blood pressure every day 
• Also taking my blood pressure before I left the house any time because if it was too low, I was prone to fainting
• Writing down all my symptoms, no matter how small, in a notebook with the date
• Reporting my symptoms to my hematologist at the cancer center as soon as they appeared, even if I didn’t think it was a big a deal 
• Do not wait to report symptoms. Normally, I would wait a few days to see if they went away. Without an immune system, more often than not they did not go away and in fact got much worse. This is what led to sepsis early on.
• Went to the hospital as soon as I got a fever

        After implementing these changes, I stayed out of the hospital for three weeks straight and my next two hospitalizations before transplant only lasted 2 days and were not traumatic as my previous ones had been. I made important personal changes too but the ones above were essential for my physical well-being. If someone had told me to do all these things from the get-go, I think I could have avoided some of the suffering.

Patient/Self Advocacy

        Being in the hospital for so long under such dire circumstances felt like living in a different world where I was helpless and at the mercy of overworked strangers who did not really care about me. I had to tell nurses and doctors what I needed. Here are some ways I learned to advocate for myself:

• Asking for a 20 gauge IV catheter and not accepting anything bigger 
• This was huge. In the beginning, they always put larger IVs in me, which is good practice in an emergency setting but was not necessary for my long-term situation. I learned from the oncology people that blood products and medications can easily be infused in a smaller IV. There was no reason for me to have a larger IV but I had to fight for the 20 gauge every single time.

• Always checking that they gave me the right medications with the right doses 
• Asking for a repeat blood test if the result didn’t seem right 
• This was also huge. Most doctors only pay attention to the numbers without truly (or at all) assessing the patient. One time, my hemoglobin showed up as 7.4 when it was in the 6 range the days before and dropping. I didn’t say anything and it turned out that my hemoglobin was actually 5.5 and I didn’t get a transfusion because of delays until the next day when it was at 5.2. I felt physically terrible and then required more units than I would have otherwise. 
• Another time, my hemoglobin showed up in the 4 range so they ordered a transfusion of multiple units, but I knew it wasn’t that low because of how I felt. I said I would refuse a transfusion until a new test was taken. When the new test came back, my hemoglobin showed above transfusion level (every doctor knows that unnecessary transfusions must be avoided). 
• Saying no. 
• The patient ALWAYS has the right to refuse treatment. That includes refusing to take medications, to receive a transfusion, or to have an IV inserted. It also includes leaving the hospital against medical advice (AMA). Contrary to popular belief, leaving AMA usually does not have consequences with regard to insurance (i.e. insurance will usually pay for the hospital visit even if you left AMA).

        Taking into account medical recommendations and risks, you decide what is best for you and your health. Only you know what feels right and wrong and it’s important to communicate that so everyone is on the same page and you get the best care that you need.

Part 2: Transplant

        ATG is a treatment for Aplastic Anemia (which did not work for me at all), but a transplant is a cure. The AA will not come back after a bone marrow transplant. Also as a fun side note, a transplant can cure some autoimmune diseases as well. My doctors expect my transplant to cure my Celiac Disease. I am SO excited about this and will take a blood test and start eating gluten again at three months post-transplant.

        I was diagnosed in June 2021 and was told right off the bat that I needed a transplant. My state does not have institutions that do allogeneic transplants, so my mom and I chose to get treatment at City of Hope in California. City of Hope has great ratings and has performed one of the highest number of transplants on AA patients (still low, like 17 or something because it’s so rare).

Fertility 

        A bone marrow transplant has consequences for fertility. This should have been one of the first things talked about after I was diagnosed, but no one mentioned it until a month before transplant when it was almost too late for me to take any measures to preserve my fertility or freeze eggs, which is a lot more difficult and expensive than preserving sperm. I did not end up freezing my eggs because it was all a rushed mess and it was not medically advisable for me to undergo the procedure with virtually no platelets or white blood cells. I did, however, get an injection of Lupron before my transplant which might somehow help preserve my fertility according to the oncologist/ gynecologist. Nothing would have been done to address the fertility issue if I had not repeatedly pushed for it. I still don’t know if I’ll be able to have biological children but I have heard of other AA patients who were able to conceive naturally after a transplant. I still had to sign a form saying that I understood that I would likely be sterile after the transplant.

        I don’t understand how it works, but I will get two more shots of Lupron 3 months and 6 months after the first one. I also had the Mirena IUD when I got the transplant, which the doctors said might also help preserve my fertility.

