Since I last wrote, I’ve had several tests and labs and doctor appointments and added medications to my list. The cold has made my neuropathy much worse. Ringing in my ears and pain in my shin bones has increased. Have been having some gnarly digestive issues. In December I had some very bad breathing episodes which were triggered by biking in the cold. Some were scary and long lasting, where I was like, oh ok I guess this is what they’d call an asthma attack.

In January had a minor breakdown after my pulmonary function test (PFT). It’s complicated to explain why, but hey I have this whole blog for this, so here I go.

I was at work for the morning, and it was an interesting but intense work-morning. I left work and went home, then went to the upper west side on the subway. The commute is bike to the G, G to the L, L to the Q, and walk just over half a mile to the MSK Koch Center. It takes just over an hour if you are rushing and hit all the trains right. Then I did the PFT.

The PFT is stressful for me. It’s the combination of the mental stress of needing to follow weird unnatural directions on blowing hard and holding your breath, and the physical stress of doing that repeatedly, and needing to repeat it over even more if you don’t do it right. At one point in the test my nose clips (holding my nose shut) fell off, so had to do it over again then. At another point, the machine fell apart when I breathed so hard I moved my body, so had to do it again. I commented, I was trying way too hard to pass the test. The test facilitator was like, um there isn’t really a passing of the test, she didn’t get what I meant. Just following the instructions right and just getting the test done right means passing to me in this case.

Well breathing wise, I also did not pass the test, haha. I met with the pulmonologist Dr. VanderEls about the results. I don’t respond to albuterol, which is the medication that is in a normal rescue inhaler for asthma. I had this result in 2023, and that time the test had noted that I had taken albuterol within 2 hours before the PFT. Back then I was using albuterol like 5-6 times a day even midway on subway stairs or getting off my bike mid-ride. I remember specifically arriving at that PFT and just having used albuterol on the way because of severe wheezing. After that I went on cortisteroid Breo, then switched over to the injection Nucala (mepolizumab) and don’t use albuterol anymore much.

So now in 2025 I got the same thing, no response to albuterol, but I hadn’t been using any. So my breathing problems aren’t reversible like normal asthma, it’s more like COPD with damage to the airways. This is likely thanks to my extremely high levels of eosinophils over at least several years, which damage organs, often the heart and lungs. My breathing is similarly bad as in 2023, but a little bit worse. It’s upsetting to me to think about irreversible damage getting worse. The eosinophilia (elevated white blood cells) clearly was doing stuff to me in terms of the inflammation. I was having really bad night sweats multiple times a week prior to going on the Nucala, which eradicates eosinophils. They wanted me to go on the Nucala because of this damage danger.

Dr. VanderEls said because I was having breakthrough breathing problems now in the recent winter months, I need to add back the cortosteroid daily inhaler (was Breo, now Adavair) again in addition to the Nucala. I hate how long my med list is getting. I came home from MSK with the same commute reversed, during the rush hour time 5-6pm. When I was on the subway I was standing up in the crowded cars, thinking about all the people commuting home from work with me. I thought about the fact I had started the day commuting to work, and what else I had done. I thought about how much extra stuff I have to do for my health, while at the same time my health makes me more tired to accomplish it.

I thought about always trying to be a full-time professional, a supportive partner, family member, and friend, operations manager of my household, manage my finances and life stuff, try to learn Spanish, and manage my health problems as the administrator, advocate, and patient. All the time and energy sucking commutes to the upper east side for doctor appointments, the waiting rooms, phone calls, portal messages, back and forth with insurance and pharmacy, all the medications, the fatigue and uncomfortable symptoms, new and growing problems. The interference of these things in my day to day and my overall experience. How this isn’t going to go away or get better in my life.

By the time I reached the door of my apartment with my bike, I was sobbing. I recovered from that poor-me moment and got back to “normal” for the next day of work. The following week I got a bad cold. Then in early February after my Nucala injection (which lowers immune system), the cold residuals transitioned to a sinus infection. I got antibiotics which have improved the symptoms, but honestly I haven’t been feeling very well almost the entire month.

I’ve also been experiencing pretty significant digestive issues which have persisted and evolved over the past months. My primary care physician is recommending a colonoscopy. I have a much needed vacation scheduled for mid-March, so I’m hoping I can wait until after that to figure it out whether I should do it at MSK or some regular place. I’ve had to go back to MSK for some repeat testing and there’s a certain new weird thing in my blood that is low, that I’m hoping doesn’t mean anything, but I will find out next month.

One week from now I might be having some side effects from my first dose of peginterferon alpha-2a (brand name Pegasys) on the last day of February. Interferon is something that is not even FDA approved for myeloproliferative neoplasms (MPN). However, interferon is indicated as a front line treatment for MPNs by the NCCN. Many peer-reviewed studies over decades support that it slows, stops, or even reverses the course of disease proliferation/progression.

Apparently it is too expensive to get a full FDA clinical trial with enough patients over enough decades to show its efficacy to get the approval. Which seems really too bad and kind of crazy. I learned a lot about this at the MPN conference I went to. My insurance required prior authorization and to use a new specialty pharmacy, but approved it pretty quickly. There’s actually a world wide shortage of Pegasys so I hope that doesn’t end up messing up the treatment plan.

This is an injection that’s an old school syringe and vial vs. a pen. It should be delivered this Wednesday and on Friday I’ll bring it to MSK to do it myself with support from a nurse the first time. Dr. VanderEls is also working on getting the Nucala through the same specialty pharmacy as the Pegasys. I had thought maybe interferon would interfere with eosinophils too, and I could drop the Nucala, but Dr. Rampal said no.

So hopefully those two injectables can get synced up and delivered efficiently and I can just be routinely stabbing myself left and right with minimal additional administrative effort. It’s been a lot of time and effort on my part to get things where they are. The little problems and hangups to resolve occur in very small and boring ways that build up to something bigger, and I’m proud of managing it relatively successfully day by day. (With some breakdowns, here and there, of course.)

I don’t necessary expect to feel better from interferon. It will be about 3-6 months to evaluate if the positives outweigh the negatives. Some people suffer greatly from the side effects and some do not. I’m starting with a small biweekly dose and if I can tolerate it, it might get increased to weekly and/or a higher dose. It might sound crazy to choose to take an off-label heavy drug that’s normally for hepatitis and with possibly bad side effects on a weekly basis. I wouldn’t have guessed I’d be choosing that myself. But the alternative to me now, that my body gets worse, seems worse. I want to take the interferon to keep being me, as much of me as I can, for as long as I can. And having the life force to do more and see more. I can feel the health issues creeping up and I hope for interference.

There’s a lot of suffering sounding business in this blog, as I suppose it is natural by topic. In some way whether it’s now or later, the health stuff comes for everyone as an inevitable constant with a naturally deteriorating body. While I get bummed out by seeing it on my test results and feeling it internally, I am also in a place of possessing many good things:

– job where it’s ok if I need to take a day off for health care or side effects
– insurance that pays for lots of visits, labs, and insanely priced medications (new personal record: met 4K yearly deductible within January!)
– being able to just take a few subways and get to a worldwide top specialist
– affording an Uber if I’m too exhausted to manage the subway commute
– people who care for me and check-in on me
– energy to ride my bike, enjoy food, pet cats, watch crazy movies
– perspective that life is worth living and I appreciate being here and alive now more than ever

I’ll update after my first interferon dose… fingers crossed it is tolerable.