GVHD

Today is the first official National GVHD day. This has been something that I have been wanting to write about for a while but I never took the opportunity. I want to explain what GVHD does to someone’s body and how it has affected me personally. 

GVHD has been the biggest barrier to my recovery and my survival

Battling a chronic disease can be really hard and lonely; hell, there were some days I would have rather died than have to face another day. Something has kept me showing up because I am still here. But I have to warn you, some of this post will be incredibly vulnerable and personal. The changes that my body has had to go through are horrific. However, recounting and sharing what I have had to go through to be able to find the gift of breath in my lungs every day is what keeps me going. I say I am writing this to encourage and educate people. But really, reflecting on what I have been able to overcome inspires me to keep going, knowing that nothing lasts forever and that someday I am going to wake up feeling healed and like myself again. 

What is GVHD?

GVHD is an acute or chronic disease called Graft Verses Host Disease. This is a disease that occurs in patients that have had a transplant (it can occur in any transplant situation, not exclusively bone marrow transplants). GVHD, in simple terms, is the consequence of a stem cell transplant attacking the body it is supposed to protect because the body sees it as a foreign invader. It is most severe in patients that have had an Allogeneic Stem Cell or Bone Marrow Transplant (BMT). This type of stem cell transplant requires a donor that donates their own stem cells they are considered the “Graft” and the patient receiving those cells is considered the “Host”. In most cases, a host that needs the stem cells will need someone who has the most similar antigens and immune system that closely mimics themselves. If there are too many unmatched cells, their body will retaliate, recognize those cells as “foreign,” and attack their own body and the immune system, causing severe complications. So the closer they are to a perfect match, the less likely their body will notice this major change and it will accept the new stem cells, in theory, of course. That is why there are organizations like Be the Match that have a national registry of people on call, ready to donate stem cells for people with life-threatening blood diseases and cancers. If you are not registered and want to help save a life, click the link below to get started. It just involves a cheek swab and is super easy! https://bethematch.org

The Graft, or the bone marrow donor, donates their stem cells by stimulating their stem cell production with a series of shots several days before “harvest day,” which is the day their cells are collected and their blood is circulated through a machine that separates out their stem cells. These are then collected and given to the Host through a simple blood transfusion. In short, those cells find their way into the bone marrow and develop into a brand-new immune system. Because the body is highly sensitive, the next 100 days are critical for the growth of the immune system (because the old one is completely destroyed), so the patient is very sensitive to any infections and has to be in isolation for at least the first 30 days. But at any point, the body could reject the graft's cells and severe complications could occur. This is what would be considered Acute GVHD (if it occurs in the first 100 days) and is a very serious complication. It is one of the main causes of complications among transplant patients because it can cause death. It can manifest itself by attacking the mouth, throat, skin, organs, GI tract, eyes, reproductive organs,  and the body's ability to produce blood cells, platelets, etc. Blood counts are taken and carefully observed every day for the first several weeks. A transplant patient is more delicate than a newborn baby. 

How does GVHD manifest?

I needed an Allogeneic Stem Cell transplant because my current immune system could not defend me against my Acute Leukemia. When I first was diagnosed with leukemia in 2018, I was faced with the decision of waiting to see if I had beaten cancer for good or getting a BMT as a precautionary measure. My doctors were almost certain that my cancer was going to come back (and they were unfortunately correct) and highly encouraged me to get the transplant. So Micah and I flew all over the country trying to understand the risks and benefits of a transplant; by the end of it, we were so overwhelmed by the risks and the possibility of losing my quality of life and even death from a transplant that we decided to hold off. About a year and a half later my cancer came back and my doctors said that a transplant was the only chance I had at a cure. It would destroy my current immune system, completely wiping it out through high-dose chemotherapy and replacing all of those cells with brand-new stem cells that would develop in my bone marrow. This would give me a new immune system that would hopefully destroy any new or reoccurring cancer cells. I was so scared of the risks of developing GVHD, but I was left with no choice—get the transplant or be a sitting duck. 

Everyone is different when it comes to BMTs; you just roll the dice, move forward with the procedure, and hope for the best. You could breeze through with minimal complications; you could die slowly and painfully, losing control of your organs; or you could experience something in-between. But I didn’t have a choice—it was this or wait for my cancer to destroy my body. I was lucky enough that my sister Makayla was able to be my donor; she was a perfect match for what my body needed. So in April of 2021, I received my transplant and stem cells. Because a patient's new immune system post transplant can respond aggressively, transplant patients are put on drugs that suppress their immune system and then slowly tapered off as the physician monitors how the new immune system or “graft” transplants itself to the host.

