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Welcome -new sub-forum
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.
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29 Replies
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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. -
I am testing this entry trying to find a way to make entries into the forum.
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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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I am Jane Armstrong and have been reading these postings for almost a year. Now I would like to be able to join in. I was diagnosed in January 2017 at the age of 77 with Idiopathic PAH. I live in NH and am being treated at Brigham and Womens in Boston. I think my PH was caught quite early by the cardiology department at Dartmouth Hitchcock and I am very grateful for that. Medically I am pretty stable. I take Sildenafil, Ambrisentan, Tyvaso and oxygen all night plus whenever I walk more than a block or two. My saving grace is Yoga, one lesson a week plus almost daily practice. But…. PAH has taken away hiking, cross country skiing, long walks, snow shoeing, and bike riding. I am having trouble being this new person who looks like the same old healthy person.
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Hi Jane, I am Carol Volckmann. I am 78 and was diagnosed with PAH caused by Scleroderma in 2005 and was told I had 3-5 years to live. Did not believe them and sought out Pulmonologist who knew about how to treat this being very aggressive.
You certainly found the right team beginning with Dartmouth and now Brigham Young in Boston. I grew up in New England but now live in the Pacific Northwest.
Like you I really miss downhill/ cross country skiing, snow shoeing, hiking etc. The biking I can still do with e-bikes. My husband and myself really are enjoying that. I think you would like it!
Looking in the mirror can be a bit frightening at times, but we are still here!!!
Welcome to this forum – caring very supportive people.
Hope you have a wonderful weekend, stay stable and stay safe!
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@janenlnhtds-net looking healthier than you feel is a big struggle for many PH patients but the way you worded it is powerful, “I am having trouble being this new person who looks like the same old healthy person.”
Are your friends and family having a hard time with the comparison too? It can sometimes take a lot of educating to help people understand that PH is a disease that is often more ugly on the inside than it is on the out.
Thank you for sharing that you have been following the forums for about a year. It’s nice to hear from you! I hope you will feel even more supported by sharing your own experience and asking questions.
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I would like to point out to others who might also come here to just read that we welcome you to continue doing that but at ANY time, we also welcome you to join the discussions. We re here to help you on whatever level you feel the most comfortable.
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Hi, Jane. I’m the person Jen Cueva mentioned–Brenda. I’m leaving tomorrow before the rooster gets up so I can fly to Boston for a level 3 cardio-pulmonary exercise test. My original appointment was at Brigham & Women’s, but they had to re-schedule me and the appointment will now be at Newton-Wellesley Hospital. Same doctor and team. Just a different hospital location. As it is, I’ve waited 7 months to get in. If I had insisted on B&W as my hospital, it would have been next February before I could get in!
Given that I’m going to be in Boston for 3 full days and two half-days, if you live nearby, would you care to come for a chat at my hotel? My mobility will be limited. No car. But if you’re in the area, I would love to tap with you.
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Hi @brendad53, I’m hopeful that you made it to Boston safely. Tomorrow is your big day, and I’m so excited and nervous for you.
This has been a long time coming. Don’t forget that we are here holding your hand while covering you with love, hugs, and prayers.
That would be so much fun if you and @janenlnhtds-net could find the time to meet up and chat.
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It’s nice to think of all the folks on the PH forums hovering invisibly around me as I meet this new group of strange doctors and nurses.
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@brendad53 I just got on the forums but it is not the first I have thought of you today. You are surrounded by PHriends.
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It is notable that a couple of our new participants are or were on subcutaneous medications. Sue, Jane and Carol we share much of the same PAH management. I usually have to change my infusion site around six weeks. It used to be extremely painful for about 8-10 days then would calm down. Now the pain lessens sooner.
Living a life encumbered by this disease puts us into a special category. It isn’t obvious to others but we are still capable of living a near normal life. I’ve been on supplemental oxygen full time since April 2019. That is a real limitation I have to work around but my friends have gotten used to seeing me drag my oxygen around.
