Hi there, ec1984 I’ve been managing pulmonary hypertension for quite some time now—successfully, too. If you're looking to trade stories or insights, I’m more than happy to share everything I've learned... Unfortunately, I know a bit too much about this condition and several others I've been battling for years. Feel free to reach out to me, or anyone else interested in the topic, at vidabeg@ hotmail.com. Best regards...
Alright. Talk soon. Best regards.🙂🙂🙂Even if you do retire, you'll probably just spend your time crocheting, gossiping with the other retirees, going on trips, or just praying... Just kidding, I'm just trying to lighten your mood. You know how it is; everything in life has two sides, the good and the bad. In any case, you need to weigh your priorities. Put your health first. Everything else will fall into place eventually. You'll see.
🙂Understood regarding the phone situation. I’m going to send you a DM now with the answers to your questions—some of which are a bit personal. Please let me know if it goes through okay... I'm certainly no tech wizard. If it fails, I'll just give you my cell number instead. Check your inbox and let me know.🙂
It’s going to be okay, you'll see. Medical science advances every single day, and things that seemed impossible just a few years ago have become standard procedure. Which pulmonary hypertension therapy are you on, and are you actually under control? Are you being treated at Oakland or Jordan? As far as I know, pulmonary hypertension is handled specifically by the specialists over at Jordan under Professor Samaržija’s department... they are really the ones capable of recommending specific PH therapies like Pfizer, Ventavis, and other treatments used for this diagnosis. But then again, I might not have all the facts right. Would you want to hop on a call sometime? Maybe we could exchange more information that way... Best regards, and keep your chin up. It will get better.
🤣Where did you go for your rehab? I stopped going to the spas because it clashes with my pH levels. Luckily, there’s no need to worry about the RA right now since it's in a dormant phase. I’m keeping it under control with 4mg of Medrol and Rezohin. Are you actually heading in for heart surgery? What’s the specific diagnosis... could you explain a bit? Whatever happens, just stay strong and be brave. Keeping a positive attitude and the will to beat this illness is already half the battle won. Until next time, best regards.🤣😉
David Morris86 said:Hey, David Morris86. How are you doing? What's new? I wanted to ask, how old were you when the RA led to PH? I've been dealing with RA for two years now.
Greetings to you too. I was 39 when I was in a car accident and broke my lower jaw. I had to wear fixators on my teeth for two and a half months, surviving mostly on liquids through a straw. I lost about 28 pounds during that ordeal. Around that same time, my arthritis flared up intensely; my sedimentation levels were spiking over 100. Doctors believe the stress and trauma were the triggers, though later testing confirmed a genetic predisposition... it doesn't necessarily mean it wouldn't have happened without the accident. As for the arthritis, it's in remission now, but it caused lung damage, which is actually a bigger issue for me than the joint pain. The PH appeared about three or four years after my initial RA diagnosis. My rheumatologist back at the clinic in Oakland ignored it, so I had to seek out a specialist myself. I went to the main hospital, and they urgently referred me to the pulmonary clinic in Jordan. Lately, I've spent quite a bit of time in the hospital. They added another therapy alongside Pfizer, so breathing is a little easier now. Take arthritis seriously. It isn't just about joints; it affects the entire connective tissue system... there is so much more to it. Finding a good immunologist-rheumatologist is vital—I believe you see Dr. Smith—and staying on top of checkups is key. Most importantly, don't let the disease run your life. Keeping a positive mindset is a huge part of this fight. I've been dealing with RA since 1993, so it's been a long road... but I keep it under control. Best wishes, stay strong. David Morris86😛😂
David Morris86;18338820 said:I check this forum every single day, but there’s zero commentary. It makes me wonder if everyone finally recovered... which would be wonderful. But honestly, I suspect you've all just fallen into a depression because of this fog, leaving you with no drive to read or write. Come on, get moving. Things will improve. Breathing is much easier when you have Pfizer on hand. I'll stop by again tomorrow to see if you've taken my advice.🤷
