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I just wanted to remind any new members that you can share some about your PH journey here.
Just tagging a few that I know joined recently. We would love to hear your stories. @cashley36, @princesslilac1111, @tammie, @maureen-mccarthy-magill, @laurie52
Welcome 😀
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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.
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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
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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.
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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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Yay, @ripple76, I am so happy to see that so far you are posting. That makes me happy. Maybe I wiggled my nose the correct way.LOL Whatever it was, I am happy to see you here.
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Hi Jen and Colleen, thanks for leading the forums and thanks to all the members. I am Sue from CT, caregiver to my hubby Joe who was diagnosed in 2015 with PAH. He is on Remodulin SubQ since 2015 and it has been a miracle lifesaver. He went from stoppng several times to/from the mailbox and passing out upon rising from seated position, to walking several miles per day. While he is doing well, there are some struggles whether medicine or energy, and other health related issues. We count our blessings. I am very involved with his care and like being part of forums to learn and help one another. I have a few questions and will start posting soon in other topic threads. Thanks to all and blessed, happy day! Sue
#caregivers #remodulin
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@scollin people can and often do respond well to treatments. That is excellent news that Remodulin SubQ is working well for your husband! My son was on Flolan and it helped him for a long time too.
Take your time. Visit our many sub-forums. We revisit old topics all the time, so please, if you read something and have a question or something to add, please do so. And you are always welcome to start a topic of your own.
I’m so glad you found us. I’m sorry you have a reason to be here but I am happy that you are.
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Hi @scollin, welcome to the PH News forums. I am happy that you have joined us.
It sounds like your husband is doing well on the SubQ Remodulin; that is such a blessing. I also realize that that comes with some unpleasant side effects that add to his PH. @cdvol3gmail-com has been on SubQ for years; I lost track, but she and many others will be a great resource with experience with this treatment.
As a caregiver, you must also remember to take care of yourself too. This is often something that many caregivers neglect as they put their health on the back burner. How is your health?
Plesae do post a topic that you may want to learn more about at any time. You can also go to the top right-hand side just under where it says welcome and your name to search a topic we may have already discussed. You can add to that, and that will let us know, and others can respond.
Thanks for sharing some of your PH journey with your husband. I am happy that this treatment is working well for him.
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Hi Sue Collen, so glad to hear subQ is working for your husband. I have PAH caused by Sclaraderma and was on Remodulin subQ 13 years. It worked! The main issues I had was PAIN getting worse after many years and waterproofing. All the different kinds of tape the special pharmacy would send tore up my skin until I found Aqua Cel Foam – totally waterproof and protected my skin and site – just walk into the shower or swim without a problem. My Pulmonolgist made sure the special pharmacy would supply them. I would use 4×4″
Unfortunately after so many years the pain got really bad and I had to switch to the IV Hickman line. Instantly no pain but cumbersome.
Other tricks I learned about dealing with subQ I would be glad to share or just let me know any issues your husband is dealing with, I might be able to suggest what worked for me.
Everyone is different that is why this forum is so helpful and everyone is so willing to support, care, and share.
You and your husband are in my thoughts. Be well and be safe.
Carol
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