Saturday, March 2, 2024
The day started at 5am when my mom woke me up. Maple also did not want to get up, so she cuddled and lied on top of me which was so stinking cute. I did finally have to get up, do my COVID test (which was negative), and pack the rest of my stuff.
Mom, Dad, Maple and I drove to the SeaTac, and I boarded the plane, but it took off later than expected. My phone for some reason wasn’t charging on the plane, and I was down to 10% by the time I got off of the plane. I even had to take out my laptop, write down directions like the good old Mapquest days, and hope that I’d find my way to the hotel afterwards.
When I arrived at IAD, I took the MTA Silver Line to Metro Center and transferred to the Red line to Bethesda. It took an hour and a half to get there, but it reminded me so much of why I love the East Coast. Their public transportation here is truly amazing and it was nice to just sit in the train and people watch. The Residence Inn was only a short walk from the station, and I arrived with 1% left to spare on my phone! Salem, the front desk lady, was so kind. She switched up some things so that we could stay in the same room the whole time even though my first reservation was a King size room instead of 2 Queen room. I got to the hotel around 530/6, unpacked, and went to CVS to get distilled water (for my nasal rinses) and then to the Ramen restaurant downstairs before heading back to the hotel.
I ended my day binging the rest of Love is Blind Season 6, because while my life is a shit show, those people … well … let’s just say they make me feel okay about my life even with all my drama.
Monday March 3, 2024
Given that I stayed up until 2 am EST watching LIB, I didn’t really wake up until 10 am this morning. I missed the free breakfast (boo) but after getting myself ready, I went downstairs to check out and check back in. We chatted a bit and I learned that John at the front desk works at the NIH during the week. I asked John what he does at the NIH, and he said that he works with the National Cancer Institute (NCI) in Building 10 (which I told him is where I was going later today). I also noticed that he quickly prefaced with “but I’m not a doctor or anything like that,” almost ashamed. I told him that any person who works at the NIH is part of patient care, regardless of your role. A few sorts of feelings came up from this interaction
- It’s sad that people work so hard during the week and then have to work again on the weekends just to sustain themselves. The state of affairs of this life is just not working for most people, and it’s not for “being lazy” as the boomers like to tell us. Bethesda is also incredibly bougie, and it’s almost impossible to afford to live here. The math ain’t mathing.
- The majority of the service people here are African American. Everyone is SO kind, and I can’t help but think that if these people were born into the right neighborhood, with the right resources, if they would be the ones finding cures for rare diseases.
- It made me sad that he had to then preface his role at the NIH with “but I’m not a doctor.” It really makes me disheartened to think that there’s this hierarchy in life that people feel the need to diminish their role in a hugely important institution because they just “aren’t the doctor.” Okay existential rant over.
Today was such a sunny day and I took a nice stroll down to Trader Joes and Target but damn … was it heavy carrying a gallon of distilled water and some food back several blocks. Goes to show how deconditioned I am.
After I got back, Gordon arrived. I chit chatted with John at the front desk of the Residence Inn since he told me he saw the NIH shuttle come by so he knew it was running today. We ate the sandwiches from Trader Joes and then went on a walk around the Woodmont Triangle area where I saw Bethesda Bagel that Madhu had recommended.
We went back to the hotel; I packed up and we waited for a long time for the NIH shuttle. The guy said he came at 3:35pm but I don’t think he did because we were waiting outside, but it was okay because the transportation call center made him come back and pick us up. We ended up having a great conversation with him. He came from Somalia 20+ years ago and originally settled in Ohio but his brother told him to come to Maryland so he did. He’s been at the NIH ever since.
Brandon was at registration, and he was so nice; he escorted us all the way up to 5 SE and got us connected with the nurse. He said he had been at the NIH himself as a patient 3 times and every time it exceeded his expectations.
Qin was the charge nurse who welcomed us onto the floor. She’s a Chinese lady who asked us if we spoke Mandarin and we said yes but very poorly. She has two sons, one is 21 and trying to get into UCLA and the other is a marketer. Both live in the Los Angeles area and she says she loves California but it’s too expensive and that she loves her job at the NIH because its’ the best hospital to work at. If the NIH were in LA, she’d be out there in a heartbeat. She was very protective of us and had us on as her patient even though she was already swamped. Qin did a COVID test, pregnancy test, and she swabbed my butthole. I had never done this before – I guess it’s for making sure there’s not antibiotic resistance.
Dr. Stavros Doumas came in to do my initial intake, and Gordon was able to stay and attend all of my appointments with me this week which was so helpful. He spent over an hour in my room gathering my history, and it was very clear that he read my chart. He’s a PGY3 resident at Georgetown and poor guy had his last day of rotation on call. A few things I became unclear on: my Hepatitis B history. Mom says I have not had Hep B, but it seems like I’ve had an active infection or maybe have been exposed to it before. Another thing I forgot to mention was the tremors that I started to have. I also don’t know the difference between eczema/psoriasis and if the vitiligo is vitiligo or post-inflammatory hypopigmentation. Dr. Doumas obviously read my chart very thoroughly because he knew things that I had blocked out of my memory already. He’ll be chief resident next year and then will go on to do a GI fellowship hopefully. We talked about GI, dermatology, infections, OBGYN, mental health, etc. He was surprised I hadn’t been referred earlier after I found out I had NFKB1 haploinsufficiency or even when I was at Kaiser.
