Ok, I'm going to try this again...

On Tuesday I received a phone call from a woman I met a few months ago and have seen publicly maybe 3 times. She is ill with a heart and lung disease. I don't remember what it's called, but it's not pulmonary hypertension. Although, after talking with her on Tuesday about her pulmonologist, I'm convinced that she may not have an accurate diagnosis and/or appropriate treatment. I convinced her to make an appointment with my pulmonologist and to call me back after she sees him. She said she had called to ask me about my portable concentrator, how I liked it, where I got it, etc... We have talked before about our illnesses and she was very interested in learning more about pulmonary hypertension. Well, when she called me on Tuesday, she also told me that she had been reading about PH on the internet. She found the information that talked about diagnosis, treatment and about the prognosis that said the average person with PH lives 3-5 after diagnosis, but that with treatment some patients have been able to live quite a bit longer. Then, she discovered that sometimes PH progresses to whatever this disease is that she has. She was a mess. She said that if someone with PH only lives 3-5 years and she has something that PH can progress to, then she was convinced that she's got a very bleak future. So, the REAL reason for her call was that she wanted to know how I lived with the knowledge that I have a disease with a 3-5 year prognosis. She wanted to know how my husband handled the knowledge that his wife would die in a few years.

Then Wednesday, I had lunch with a very, very dear friend that I have known for years. We were getting all caught up on each other's families, etc. Things were winding down when she looked at me with these loving eyes and said, "Annette, how do you REALLY feel?" She then asked me how do I live with the knowledge that I have a disease that could very well significantly shorten my life? And, how does Rod live with that same knowledge?

So, here I was...two people from two totally different walks of life, in two totally different settings asking me the exact same question. When I was asked the question the first time, I was a little surprised and a little annoyed. I didn't really know this woman. It really seemed like an extremely private kind of question to ask of someone who you just "kind of know," and to ask it over the phone... oh, I don't know... PLUS, this woman is a fierce, and I mean fierce Christian. So, I honestly thought things like, "Well, she appears to be a more knowledgeable Christian than I am. I mean, she always knows all of the answers in our bible study class. She should certainly know how to answer that question." I went ahead and gave her my answer, feeling a bit annoyed thinking that I was literally preaching to the choir. But, I gave her my spiel. The longer I talked to her though, the less annoyed I got. In fact, I started feeling bad for her. Obviously she had never really thought this whole "being sick" thing through.

Then, when my dear, dear friend asked me the same question, I was actually shocked! I was perfectly happy to talk to my beloved friend about this because she is a beloved friend and that question is something you talk about with that type of friend. But, I was shocked because this dear friend is also a very devout Christian. I just assumed that she would "know" the answer to the question. So, we ended up having a wonderful conversation about the whole thing.

So, later that night I got to thinking about the whole "two different people in two completely different settings asking the exact same question" situation. I've honestly thought, for quite a while, that being sick had lots of positive outcomes and opportunities. I wondered if maybe God was giving me an opportunity that I shouldn't pass up. I do NOT want to be making any assumptions that I'm special and that I have all of the answers and that I'm God's "special helper." But, it did make me think that maybe I should put my opinion "out there." After all, it is my blog and I guess that's kind of what blogs can be about...opinions, thoughts, theories, philosophies, etc...

So, my answer:
I was diagnosed with a progressive lung disease with no known cure, other than a lung transplant. Lung transplants are rare and are not a "walk in the park." The average PH patient lives 3-5 years and some live significantly longer with successful treatment. I was diagnosed 4 years ago. I'm doing well. But, I'm not sticking my head in the sand. My disease is progressing, my pressures are increasing, my symptoms are increasing, I'm having to increase my IV medicine (Flolan), but, SO WHAT? I strongly believe that our life here on earth is temporary. This life, again, in my opinion, is basically a "test run" for the life we will have with God after we die. That is, if we live a descent life and do our very best to be the very best person we can be. We are all going to die at some time. I feel, very strongly, that I was given a kind of gift when I was given my diagnosis. It was a wake-up call. I realized that I am not immortal and that I darn well better get my soul in shape and enjoy every minute of whatever time I have left. Some people never get a wake-up call, or get one a little too late. We should all be getting a wake up call right now because NONE of us know how much time we have left on this earth. Sure, I still get sad sometimes, frustrated sometimes and even scared sometimes. But, that's life and that's a gift.

As for part 2 of the question, Rod handles things pretty much the same way I do. He also feels that this life is temporary and he also knows that we will be together again after our time on this earth. He, along with both Nick and Chris were very sad and frightened when I was diagnosed. But, now they just take advantage of opportunities where we can spend time together. Rod takes off so he and I can go on trips. Nick tries to have brunch with us every Sunday and if that doesn't work, he sneaks in a visit some other time during the week, or at least a couple of extra phone calls. Chris calls nearly every night. We try to make sure we see each other an average of once a month. He either comes home or we go see him. None of us ever end a conversation, visit or phone call without telling the other one that we love them.

Being diagnosed with PH was a gift, for all of us and I thank God for this wake-up call.

I hope this makes sense. I hope I didn't bore you. I hope that I listened correctly to God and did right by Him with my response to my friend and my explanation to you.



Thanks for reading.
Annette