Approaching the 11 month mark, (January 26), a lot has happened over the last couple of years. I went from a care free, healthy person to a very sick individual, to a healthy upbeat person. I have many people to thank, many that have given me the emotional support to get through this miraculous time in my life. I won't name names, but each of you have been very instrumental in my road to recovery. I approached this disease as a glancing blow, and I would get better with a little time. Little did I know how serious it was. You know, we always feel invincible and we think that we are the exception to the rule. Well, my advice is, don't do as I did. Get answers and act!
I know a guy in his 70's that has been having breathing troubles for months now. His condition is rapidly deteriorating, but he won't consider a Transplant and doesn't even want to talk about it. I hope that he doesn't wait too long, where he hits the point where he is too sick for the Transplant. It's very sad to watch. It brings back a lot of memories. I can't express enough, DON'T BE A TOUGH GUY and tough it out. Get help.
A friend of mine's brother needed a Liver Transplant, and he waited too long to finally consider the Transplant. When he finally said he would consider it, he was too sick and didn't qualify for the operation.
I don't want to preach to anyone, but this has been my experience and I hope that it is a wake-up call for some. Thank you all for listening and offering your encouragement.
Only four years later
This is Jon in April 2010
Thursday, January 13, 2011
Thursday, December 23, 2010
Just a little housekeeping
December 26, 2010 will be 10 months since my miracle. I will expand on that thought in my next blog. I have a lot to be thankful for. One of the things I am thankful for is the support that has been shown by friends, family and some that I don't even know. I hate to mention this, but the end of the year is fast approaching. Many of you need to check with your tax people and see if you need some write-offs. If you do, it would be greatly appreciated if you could donate to NFT, The National Foundation for Transplants, in my name. The money will be used only for medical expenses and money not used for my medical bills will go to a needy person on the NFT roster. This person may have had a transplant already, or is on the waiting list. You can donate through the link on the right side of this blog. Thank You!
Did you know that over 40,000 people die each year from Pulmonary Fibrosis! This is approximately the number we lose to Breast Cancer each year. Yet many have never heard of this deadly disease. There is no cure for Pulmonary Fibrosis, the only chance for survival is a transplant. Less than 1 percent of those diagnosed qualify or get a transplant. How blessed am I?
Again, thanks for your support, both monetarily and emotionally.
I plan to fight back tears and bend your ears, or in this case your eyes, in the near future with a heartfelt blog. I have a lot to say and I have been preoccupied with setting up our new abode. I think it's time to get back to it.
Enjoy your families and loved ones over the Christmas Holiday.
See ya!
Did you know that over 40,000 people die each year from Pulmonary Fibrosis! This is approximately the number we lose to Breast Cancer each year. Yet many have never heard of this deadly disease. There is no cure for Pulmonary Fibrosis, the only chance for survival is a transplant. Less than 1 percent of those diagnosed qualify or get a transplant. How blessed am I?
Again, thanks for your support, both monetarily and emotionally.
I plan to fight back tears and bend your ears, or in this case your eyes, in the near future with a heartfelt blog. I have a lot to say and I have been preoccupied with setting up our new abode. I think it's time to get back to it.
Enjoy your families and loved ones over the Christmas Holiday.
See ya!
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
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