I got to order dinner, and honestly, while most people don’t like hospital food, the NIH food was pretty great. I ordered 10 items and wanted to order more because I’m NPO by midnight, but they put a limit on items. Don’t they know I’m trying to bulk????
Well, I was already pretty hungry that by the time I remembered to take a picture of my gourmet meal, I had already eating most of it but I did have a chicken burrito, steamed carrots, broccoli, mixed vegetables, sautéed spinach, strawberry ice cream, and chicken noodle soup.
Jerica, the night nurse, came in around 7:30 PM and got me all set up for my evening medications. She said labs will come at 6am, I’ll go get an IV tomorrow at 8am, 930 liver consult, and 1030 CT scan.
Beth and I Facetimed and I got to tell her about my awesome day. I’m in a great mood.
Overall, everyone at the NIH has been top notch – from the shuttle driver to registration folks to nursing staff and residents. I’m truly impressed and hope that this continues to move forward smoothly. I know that this is where I’m meant to be, and I’m really confident in how things will play out.
Tuesday, March 4, 2024
Today was a really long day! Gordon came in the morning by shuttle to come to my appointments with me.
The liver doc, Dr. Anjali Raj, did a fibroscan of my liver and she said it looked great. This scan is important because one of the things that can happen during chemotherapy is veno-occlusive disease (VOD) which basically is when the small blood vessels that lead to the liver get blocked. Since my fibroscan was normal, and my liver numbers are normal, it would indicate that I have a lower risk of getting VOD when I get chemotherapy during conditioning. I did also go and get a CT of my body as that will show more information.
I also got to meet my primary point person at the NIH today, Dr. Jenna Bergerson from the NIAID immunology side. By the time I saw Dr. Bergerson, the CT for my chest/abdomen/pelvis came back and she said she’d need the radiologist to measure the spleen but it didn’t seem that enlarged. My blood work also looked really good. We also talked about my bowel movements and that surprisingly in the last few weeks I’ve had formed stools (also I didn’t poop today… like what?). Sorry for those that might be queasy about poop, move along. I’m on a medication called Stelara (funny enough it’s made by J&J) and it’s approved for ulcerative colitis and Crohn’s disease, which I don’t have, but there’s thought that I have some level of inflammation in my gut so I started on this a month ago, and I imagine that this may have had some impact on my bowel movements. I’m currently on a lower dose because that is what insurance has approved, but my home immunologist would like me on a higher dose but we’re currently in a fight with insurance.
We then went down to see dermatology (Dr. Kong). They took pictures of my eczema/vitiligo but that’s kind of low hanging fruit for us. She’d rather focus on the oral ulcers since I told her that’s my biggest quality of life issue and said she’ll discuss with team. One thing that she’ll need to discuss with team is what the plan is for prednisone taper up until transplant. She says that around prednisone 20 mg dose is when sometimes things can start to get worse, so to ask oral medicine tomorrow if perhaps adding on topical steroids at this point since there’s less inflammation could be a good option.
Overall, today was really a lot of information gathering, a few suggestions to consider but also waiting for things to come back (Stelara 90mg, adding topical steroid to ulcers while maintaining oral steroids at prednisone 25, figuring out Hep B status) and then they added consults for pulmonology, neurology (for tremors since I’m already here), OBGYN, ophthalmology (my eyes have been hella red. This one might not happen as I guess scheduling with them is a nightmare).
Wednesday, March 5, 2024
We met with the registered dietician Kirsten today. I’m gaining weight and trending in a good direction so she said to keep it up! Thanks mom for giving me a continuous supply of food.
I also had to do an induced sputum culture today which basically means that I breathe in saline from a nebulizer and hope that I can spit out some gunk from my lungs. They want to do this so that they can see what kind of bugs grow out from my lungs. Since I’m not sick right now, it will serve as a baseline for what is “normal” for me.
I’ve also been having tremors so the neurologist came to see me. He wasn’t super helpful, but I imagine the tremors are from one of the immunosuppressants that I’ll unfortunately be on for a while and 6 months post transplant so until then, I’ll be a little shaky.
I also saw the dentist today. Dr. Eleni Kanasi did a full mouth scan, said my gums were really healthy.
I then saw OBGYN and did a pap smear. Since I’ll be losing ovarian function after chemotherapy, we did have a discussion about fertility preservation and even though I’m on the fence about having children, I’ll likely do it. The NIH pays for and stores it for 3 years without cost. That’s pretty great. They did an ultrasound and saw 10 follicles on the right side and 1 on the left side.
I ended my day with an ECHO – no results yet but I’ve never had heart problems so fingers crossed there are no new issues.
After the long day, Gordon walked home since it’s a nice mile long walk to the hotel in good weather.
