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How can we best support you with any appointments in March?
Hello, March! We’re excited to welcome you and the sense of renewal we hope you bring. Many of our forum members are eagerly watching for the blooms of flowers as we prepare for the delightful arrival of Spring after a long winter season.
We would like to offer you the best support for upcoming appointments or procedures. Are there any appointments you feel anxious about or need extra guidance with?Let’s also celebrate those tiny victories together! We would also love to hear any positive updates you wish to share. So, what’s on your medical calendar for March?
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6 Replies
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Hi Jen. I read the forums regularly, but don’t post often anymore. I still glean much information and encouragement from this site. And I love keeping up with everybody. After having a whirlwind calendar for medical appts in Feb, I am glad to say I have only 2 appts this month. I had an iron infusion yesterday and an appt with a cardiologist/electrophysiologist next week. The next few months are already filling up, so I needed this break in March! Lol
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Hi @DeLois Tweedy , It’s wonderful to hear you continue to find information and support when reading the forums. Yes, two appointments this month after a busy February are always needed. How many iron infusions did you receive? Was that the first one this time around?
My second iron infusion and a low dose of Rituxin were completed Friday afternoon. It doesn’t seem like I feel any boost in energy with mine. Thankfully, my lab values have improved, which means it is beneficial. I go back for labs next week and have another EKG. Yeah, our calendars fill quickly managing PH and other coexisting conditions. Do you have any fun events you’re looking forward to?
How’s your hubby doing? Is he on any medications for Parkinson’s Disease? Sending you all extra love and hugs, Dee.
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I haven’t posted anything in a while. I am scheduled for a bunch of tests this Friday. PFT, 6 Min Walk, labs etc. Even though I feel well right now, I am always VERY nervous leading up to tests. I have been having anxiety dreams, and I start to think to myself that I may be having symptoms…Is my heart racing? Do I feel more short of breath? etc. I’m sure this is very normal, and people tell me, don’t worry or don’t borrow trouble, but it’s never that easy. I know they are just trying to be helpful, but needless to say, it doesn’t help. I never feel better until I get the “Everything looks good!” call. No response is really needed, it just feels good to get it off my chest! 🙂
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Hi, @Roxanne Giustini , it’s wonderful to see your name and an update from you. You are so not alone on your anxiety and worry of your upcoming RHC and tests. Even 20 years later, I still do the same thing as I prepare for these tests, especially the ones like you mention, including the RHC. How often does your doctor do these tests with you?
Please know I am sending you extra love, hugs, prayers, and posiive vibes on Friday. But the waiting is the worse! Does your team call you or have you come back for a consult to get your results? Or, is it just usually a call? Hopefully your wait isn’t too long, my PHriend!🤗
What have you been up to lately? Please keep us posted after your tests and you hear back. 💜
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Hi Jen. Sorry for answering late, I just realized March is about over!
Regarding the conversation about iron infusions, the one I referenced was the first this go-round, but I don’t know how many more. I get labs again and see my hematologist in about 2 weeks, so I guess we’ll take it from there. I noticed my shortness of breath was better about a week after, but the energy has been slow in coming. I was still tired, but maybe that is a little better. I guess these things take time. I hope you are starting to feel better after your infusions.
Thank you for asking about John and his journey with Parkinson’s. He is on low dose medication and I don’t see much improvement. At times I think he’s worse. He has an appt coming up in May at UVA (where my cardiac and pulmonologist team is). It’s 2 hours away, but well worth the drive for the caliber of care and cutting edge medical treatments. The local doctor was horrible and has seen him only once for the original diagnosis. That whole scenario was unacceptable to me. It pays to be an advocate for yourself as well as others.
Hope the rest of March is good for you and Colleen. I’m enjoying the spring, though some days are still chilly. But they are better than the long, cold winter days. Sometimes that gets me down.
❤️
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Hi @DeLois Tweedy , no need to apologize, my PHriend. Life gets hectic at times, and you have had a full plate between managing your health and trying to get help for your husband, John. I’m so happy to hear he has an appointment in May at UVA, but I hate that the local doctor has not been much help. Like you, I feel like that two hour drive is worth is for that improved level of care. I hope and pray that he has a much better experience there, too.
You make a great point, it’s helpful and much needed to self advocate but also being able to advocate for our loved ones is a plus, too. Take care of each other and know the chill days will soon be behind you.
Thanks for the update and keeping us in the loop. Have a wonderful weekend. Do you have any plans coming up that you’re looking forward to?
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