There are two different types of GVHD: Acute and Chronic. As I mentioned, it is considered Acute if it occurs in the first 100 days. After that, it is considered Chronic. I made a full recovery—the best that could be expected with minimal complications from my transplant in April 2020 to Sept. 2020. I was completely off immunosuppressants by September. I was even lifting weights, trail running again, and feeling stronger and better than ever with no signs of any complications or GVHD. My medical team assured me they had never seen a recovery like this. I felt like I was out of the woods. I couldn’t believe I had such luck.

Only I wasn’t. My doctor had mentioned that chronic GVHD (GVHD past 100 days) can flair up at any time, and your new immune system—the graft— can just decide that it doesn’t like the host anymore and start attacking it.

Now, this may have only been a slight problem if I had just a little bit of GVHD instead of none; a little bit of GVHD is good because it means your immune system is aggressive, including aggressive enough to want to kill the cancer cells. Well, mine wasn’t doing anything; it was nearly silent. So I had no side effects, but I also didn’t seem to have any protection.

So in September of 2021, my cancer came back. Somehow, this new immune system—this graft—was just a little lazy. The cancer cells got through my new immune system and everything I had fought for went downhill. My quality of life changed almost overnight. In the middle of fighting cancer, I developed Chronic GVHD. My doctors can’t explain it; somehow, my immune system got really angry, and it started attacking me but it also started attacking my cancer cells. This ended up being a blessing in disguise because I achieved a miraculous third remission when the odds were not in my favor; to beat this type of cancer a third time is nearly unheard of. I won the battle against leukemia, but it took a severe toll on my quality of life.

The Past Two Years

I have been living with Chronic GVHD for almost 1.5 years now. I haven’t worked for almost two years and have spent the last two years fighting cancer and battling GVHD. I thought I would be so much further along than I am. My life has been obsessed with only survival for the past two years. It has been the most physically and emotionally taxing thing I have ever done. GVHD is the hardest thing I have ever endured; cancer, transplant, and chemotherapy came with some severe complications that I definitely don’t want to make light of, but GVHD has taken so much out of the “predictability” and quality of life I once had. It has caused so much stress, physical changes, and pain. I have had to be on pain pills since last year, trying to write papers for school while also attempting to navigate the side effects of all of these medications, and the brain fog has been terrible.

But from a physical perspective, here is how GVHD has affected my body. The first thing that happened was shortly after my third relapse, I went into severe liver failure, where the GVHD had decided to attack. In order to combat those side effects, I was put on high-dose steroids: 90 mg of prednisone. This is the worst medication I have ever been on; it will save your life but it will come at a cost. This drug is used for a lot of things and many of you have probably heard of it or maybe even have even been prescribed this. A normal dose ranges from 10-25 mg, but 90 is insane. I instantly gained between 20-30 pounds in a matter of weeks, my body became swollen and unrecognizable, and then the angry “roid rage” started. I began having suicidal thoughts, anger, and sling-shot depression. My poor therapist couldn’t even help me. But these medications kept me alive. Around this same time, my body decided to go through menopause (this is normal from the amount of chemotherapy I received), and I stopped producing the normal hormones that I needed. The emotional roller coaster that I was on started to get really dicey and even worse, everything made me sad and angry. But at the same time, I felt guilty for being alive and that I wasn’t filled with gratitude every day I woke up alive. I tried so hard to force myself to be positive, which just made it all worse because I would randomly explode as a result. One day, I even took a bottle of Sriracha and sprayed the whole kitchen with it (my kitchen is white). There was another day I passed a mirror and didn’t recognize myself. I became so inflamed with rage and contempt for myself that I kicked a giant hole in the door (we still haven’t fixed it). It’s there to remind me that it’s okay to get angry sometimes.

I just couldn’t get a grip on who I was and felt like I wasn’t even inside my own body. At this time, the GVHD also decided to attack my feminine tissues: yes, my vagina and labia. GVHD can attack your more sensitive tissues and completely change them. This completely transformed my intimate body parts and did not allow me to even be able to have sex anymore. My feminine parts completely closed up. With the changes I watched my body go through, it started to completely erode my ability to see myself as a feminine being.

As the months went by, I started seeing more side effects. My eyes started to dry out and I started experiencing rashes and discoloration all over my body. I was advised by my doctors to stop lifting weights due to the high dose of prednisone because my muscles started to atrophy and quickly break down the longer I was on steroids. I remember doing yoga one day, watching my skin thin and bleed all over the mat just from the simple movement back and forth. I cried and looked at my skin—it was thinning, covered in bruises, and translucent. Weeks later, I started to experience severe pain from walking around the house. Stairs were becoming challenging because my joints were inflamed, and I could no longer even lift myself out of the bathtub. Some of these side effects were from GVHD and then some of the side effects were from the medication that was supposed to combat the GVHD. What a mess.

