Sometimes it seems that I am always taking drugs. The alarms/reminders I have set for each on my cell phone are an absolute necessity. Besides the Vitamin K I take with breakfast, the probiotics I take with breakfast and dinner, and usually some fiber supplement I take daily, I have a full dally schedule of pill-popping, drinking, injecting and inhaling/exhaling. I feel lucky. There are five, that is, FIVE hours where I have nothing scheduled – currently. I’m sure some doctor will eventually prescribe something to fill those hourly slots. Oh yeah – at night, I just hook me up to a CPAP.
- Wakeup (usually between 0530 and 0630) –
- Proventil inhaler (first puff of albuterol in the morning)
- Synthroid, Allopurinol, Levofloxacin (pop my first pills)
- 0700 Amicar, the liquid form, otherwise; it would be 6 pills in solid form
- 0715 Daptomycin (IV push and flushing of the apheresis ports with saline and heparin)
- 0730 Metoprolol/Acyclovir
- 0830 Proventil – via nebulizer and AerobiKa OPEP device
- 1000 Voriconazole
- 1200 Proventil inhaler
- 1230 AerobiKa OPEP device
- 1500 Amicar
- 1630 AerobiKa OPEP device
- 1700 Granix injections (now every 3 days)
- 1800 Proventil inhaler
- 1930 Metoprolol/Acyclovir
- 0830 Proventil – via nebulizer and AerobiKa PEP device
- 2200 Voriconazole
- 2300 Amicar
- Just before bed (usually between 2300 and 2330) –
- Pravastatin, daily vitamins (some pill popping)
- Proventil inhaler (final puff of the waking day)
This means I get to carry drugs with me whenever I go somewhere. But then, I really don’t go anywhere these days: maybe the store, at LEAST 2 days each week to High Dose where I can get labs drawn, blood and platelets, if needed; and nowadays, a weekly injection of Nplate (romiplostim) to boost my platelets. Oh, such fun [Do you hear the sarcasm?].
I wonder about these drugs and what they are doing to me. The combination of them all – is it really “safe?” I skim through the pamphlets that come with the drugs and look at the Web sites: the side-effects are truly scary. Let’s hope that these drugs are helping me more than hurting me.
The above-named drugs and devices are for hypothyroidism and for lowering high blood pressure, high cholesterol and elevated uric acid levels; for anti-everything (fungal, viral and bacterial); for keeping my platelets sticking together and for clearing the crud from my lungs. None of them fix the bone marrow that needs fixing. There are a few unlisted drugs in the above list for nausea and pain plus the occasional Imodium.
Bone Marrow Stem Cell Transplant Status:
Damned if I know! Still waiting for Infectious Disease and Pulmonary doctors to clear me for the transplant. THIS REALLY SUCKS!!!