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New Member Has Diagnosis Questions
Please welcome @shalerw to the forums. While she takes time to feel comfortable navigating the forums I offered to post the following for her.
In Shaler’s bio she wrote:
Curently diagnosed with chronic inflammatory response syndrome, frequent bronchitis and exercise induced asthma. Being evaluated for pulmonary hypertension due to elevated TGFB1 signaling among other markers. I’m immune suppressed and got Covid/Omicron in December 2021. Since then I’ve been feeling increasingly out of breath, even with simple stuff like hanging up a towel after taking a bath. Feels like a knot in my chest.Shaler’s Question:
I have been referred to a cardiologist to rule out pulmonary hypertension. My first appt is April 7th and two days before that I’ll have an echocardiogram (not stress echo). Yesterday I had a treadmill exercise test (Bruce protocol) and I lasted 4 minutes 19 secs before I needed to stop due to labored breathing. I felt chest pain afterward, no during and was exhausted. Took it easy and went to bed early that night. BUT my test results just came in and it says ”NEGATIVE (passed). Reduced exercise capacity. Target heart rate achieved” It seems odd because I only got to the second level of a 9 level test before getting too tired to continue — and i passed. Is this test of any value to the diagnosis of PH? (it was ordered by my primary, not a specialist) thanks for any insights, I’m totally a newbie! -
14 Replies
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Hi @shalerw, and thanks, @colleensteele, for sharing that information here for us.
I’m sorry that you are struggling after COVID and may have PH.
I have had that treadmill exercise test(Bruce protocol) twice in my 17 years with PH. Unfortunately, it’s a costly procedure, and not all PH centers are equipped to perform that test. There is information that the specialist will gather from it to help evaluate why you’re getting short of breath. But I would not say it is specifically a diagnostic tool to rule out/in PH. I also passed, unsure how, because I couldn’t complete the test and almost fell off. My PH doctor at that time said that the pass/fail criteria didn’t affect my PH diagnosis.
A right heart catheter (RHC) is the “gold standard” test to confirm a PH diagnosis. The Echo and other tests may be ordered before the RHC to help the doctors rule out other diagnoses and reasons for having PH. Here is a link to a post with a few other tests that many undergo. I hope you will find this helpful and others can offer their experiences.
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Thank you @collensteele and @jencueva, for your help and replies. I hope my PH-self education becomes a little clearer after my first appt w a cardiologist on April 7th. I’m functioning well, just get tired so easily and have to do everything more slowly. Also, I’m going to a 7,000 foot elevation hot spring in New Mexico in 2 weeks, and hoping that’s not a foolish thing to do. Hoping if I just continue to do things more slowly all will be well. Thanks again.
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@shalerw elevation can have an effect of PH patients or those living with other lung conditions. I recommend reaching out to your doctor for a consultation before you go. Maybe they can hook you up with some supplemental oxygen before you go…just in case you might need it.
Here is a link to various tests that help diagnose patients.
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Hi Shaler – The girls are correct that a Right Heart Catheter is the gold standard for PH diagnosis. I do have severe PH with a diagnosed pressure of 53 – now down to 40 with meds, but my heart echo never shows the PH problem. I had several Holter Monitors that showed nothing, until one finally caught my heart having little rests it should not have – now have a pacemaker and 2 stents. That being said, how was your breathing before COVID? It occurs to me you may have Long Covid? That can cause fatigue and breathlessness. Dr Noah Greenspan of Pulmonary Wellness Foundation has wonderful Webinars on lung problems and a Long Covid Support Group by Zoom. Good luck with tests. Thinking of you.
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Hi @auntlizzie, Yes, I’m also concerned the regular echocardiogram won’t show anything. I had one two years ago, and a Holter, and both were normal. My breathing has been declining since 2018, when I stopped cardio exercise class due to breathlessness and fatigue. But it’s been intermittent. Since Covid, it has been consistently uncomfortable. I’m trying to get into a Long covid clinic, but there’s no appointments available until AUG. Looks like it’s gonna take a lot of patience and perseverance – a tough combo! Thank you for your suggestions, I have bookmarked Dr Greenspan and Pulmonary Wellness Assoc.
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Hi Shaler, I agree that it would be a very good idea to check with your doctor concerning elevation. Several years ago I happened to mention to my Pulmonologist that we were going to take our grandsons to Yellowstone. He was not happy. My husband ordered canisters of oxygen through Amazon and that did get me through the visit but, I still was unable to do any real hiking.
I hope your Cardiologist can get you into Yale’s Pulmonary department. Wishing you all the best in getting a medical team that will work with you.
You are in my thoughts and prayers.
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Hi @carolvolckmann , Thank you for your recommendations. That must’ve been tough, touring Yellowstone with oxygen. I will double check with my doctor and be sure to mention the elevation. If I have PH it is in the early stages, but I certainly don’t want to do anything to make it get worse more quickly.
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@colleensteele thank you! I will read and ask!
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Hi @shalerw, yes, you should have more information after that appointment with your cardiologist. Is that a PH specialist? I’m guessing that this is a PH center or specialist with the testing that they have already done.
@colleensteele makes an important suggestion; speak with them beforehand. Each person with PH is different, but altitude and weather certainly affect the symptoms. I would also ask about the hot springs. I can’t get into hot tubs, etc., so I suffice for warm soaks in the bath.
Your NM trip sounds lovely!
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My Pulmonologist manages my PAH and my disease is unfortunately progressing faster than we anticipated. I asked if we need to do an yearly right sided heart cath. We decided not for me. If you want close monitoring a Dr. specializing in PAH attached to a university is recommended. I have Advanced Rheumatoid Arthritis and stage 4 cancer too so we are treating my symptomatic for my comfort.
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Hi Darla, we only have one PH center in CT and it’s at Yale. They won’t see me until I’ve seen the cardiologist, and they are currently booking appointments in AUG. So it may take a while. I’m sorry to hear your PAH is progressing and your co-conditions are so severe. Thank you for reaching out. Getting into PH center is a great recommendation and it’s definitely my goal!
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@darlarayne you are going through an awful lot. Please reach out to us for support as often as you need.
My son reached a point when they didn’t want to do RHC’s too often. It was risky for him. Is that the case for you? With progressed PH a lot can be monitored through ECHO’s and MRI’s so hopefully you can have those done a few times a year.
How you holding up emotionally? Do you have a process that helps you deal with what you are going through?
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Hi Darla, I am so sorry your PAH is progressing faster. Do you have support at home and near by helping you?
You are one strong lady going through all that you have going on and still reach out to others to help and support them. You are an inspiration.
Please keeping reaching out in this forum so we can help support you with love and prayers.
I hope your weekend is sunny and you have time to relax and maybe watch a good comedy and laugh out loud!
You are in my thoughts and prayers,
Carol
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Hi @darlarayne, I’m sorry to hear about the progression. How are things going for you, otherwise? Did you recently start a new or increase your PH treatments? It sounds like you’re in good hands.
You share some excellent tips with @shalerw. An accredited PH center would be optimal for everyone. Hopefully, the cardiologist will send you there @shalerw and maybe get you in sooner.
Also, Dr. Noah Greenspan is excellent. We have shared some of his podcasts here before. Here is a link to the COVID recovery webinars, etc. on his site.
I hope you both are having a great day and enjoying something that makes you smile.
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