Frustations

I'm feeling so overwhelmed & frustrated tonight.

The odd thing is that I probably have a lot to be thankful for.

8 months ago I had no idea that I was so sick. As a matter of fact, I had no idea that I had been so sick for so long. I had an enormous sense of well being, and I identified with being a healthy vibrant person with a future.

I got a cold.

That's what I thought it was ... along with one warm day I tried to walk up two flights of stairs and my body wasn't cooperating. I thought that I was just a little out of shape and put it on my list to work out more ... do more yoga. I pushed myself to climb those stairs faster. I was way out of breath by the time I reached my destination, and had to sit and recover. It was rough.

Yet still, I believed it was just a summer cold.

I went to the doctor who did an ekg and felt it was weird so she sent me to get a chest xray.

That showed that my heart was enlarged.

I thought, okay well I'll just rest and I'll be okay

They ordered a right heart catheterization. The test results were that my internal lung pressures were at 87 when normal was at 25. That's when they diagnosed me as having PAH.

And when I read all the information out there, I was devastated.

Now it's been 10 months and I've been on a full range of medications. There have been improvements, and some great milestones, but the improvements do not continue and this month, the doctor who was hoping for continued improvements is concerned.

Now I"m on additional medication, and they are suggesting that I again reconsider a double lung transplant as a possibility if my trend continues.

But on a positive note, I am being considered for clinical trials for a cure for PAH ... in about three months after being stable on Letaris!

I'm hopeful.

I remember happier days out with the kids at the park, the zoo ... laughter, joy and celebrations...

Life was different when I identified with being healthy ... my perspective was wider, brighter ... I felt balanced...

Now all that is changed...

I freak out when my oxygen levels dip down. If I"m reclined back, I sit up and watch my oxygen levels rise back up. I sigh a little relief that my dips are because of position maybe ...

I look at everything and wonder if its a setback or a step in the right direction...

I hope my body finds a way to cure itself ...

I panic when I have an episode where breathing is difficult ...

I work out, I walk, I eat healthy.

I pray.

I pray for a cure.

I pray that the clinical trials are the answer ...

I pray that this is the cure.

The doctors are saying that It looks hopeful; It looks like this could be the answer for so many of us who have this illness.

Pray ...

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7 Replies

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  • I read your post with tears - you describe exactly how my husband feels and to some extent myself. The only way is to stay positive try to find a small sign of happiness each day - to bring a smile. May the gods smile in you and take good care, lots of love TAD xx

  • TEQUILA: Your message left me feeling very thoughtful. I really wish and pray that all your health problems will lessen, and for you to caught your life back. We are always here if you want a sympathetic ear. XX

  • Hi TC and welcome. I am so sorry to hear you are struggling with PAH - no wonder you feel frustrated and overwhelmed. Could you put up a link of the trial you are hoping to participate in ( we are interested in all lung related trials). I hope the outcome of the trial is successful and brings hope to all with PAH.

    I sooo hope medics come up with something which will improve your health for you. Please come on again and chat with us.

    Healing hugs

    cx

  • Hope and prayers are a good thing to hang onto TC and I do so wish you well. Let's hope for some good news and I pray that you will be helped.

    Take care xxxxx

  • I'm so sorry...take care xxx

  • So sorry to hear this. I do hope the treatments help you. Life can be so unfair.

  • Here's the information on the newest discoveries & a possible cure for PAH :

    theguardian.com/science/201...

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