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Let’s welcome our new members in 2025!
What a terrific group we have here in the Pulmonary Hypertension News forums! I can’t thank you all enough for your continuous support and kindness to help each other.
We all know what it’s like to feel isolated and frustrated when others can’t relate. So, would you please help me welcome our newest members?
Welcome aboard, @Teresa , @Carolynn , @New , @Jewel , @Brill , @Healthy , @Pops , @DaP , @Marlenemso , and @Kristin to the PH News forums. We are thrilled to have you join us. If you feel comfortable, please share a little about yourself to help us get to know you better.
Here are a few suggestions to get you started, but share as little or as much as you are comfortable with.
- Are you a PH patient, caregiver, family/loved one, or healthcare provider?
- How long have you/your loved one been diagnosed?
- What fun fact about yourself do you want to share with us?
- Which PH treatments are you on?
- What state or area do you live in?
- Do you have any hobbies?
Of course, you can share other aspects of your life and your PH journey. We’re excited to get to know you better.
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21 Replies
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Good Morning,
My name is Lynda and I have been living with PAH since 1/21 and threw medications and clinical trials I have become at a stable point living the best life I can! I live in Tx. Welcome to all the new members!!
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Hi @Lynda , thanks for sharing a little about yourself. What area are you in, Texas? Did you get snow last week, too? I was between Houston and Galveston for years before returning to San Diego.
I’m happy to hear that things are stable with your cutrrent treatment regimen. As I say, stable is a good place. It’s the progession or worsening with PH we worry about.
What’s a fun fact about yourself?
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Hi @Lynda , how are you doing? Is there anything new you want to share with us or need us to support you?
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Hey there,
I am doing good! Rx is going well, The Clinical trial I have been on in addition ends in May but just found out they will continue to let me take the medication until FDA approval since it has helped! Trying to walk 3-4 x a week about 35- 45 min and doing well with that. I hope all is well with everyone!
Thanks and make it a great day!
Lynda
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Hi @Lynda , I am so happy to see your update and to learn your RX is going well. That, in addition to your clinical trial success! That’s such a blessing. Thank you for participating in the trial. I hope it continues to work well for you!
Wow, you are setting the bar high, my PHriend! Walking that often and for such a duration is incredible!🏅
I take short walks with my oxygen and continue to use my wheelchair for longer distances. However, I’ve been doing light exercise three to four times a week.
It’s great to hear from you and celebrate the tiny victories with you!
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Hello, my name Kirsten. I was diagnosed with CTEPH August 2024. I had a pulmonary embolism from cancer that didn’t dissolve as it should have, now I have CTEPH. I am so thankful to find this site.
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Hi, @Islandmom. You certainly have been given an overflowing plate. How are you managing it all? Do you have a strong support system at home?
Did they also discuss any surgery options for your CTEPH? PTE surgery can help those with CTEPH. I’ll share a link below that you may find helpful. You can also search the forums for conversations about CTEPH or PTE surgery using the search box.
But as you’ve probably noticed, our members are incredibly supportive, like @carol-volckmann in her words of encouragement.
https://pulmonaryhypertensionnews.com/forums/forums/topic/pain-and-pulmonary-embolisms/#post-39172
pulmonaryhypertensionnews.com
Pain and pulmonary embolisms - Pulmonary Hypertension News Forums
Pain and pulmonary embolisms - Pulmonary Hypertension News Forums
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Hi @islandmom and welcome Kirsten, I love your sign in name. Where do you live?
You sure got hit with a load I am so sorry. It sounds like you do have a handle on the plate you were given. Are you seeing a Pulmonologist you feel comfortable with? What are they doing for you right now? I know, lots of questions 🤔.
Mostly, I am glad you found this forum. Frankly it is the only forum that I have found that is totally supportive and very helpful.
I was diagnosed with PAH caused by Sclaraderma nearly 19 years ago. It has been a tough road with ups and downs but at 81 I am still here and plan to be for a long time.
Wishing you a wonderful weekend and hope to hear more about you in the forum 😊.
