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

Friday, August 8, 2008
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

12 comments to Ok, I'm going to try this again...:

Di said...

Annette,
As tears are streaming down my face I am quite sure you have listened to God as he has spoken to you. What beautiful words for all of us to read and remind ourselves to have our lives ready, as none of us ever know God's plan.
We are learning from you and are so proud of you. You have helped so many and will continue to help many others. What a blessing you are to all of us!
HUGS, di

Di said...
This comment has been removed by the author.
Kristi said...

Annette,
You are absolutely right. I truely believe families can together forever. We are all here for a reason and the only one who knows our plan is the lord. You are a great person to share your beliefs with your inquiring friends. They must have needed the spiritual lesson to help them through whatever they might be dealing with at this time. One of the things I love about you is you always know the right thing to say.

KristiV

Merle said...

What a dilemma you were in. Made me really think hard to the point I am going to blog an extended response.
Be strong my phriend, you have a lot more to do.

Merle

barbara said...

I enjoyed reading your post and I hope you are doing alright, I don't think anyone else actually knows but us, if our health is going down. Not the dr or our family. I pray for a long life to spend with my grandchildren, but realize that it is in God's hands and when he wants me I will have to go. Yesterday I got this idea in my head as I walked out the door, how nice it would be not to worry about tubes and be free, that is when we go to heaven to be with God that we will be free of all that stuff.
I am praying for you my friend and I know in my heart you are a wonderful, caring human being. God Bless You.
barbara

Colleen said...

You know, Annette, I've had some people ask me how I could not possibly be angry in the fact that I've been dealt with the "bad health" card in life. I honestly think living with PH has made me the strong person everyone says I am. I have learned along the way how to appreciate every day I've got, and appreciate the people in my lives who have reached out and helped me in any way. I think your response was wonderful. You are an amazing person.
HUGS,
Colleen :)

Colleen said...

I just reread my comment. I said "in my lives." Ugh sorry, I am not a cat, but I was paying attention MY cat playing with my laptop cord when I typed that!! I meant, people in my LIFE! haha!

Donna said...

Annette,
Thank you so much for sharing your personal beliefs with us in such a loving way to help us all reevaluate our lives. As our pastor says, our mission is to make disciples of Christ, and you've certainly done that by opening your heart. You a truly a gift to all of us who know and love you. I've also always believed that having cancer was a gift to me to fully appreciate how blessed I am each day. We're blessed to be a blessing!
Love, Donna

Wendy's Mom said...

Annette,

When I worked in Social Services at a Long Term Acute Care Hospital we use to get a lot of terminal or long term illness patients. I use to tell the family that would ask do you think my family member is going to live. I use to tell that that "No one on this earth can answer that question. When we were born we were also given a death date but the only person that knows when that date is, is God himself and he is not telling us. However even having a chronic illness does not mean that is what a person will absolutely die from. " I know that was pretty much a short version of it. I also use to say that Life if made of hopes in dreams. In one hand we have to be realistic and realize that things are really bad, but in the other hand we need to have hope that things can change or at least get some better." Again that is not the exact words but it would take to much to write it. Thanks for writing this, and I hope that others that read it understand what all our lives are really all about and NO we do not just sit and wait for death.

Love ya,
Sheila

Wendy's Mom said...

OOPPPSS!! I made a typing error. Imagine that!! LOL!

I wrote "Life if made of hopes" and it should read "Life IS made of hopes"

I still think you should consider being a writer. You really have a way of writing things. Thanks for that!

Love,
Sheila

Jen said...

Annette,
That is beautiful...My dear PHriend, I had tears in my eyes...So very true and yet not a question that anyone really wants to answer..I worked in hospice care for many years and was always asked , how long someone would live, I would say based on my assessment and what I have seen but then say...."God is the only one who knows" and yes, that is true for each and everyone of us..

So thats why we have to try and live each day to the fullest and enjoy our family and friends(phriends)..and you my Phriend ...such an inspiration...

OK now go get a Blizzard;))

Hugs ,
Jen

Kathy said...

It is true that sick people are given the gift of appreciation...life is short even if you live to be 90...it is never enough time. Nice post :)