June 22, 2020 at 8:40 am #25854Jen CuevaKeymaster
Hi y’all, I would like to welcome each of our new members to the PH forums. We are grateful that you have found us. This week welcome, @penny-kerhoulas, @patrick, @cathyhayes, @rclark, and @cindymoser.
If you haven’t already I invite you to share a little about yourself. Here are some suggestions:
Patient or caregiver
How long ago were you diagnosed with PH?
What PH medications are you currently on?
June 22, 2020 at 4:21 pm #25866Cindy MoserParticipant
I have been reading this newsletter for several years. I like the new information that is presented and I can relate to many of the topics and personal experiences that are shared.
I had symptoms of PH for many years before I was diagnosed with this disease. By the time I was diagnosed, I came very close to losing my life. By the time I was diagnosed, there wasn’t much hope that I would live much longer. I was very grey, couldn’t walk 5 steps without extreme effort and exhaustion, and was so swollen that I couldn’t bend to pick up anything or roll over without pain and effort and my eyes were almost swollen shut. I know that I would be dead now if I had waited an hour or two longer or went to a different hospital. The prognosis was grim indeed.
That was January 10, 2015…. 5 1/2 years ago! I am grateful that I am not only alive, but I am doing very well. The first medications that I was given were diuretics, including Lasix. I lost 45 pounds of water in a week! I started taking Opsumit and Sildenafil tablets.My doctor told me that I was “very sick” and that there was not much he could do, but he was going to “keep me alive.” He put a central line to my heart and started me on Flolan and then Veletri later. I stayed in the hospital 2 1/2 weeks and left looking and feeling better than I had in YEARS.
I could go on and on and on about this experience, but let me fast forward… Even though I didn’t die, the prognosis was still grim. 6 months passed. Then a year… I eventually was taken off the intravenous medicine and started taking Uptravi. I still take Uptravi, Opsumit, Sildenafil, Lasix,and Spironolactone. I use oxygen at night and sometimes during the day. I also use an inhaler especially if I am going to be exerting myself. I went from almost dead to waking up in the morning. Not only that, I was wide awake… I can’t remember ever feeling wide awake before. And I started walking and being able to stay awake long enough to be able to do things like go to the park or shopping. Actually, I was driving everyone around me crazy because I didn’t know what to do because I had spent my whole life sleeping and I didn’t know what to do with all my awake time.
And then…. 3 years ago, I found out about roller derby. I knew that there was a local team because they skated in the Independence Day Parade. But then I saw an announcement on Facebook that they were having Freshmeat Orientation and recruitment. I went because I didn’t have a job or much else to do, and I am crazy. I was welcomed and found out that I could participate as a non skating official or help with other things off skates but I was encouraged to watch a couple of practices and to try skating. At that time, I was working on building up my muscle strength for walking. I was not up to skating… Yet. I watched some practices, started helping with the bouts and other derby team activities and got myself a pedometer… Then skates and pads. I started skating with my son SLOWLY… It took me all day to do a few laps. I was terrified to fall even though I had huge kneepads and learning to fall from a standstill should be easy. Well… I got over that and turned 50 and got my butt on that track for my first real roller derby practice! Guess what? I did it. Then I did it again…. I made it through my first round of Freshmeat! I do not actually do contact because I still can’t pass my Freshmeat skills but I am still roller skating. There is no roller derby right now, and I am missing it, but I have continued skating and the track is closed, so I have been forced to go out of my comfort zone and skate on sidewalks and in parking lots where there are cracks and obstacles… I still skate slower than anyone, but I am still skating and my skills on track will be enhanced from my street skating. I can see alot of improvement each time I skate. It’s amazing.
Even though I am doing well, I do have PH symptoms all the time to different degrees. I talk up derby and skating, but PH is definitely a constant all day everyday for me. Sometimes I have days spent in bed. Often I get headaches and other side effects of my medication. I have to take meticulous care of myself or pay a price for failing to do so. I have realized that it is not just me that is affected by my health. My family and my little dog go through the ups and downs too. It is definitely a challenge to add PH to everything else.
Thank you for taking the time to read this novel. I would like to thank everyone who shares information and stories about their own PH journey. We all have different stories but so many similarities, too.
I am feeling pretty good today… My gear is packed. I live about 35 minutes away from San Diego. There are a couple of places my son and I have been wanting to go skate. Although there are some spots by the beach here, I think we are going to head to San Diego. ROLL…BOUNCE!
June 23, 2020 at 8:19 am #25875Jen CuevaKeymaster
Wow, @cindymoser, what a journey you have lived already in the last 5 years! I am sorry that you have PH and was so sick but grateful that you are doing better. I think that you will find that we can all understand how every day and every story is different. I am happy that you decided to join us and share some of your journey. You never know who this may help.
I love the roller derby story! I have watched them on TV and never seen one live. There is a local group of women here that have a team, of course, not at this time. I am impressed that you can roller skate but more excited as your passion shows through your writing about this.
I am on Uptravi, sildenafil, three diuretics, including the 2 that you are on, too. Yes, some days, the PH symptoms and side effects take over. But I cannot complain. I have been in much worse shape. I hope that you and your son enjoy the San Diego boardwalk as y’all skate. That is one of my favorite places. Years ago, I saw my PH doctor there at UCSD. I am in Texas now and miss that area so much!
Thanks again for sharing your journey.
June 23, 2020 at 1:15 pm #25889Colleen SteeleKeymaster
Wow @cindymoser I was really glued to your story while reading it. You have been through a lot but you have lived and enjoyed life just as much.
Personally, I swear by Flolan. I know the responsibility of it can feel overwhelming at first but then it becomes routine. It took two years to diagnose my son and by then he was in critical condition. He was placed on Flolan, Tracleer, Revatio, diuretics, and a few other things. He did well for 5 years before needing a transplant but I’ve known people who have done well for much longer. He never had the chance to try Opsumit but I am hearing a lot of success cases with it.
Thank you for sharing your story with us. I can’t wait to hear more of your journey.
June 25, 2020 at 8:02 pm #25931DawnParticipant
Welcome to @penny-kerhoulas, @patrick, @cathyhayes, @rclark. My name is Dawn, I live in central Pennsylvania. I was diagnosed with ph two years ago, after 3 years of searching for a diagnosis. I’m on adcirca & ambrisentan, which took a good while to start working but finally did start working. I think you’ll find the forums to be a great source of support and understanding.
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