Thomas Jackson9 said:I’ve been dealing with pulmonary hypertension myself for about a year now, though in my case, it isn't the primary type; it actually developed as a secondary complication stemming from some heart issues I've been managing... I'd love to hear what everyone else's experiences have been like with this condition.😕I must admit, I'm feeling quite a bit of confusion regarding all of this—I find myself wondering, what kind of pulmonary pressure readings are you all seeing, and what sort of treatment protocols are you following? Also, how are you all holding up and coping with these freezing cold days we've been having lately?🤷
Dear Thomas Jackson9. I only just "discovered" you on this forum today. It’s good to be able to exchange experiences and thoughts; it’s how we help one another. I've been dealing with PH longer, though intensive treatment only started about three years ago at the medical center in Washington, D.C. In my case, they say the PH is a consequence of Rheumatoid Arthritis that affected my lungs. When the pulmonary pressure was first diagnosed, the issue was neglected and ignored due to a lack of information from my rheumatologist at the time. Only after years of rising pressure and fatigue limiting my quality of life did I end up at the clinic in Washington, D.C., where Professor Samaržija and his team specialize in successfully treating pulmonary hypertension. At the start of my treatment, my pressure was 115, and now it’s around 70. I was on Pfizer (100mg) for three years, but lately, it hasn't been enough. Since I am under thorough supervision there following a recent hospitalization and extensive heart and lung exams, they added a new medication called Ventavis, which I take via an inhaler. I feel better now. The chest pains are gone, and my physical endurance has improved. This doesn't mean the disease is gone—unfortunately, it is incurable. Therapies only slow down the progression, which eventually turns bad. But it isn't all grim if you are treated correctly and if the patient takes managing it seriously. I'd also like to take this opportunity to suggest something, as it seems this page is being read. If a medical professional happens to "stumble" upon this forum, it would be incredibly helpful if they could write something about this diagnosis. Many doctors don't have enough experience or knowledge regarding this difficult, sneaky disease. It is often misidentified and treated incorrectly, leading to significant, irreversible damage. It would be wonderful if someone qualified could take the time to tell people how to recognize the disease, who to see, which tests to run, and much more. This would be vital for patients who haven't found the right treatment path yet. I say this from personal experience; my own journey toward a final diagnosis and proper care caused irreparable harm. I hope some "good doctor" reads this and finds the time and willingness to join us here. Thank you in advance. Until then, dear Thomas Jackson9 and all my fellow "comrades" fighting pulmonary hypertension... know your enemy to defeat him more easily. Best wishes, and plenty of oxygen to your lungs.😂
Every day, we meet someone new dealing with pulmonary hypertension. When I started treating this about three years ago, there were only about six of us on the registry. Now, based on what I'm seeing, our numbers have easily doubled. I spend most of my time at the hospital, and while every case is unique, each experience provides new motivation to keep fighting... That’s why this forum is such a vital space—to connect, share what we know, and lift each other up through a struggle that demands both resilience and constant learning. Please, reach out. I am here to help.👍
Maločas I tried sending you a message, but I think I messed something up on my end... Anyway, I just wanted to let you know that I finally hit my goal of 132 lbs. I have to stick to a zero-carb plan now to stay there, though. You need to stay persistent too, because our friend Rib isn't making it easy on us...👍😉
You have to be persistent if you want to see results. It’s true for everything in life, really. I’m incredibly stubborn—like a mule. Being a Taurus doesn't help either; we can be pretty headstrong... Anyway, I’ve hit the 60kg mark, which should be enough, though I'm not sure what my triglyceride levels look like yet. My doctor isn't sending me to the lab until late June, so until then, I'm avoiding pastries as much as possible. Right now, even my joints aren't aching; everything feels calm. I just hope it isn't the calm before the storm. After years of constant struggle, I still find it hard to believe I can wake up and go to bed without pain. To be fair, I'm still on 4mg of Medrol, but compared to when I was taking 32mg, it's nothing... I truly believe losing those extra pounds would help you, since you mentioned you're carrying some weight. So, stay persistent and don't lose hope. My motto is: Keep your head up, things will get better! They will! They must!!! Warm regards, until a new moment comes where I actually have time to chat. These little angels of mine don't leave me with much freedom!
