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I went to a funeral today.

Saturday, January 5, 2008
It was for a gentleman who was only 67 years old. He died from pulmonary hypertension. A friend from PEO asked me to call and speak to John and/or his wife about a month ago. John had been diagnosed with PH and told by his doctor (who happens to also be my doctor)that he needed to go on Flolan (the same IV medicine that I use). But, John was not at all interested in going on Flolan and all of the things that go along with it. Instead, he was taking a couple of oral meds and an inhaled medicine. I called and spoke to his wife, telling her how well I'm doing on it. She asked me to talk to John about it and I did. I told him about all of the traveling I've been able to do. I told him that I've had the same line for 3 1/2 years without any infections. I told him that it only takes me about 15 or maybe 20 minutes to mix my medicine every night. But, it was not for him. His wife called me a week ago today and asked for my help. John was not doing well. Their boys had been home for Christmas but had just gone back to their own homes in different states. John was having trouble. Every time he coughed, he would pass out. She didn't know how to get in touch with John's doctor, they hadn't been going to him for very long. She also wanted to know how to get an ambulance to take him to the Nebraska Medical Center, where "our" doctor worked. I asked Rod and I shared that information with her. I asked her to please let me know what she found out and to please call back if she needed us to come over. She called me later to let me know that they were able to get in touch with someone and that John was in the ICU at the Med Center.
The next day I received an email from my PEO friend. John was told again by "our" doctor that he needed to go on Flolan. He did not want to live his life that way and declined the treatment. The doctor told his family that he only thing he could offer was for John to go into hospice.
John went home Monday night and passed away Tuesday morning.
I went to his funeral today. I heard about what a wonderful man he was. He was an honest, hard-working man who was a loving husband and father. I also heard about a man who lived a very active life. He loved to golf, cycle, hunt, garden and play with his grandson. I realized that even with the Flolan, his life would not have been anything like it was before he got pulmonary hypertension. PH took away the life he had built for 67 years. PH took away a loving husband, remarkable father and amazing grandfather. I hate this disease. We have to find a cure.

Thanks for reading. Sorry about it being so depressing.


4 comments to I went to a funeral today.:

Di said...

We all agree with you. We have to find a CURE!!! You are on the right track with educating all of us. We pray for you and the many others that are fighting this awful disease. I am so happy that you have done so well with Flolan, so sorry it was not right for John.
You have helped so many with your attitude and spirit.
hugs, di

Kathy said...

I feel sorry for those he left behind...his life my not have been ideal, but whose is? I got mad when I read about this on the PH message boards. Maybe I am being insensitive, but I see this man as cowardly...he could not handle the thought of living life as a sick person and he just gave up and left his wife and kids behind to grieve. He would not have been paralyzed from the neck down for God's sake...there are a lot of things I wish I could do with my family...and oftentimes I feel inadequate as a mother and wife, but I am here...and I can do lots of things still...my hope is that someday my daughter will look at me and think I am the most courageous person in her life, b/c I fought this disease everyday of my life and never gave up or took the easy way out...for her sake. I think what this man did is extremely selfish and I feel badly for his family. He had a way to live and feel better, but he was too afraid...and yes, it is so overwhelming when you are diagnosed with this illness...but, any disease is scary...so many people are sick and we go on, as best we can...okay, I will get off my soapbox...thanks for sharing Annette and I hope you do not think me cruel...I am sorry you are not feeling too well lately...I am sure it is for all the things you posted...so, rest and take it easy! God bless.

Donna said...

Thank you so much for your caring thoughts about John. I know how much your concern meant to Donna, even if she couldn't get him to go along with the Flolan to prolong his life. She'll definitely need friends around her once this all sinks in for her.

Right now, you need to be sure you're taking good care of Annette and making sure you're not overdoing it. You're always there for everyone else and I only hope we can do the same for you. You're very precious to so many of us!
Love, Donna

Jen said...

What a wonderful story even with the sad ending. Looks like he died how he wanted.I do feel bad for his family that he left behind.
You Young Lady,are such a true inspiration to all of us. You have touched so many.
Just please take care of yourself a little now and keep those feet up. Blizzards are helpful too.LOL
Love and Hugs,