Only four years later
This is Jon in April 2010
Friday, December 17, 2010
Soo Sorry!!!
I am truly sorry for the delay in updating this blog. We moved and for 10 weeks lived with my Mother-in-law Agnes, Thank you Agnes. Since, we have been unpacking and setting up house. Health has been fine. Fungus appears to be gone. Can't do the things I used to do, a bit slower and I get fatigued rapidly. They say that has to do with aging. Oh well. Hope everyone has a marvelous Holiday. I will update this and give more details later. Just wanted to let everyone know that I am doing fine. Thank you all for caring.
Thursday, September 23, 2010
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
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
Thursday, September 9, 2010
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
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
Thursday, August 26, 2010
Day 181
Wow!!!!
Today is six months for my miracle of two new lungs. Everyday gets better. Still some issues, but who doesn't have issues? Hope everyone is remembering to live their lives to the fullest. I know it's tough in this economy and it's easy to forget to stop and be thankful for the important things. To me that would be family and friends. I also know that the demands of life make it seem that we don't have time to talk to friends and family as often as we should. Thank God for electronics. You can text or e-mail a quick message to those important to you. Just let them know that you are thinking about them. I along with many others cannot wait till things get better and we are able to enjoy life to the fullest again.
This experience has really taught me a lot of lessons. Most important is to be thankful for things and people that I used to take for granted. I cannot express enough the appreciation that I have for the kindness, prayers and well wishes from so many. Even people I haven't seen or talked to in many years. I am truly astounded! Another astonishing thing is the kindness of strangers. It makes you realize that in this world dominated by so many negative sound bites that when you get down to it people are really good and caring. Remember the media is really Shock News. They are trying to get you to tune in, so the worse the news or the more bizarre the story the more they believe that you will tune in. They need viewers or listeners to sell advertising.
Off my soap box. Energy level is increasing, still no where near where I want it to be. Remember me complaining about the heat? Well, we have had 4 or 5 days of rain with no sunshine. Enough already. Where's the sun? I am putting two pictures of myself on the blog, http://jonriordan.blogspot.com/, they're pretty bad but I wanted to show that I am looking healthier and gaining weight. Oh, and I grew a beard for a short time. I think it's out of boredom. I know nothing will help the looks, but it was fun.
We are moving at the end of September. It is right around the corner from where we are now. I will give the address at a later date. It will cut our expenses by about $400 per month. You all know every penny counts.
Hope everyone is doing well. Take care.
Jon - Out
Today is six months for my miracle of two new lungs. Everyday gets better. Still some issues, but who doesn't have issues? Hope everyone is remembering to live their lives to the fullest. I know it's tough in this economy and it's easy to forget to stop and be thankful for the important things. To me that would be family and friends. I also know that the demands of life make it seem that we don't have time to talk to friends and family as often as we should. Thank God for electronics. You can text or e-mail a quick message to those important to you. Just let them know that you are thinking about them. I along with many others cannot wait till things get better and we are able to enjoy life to the fullest again.
This experience has really taught me a lot of lessons. Most important is to be thankful for things and people that I used to take for granted. I cannot express enough the appreciation that I have for the kindness, prayers and well wishes from so many. Even people I haven't seen or talked to in many years. I am truly astounded! Another astonishing thing is the kindness of strangers. It makes you realize that in this world dominated by so many negative sound bites that when you get down to it people are really good and caring. Remember the media is really Shock News. They are trying to get you to tune in, so the worse the news or the more bizarre the story the more they believe that you will tune in. They need viewers or listeners to sell advertising.
Off my soap box. Energy level is increasing, still no where near where I want it to be. Remember me complaining about the heat? Well, we have had 4 or 5 days of rain with no sunshine. Enough already. Where's the sun? I am putting two pictures of myself on the blog, http://jonriordan.blogspot.com/, they're pretty bad but I wanted to show that I am looking healthier and gaining weight. Oh, and I grew a beard for a short time. I think it's out of boredom. I know nothing will help the looks, but it was fun.
We are moving at the end of September. It is right around the corner from where we are now. I will give the address at a later date. It will cut our expenses by about $400 per month. You all know every penny counts.
Hope everyone is doing well. Take care.
Jon - Out
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