The Donor

        I was very lucky to have an unrelated donor who was a full match. All I know is that he was a 31-year-old male located in the U.S. at the time of donation. It goes without saying that I am incredibly grateful for him! The bone marrow I received was fresh (not frozen). They took an entire liter (2 pints) of bone marrow from the donor a few days before the transplant. That accounts for 3-5% of the average person’s total bone marrow (fun fact that I learned in a pre-transplant PowerPoint from the hospital).

The Transplant 

        The liter ended up being 3 bags of marrow that took almost 8 hours to infuse through my Hickman line. 8 hours is not typical for a transplant; many only take 1-3 hours. I had one weird reaction during it where I started shivering and shaking. They gave me more Benadryl and I slept for most of the day. Otherwise everything went well but I felt really heavy and fatigued.

        I had been in the hospital for 5 days before transplant day, during which time I got chemo and one “shot” of total body irradiation (TBI). The chemo just went through the IV and the radiation involved me standing on a platform in front of a huge machine that did its thing for a total of 30 minutes (15 with me facing front and 15 facing back). This was a tiny fraction of the radiation that people who have cancer get. I got two more doses of chemo at 6 and 11 days after the transplant.

Hair Loss 

        Although I got less chemo than people who have cancer, my hair did fall out and I had to shave my head about two weeks after the transplant. It didn’t start falling out until about day 10. It was really hard. I cried while it was happening and after, but then it was fine. Almost every other patient also had a shaved head and there was really no other way around it. I considered doing the cold caps that supposedly freeze your follicles while you get the chemo, but I decided against it because it seemed like another discomfort on top of everything else. Plus I always wanted to rock a pixie cut. For now, I have a wig that is the ideal version of my old hair and makes me look amazing, I dare say. I was overwhelmed by the world of wigs and went with an expensive one ($200, which was the cheapest of the nice ones I’m pretty sure) from the salon place at the hospital. It’s a Jon Reneau synthetic wig with smart lace (this is key) that makes it look like my real hair and is nice and breathable.

Catheters 

        This is my unlucky experience with catheters, take from it what you can: First I got a PICC line in my right arm. I only had it for a few weeks before blood clots formed in the veins that it was accessing. My arm hurt a little bit when I lifted it a certain way. I thought it was nothing but mentioned it to my doctor anyway and she ordered an ultrasound that showed the clots. They removed that PICC line and put another one in my left arm. That one caused clots immediately and it was also removed. I had to deal with horrible IVs all the time for a month until I finally got an appointment to place a port in my right upper chest area. I like the port because it is really comfortable and you don’t have to do anything to maintain it like changing the dressing or flushing it every day. You can even shower and swim with it with no problem. Here’s the thing though (which I didn’t learn until right before my transplant): the port cannot be used for the bone marrow infusion. Theoretically, it can, but the line is smaller than a PICC or a Hickman so there’s a risk of it damaging the stem cells, which are larger than red blood cells. So I had to have a Hickman put in on the left side of my chest while the port remained on the right. The plan was to take out the Hickman before discharge and continue using the port for blood draws and transfusions, but it didn’t happen that way for unimportant reasons and I got it removed a month later. So for two months I had two central catheters, which was not fun but was fine.

Part 3: Recovery

        Before my transplant, I had no idea what anyone meant when they talked about the 100 days. It is standard that transplant patients remain under careful and close observation for 100 days after the transplant because that is when signs of Graft vs. Host Disease (GVHD) are most likely to appear. GVHD is the biggest threat to patients post-transplant.

        I was discharged from the hospital on December 1, 2021 at 23 days post-transplant. That left me with 77 days to go before I could go home, since I got my transplant out-of-state.  As I write this, I am at about day 55 post-transplant and I feel GREAT! I haven’t needed a transfusion since the day I was discharged. At that time, my white cells had started to creep up but were still pretty low. My platelets weren’t getting higher but they weren’t getting lower either, which was good. My red blood cells had still been decreasing and I was still getting blood transfusions regularly. But sure enough, the red cells started climbing after that too and my hemoglobin has not dipped below 7 since then.

        In the weeks after discharge, my white blood cells reached normal levels and my platelets skyrocketed and are well within normal range (yay!). My red cells are still lagging behind but, at 10.1, are the highest they’ve been since June!

        So far, I have not had any symptoms of GVHD or any new infections. I have been feeling better and better since I got out of the hospital. I have more energy now than I’ve had since June as well. Two weeks ago, I was still getting winded easily from walking too fast or standing too long, but now I can walk quickly for a mile or more with no problem. I even have moments when I forget I had a transplant.

        77 days is a long time to be away from home (and your amazing dog companion) in limbo when you feel good and are relatively healthy. I do not intend to stay the full 100 days. If things continue as they are, I intend to leave on February 1, which would be day 81 post-transplant. In the recovery update, you will find out if I did leave early and how it went. Wish me luck!

