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My new symptoms led to more tests and a POTS diagnosis
Recently, I’ve shared some of my new health-related struggles. I know many of you can relate to managing PH and other comorbidities. But at times, it can become overwhelming. But somehow, we manage to push through and keep up the PHight. It helps to have the support of others, like here in our PH News forums.
Do you find yourself asking yourself, how many more diagnoses will I receive? If so, you’re not alone.
Click the link below to read my newest column. Let’s talk about this in more detail.
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6 Replies
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Dear Jen,
I’m so sorry to hear that still another diagnosis is on your plate. I’ll pray for you of course, and send you gentle hugs. What do the MDs think causes POTS and what can be done to help you?
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Hi there, @Terese Tuohey . I hope you and your hubby are doing well. Are y’all still enjoying the Florida sunshine?
Thanks so much for your thoughtful words and support. My PH doc thinks POTS can be another complication of my long COVID. Hopefully, I’ll learn more in July when I see a cardiologist specializing in POTS. I’m on medication (orally) three times per day so far. It helps me from feeling like I’m going to pass out when I stand up.
Have a wonderful weekend, my PHriend- hugs and love are coming your way! 🤗
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Wow!! Sorry to hear about your POTS. I had to google it to get a better understanding of what it was. Sounds like you need to take it easy. You can get lightheaded, fall and hurt yourself. What is the treatment plan for POTS? How often do you get blood tests to monitor sodium and other stuff? How do they monitor your POTS…..blood tests or something else??? PH and kidney problems too?? I can see why you spent so much time in the hospital. Sounds like Manny is a GREAT husband to take care of you. You lucked out when you married him.
You are in our thoughts and prayers. Keep us informed on your progress.
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Hi, @Roger Bliss; thanks so much for reading and your thoughtful words of encouragement. You guessed it, The answer to what they do is medications. I’m on one now, three times per day. My PH team is monitoring my progress because I can’t get in to see the Cardiologist specializing in POTS until the end of July.
I checked my BP and HR three times per day the first few weeks; now it’s daily. The medication is helping my BP not drop too low while lowering my heartrate when I change positions. I’ll know more about my plan once I see that specialist at the end of July.
My labs are done at least monthly, if not more often. Because of my low sodium and kidney disease, this is what works best for me. At one time, it was weekly, and I’m grateful that season is over.
Yes, sir, I agree I am fortunate to have Manny. He’s a keeper, and 32 years later, we are still here, surviving all of these rollercoasters life throws our way! Like you and everyone else, we have no choice, so we roll with it.
I know you and Mary Ellen are counting down until your final infusion is completed, so you can start on the road home. Thanks again four your thoughts and support, please keep us posted on you, too.
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@jen-cueva I am so sorry you are dealing with another diagnosis but I guess grateful that it was found so it can be properly monitored and cared for. I know you have struggled over the past few years. Do you think this had been attributing to your difficulties? How long would you guess you have been dealing with Potts?
I’m back again friend, so whenever you need a day of rest I’m here to help.
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Hi, Jen!
I’m sorry to hear that you have another one diagnosis. But I am becoming more and more convinced that PH is not the only thing. I agree with those doctors who recognize that EVERYTHING in our body is interconnected. Our PH is just one thing that has a name, but it’s only part of the whole. A good doctor is a real detective. The illnesses of some patients are so complicated and confusing. You can devote a lifetime to studying and treating one person!
Hold on and take care of yourself, and we will send you good thoughts!
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