I just read comments from readers and wanted to thank you for wishing me well. It has been a challenging year and a lot of work but I made a promise to my donor that I would work hard to keep our lungs healthy.
It was discovered during a bronchoscopy that I was born with small airways. The "gunk" from my lungs was clogging my small airways. There was a feeling of pressure where the new lungs were attached. I felt like coughing. To relieve the problem, I have been using a nebulizer treatment of 3.5% Sodium Chloride every morning and evening.
Also, during a bronchoscopy in April, it was discovered that I had pseudomonas growing in my lungs. Dangerous. After a run of antibiotics, doctors were worried that some of it remained as my white blood count was low. So, they began a run of nebulizer Tobramycin - one month on/one month off for three cycles. I was on my last cycle on when I mentioned to the doctor that I had developed ringing in my ears. He immediately stopped the medication and sent me to an audiologist last week. Yup, I have a moderate hearing loss in one ear and a much low loss in the other. Hearing aids are being fitted next week.
But, I am alive. Everything is less important and I can deal with it.
Physical Therapy is continuing to help with the collapsed L4 - fifteen-years of prednisone!- and I am transitioning off of the cane. Exciting. I will be back walking along the beach soon. I am also going to join the other hospital gym I went to for years as they have closed my beloved pulmonary rehab class.
The best news is I received a message from my RN who reported that the entire team reviewed my first year tests and reported, "You have taken excellent care of your lungs. Congratulations!" They didn't find anything. No Cytomegalovirus (I got from the donor), no yeast or fungal elements, no evidence of rejection, no influenzas, RSV, Paraninfluenza, Rhinovirus, Metapneimonovirus, Adenovirus and my spirometry was excellent.
So, my day begins with weighing myself, taking my temperature, my blood pressure and my blood sugar. After a bit of Michael-made coffee and half a container of Oikos yogurt, I read my favorite sites on the computer while I wait for him to made breakfast. My favorite time of day. After breakfast, I use my inhaler, nebulize the 3.5% solution to clear my airways, cough and try to get everything up then get dressed for the day. When I was using the Tobramycin, the total time on the nebulizer was around 40-minutes. Often I had to get up early for blood tests and doctor's appointments so that time had to be built into the morning routine. Many morning would begin as early as 4:30/5:00.
At lunch, I again take my blood sugar. My doctors have reduced my prednisone to 10mgs and all agree that I did not get diabetes on the table, as 25-30% of transplanted people do. When it is reduced to 6mgs, I fully expect to no longer need to check my blood sugar. My numbers are fantastic.
Before dinner, I do my nebulizer treatment, check my temperature, blood pressure and blood sugar once again. I always cook dinner and have added carbs to our diet. I am loving blueberries and small oranges.
As you may remember, I lost a lot of weight to get to the 25-30% BMI require to even be considered for lung transplants. My dietitian told me I would gain weight afterward but not to worry as we would work together to get it off.
Well, the weirdest thing happened. I think my body was so used to the large dosages of prednisone that I didn't gain weight. I am still just over 10-pounds lighter than pre-surgery. If I suddenly become ill, I have 10-pounds that would not hurt me if I lost that much. Any more, would be bad. It has been many years since I was in size 8. Feels great. And, I'm eating but being very careful of portion sizes and making sure I have good protein at every meal. I have been a stable weight now for over a year.
Our son just finished a month-long tour, stayed home for a couple of days and is now driving down from Seattle for a visit. I can't wait to hear how the concerts went and I always ask about any outstanding food he found. Foodie. We will surprise my mom as he just told us today he was driving down. I'm also planning what I should cook for him. Coconut Salmon with Napa Cabbage? Tri-Tip with Sweet Potatoes? Kilbasa with Pasta? Fresh Turkey? That's what's in the house. I'll let him decide.
If you have any specific questions, I would be happy to try to answer them.
Thank you again for your support!
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