“When was any of this going to get better?”. Every day, every week got worse…and then, when it felt like things couldn’t get worse, came the incontinence. I went through several solid months of shitting myself after a few rounds of sepsis and some overnight hospital stays in March. GVHD had decided to manifest itself in my gut and cause severe diarrhea. All I did was shit myself for months, several times a day—honestly, I lost track of how many times. I would go on a walk and have to call Micah because I had an accident. Everything revolved around me finding a toilet. Somehow, in the middle of all of this, I developed severe neuropathy and nerve pain in my hands; I started to lose feeling in them, so I couldn’t sleep through the night. The nerve pain wasn’t related to GVHD, it was just something that developed from the immunotherapies and chemotherapies that I had so much exposure to. If you have had nerve pain, you know what I mean when I say I couldn’t sleep. It is pure hell and a type of pain that even pain pills can’t get rid of. These side effects were the most prominent through March and July and during that time, Micah and I had a really hard time trying to keep our marriage from falling to pieces. We decided to take some time apart, and I had friends and family help me through these tough months. Even though I was the patient, he had severe trauma being a part of this suffering from the other end as a caretaker, and it definitely took a toll on him too. If he was going to take care of me, he was going to have to figure out how to take care of himself first.

So, this is what I have been battling. I am cancer free but I traded remission for another set of problems that on most days, I really didn’t know if I would be able to make it through. There were so many days I didn’t feel grateful, days I contemplated suicide, and days I fantasized about cancer killing me. GVHD is hard. About the end of summer, I was tapered off the steroids and I could finally get back on the road to healing myself and make some progress, even if it was barely noticeable. I still had severe GVHD in my gut and I was still shitting myself at this point, but I could start moving forward. I was able to start hormone replacement therapy for my menopause, physical therapy to rebuild all the muscle I had lost and start trying to lose all that steroid weight. Being post-menopausal and feeling completely depleted of energy has made this nothing short of challenging, and the progress is painfully slow. But if I want a chance at a life that I want to wake up to, I have to trust that each small step is going to add up to create a new me that I want to be. 

Where I am Today

Not a lot has changed in terms of GVHD. I had a hospital stay a few weeks ago because of a few infections, and have had to be on some additional treatments and antibiotics because my immune system has had such a hard time recovering. In fact, I got so sick Micah and I had to cancel a trip to Hawaii that we were so looking forward to. But I have learned you have to hold each day and each plan with an open hand.  I have had some improvement but with each step forward, it seems there is another treatment, another therapy, and another complication. This week, I had two new ports put in for a new therapy to combat GVHD I’ll receive infusions once a week in Indianapolis. On top of that, I am still seeing several other specialists for the myriad of other health problems that I’m combatting.

But I am able to spend time with people. I may not be able to do high-intensity exercises, but I’m getting movement in through biking and yoga and making sure I always know where I can find a bathroom. I have learned to adjust and find my way through the obstacles instead of seeing them and waiting for them to pass. Instead, I have learned how to creatively pass through them.

I go into all this detail not to complain but to remind myself of how far I have come and that to give up now would be ridiculous. Who knows how much further I have to go? Will it get worse? Am I past the hardest part? Who knows? All I know is that I can’t look back. My old life is gone, the person I once knew doesn’t exist anymore. She has to look forward and build a new life, and right now that new life has a lot of obstacles and complications. I am hoping that these obstacles and complications, as frustrating as they are right now, are silently teaching me something that I will be able to look back on and learn from. As I consider these past two years, these obstacles have taught me how important perspective is and being honest with myself when things get too hard. I think I have had to humble myself to admit that some things are just too hard and too much, and that’s okay. That doesn’t mean I’m a failure; it just means I have to give myself grace. 

I have learned to stop trying so hard to make things work a certain way and instead of changing my circumstances, ask myself how I can adapt in order to improve my circumstances. 

I don’t want to be an unemployed, full-time GVHD-fighting transplant patient. But that is who I am right now and I can’t do anything to change that. But I can change my perspective. I can scour my environment and look for an opportunity that I wouldn’t have normally seen or noticed and reach out and participate in something new. And that’s what I have done. I have learned to take each day as it comes and look for the hidden opportunities. Some days, it’s rest—maybe it’s a conversation with someone I didn’t expect. Sometimes, it’s making myself vulnerable and trying something completely new. Whatever it is, it’s my way to rebuild and get to know this new version of myself that I am learning to heal, in spite of the setbacks. I’ve come to understand that if I wait to start rebuilding only when things start to get better, I might never have the opportunity to start. There is no ideal start time—trips will get canceled and things won’t always pan out the way you planned them. But, we have to learn how to move forward knowing we will encounter obstacles. And guess what—we don’t always have to face them with grace. We can move through them, kicking and swearing. It doesn’t matter as long as we keep moving.