Happy belated transplant birthday to me! I made it to my one year mark – 5/29. It’s crazy to me that I’ve made it this far. Just 6 months ago I was bedridden and kind of regretting what my future life would be like. Even though things are far from normal, I feel like I can actually see the light at the end of the tunnel at this point.
I had my one year follow up with the Fred Hutch transplant team!
Immune System: My immune system is improving. For example, my CD4 count is 247 (normal is >300) and in February it was 172. Same goes for the CD2, CD3, and CD8 numbers – they are low but are higher than my February labs. I have normal quantities of B cells, but the function of them is stunted. All in all, trending in the right direction but not quite normal yet.
Vaccines: The immunology team decided to wait on giving me vaccines given my immune lab tests. It’s interesting because the transplant team does not run these extensive immunology labs on their cancer patients so whether or not they have a fully competent immune system at the 1 year mark they don’t know. Regardless though, the transplant team vaccinates their hematologic patients. However, the immunology team looks at these in depth tests to determine when a patient is ready to get vaccinated. I was very disappointed that I didn’t start my vaccines yet but hopefully we can revisit the conversation in a few months. I was able to get my 4th COVID shot which I guess is something.
Primary hypothyroidism: My thyroid decided it didn’t want to work anymore. It might explain why I still feel so tired even though I am sleeping over 10 hours a night. Luckily, this is a fixable problem and I was started on levothyroxine 25 mcg. We’ll check back in 6 weeks to see if that dose will normalize. Hopefully this will help with my fatigue, my hair falling out, and my dry skin. I’ve been losing an insane amount of hair everytime I shower.
Secondary adrenal insufficiency: I saw the endocrinologist on 6/9 and we decided to start tapering the hydrocortisone. I had originally been on 10mg in the morning, 5mg at noon, and 5mg at 5pm, but we decided to cut the evening dose and just do 10mg in the morning and 5mg at noon. Unfortunately, I did a cortisol test on 6/13 and my level is still pretty low. My adrenal glands (the organ that produces cortisol) might be a little lazy/sleepy since I’ve been on steroids for the last year and a half so it might take some time for it to recover and realize that it needs to start making more on its own.
Rathke’s Cyst: I’ve had this benign fluid-filled cyst near the pituitary gland that they incidentally found several years ago. I have to get a brain MRI every year to make sure it hasn’t grown and it’s been stable for 10 years, but given that I started hormone replacement last year, it may have potentially changed. The great news is that the cyst wasn’t even seen on this year’s MRI! My pituitary is still slightly enlarged, but we’ll continue to monitor it regularly.
Chronic GVHD: The big underlying question right now is do I have chronic GVHD. Over the last several months, my cheeks have been very red; my whole body has been really dry; my scalp has been flaking like no other; and my eyes have been extremely dry. Some of these can be explained by the thyroid and adrenal gland issues. Some if it could be eczema. Some of it could be allergies (Gordon has seasonal allergies). It’s not a clear black and white picture and even if they biopsied my skin, it would not necessarily give a definitive answer as to whether it was GVHD. The plan for now is to try and resolve the thyroid issue first. We also did increase my immunosuppression again to tacrolimus 2mg BID. I was hoping I could slowly taper off of it, but it seems like my body has other opinions.
DEXA Scan: I got a bone density scan at my one year mark. I was honestly worried they were going to tell me I had osteoporosis at the ripe age of 37. I think my incredibly active lifestyle prior to transplant did save me though. My bone density is within the expected range for my age, but it is on the low end of normal. I have a long way to go when it comes to regaining strength so this is definitely something that I want to focus my attention on now. When I talked to my endocrinologist, he did mention that it would take a few years for me to get back in shape so I’m being patient and kind with myself, or at least trying to be.
Pulmonary Function Test: I had normal spirometry, normal lung volumes, and normal diffusing capacity! Everything is stable compared to my February PFT. I imagine my shortness of breath at this point is from de-conditioning so something to continue to work on.
Oral Exam: At this point, there is no significant clinical evidence of active oral GVHD. I do still have white streaks in my mouth, but this could very well be from the ulcers I had prior to transplant. My mouth will likely never be the same, but as long as I don’t have open ulcers and I’m able to eat, I’m not complaining. I did also get the go-ahead to get a dental cleaning. I’ll get it done at UW in the next few months but I will need antibiotic prophylaxis before I go. I do still have signs of Sjogrens (aka dry mouth) but if I stay hydrated, I can manage the symptoms.
Physical Therapy: I took a short trip to Leavenworth with my mom in the middle of May. Unfortunately for us, I sprained my ankle the second day we were there. I wish I had a better story of what happened, but I was just walking and Maple pulled me a little and my ankle rolled from a paved area to an unpaved area. I heard it pop and crack so we went to the ER in Wenatchee. Luckily it’s not broken. I did have a follow up visit at UW internal medicine the following week but I can’t get imaging done until I’ve done PT so I got a referral to rehabilitate my ankle. It’s been 5 weeks since my fall and the ankle is still pretty swollen so I will likely ask for an MRI in a few more weeks if it’s still not improved. I wonder also if my ability to heal is stunted right now too since I’m still on immunosuppression and my body is also trying to heal a lot of other things. All of this is testing my patience but I think it is also the universe telling me that I’m not ready to go “back to normal.”
OBGYN: no signs of GVHD here too which is great. I’m on hormone replacement (estradiol and premarin cream). Happy that one thing can be stable!
I have follow ups with dermatology, optometry, ophthalmology, gastroenterology, ENT, immunology in the upcoming months and I plan to go to the NIH for my follow up in August. It’s been busy with all these appointments but I’m glad to be moving in the right direction.
Insurance: My biggest headache/stressor has been insurance. University of Washington and Aetna’s contract expired on June 1, and they were unable to reach an agreement. As the state’s largest public hospital system and Washington’s safety net healthcare provider dedicated to improving the health of all people, UW Medicine provides care that patients cannot access elsewhere. This change in coverage affects 50,000 patients and to do it in the middle of the plan year is diabolical. Even if I wanted to change systems right now, it would take months to get into specialists. I have filled out a transition of care form for every single one of my providers which would essentially allow me to see my UW providers for the next 3-6 months (depending on what they approve). However, because of how billing works, for each provider, I need to submit a transition of care form for the provider and for the facility. It has become a paperwork nightmare for all parties involved and honestly, a big waste of time for everyone.
I decided also that I’m going to try and put myself together everyday. At least change out of my pajamas no matter how tired or crummy I am feeling. I do put on sunscreen everyday, but I got myself a tinted moisturizer and some brow pencil since my hair has been falling out. I think it will make me feel better or at least feel a little bit more “normal.” I also have the wig I borrowed from Beth so I’ll try to wear it when I go out. It looks incredibly fake to me, but maybe it won’t to other people.
My mom did also leave at the beginning of June. It’s been a mix of emotions she’s leaving. I’m happy in that I feel good enough to do activities of daily living myself but I do miss having my mom around as a companion. The last few weeks without her have been pretty tiring. I have to relearn how to adult, and I know that will wear away at my stamina. My laundry sat in the dryer for 4 days last week because I was too tired to fold clothes. I know this will all take time, but I do wish it would go faster sometimes.