Oh, what happened? You haven't posted anything about the diet lately... I hope you didn't starve yourself so much that you ran out of energy. I’ve been doing some intermittent fasting mixed with regular meals, and the weight is dropping steadily. Most importantly, I can finally fit back into my jeans. Please, write something soon! Best, David Morris86🤣
I didn't manage to check in yesterday. I was out on a trip early, but I weighed myself last night and hit 137 lbs, then woke up this morning at 132 lbs! I was at a birthday party on Sunday too, and I just couldn't—and honestly didn't want to—resist the lamb and strawberry cake. It's hard to say how things will go from here. I have friends coming to stay for a while, then my birthday, then visits from the grandkids, and my husband... so I'm asking you, how does one survive all this? For now, I'm just happy. I just need to get the lab set up. If we slip up a little, we'll confess to each other, forgive, and get right back to the grind. Wishing you a lovely day, and hopefully not too hungry...David Morris86😛
Not bad at all. I’ll be stepping on the scale Monday morning, hoping for some good news. Honestly, I can already feel the difference when I move... even my pants fit better. I've been staying active lately since I had a painter coming over to redo the house and refresh the interior woodwork. That leads to a lot of cleaning and constant movement. On top of that, I’m trying to keep my calorie intake low. My daughter ordered a massive spread of treats for this weekend: cream puffs, chocolate fudge brownies, Canadian sponge cake, layered nut bars, white peach cobbler, crescent cookies, jelly donuts, triple chocolate delights, and a bunch of little decorative sweets. With that kind of selection sitting there, you need nerves of steel just to resist... But I’m a persistent person in everything I do, so I know I’ll hit my target. My goal is 128 lbs. I believe you'll get there too. Summer is right around the corner, and we all want to slip into lighter clothes without dealing with a bloated waistline. Not the heavy kind, anyway. Just stay strong, friend. Best...
Alright, we’re officially underway. I stepped on the scale this morning, and I’m at 139 lbs. Don't tell me that's a lot, because I'm a tiny woman, standing about 5'2"... My goal is to hit 128 lbs and, of course, get my triglycerides under control. Nothing is harder than living without dessert. You can imagine how tough this is for me when the house is constantly filled with sweets. My daughter is actually running a small baking business from home while she's on maternity leave. She’s a real pro... You can check out her work over at collinarka. Her password is SALUAN (based on her kids' names; Sarah, Luke, and Anthony). Anyway, we are brave, determined women. We eat light and lose the fat. Good luck to us all...😂
Thanks for putting in the work to provide such detailed info. All right. We can start Monday, but we’re doing this for real. Tomorrow, we start weighing in and logging the results every Sunday night. No cheating myself, though. I might have a little dessert tomorrow. Thanks again... goodnight, until we go over those final instructions tomorrow.😂
Alright. Just give me the concept—what foods are allowed and what’s off-limits—and I’ll figure out my own meal plan. Let me know when we officially kick things off. We'll need to weigh in first, of course. Also, how long does it usually take to see those triglyceride levels drop? When should I schedule a follow-up test? 🤷🤷I’m assuming you have the answers since you work at the hospital. If not, maybe check with someone who does. Thanks for being patient with me.
That sounds great. Let's tackle this South Beach Diet together. Could you put together a meal plan for me? It's always easier with a partner... Just please don't suggest cutting out my morning coffee. I'm practically useless without it in the morning. Thanks in advance.☕🤷
Thanks for the advice. To be honest, I don't actually have a specific diet plan for lowering my triglycerides yet. I'm planning to touch base with my doctor about it in the next few days. What was that diet you mentioned that worked so well for you? I've been sticking to my routine for ten days now... staying disciplined, though I haven't seen any real changes just yet. I know patience is key. I was actually out in California for a bit recently. I spend a lot of time in Santa Monica, and it occurred to me that you might be somewhere nearby. Please reach out again when you can with some more of those wise, encouraging words.😉😂