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I have been taken off O2 to walk last May and was just told to stop if and when needed and resume walking. Another thing that In forgot to mention that has helped greatly in this journey is I have lost about 52-55 pounds with the help of shots because when they told me I needed to loose weight but basically I couldn’t do anything exercise wise to accomplish that I was thinking yea sure but it has made a huge difference in my outcomes and testing!! It has taken me over a year to loose that weight. I hope this info helps!
Lynda
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Hi @Lynda , congrats on getting off the O2 and the incredible weight loss job! You know weight is difficult to lose when needed for those with PH and limited physical ability!
Which shot are you taking? Is it one of those GLP-1s like Mounjaro, Wegovy, or Zepbound? What kind of diet do you try to follow to help? If you’re comfortable sharing, I would love to feature this topic in an interview column. LMK and I can email you more details.
Kudos on the tremendous weight loss of over 50 pounds, my PHriend!🏆
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Good Morning,
I started out with Ozempic for 3-4 months which really did nothing for me it wasn’t until I switched to Mounjaro/Trizepatide that I get through a compounding pharmacy through my weight loss Dr that I really starting loosing the weight. Mounjaro has an extra hormone in it that helps with weight loss that Ozempic doesn’t. As far as food or diet I am getting more protein mostly by protein drinks, eating less fried foods, sweets ect. Another thing that has changed a lot is my blood work ie A1C, Cholesterol good and bad, PRO BMP etc. I hope this helps! Anything I can do to help my fellow PAH people I am here to do!
Make it a great day!
Lynda
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Hi @Lynda , thanks for sharing more details about your weight loss. Did you also check with your PH team to see if the shots were safe for you? I know another PHriend who is on Monjouro as well. Her PH team approved it for her, but we should consult our PH team before taking anything new since we’re all different.
Protein is essential for our bodies, including our hearts and lungs. I’ve read that we must be careful not to eat too much protein and stick with moderate amounts. But if you’re like me, you need some help getting adequate protein, like your shakes.
Can I send you an email for an interview column?
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Yes, It was my pulmonologist who first suggested the shots then the rest of the team followed suit. I wasn’t aware we are supposed to limit protein they ( weight loss DR) have me trying to shoot for 120 grams a day which is hard to accomplish! Could you please give me more info on that? Yes, you can send me a email for an interview column I am not sure what that is however lol 😀
Thanks and make it a great day!
Lynda
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Hi @Lynda , that’s wonderful that your PH doctor is included in the discussion of using Monjourno for weight loss. Kudos for that!
For protein, as long as your PH team is aware of how much protein you are consuming, it’s fine. The amount of 120 grams of protein per day is not easy to achive, but does help with weight loss. That’s also fine for some people, and you may be OK with that amount.
However, for me, I have chronic kidney disease along with PH and my recommendations are not quite as high. But my kidney doctor does want me to increase some. It’s all so individualized it’s best to ask your PH team. My apologies if I frightened you, I was meaning not to go too far overboard with protien, and that’s based on the normal female protein needs, which also can vary. so much!
Make it a great new week!
I’ll email you more info about the column interview. Thanks so much.
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Hey @Lynda , I did email you yesterday or the day before. Hopefully, you didn’t delete it.
How are things going at the end of this week? It seems like a long one for me and IDK why.
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Hello There,
I will look for the email thanks for the heads up!
Thanks and make it a great day!
Lynda
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Hi @Lynda , thanks, and please let me know if you don’t receive it for some reason. Hopefully, it didn’t go into your spam or junk folder.
Make it a great new week!
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Hi, @Lynda , how are you doing this week? Did you receive my email last week? Please let me know if not, and maybe if you have another email address you use. Thanks.
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Hello,. Can you please resend
I am sorry I have been having trouble with my phone and internet just got the phone fixed this afternoon can you please resend the email?
Thanks
Lynda
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Oh no, @Lynda , I’m sorry you’ve been having issues with your phone and internet. Hopefully it’s all fixed for you now. I’ll resend it to you here shortly. I’ll check back if I don’t hear from you next week.
How are you doing, otherwise? Any plans this weekend?
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Yes, Hopefully this issue is behind me! Just doing my taxes this weekend and getting ready to leave out of town next Saturday for a cruise for a friends 60th Birthday 😀. I will be looking for the follow up email Thanks!
Make it a great night!
Lynda
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