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Living With PH and Fighting Beyond Life Expectancy
“There is no cure for PH, and without proper treatment and monitoring, I can count the estimated years of life expectancy on one hand. While this was terrifying to learn in the spring of 2016, it remains unnerving today, constantly on my mind, yet also something I am repeatedly pushing to the deep recesses, shut away not to be thought of, if I can help it.” Columnist Mike Naples in his column “Phighting Beyond Life Expectancy” really captures the different obstacles one faces when faced with a difficult prognosis.
I can relate to his feelings of wanting to persevere and live life to the fullest but also battling with the need to slow down. It’s true that nobody knows when their time will be whether they are “healthy” or are dealing with a complex medical condition. But, for the ones with complex medical needs, thoughts about our life expectancy happen more frequently.
Similar to Mike in this column, I also try to not think about life expectancy and prognosis. For the most part I am able to go about my day without giving this much thought or letting it get in the way. But, when my symptoms feel hard to manage, when I get difficult test results, or when I am told of progression, thinking about how much “time” I have is brought to the front of my mind.
Do you feel as though knowing a prognosis changes the way you view life and treat each day? How do you “live live life to the fullest? Do you have similar feelings as the writer of this column? Are there certain times when thinking about prognosis and life expectancy is more at the front of your mind?
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9 Replies
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I spent the first 2 years (diagnosed early 2016) fighting the whole thing! I ignored it thinking it would go away. I got really depressed because I couldn’t change anything. I got angry and played the “it’s not fair” card. All that time, I pretty much didn’t leave my house because of it. Just in the last several months have I come to realize that this disease is not going away and the only one who can make a difference as to my life expectancy is me! So I’m trying to get out more. I joined several online support groups. And I’m back in therapy. Even though I have CTEPH, which is supposed to be “curable,” after speaking with my doctor she doesn’t think the surgery would help me too much. I am off to attempt gastric bypass surgery as I weight about 370. THEY may not be able to help me either because of the PH, but I’m trying.
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Hi Beverly,
I can relate to how you were feeling when you were first diagnosed. I too got very depressed and refused to go out much with my oxygen because I was so embarrassed. This just kept me inside which for me just added to my depression and level of fatigue. I was always the one who would like to move as much as possible and never was comfortable sitting still so having this shift in life was really hard for me to handle and come to terms with.I’m glad you are seeing that the only control we have in this is how we fight this and live life the best way we can. Online support groups are great and a good way to connect with others who understand what the struggle is like. Always here for you! Stay Strong, YOU GOT THIS !
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I was diagnosed about 3 years ago after having a sleep study done and started seeing a pulmonologist.I now need to wear my oxygen at 2 liters during the day but have to turn it up to 4 liters at bedtime.The lady doing my sleep study said she had to keep turning the oxygen up,no sleep apnea but I breath very shallow in my sleep.I too am still a bit timid about wearing my oxygen in public.When I was first diagnosed the doctor said I was riding along right in the middle but I feel so much more fatigued and loss of energy now,just getting up to get a drink exhausts me.When I am out I try to keep a smile on my face and I have had some children come up and ask me why I have the tube in my nose.I started preparing things for when I go so my husband will not have to worry about things.I have buried my mom at 65,my father dies at 83 from congestive heart failure,I lost my first husband to lung cancer in 1996,he was only 45 and to top it off,I lost my only child,my son,who was 21 from a car accident in 2007.I wonder does stress and/or certain medications cause PAH?I love my second husband dearly,he is a blessing for sure,but I am ready to go,lord willing,at anytime.
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@pam-muell I wish I had some sage advice for you, but I’m newer at this than you. I will put you on my prayer list and ask God that His will be done with you and your life. We are here for you. HUGS!
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MY Dear Pam,
I know it is trite but it still is absolutely true. I have seen it after 33 months of combat in Vietnam, just remember ” THE LORD NEVER GIVES YOU MORE THAN YOU CAN HANDLE” The only way of dealing with your unspeakable losses of the past is to give thanks to God you found this wonderful Husband to be by your side. Don’t focus on you, focus on him and the touch and love he gives you, some folks I know do it alone. You’re a strong woman, you just don’t know it. Do not project anything, just live your life one day at a time or even one minute or one hour, do not project, 99% of the things we worry about never happen, just have fun
Your Friend
Ron Cole USMC
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Dear Brittney,
As I said before, Do not Worry, someone without PH can walk outside and get hit by a Bus. I understand the fear of the unknown, did you ever think with all this research that you might just be around when something is found to extend life and reverse this process. I am not a fanatic about following the rules, I stopped salt, take my meds and thats about it.I still want to live my life the way I choose to do it. Of course, for you it is in the back of your mind, people without PH have death in the back of their minds also. Just be calm, eat what you want, if it’s a bad day and you feel like crying, just cry. If you’re depressed, don’t fight it this too will pass. Let us compare to all these Cancer People, now that is ugly. Thank God for what you have. Words and advice do not make this PH go away, but knowing that the guy next door like me has it also, your not alone with your great moments, and certainly not alone with the feelings of despair. I do this Gig absolutely alone, totally alone, I have 0 families, no one. I think it is easier than having to deal with all the reactions of others. I like being alone during this process, I can do what I want with no explanation to anyone. I keep my mind busy and share with just a few. You will be just fine because I can tell you’re a wonderful person and when we do check out, all this human Malady will just go off into eternity, without us. You will be surrounded by Legions of angels, and put in a prominent spot in the greater beyond. Your Pal Ron Cole-
Ron,
Thank you for such kind words and for letting me know that we are not alone in this. I’m happy that you are choosing to make the most out of this life as well. You are right, tomorrow is never promised for anyone. It’s good to have people who get it and know that we are all in this together.
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Hi Brittany, thanks for your post. I’m new to the forum but my biggest concern is exactly what you were talking about so I’m replying with my experiences. I’m “at the peak of my life” (early 30s) so the fact I’ve been declining since the age of 18 is not something I like to think of often.
The two pulmonologists I have seen the past 10 years both said I have until about 60, or 50 if I don’t exercise daily and keep under a BMI of 22. Transplant survival rates are poor so I am not betting on those.
The non-cardio-pulmo people on my care team and my parents seem not to understand the lifespan associated risks, but I’m learning to systematically and categorically ignore them. I’m fairly sure they just assume that because I look like I’m in good shape and look younger than my age that I’ll live a normal lifespan.
But how do I live life to the fullest? I have to understand my own life limitations and learn to ignore that which holds me back. I can’t say I’m successful with that yet but I’m still trying.
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Hi VK,
I can relate to the fact that many people just don’t truly understand the stress that our bodies are under because we look okay. Sometimes looking okay on the outside also makes me ignore what my body is telling me and makes it easier for me to push through it. Sometimes it takes me looking like complete crap to actually slow down and give my body rest. I hope that you can find these conversations and topics helpful and know that you are not alone in your fears. I’m glad you are working on accepting your limitations. That’s something I have to always go back to talking about in therapy because there are many days that I just don’t accept my limits even though I do acknowledge that I have them. Happy you are on the forums and hope to hear more from you soon.
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