Sue see if you can get your husband to join the forums. There are not too many men on line with PAH. Statistically more women develop this disease than men but no one seems to know why.
Glad you are reaching out. PHA has been very helpful for me in the eight years since I was first diagnosed.
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Thank you, @cdvol3gmail-com, @ripple76, and @colleensteele, for your kind words and supportive welcome to @janenlnhtds-net. This is such a caring and loving group; we are blessed.
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I wish this forum had a way for us to “applaud” others’ comments without having to write something. But it doesn’t. So….
<<applause>>
<<applause>>
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@brendad53 I put in an “applause” suggestion with tech support but I can’t make any promises. LOL!
Just want you to know I will be thinking of you tomorrow and praying! I know we will all be anxious to hear an update.
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Thank you for your welcomes! My husband is very supportive and is good at knowing when to let me work things out on my own and when to offer help. My 4 children are grown, married and we have 7 grandchildren. They, too, are seeing how my life has changed. For instance, this summer we wanted to go to a cousin’s funeral in DC. We decided it was easier to drive than to negotiate the airlines. So it turned out that our daughter who lives not too far away decided she wanted to go, too. She became our 3rd driver and I’m sure some of that decision was to help us with the 7 or 8 hour drive.
I also have been going to a support group ever since I was diagnosed. We meet at Dartmouth Hitchcock (except for a Zoom break until this summer.) We now have members from outside of NH thanks to our Zoom days. Now it is hybrid. It is a wonderful group of supportive people and so good to get together with others who understand all our ups and downs. We usually have speakers to learn something about PAH and my husband comes, too. I think support groups are worth seeking out.
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Hi @janenlnhtds-net, welcome to the PHamily. I’m so happy that you’ve opened up to share your concerns and things you are struggling with.
Your care team and B&Y in Boston are excellent. The support group sounds like it’s a positive experience for you. It helps knowing others are going through this, too.
We have a member, @brendad53, looking for a diagnosis which will be seen at B&Y on Thursday. Who is your PH specialist there, if you don’t mind sharing?
Although I’m a tad younger than you, I, too, struggle with who I am now and looking in the mirror, especially on my worse days. Like @cdvol3gmail-com, I use an e-bike to get my bike riding in. It helps because my hubby and I can enjoy bike rides together. That fresh air and nature do my soul good. That and sitting at the beach or near a lake help me.
I was diagnosed almost 18 years ago and do better with this most days. But I continue to have those days. You’re not alone; we are here to walk you through this new PH journey.
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Thanks for the msg Jen. Today has been one of those crazy days.
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I see Dr. Elizabeth Gay and she is very good. On the other hand, she is in the Pulmonary department at 15 Francis street and I think many, if not most, of the PAH patients are treated in the cardiology Department at 75 Francis Street. Once I asked Dr. Gay about having posters about support group in the examining rooms and she said that would probably happen in the cardiology department. Over there is Dr Waxman, who did my right heart cath. He is very busy and I was going to have to wait longer to see him so I started with Dr. Gay. I find that B&W does not seem to treat you with a team the way Dartmouth does. There you have a care manager who comes to your doctor appointments, does a lot of work with insurance and prescriptions and is very available by phone.
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Brenda
We are quite a group!
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I would love to visit you, Brenda, but I am in central NH so coming to Boston is a pretty big deal. Of course, not as much as flying in! I will be thinking of you and hope all goes (went?) well. I am interested in the term you used about your doctor and “team.” That is my only disappointment with Brigham and Womens. They don’t seem to talk about a team. So I just see my doctor every 6 months. I know some places have a Care Manager assigned to you who do lots of different support things and are available by phone easily.
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Jane, I’m going in this morning (in a moment) for this procedure. I’ll respond at greater length later. But if I don’t, yank my chain again, OK? My memory is very godly….well, hole-y would be a better word! LOL!
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