         

P.S. One of my acquaintances (who is a survivor of childhood cancer) got in a mountain biking accident last year and had to have his leg amputated. He recently posted on Facebook that one year after the amputation, he completed his first triathlon. Wow! This inspired the crap out of me to set goals that surely my doctor would not believe are realistic for 2022 (like running a 10k when I’m not a runner).

Part 4: Mental Health

Therapy

        My mom raised me to really value mental and emotional wellness so I regularly go to therapy even when things are great because it helps me learn about myself. I had been going to therapy once every 3 weeks, but after my diagnosis, I changed it to every week. While in California, I’ve been seeing a psychologist through City of Hope who specializes in helping people navigate the transplant process. So that’s been great and I highly recommend everyone, with or without AA, to talk to a therapist if they can!

        My psychologist has also been helpful in talking through the stress dreams that started the night before I left for California. Even though during my waking hours I feel good, I am clearly still really stressed out. My dreams reveal that I am stressing about my self-image (namely, bald head and being underweight for the first time in my life), my stay in California (the dream was that I was being held hostage by people who were saying I was there for my own good), and my performance moving forward (the dream involved taking a test that I didn’t understand and was running out of time while everyone else already finished). There’s a lot to work through! I did not think this was the most stressful thing I’ve ever gone through, but I think I’m starting to realize that it is.

Self-Love 

        I made huge life changes and learned to love myself for the first time in 2020. I did a lot of work on myself that year and it was unbelievably life-changing. I don’t know how I would have been able to get through 2021 if I hadn’t done all that work. Some people insisted that I should take medications for anxiety and depression because of the situation I was in. There is no shame at all in taking such medications, but I knew that I was not depressed and that my anxiety was manageable. I was actually surprised at how I was coping with everything.

        Part of self-love is feeling and expressing one’s emotions openly (when it’s safe). When I wasn’t strictly in survival mode, I thought about what was happening and I cried. For the first time, I was aware that what was currently happening to me, especially a lot of what happened in the hospital, was traumatic. I named it for what it was in the moment. I never used to cry in front of people because I thought it made me look weak. But now I think it makes me strong that I can do that without feeling little (and it doesn’t matter to me if other people think I look weak because I know I’m not).

Writing and Drawing

        In addition to therapy and plain old introspection, journaling has always helped me express and understand myself. Writing is a big part of my healing journey. This long account of my experience and what I’ve learned is as much for me as it is for others. I also recently discovered that I can actually draw pretty well. My second drawing, after a self-portrait that helped solve some self-image issues, was a Christmas present for my step-dad who shaved his head the same day as me as a surprise. I drew both of us next to each other with shaved heads wearing shirts that said “Shaved Heads Club 2021” in a Rock n’ Roll style font. My psychologist pointed out that I use drawing as a tool for healing and to emphasize my strengths.

Moving Forward

        It’s no secret that I am itching to get the heck out of here and go home. I understand that GVHD could be looming around the corner, but there is no sign of it (thank goodness). I’m sure my doctors don’t intend this, but I feel like they are telling me that I am weak because they focus on all the things I can’t do and how compromised my immune system is, and how even when I stop taking the immune-suppressing medication, my immune system won’t be what it once was. They say I am as much at risk of infection now as I was before my transplant. I get what they are saying but I do not see any of this reflected in reality and, frankly, I don’t accept it at face value. I don’t feel weak at all and I don’t intend to let the transplant act as a hindrance to doing anything I want. My immune system has a lot to learn, but I’m not going to let it stop me from living a better and fuller life than ever before. Of course I will continue taking all the necessary precautions regardless of the conditions of the pandemic.

        Notwithstanding the headstrong paragraph above, I’m still anxious and scared. I’m nervous about going home where I live alone with my dog, because last time I was there, I couldn’t cook for myself or stand in the shower for more than a few minutes. I’m anxious about going back to work and feeling like I have no idea what I’m doing. I’m scared of getting sick. I’m scared that the guy I like won’t accept me without my wig. The list goes on.

        I am also nervous to tell my doctor my decision to leave on February 1. But then I remember that I am a grown adult in charge of my own life. I am very lucky and extremely grateful for all the opportunities I have had and for all the opportunities that lie ahead. I don’t subscribe to the second birthday idea of the transplant, but I cannot deny that November 12, 2021 marked the end of me and the beginning of me in some ways. I am moving forward with a new lease on life and I am going to live like hell.

Update: One Year Out

 Today, I am almost a year post-transplant and the past 8 months have been all the things.

