A scary setback…😲🏪💉💊

Well, I’ve have had another bump in the road. I have blood clots in both of my lungs! 😲 Yes, bilateral pulmonary emboli. Ridiculous.

Update: I have a blood clot in my left leg too. This really sucks.

I’m in the hospital…of course. 😤

I’ve had to change my treatment for lung cancer too. My surgery to remove part of my lung with the NSCLC tumor was supposed to be May 4th, but is now pushed back by weeks. In an ideal world they would wait months before surgery to let the blood clots get reabsorbed into my body, but my fast growing cancer waits for no man. That little fucker.

Days after my heart transplant, my body was riddled like buckshot with blood clots: lungs, legs and arms. I couldn’t even roll over in bed or hit the call light to get help. It was a terrifying moment when I realize that I couldn’t move my limbs. I shouted for help. I ended up in the ICU. That was a scary setback. Luckily other than bone crushing fatigue, I am currently asymptomatic.

I have a bleeding disorder (Factor 2), which is like mud blood. I clot easily, but I don’t take blood thinners regularly because my blood clots are provoked (i.e. there’s always a reason for my blood clots). My sister has unprovoked blood clots and our shared genetic disorder is much worse for her.

The hematology doctor says, that my lung cancer provoked my blood clots. I really hate cancer.

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My twin sister, Mara, made me this crafty mask. I’m glad one of us can sew.

Here’s the kicker… how I found out that I have deadly pulmonary emboli was problematic, to say the least.

I returned home and took a nap. I’m so tired, of course now I know the reason: blood clots make you so tired.

When I woke up, I saw an alert that I had test results on my patient portal. I read my own report!! Not a single doctor or nurse called me, to my horror. I was scared. I have 3 blood clots and a possible tumor progression and possible pulmonary infarction (like a lung heart attack). I was so overwhelmed by this gnarly report.

I had a routine CT Scan yesterday. After it was done, the 2 techs come rushing into the room, stare at me like they’ve seen a ghost, tell me they need to call the doctor immediately, that I need to wait and ask me how I feel and, if “I’m ok.” They were so suspicious and, of course, revealed no information about my level of danger that I was in. In fact, the radiologist who was called SENT ME HOME. 🤬

Update: Here is the radiologist written report documenting that he sent me home. “Patient with history of pulmonary emboli and was asymptomatic, I decided to send the patient home. ER precautions were given to the patient by the CT technologist and the patient was informed of having pulmonary emboli.” This is a lie. I was not informed I had pulmonary emboli.

Panicked, I consulted my sister (she’s a nurse). Then I called my on-call transplant team. I feel like I need a plan for dealing with these blood clots…like starting medication to treat them.

My transplant team arranged for an inpatient bed and I walked up to the 9th floor and presented myself for hospital admission later that night.

In less than 24 hours that I’ve been in the hospital, I’ve had so many tests and met with a dozen doctors. I feel so much better. I no longer have this dreadful feeling that I’m going to drop dead from blood clots.

My surgery to take out my lung cancer has been delayed, which is anxiety provoking but I know it’s for the best. Now, I just need these blood clots to heal.

Well, gotta run….or in my case, slowly walk…because I’m ready for discharge. I need to go home and play some old lady cards. I got a few more games in me yet.🃏🎲♥️

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Adam is always at my side, even when I look like I’m sucking on lemons. 🍋😜

Finally, a quick shout out to my sister-in-law, Lisa Berliner, for bougie monogrammed PJs. 💋😎