April 13, 2020 at 11:16 am #24439
Hi, y’all. You may have noticed this new subforum. This area is to welcome everyone to the PH forums. Please share a little about yourself and your PH journey here. We are happy to have PH patients, caregivers, and loved ones affected by PH.
We look forward to learning about you.
May 3, 2020 at 9:31 am #24945
May 14, 2020 at 7:52 pm #25179
Welcome, we are excited that you are here! I wanted to remind everyone about this new Welcome sub-forum. Feel free to share some of your PH journeys here. We are aware that some prefer to look and read awhile before you feel comfortable posting.
As always, feel free to reach out to me, Colleen Steele, or Brittany Foster if you have questions.
November 16, 2020 at 11:08 am #28249Charlotte PodestaParticipant
Hi everyone 🙂 I’m Charlotte and I just wanted a chat … I caught pneumonia a year ago and it almost killed me I was on life support ,on a ventilator and in an induced coma for some time . I had to learn to talk and walk again but 1 year on and iv had breathing problems ever since but I have just been diagnosed with COPD and starting oxygen therapy anyone else in this ? I have been hospitalised 4 times in last 3 months due to my breathing and have needed supplement oxygen and it’s not good as I have autism, anxiety, depression, personality disorder,PTSD, epilepsy,COPD, hypoxia as well so I really am struggling to be honest I can feel my body getting weaker and weaker and with all my inhalers, nebulisers,and all my medication too I just sometimes feel what’s the point you know
November 17, 2020 at 8:13 pm #28259Jimi McintoshParticipant
Charlotte, welcome to our world, whereas, everyday can be a new
Experience. Life with PH is like riding on the meanest “wooden” roller coaster in the world, being a part of this forum
has made me feel like, I still belong to something. It is good to share our experiences and talk about our hopes , dreams and fears. 2020 has been a trying year for me, numerous COVID test, multiple surgeries, some successful and others not. I was diagnosed over 7 years ago, and given 6 months to live, told that because of my many ailments, a heart/lung transplant was out. Battled PTSD, worse than being in Vietnam, felt that I was a burden on my family, had what I thought were friends desert me and some even avoided me in public.
I have been on a lot of medications, took part in experimental trials, hoping that a miracle or just anything to give me back a part of my old active life. I am not a quitter, I am my own cheer-leader and try to get 26-30 hours out of each day. I had “bells-Palsey, blood clots, 2 hip replacements, lost vision in one eye and an angel surgeon took me
Under her wings and I have recovered 95% of my vision back. Currently dealing with 4th stage kidney failure, fatty liver and “afib”..
I am a firm believer in sharing my happiness and faith with others. I am still here for a purpose, everyday that I talk to my grandkids, they tell little
White lies that I am the best papa in the world, gives me the strength to face another day.
I can tell that you are discouraged, fighting anxiety and fear, but you are surrounded by people that are caring and sharing. Together, we may all pull through. Remember in Feb 2020, we were at the top of the COVID casualty list and we are still here to see another day. Remember to worry about those things t he at you can control or fix; those other things are out of your control and will fix themselves.
March 28, 2021 at 12:03 am #29557KRISTINEParticipant
Charlotte I can relate to what you’re saying. Many times I have felt like it’s not worth it. An example when I actually added up how much it cost to keep me alive every month it’s over a little over 8,000 a month just for me to be alive. that crap ain’t even worth it if you ask me. specially the hassle that I’ve gone through lately with this government bureaucracy but anyways. I wanted to tell you that I totally get where you’re coming from when you said what you said about just giving up sometimes. just know that you can come here anytime there’s a lot of cool people here who are willing to listen and will give you some encouragement till the end of the world. we all have this in common even though we have it to different degrees.
P.s. I also have COPD and I’m in the second to last stage so I’ve got it pretty bad and I have pretty bad breathing problems. it’s a toss up between what causes the most breathing problems the pah or the COPD. Sounds like you really went through a path of heck having to relearn your skills. your everyday living skills that is. Congratulations you did it you made it.
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