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Long-term PH survivors, what words of wisdom can you share?
Forum members who have been living with PH for 10 years or more, how are you doing?
We would love to hear updates from you and responses to the following question.
Is there anything that has become easier and/or harder for you to deal with since you were diagnosed with PH, and why?
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4 Replies
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@Randolph Reynolds is having difficulty posting, so I am sharing his post for him.
Having been diagnosed with PAH 11 years ago ,my active life began to fade. As this disease progressed I found that the first order of the day was never to give in. I pushed myself. Following my specialist’s direction I successfully passed my early early examinations. I have CTEPH. When I started collapsing due to shortness of breath I spent time in the hospital. I am not patient patient. I left the hospital on full time suppmental oxygen. Now I am teathered to a compressor an pull an oxygen tank every where. In most respects I cannot let those impediments keep me from living my apartment for doctor’s appointments, card games, restaurant outings, etc.
My hobby is writing. This I indulge amost daily. But there is one activity that is the most important, communication with God. Recently, last March and April, I collapsed. The diagnosis was double pneumonia but my condition was so critical that the ’best’ I could hope for is to remain in hospice care some 100 miles from home. In spite of the concerns of my doctors, people praying for me resulted in the fulfilment of my determination to return home. I am an example of ’spiritual power’. When I get discouraged I pray about it and do not let it divert me. Perhaps I have a real purpose.
Some contribute my ’stubborness’ to my military training. Perhaps. I have set routines that I follow each day and that is important.
I would encourage all my fellow PH sufferers to stay as positive as you and and get to know the Lord.
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My only advice is to give yourself grace and mercy. It’s hard admitting we cannot do what we once did, but dwelling on looking back almost always prevents us from looking forward and being grateful for the things we CAN do, no matter how many modifications have to be made. I don’t believe ANY of us just want to sit around and wait to die. Put your trust in the Lord, he knows what he’s doing! I’m not better than an ANT compared to his knowledge! Bless us all and take care of each other!
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@Cris Dingman Thank you for sharing your words of wisdom! It’s the second time this week that I have heard someone encourage others to do what they can to create quality in their life instead of sitting around waiting to die. I watched a social media video of a man in his late 90s who is often asked what his secret is to being so spry at his age. He explained that certainly he can be as active as he used to be, but he does what he can. He takes a short, slow walk at least a few times a week, meets friends for coffee, lunch, or dinner, those sorts of things. He also mentioned the importance of keeping your mind active, so instead of watching TV or playing cards all the time, he reads and writes letters to loved ones. I appreciate his way of thinking!
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It’s true, don’t give in don’t give up! I was diagnosed 20 years ago with 3-5 years to live – I am now 81 and still going. Can I do what I use to do – no. I do what I am able and keep on top of all the medical issues.
When I get down (I do sometimes) I’ll vent for awhile then let it go and draw a new normal for myself.
Wishing everyone find their own personal strategies to keep moving, keep looking for the positive. 😊
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