Day 209

      Breaking down the barrier! I know it sounds strange, but the more I do and the harder I work, the better I feel. I still have to pace myself and take breaks quite often. I enjoy staying busy. I get up at 5:30-6:00 every morning to start my day.Mornings are toughest on me, I don't know if it's the medications or what it may be. I am not really functional until about 8:30, but I'm getting better. Poor Linda, she has to do so much and never complains.She has been a real trooper through this ordeal. I believe that most spouses would have given up and left by now. Between the mood swings,(mine, not hers), and the limitations of my abilities, this has been a real test. I guess that after 22 years, she knows how to ignore me. She is truly my Guardian Angel.
      I was thinking the other day, how truly blessed we have been over the last couple of years. Oh, I know that we have had some real major set backs but we have really had some exceptional things happen for us, as well as exceptional people step up to show their love and support. Family and friends as well as complete strangers ,(who are now considered friends),  have been amazing in their financial and moral support. I can't thank you all enough. I hope to some day, soon, to repay your generosity and support.
      A couple of days ago I was counting, (not literally), all the blessing that we have received lately. I was trying to figure out why or who was opening all these doors for us. Not to make light of it, but of course God comes to mind first, but then I started thinking about my Mother. Mom died in 2005 of the same disease that I had, and I think that in her way she has been looking over me and has facilitated a lot of the events that have unfolded for us lately. She was always protective of all her friends and family and I believe that she has found a way to show us the way and put the right people and opportunities into our paths. She is also my Guardian Angel. I sure do miss her. Thanks Mom!
      I had clinic last week and got an outstanding report. The only bugaboo is that pesky fungus, Fusarium. It has altered my anti-rejection medications effectiveness, so they have to alter the dosage of the anti-rejection meds. I had to go back Friday to have more lab work done to check the medication levels as they had increased the dosage of anti-rejection medications on Wednesday. By the end of Friday, they called and said that the levels were good. I will go back for my regular monthly clinic on October 11, then again for a Lung biopsy on Nov. 9. I will then stop the medication for Fusarium on October 15, as Dr. Rolfe believes that the fungus should be gone. I'm glad, this medication, Noxafil,  is $4226.00 per month. Thank God for insurance, I only pay a percentage. Some of the anti-rejection meds are much more expensive. Do you think we have a healthcare problem?
      I asked the doctor where he thought I got the fungus. He said that in 7 years they have only had 2 cases of the fungus, now in three months, they have 2 cases. Very unusual. He said that he believes that I got it from Africa. I said, "Doc. I've never been to Africa." He said, "no smart ass, from the storms". It seems that the Hurricanes and Tropical storms are strong enough that they carry all kinds of things across the Atlantic to Florida. He said that the little white birds that you see on the beaches and the ground all over Florida, are not native to Florida. They came across with one of the past Hurricanes. Who'd a thunk it?
   That's enough for now, I have to get back to packing for the move. I hope everyone is happy and healthy.
Take care.
With Love,
Jon

Day 195

     Six months plus and counting. Getting ready for a garage sale tomorrow and Saturday. We've got  a lot of Stuff to get rid of. Down sizing, you know. You don't realize how much "stuff" you accumulate over the years. Most of it unnecessary. Also getting ready for the move at the end of the month. A lot to do.
    Health is good. Got a call from the clinic last week. Seems I have a different fungus. Sounds a little more severe. I did a little research and this is the first thing I found.  "Fusarium infections are difficult to treat and the invasive forms are often fatal." Scared the heck out of me! I contacted Dr. Haddad and he put my mind somewhat at ease by responding, "Don't worry about that line. You are on gold-standard treatment. We will be watching you like a hawk over the next several weeks. This is treatable and I do think you are colonized with this in your airways. You likely inhaled this fungus". They told me I need to get on this new liquid anti-biotic immediately, so I drove to Tampa Friday and picked up the new prescription. Not a terrible tasting thing, as they had said. Definitely not a good tasting thing either.
   I continue to get more energy, however, the real test will be the move and fixing up the new place. I will definitely have to pace myself. It will get done, just at a slower pace than I am used to.
   We had a guest, Elaine, from Fredericksburg, VA here on Labor day. We hadn't seen here for 14 years. What a pleasant time we had. Thanks for your positive outlook, Elaine. Hope we see you again soon.
  I hope everyone is doing well and thank God the summer is almost over.
Take care all.
With Love,
Jon