I had long-term issues, too, that no one addressed. First, I had very low platelets (60-ish) for years, which were not only not addressed but also not mentioned to me. During that time, I complained of little energy, shortness of breath, and so forth. Kept getting my thyroid tested and sent to heart doctors, and nothing was wrong there. Yet each of those specialists had access to my medical records and saw the platelets (in our local health care system, abnormal blood tests are highlighted in red on the report).

In 2017, I met with a GI doctor for a pre-colonoscopy workup, and he asked me what was being done about my platelets. I said, "Huh?" He said he could look back 10 years of my records and at least 20 blood tests, and they were all low throughout that entire 10-year period. He sent me to a hematologist at our local community hospital, who did a BMB right then. When the results came back, he sent me to Dana-Farber.

Here is another example that happened 2 days ago, not MDS-related - but still. Long story that I won't go into details, but I'm having severe allergic reactions to something for some weeks now. On Thursday, I went to the ER. I had scratched myself to bleeding from constant itching, my eyes were bloodshot, I had a terrible sore throat, coughing, and I felt like my throat was closing. Had a lot of trouble breathing.

I got in quickly, and they loaded me up with all sorts of drugs. Within an hour, I was breathing and feeling better. The ER doc tells me I had a severe allergic reaction to something, and I need to get an EpiPen and carry it with me all the time. Now it's 7 pm on New Year's Day, and I say, "My pharmacy is closed." She says get it tomorrow. Oh great. I said that I had to go back to the same house where I'm getting the reactions, and she asked, "How is that my problem?" I told her I feel like I'm going to be back soon, and she clearly told me that I can't keep turning up at the ER (this was my first visit). That I had to see an allergist, which of course is the plan, my appointment is scheduled for a month out.

I went the following day to pick up the EpiPen, and it $549, which I did not have. That is a snapshot of healthcare in America, which really does not qualify as healthcare for a whole lot of us.

I really hoped that I'd maybe be a candidate for a transplant, but I need a 24/7 caregiver and money because I have to live in the Boston area (check out those rents) for about 100 days. So transplants are for couples, people with family, people with the means or job to access great healthcare, or the wealthy. I'm not any of those.

I'm so disillusioned with my country.