Activity

Anyone on prednisone at the moment? Thought I would check-in because if it’s hot in your area I know that can make the prednisone side-effects feel so much worse. I hope you are staying hydrated!

Let us know how you are doing.

Brittany (and others), I’ve had people here warn me about pushing myself when I feel like poo. Once or twice someone has said something about a heart issue. Like if I push too hard when I feel bad, it could cause heart problems. Is that right?

I ran errands two days ago. Total of about 45 minutes on my feet, interspersed with six periods of…[Read more]

Hey Brittany, I am soooo sorry to hear you need another surgery and to top it off you need to wait until you are over covid!!! You are in my prayers, you are in my heart. I have, I guess all our firum members have and still are … inspired by you. You are always there to comfort and add your strenght to others- it is our turn to send you all the…[Read more]

@cdvol3gmail-com that you my dear friend for caring so much about me. My next step is an appointment with a neurologist in September. I get the impression that none of the doctors have given up on me. They do believe I have neuropathy and I guess there are still other avenues to look at.

@jenc I do have rheumatologist because of RA, or at least…[Read more]

@brittany-foster I don’t think there are any words left in the dictionary that can express how I feel about all you continue to go through and how I feel about the way you handle it all.

You know that song that goes:

I get knocked down, but I get up again
You are never gonna keep me down
I get knocked down, but I get up again
You are never…[Read more]

@ripple76 “We are not less normal than most people in that sense” is such a powerful statement! I reread it a few times because I think sometimes we forget that really, everyone around us is just trying to keep it together.

I’m with you, writing and good friends are at the top of my inspirational list. But you know, what once inspired us can…[Read more]

@Jenc we just had salad with the pasta, your dinner sounds soooo good I might have to try that this weekend hahaha.

I hope you get to go to the beach and have so much fun at happy hour! We got dinner plans this weekend last min with my Russian friend who is a gourmet cook hahaha SCORE, she makes Everything from scratch and she always makes a…[Read more]

I wanted to add this link so others can see it if they have not been to PHA’s website before. They do offer various financial resources. Of course, under Treating PH sub-forum, you will find the pharmaceutical company copay assistance information for many PH treatments.

6 Sources of Financial Assistance

If you have used or heard of any other…[Read more]

Hi, @ripple76; thanks for sharing such lovely memories. Have you thought of writing about your time as a fighter pilot and the love story that came along with that?

Graduating at the top of your class is a remarkable accomplishment. I heard that school and training are rigorous. Wow, and at such a young age, 23- unbelievable!

I’m grateful you…[Read more]

Yes Jen there were many reasons that my graduation from pilot training in August 1964 was special.  I was top of my class, of course I had some prior flight training before, thus I got to choose what aircraft I would go to, and I received the commanders trophy for best all around student.  The really special thing was that at that time, a few m…[Read more]

Hi, welcome back, @ripple76; I hope you have the sign-in process figured out now.

That moment when you were chosen to be a fighter pilot must be an honor and many emotions. What went through your mind at that time? Were you in your 20s? That milestone will never leave you, my PHriend.

Writing is such a therapeutic outlet. I would have to say…[Read more]

Wahoo-I’m back on line.  Here’s my comment:

Inspiration is a challenge when we have a ‘terminal’ disease.  I remember well having very inspirational moments when I was younger but now that PAH hovers over me things are different.  One of my high moments of inspiration was when I received my orders to become a fighter pilot.  But now that is past…[Read more]

I wanted to share a small update for those who had the opportunity to communicate with @brittany-foster early on in the forums. She was the backbone of the forums and will always be.

Britt is scheduled to have yet another heart surgery later this month. But she now has COVID. Poor girl can’t catch a break, but as usual, she’s in good spirits and…[Read more]

Hi @katesnonnie, another one where a woman shares her son’s story of PVOD for our 30 Days of PH. I hope you will find some of these stories helpful.

Hi @katesnonnie, Linda has PVOD, too, so I wanted to see if she would respond and share more of her experiences with it. @lindag, how are you doing, and what have you been up to? Would you like to share some of your experiences with PVOD with LaDonna?

Thank you, sweet @cdvol3gmail-com, for your heartfelt words to @colleensteele. I agree that she has mentioned that she often neglects to care for herself. But Cullen and her family are well taken care of; she would not stop until she got some answers.

I wonder if a rheumatologist would be helpful since it’s been a long time since you’ve seen…[Read more]

Hi @katesnonnie, we are happy that you have found the forums helpful as you are new in your PH journey. I’m sorry that you feel like the PVOD is more of your struggles. Are you seeing a PH specialist who is well knowledgeable in PH and PVOD?

I have found a few topics about PVOD and will tag you in those so you will be notified. As always, you…[Read more]