Day +30: OK, really the last visit

Friday morning, 8 a.m., we’re back down at PMH for one more thing. And of course there is an interesting back story to today’s visit.

My latest medical experience. 😊

Yesterday, during my in hospital clinic visit the CAR-T nurse practitioner says that they want to put me on a new medication and there are two options.

  • A liquid that you take once a day.
  • Another product that you go to the hospital and they administer with an inhalation process and each treatment lasts for 1 month.

At the time it seemed like less trips to the hospital would be a good idea so I opted for the liquid. All good, they send the order down to the pharmacy and I can pick it up on the way out.

At the pharmacy I get the product, the explanation on how to use it, side effects etc. I’m about to pay and it’s $700! This is a small bottle with 21 10ml doses. I have a discussion with the pharmacist who is extremely helpful. She tells me the other product is much less expensive and offers to contact the doctors and talk to them about changing the prescription etc. and will call me back because my ride home is now waiting outside. I’m thinking I can wait until I’m home to start the inhalation product.

We’re about 4 blocks away from the hospital when the pharmacist calls back. They have changed the medication to the inhalation product and booked an appointment for 8am Friday to have it administered and the prescription will be ready at 3:30pm. They really want to have me on this medication before we travel.

So we need to kill about an hour in a city that is locked down and nothing is open. We park the car and walk around for a while until it’s time to get the new medication. When I pick it up it’s $167 but the hospital has covered the cost so it’s $0 to me! 😊

So, what is this magic stuff? It’s Pentamide and it’s for the prevention of the lung infection Pneumocystis jirovecii pneumonia when Septra, a tablet that is dirt cheap, can’t be used because of low blood counts, which is me right now.

It’s a powder that they mix with water and the gadget you see in the picture above aerosolizes the mixture and I’m sucking it into my lungs. The whole process takes about 10 minutes, no side effects and I’m on my way.

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