Wednesday, March 6, 2024
Another packed day of appointments.
I started at ophthalmology. She said my eye exam is very boring (lol). I have a small scar on my retina but not a big deal. My eyes have been really red so they are giving me pataday eye drops and try for 2 weeks to see if they work. She also said there might just be some generalized inflammation in my eyes which wouldn’t be surprising since that’s just kind of what my body does. Otherwise, my eyes are fine.
We then got to meet with Dr. Dani Arnold, my main point at the NCI for the transplant side. She’s my friend Michelle’s old co-fellow so it was nice to put a face to a name since I had heard about her months ago, but only finally got to meet her. I finally learned what conditioning regimen I’ll get:
Alemtuzumab: CD-52 monoclonal antibody that will wipe out my T cells. I’ll get this Day -14, -13, -12 before transplant
Busulfan and Fludarabine: Day -6, -5, -4, and -3 before transplant
I won’t need radiation (yay). I’ll get cyclophosphamide starting at day 3 and 4. I’ll be getting lost of fluids to prevent hemorrhagic cystitis (an inflamed bladder). I’ll be on tacrolimus on day 5 for graft vs host (GvHD) … aka rejection. I probably won’t feel terrible when I’m getting chemotherapy the few weeks before. I might actually feel okay but about a week after, around day 7, is when I’ll start to feel terrible – mucositis, diarrhea – and this is when I may need support in terms of pain and needing TPN (IV nutrition).
Gordon also met with his doctor today, but I had another appointment so I wasn’t able to meet his doctor. It seems like they’re going to take out 1.5 L of his bone marrow (that’s a lot!) and Gordon’s hemoglobin will drop at least 4 points so he’ll be pretty fatigued for about a month.
Overall, it looks like I’ll be coming back sometime in May for the real deal.
We then saw Dr. Kennell in pulmonology. He said my chest CT looked great. He’s like “when I saw your chest CT from Monday, I asked why are we getting consulted.” But then he said he dove deeper into my prior records and then realized I weren’t doing well before but he was very happily surprised to see that my bronchiectasis reversed which he said is uncommon in adults but more common in children. He says from a pulmonology standpoint, I’m doing really well and my prior PFT numbers looked good and that he’d follow up after my PFT/6 min walk test tomorrow if there’s any action needed.
We also had the opportunity to meet with the social worker, Jennifer Hendricks. It just seems like there is a lot of support at the NIH from every specialty and they work cohesively together.
The ID fellow stopped by later the evening around 7pm and said that my sputum induction was growing pseudomonas preliminarily. I told him I’m colonized with it; not sure what the plan is yet for this but I’m also not sick right now.
With Gordon’s appointment, his primary doctor will be Dr. Gonzalez who will be doing the bone marrow harvest. They are going to need to take 1.5L of bone marrow under general anesthesia. Finding OR time is limiting factor at the NIH so the date of my transplant hinges on OR time. His hemoglobin is expected to drop by 4 points!! He’ll be very fatigued at first and should get better over time, but he may need 4 weeks to fully recover and be able to go on a run. They also generally want donors here 2 weeks prior just to be here.
Thursday, March 6, 2024
I did an MRI of my abdomen, met with the physiatrist (someone who specializes in pain management and rehabilitation), met with the physical therapist Bert who introduced me to this device that can potentially help my shortness of breath, and met with lung rehabilitation, Mary Beth. It’s nice just meeting everyone on the care team that will be helping me rehabilitate to normal when I’m getting my transplant. They have all the people and systems in place to support that which is great.
Friday, March 8, 2024
Discharge day, but not without a bunch of tests and appontments before I go.
I had a pulmonary function test (PFT) at 7 am this morning and a 6 minute walk test (it’s exactly what it sounds like – they measure how long you walk for 6 minutes). Dr. Fennelly, the pulmonologist, said my PFT looked great!
I then saw ENT and they scoped my nose and then I went to the gym with the lung rehab team, Alenska and Mary Beth, who had me walk on the treadmill and do some exercises. I’m kind of an interesting case because I’m “fit” in their eyes compared to all the other patients that they normally see. Even the pulmonologist was surprised that my lung function test was so good, that some of the scarring on y lung reversed itself (it usually doesn’t), and that I’m able to walk around. But what’s challenging is that this is not MY normal. I used to be so much more of an active fit person, that the difference in what I’m able to do now versus what I used to be able to do makes me feel like there’s something wrong. I think part of it is de-conditioning from being sick the last few years but also some of it is my needing to adjust to the fact that I’m aging and that my body just isn’t a young 20 something anymore.
Anyways, I finally got to sleep in a hotel bed tonight and was knocked out by 8pm. So much for a crazy Friday night.
Saturday, March 9, 2024
I get to go home today! I did get to the airport early so I was able to go to the new Capital One lounge at Dulles. Highly recommend – it wasn’t too crowded and their food was pretty great (but also my barometer was hospital food for the week).
Anyways, I was so happy to see Beth who came to pick me up from the airport! And guess who was there to greet me when I got home. This goon ready for some cuddles.
