August 12, 2020 at 1:48 pm #26685Colleen SteeleKeymaster
We all have been through the shock and devastation of being diagnosed with PH. Many of us never heard of or really understood this disease until they were told that they have it, or that a loved one does. My personal experience when my son was diagnosed was that I felt like I was cramming for a test. There was so much to learn and in order to properly advocate for him, I had to get a grasp of things fast.
Remembering that first year has me thinking about our newly diagnosed members. How are you doing? What questions do you have that our seasoned PHer’s might be able to help answer for you? What are you most nervous about? We are here to support each other so please reach out if you are in need of compassion and understanding.
August 12, 2020 at 3:00 pm #26698
Great topic and timely, @colleensteele. We have so many new members, and many are newly diagnosed. I do remember how scary and overwhelming that was for myself and my family.
I think that having a place like the forums where others share their experiences and compassion as well as empathy, is a huge support to many. I am hopeful that we can support our newly-diagnosed members as they need it the most.
What questions do you ask your doctors? How long will a new treatment take to see improvements? So many questions, I am sure.
August 13, 2020 at 9:45 pm #26726TammyParticipant
I was told by my pulmonary doctor that I am NOT a candidate for surgery but I could have the BPA procedure done as an option plus medication. Just curious to see how many folks out there have had the BPA procedure and was it successful? The recommendation was to either go to San Diego or Houston if I decide to have this done; I live in Oklahoma. I am in the beginning stages of CTEPH but being extremely active and a long distance runner, just FRUSTRATED! It took them pretty much a total year Feb. 2019 to December 31, 2019 to diagnose this disease. I’m just trying to hang in there and keep going with my exercise routine the best I can; and in 2012 I was diagnosed with pancreatic cancer (early stages) had the surgery and all is GOOD! The side note being, they had to remove my spleen and half of my pancreas, which I read with CTEPH that the spleen could be part of the factor. Just trying to figure out if the procedure is worth it. Respectfully
August 14, 2020 at 4:47 pm #26746Colleen SteeleKeymaster
@tammykusick I was fairly certain we do have members who have experience with BPA. I searched our forums and found the following discussion. Read through it and please feel free to add questions and comments to the topic. I’m sure those members will be happy to respond and offer advice and experience.
August 14, 2020 at 10:06 pm #26751TammyParticipant
Thank you so much for the information; kind of taken back that so many people have had this BPA procedure several times. I will keep checking the topics and feedback from this forum; still have a lot of thinking to do and research. Thanks again Colleen and Jen.
August 15, 2020 at 9:15 am #26752SandyParticipant
Thanks, Colleen and Jen, for asking about us as newly diagnosed PH patients. I am having two challenges currently that wear on me emotionally: 1) My doctors keep telling me that I need to walk as much as possible and yet my shortness of breath on exertion of any kind is so significant that I can only walk for about 5 minutes without becoming completely breathless. I dread walking because it makes me feel crappy. 2) I’m trying to get my head around the impact of having a chronic illness such as PH. I have always been a healthy, active, positive person and this condition is dragging me into negative territory. I’m tired all the time, feel 10 years older than I did before the diagnosis, etc. etc. etc.
Do any of you relate? And if so, how have you tackled these issues?
Thanks for your input. It does help me to read your stories and find so many bits of wisdom and concern that I can relate to . . . helps me feel less alone in this.
Be well everyone.
August 15, 2020 at 8:56 pm #26756DawnParticipant
Hi Sandy. I was diagnosed about 2.5 years ago with ph & limited scleroderma, and a year or so before that was diagnosed with severe sleep apnea. I can definitely relate to what you’ve written! Although I’ve been overweight since my early teens I was very active. The issue that got me going to doctors was my breathing getting labored, needing to stop and rest, doing things that I’d done for many years without any issue. It took about 3 years to get the ph diagnosis.
Luckily I already had a great therapist for treating my depression, and her help has been invaluable in helping me get my thinking sorted out on these illnesses. I can tell you it was tough for me physically until the ph meds started working. It’s still tough, because I can’t do some things I used to, but oxygen helps me do most of what I used to do. If your dr hasn’t discussed supplemental oxygen with you I would ask. My oxygen drops significantly once I stand and start moving, they don’t know why, so oxygen has been a huge help.
A few things that helped me with my diagnosis is that although I’m in no hurry to leave this world, and people I love, I have loved ones (mother, grandmother, grandfather) who have passed that I still miss terribly and I know I’ll be with them again when I pass on. Also, shortly before my diagnosis I adopted two small dogs with long life spans according to what I read about the breeds. I’m not going to leave them until I’d absolutely have to. I’ve been blessed to volunteer with an equine assisted therapeutic riding program for almost 14 years, and although I can’t help with the program duties much any longer I still get to be around the horses. I’m not giving them up until I’d absolutely have to either.
My philosophy has become, while being realistic about my diseases, is that I ignore them as much as possible and live my life as much like I used to as I can. Give yourself time to grieve the changes in your life Sandy, and it took me a number of times doing that, then find what works for you to not let disease take more away from you than you absolutely have to. Take extra good care.
August 17, 2020 at 1:27 pm #26763
Hi @tammykusick, I am grateful that some of the information is helpful to you. You have been through so much already. It sounds like you research and familiarize yourself with the pros and cons of procedures and medications. This is a huge plus and WTG on being knowledge as this makes for the best advocate for our health.
We are here, and often others may have the same questions and concerns as you, so feel free to ask at any time.
August 17, 2020 at 1:34 pm #26765
Hi @sandydenn, I can so relate to that feeling. When I was first diagnosed, I could barely walk from my couch about 10 steps to the bathroom. I think that your doctor means for you to do what you can. That may be 5 mins, and it may be 2 or 10. On different days, this will also change.
After 15 years with PH and treatments, I still have days where I am SOB with very little activity. I also use oxygen at night and as needed with exertion, which is always. We have to learn to listen to our bodies and find our “new normal.” This looks different for everyone. Oxygen may be helpful.
Once starting and finding the right treatment and dosage is critical. That takes time. @dawnt offers some great insights from her experience. I also have a therapist. Sadly, I waited until about 14 years after my diagnosis to agree to go. This has been helpful in my anxiety and also reminding me that I am sick, and I cannot do what I once did, but focus on what I can do now.
I am sending you hugs from Texas and know that we are all here and have been that newly diagnosed, overwhelmed patient at one time.
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