 

Getting home: February 1, 2022

        I did come home early! Thankfully, I did not have any signs of serious GVHD so I followed through with my plan to leave 20 days early. I got home on February 1 and was super energized and elated. I had so many plans that were put on hold. That day, I installed a new tv (new to me, it was my friend’s old tv), set up my internet, and was ready to hit the ground running. But that night, I started to cry and I didn’t stop crying for months. I cried every day, almost all day, for three months. I did not see that coming, as I was doing very well in California. I laughed regularly, trained to run a mile with mom (and ran it successfully before I left), etc. But I guess I was still in survival mode then. Coming home, it all spilled out of me. I had a mini reckoning on Day 100 post-transplant. As I wrote that day, I felt: love, gratitude, power, helplessness, fear, uncertainty, resilience, strength, faith, grief, etc.

 

Hiking goal: April 2022

        In an attempt to cope, stay busy, be in nature, and build up my strength, I decided to hike 100 miles in 5 weeks. There’s not much to say about this other than that I did it and it was a deflated victory because my emotional pain remained. I was still crying most of the time, but now with giant, muscular calves. And I did proudly tell my transplant doctor what I had done at my six month follow up in May.

 

May – September

        By May, the crying subsided and I felt truly happy again. My six month follow up went well. I asked my doctor if it was normal or absolutely amazing that I hadn’t gotten sick at all. He said if you go in healthy, you come out healthy. Still, I was astounded that I felt so good in terms of physical health after everything that happened.

        In May, I also turned 28 years old. My birthday, as you can imagine, was a big deal because for a second there, it looked like I might not make it to 28. My entire 27^th year was shrouded by the illness and transplant. And at 28, I was officially older than my parents when they had me. I looked ahead at an unknown future where I may not be able to have biological children – something I always took for granted.

        During this time, I began receiving all of my childhood vaccinations again. I never gave babies enough credit for being complete champions during this process! Although I did not have big reactions to any of the vaccines, getting up to 7 at a time was rough and I felt sluggish for days afterward.

        I also went back to work in March and, as you can imagine, was having a hard time. I felt pretty unmotivated in most things and work was no exception. This job had been my absolute dream job and I worked really hard to get there. But, as more than one therapist told me during this time, there was no going back. It became clear to me that I needed to find a new way forward in life because, as hard as it was to accept, I was different.

 

October

        That brings us to today. I am on the precipice of monumental change. In three months, I will leave my cushy job and leap into the unknown. I have no idea what is next in the big picture, but my immediate next step is to take a break on my own terms and figure myself out again. I am extremely fortunate and grateful that I was able to save a good amount of money that was not affected by the illness and transplant. I will live off of that for a while, travel, and do conservation service work (which is completely out of my career field).

        The end of the everyday life I chose for myself before I got sick also corresponds with the end of the immediate post-transplant period. I got my port removed last week. Next week, I will receive my final round of childhood vaccines until next summer. Moving forward, I will be seeing a lot less of my hematologist at the Cancer Center. My one year transplant follow up in California is coming up. November 12^th is my first rebirth day (I prefer this term over second birthday) and I plan to do one of the most difficult hikes where I live.

        This has been a hard year, after a much harder year in 2021. It was a year of recovery in every way, and of grief. I am ready to move forward and live life in a new way. One of the main reasons why I am leaving my job is because I want to do what makes me feel alive. Something I haven’t mentioned in these chronicles of Aplastic Anemia is that a year before I got sick, I began a life-changing journey of self-love, self-discovery, and spirituality. It is what helped me get through the illness and transplant. And now, post-transplant I want to spend as much time as possible doing things that make me feel the most alive. When I am outdoors hiking, camping, watching birds, spending time with my dog, etc. I feel present, joy, peace, and connected to the love of the universe. I’m going to do more of that! To give you an idea of how transformative that is for me, when I told my mom about it, she said “wow, considering how you were growing up, the last thing I would expect for you to turn to is nature.”

        When the idea came to me about the next steps I should take, coupled with the end run plan for the immediate post-transplant period, it felt like pieces of a puzzle coming together after feeling lost for a long time. I think I would have eventually made the decision to do what makes me feel alive even if I hadn’t almost died, but it is what it is and I am not wasting any more time.

 

P.S. Hair update:

        My hair journey has been its own fun subplot in the midst of everything. For a while, I wore that fabulous wig, Claire, but now she is adorning the head of another person receiving chemo. Short hair actually really suits me and I have liked styling it in different ways as it grows. My hair grew slowly and unevenly until recently, so I’ve been getting regular haircuts. I chose to leave it short for the time being because, having wavy hair, it is taking much longer to grow out than straight hair and growing it out is its own awkward commitment that I simply don’t have the energy for right now. So we’ll see!