Making a COMEBACK!
moving forward with joy and making progress
I have been making slow and steady progress after being discharged from the hospital at the beginning of October. I was determined that I had an adrenal crisis (the root cause hasn't been pinpointed) that caused my critically low blood pressure. I have now added an endocrinologist to my care team. She has worked make sure I have an adequate level of steroids in my system, as well as doing extensive testing to try to find the root cause of the adrenal crisis.
I was discharged with an order for home health (a nurse and PT to come to my home). This meant that I could not go back to pulmonary rehab until I was discharged from home health at the beginning of December. My home health nurse monitors my vitals, and my PT has been working with me to regain strength and stamina. Both ladies have been on my home health team in the past and are fabulous.
I have had numerous appointments throughout October and November. My cardiologist added a medication to raise my blood pressure and also cut my beta blocker in half. This seems to be working for the most part to keep my BP within normal range. We are still playing a bit with the timing of doses and the dosage itself to make sure my BP stays steady all day. I decided to go see the pulmonologist again to discuss next steps due to pulmonary rehab being postponed. At my appointment she let me know that I no longer needed to have oxygen during the day! NO MORE OXYGEN! I also added a sleep medicine/pulmonologist to my team to evaluate if I need to continue wearing my CPAP and/or oxygen at night. I will have an inpatient sleep study the end on November. Yesterday, I saw my Internal Medicine/PCP doctor, and he was pleased with all my progress. He declared that I was "making a comeback". The only change he made yesterday was to add Ozempic back into my routine. I had started taking it previously, but it was paused during my hospitalization. I have a slightly elevated AIC (which measures your average blood sugar over the past few months) and several of my doctors had suggested we restart Ozempic to maintain my weight, provide better blood sugar control, and to help reduce general inflammation.
While I was on oxygen I felt like I had adapted to being connected to my oxygen concentrator all the time. Our family was skilled at letting me know when they were cooking over the gas stove, we had put all our candles away, learned to navigate the trip hazard of my tubing and I avoided the utility room with the gas water heater. I was able to go out and about with my portable oxygen concentrator - but that was a bit more difficult to adapt to, because it had limited battery life. But now that I do not have to wear oxygen - I feel FREE! Going out is so much easier. No time limits, no extra baggage, no buckling my portable oxygen concentrator in while I drove and no more noise.
I did go to cheer for my hubby at the Chicago Marathon. Our son came to the hotel to retrieve me and we met up with a group of friends around mile 13.1 to cheer. My friends chaperoned me back to the team tent where we met up with hubby after his finish. It was a great day!
I was able to reschedule "craft night" with my friends and hosted a small group to make Kinusaiga. Even the "craft-adverse" had a good time. I have spent many quiet days at home; but have also gotten together with friends, got a pedicure, spectated at the Marathon, attended a Fall/Halloween party and attended a Chicago Fire game. I am also hosting a FIFTITH birthday party for hubby this weekend. I a looking forward to Thanksgiving and Christmas with family, and planning a Disneyland trip in February.
I choose to not let fear limit how I live - but to live life to the fullest with joy. I am grateful for every day and looking forward to my future - however long it might be.
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