March 27, 2019 at 3:20 pm #16464CherylParticipant
Hi everyone and thanks for allowing me to join this forum!
I apologize for the lengthy post – I have access to medical journals and have read as much as I can about my test results/symptoms but I’ve learned as a result of some other cardiac conditions that advice and guidance from patients is usually the best!
I’m a 35 yr old female and have regular echos done as I had my pericardium removed following lengthy pericarditis. Prior to the pericarditis, like many of you, I was very active, mountain biked, hiked etc. I’m now 2.5 years post surgery. 1.5 years ago I was able to bike up dirt trails and hike up mountains…but that’s since changed.
My echo in May showed a PASP of 40mmHg. This alone wouldn’t have concerned me but by that point I was finding myself more SOB with exercise – I thought it was just poor fitness as it was occurring only with exercise like biking and hiking and I blamed myself for not getting in shape enough following my surgery.
I had an appointment at a PH clinic in August but because I could still hike and bike (though I was going much slower and stopping much more due to the SOB) it was suggested it was a minor lung problem or insignificant (that echo showed PASP of 31). Come September, we went for a bike ride with my 65-year-old father on an easy trail. I used to be able to ride 40km up mountains but on that ride I was so SOB and so far behind my dad, I kept stopping to pretend I was looking at things so he didn’t notice my breathing. By the fall I started to notice SOB with regular activities such as getting winded with bringing in a bag of groceries from the car to the house (not a long driveway). Now I’m SOB if I walk up more than 1 flight of stairs. My pulmonary function test this fall was completely normal.
My echo at the end of October showed a normal PASP (29), but stated it may be underestimated because I have incomplete tricuspid regurgitation. Concerningly, the echo report said I had “right ventricular reduced global systolic function” with a TAPSE of 12mm. Most of my Drs response was “this can’t be”, “this doesn’t make sense” and ordered a follow up echo for the end of April. (previous right ventricular function has always been described as normal in my echos).
Their hope was that my exercise capacity would increase if they adjusted my pacemaker settings (I had a pacemaker put in 4 years ago….) But two stress tests later show that my exercise capacity keeps reducing (I had to stop early due to significant SOB both times), and the pacemaker is adjusting my heart rate appropriately. My BP does not drop with exercise.
I’m also fatigued….all the time and have regular naps (and I *always* fall asleep after activity). I’m still trying to do as much activity as I can but it’s exhausting and getting harder. I used to be able to do a 1 hour gym workout. Now if I have to stop after 20 squats with a 10lb ball because I’m so SOB.
I’ve read the journal articles about the echo results and I’m probably equally at fault as my Drs for hoping there’s an easy fix here….I also know that the average patient is diagnosed 2 years after their symptoms start and that time to diagnosis = significantly better outcomes…BUT you are the true experts here…
I have a follow-up appointment at the same PH clinic in 2 weeks. There they’ll do another echo and 6-minute walk test and I meet with the same Dr. I’m concerned if the echo shows a normal PASP he may discount my symptoms despite them worsening since I last saw him. My question is, does this story sound familiar or am I looking in the wrong place? Am I way out of line to think that PAH is a possible differential or does my story not sound in line with your own experiences…
March 27, 2019 at 3:30 pm #16469
I am one of the moderators here and I want to first thank you for taking the time to write this post. I know it takes a lot to share you story but just know that your words can also help others out there who are struggling with similar things! I want to tell you that your story sounds similar to mine. I was born with a congenital heart defect and have had open heart surgery, a bypass surgery 5 years ago, and also had a pacemaker placed. When I went through testing, my PH was never recognized and my breathing condition that led to my PH was never recognized until recently. On echo my pulmonary pressures are actually FINE when I’m sitting down. The doctors tested me on exertion and found that my oxygen levels actually drop during the 6 minute walk test about a minute (sometimes less than that) into it. What they did for me to diagnose me is called a right heart cath AND a cardipulmonary exercise test at the same time. During the test, (the right heart cath is the gold standard way to properly diagnose PH) they placed the catheters into the heart from the arm after they numbed up the area and had me exercise and exert myself. They could physically see the workings of the heart and more specifically the pressures in the artery upon exercise. I would suggest asking your doctors about this specific test. I know that not all hospitals do it, but it will provide very useful information I’m sure especially because from what you’re saying, you are symptomatic with doing activity and it has been getting worse. I would ask for an exercise right heart cath. It sounds a lot scarier than it is but it was NOT that bad and it helped to give them so much information about my breathing, pressures, blood oxygen levels etc. I hope that helps !
March 27, 2019 at 4:50 pm #16487Jen CuevaParticipant
Hi Cheryl ,
I feel like you could have “ exercise or exertional” PH…with those Echoes, your history and symptoms, I would ask at your next appt with the PH Doc if they want to do a right heart Cath . I think the 6mw will probably show then you do have issues as well and maybe that will help them to be more like,y to do more testing!
Brittany has another great idea that maybe they can definitely the echo and/ or right heart Cath with an exercise portion! I would continue to advocate and continue to remind them of all of your symptoms as well. Best of luck to you and please keep us posted!
March 27, 2019 at 10:38 pm #16494teamleslieParticipant
I am going through the same thing as you. I am also a 35 year old female going through the plethora of testing for PH. I have been SOB for 3 months now. My only medical history is asthma and anemia. I was told I failed my 6 minute walk test at 3 minutes. I don’t know what that means in terms of numbers since my SPO2 was >96% the whole time and my HR was in the 90s. MY DLCO was only 66. My PAP on ECHO was 27. My cardiologist didnt think my tests and symptoms were significant enough to cath YET. He asked that I repeat the ECHO in a month and if my symptoms and/or ECHO was worse or stayed the same, he would cath.
I am extremely frustrated. I have been feeling better the past 2 weeks but I feel my body has just compensated. I do notice I have trouble when bending down to get something and coming back up.
I understand how you feel about all of this. We’re young and active. Now we just play the waiting game. Please keep us updated and feel free to message me anytime.
March 28, 2019 at 7:18 am #16503
I know the feeling of the “waiting game ” all too well and it’s so hard to wait around especially when your body just doesn’t feel well at all. I would keep advocating and asking your doctors even asking them about the test that I mentioned to Cheryl about the exercise heart cath. This really does give a ton of information. Maybe if they want to do least invasive at first they can start with a cardiopulmonary exercise stress test WITH ECHO before and after for comparison of pressures. The heart cath would be the most accurate, but to get a general idea without having to do anything invasive they could start with that. It’s worth asking about it! This is YOUR life that’s on hold and you deserve to have something done to help you out.
April 3, 2019 at 3:23 pm #16527CherylParticipant
Hi Brittany, Jen and Leslie,
I can’t thank you enough for your replies!!
I have read before of the exercise/exertional PH – that sounds like an excellent idea to have another echo done *during* activity as opposed to only at rest.
Brittany – I didn’t realize that they could do a right heart cath during exercise and it’s really interesting that your pressures also showed up normal at rest but that you finally received a diagnosis with a right heart cath when exercising!
…the waiting game indeed – it feels like a catch-22: if you’re not “bad enough” and young, then your symptoms are written off as something that can’t be that significant, it’ll be fine. But if you’re young and it gets bad, that’s when we have the “benefit” of more action taken…because we’re young. Except you’ve already played the waiting game for tests and answers…(just a little rant that I know you all understand 😉 )
thanks again! I’ll keep you updated as to what happens and will post if I have any more questions leading up to the appointment.
April 3, 2019 at 3:56 pm #16589
YES! I totally get what you mean about the waiting game and not wanting to be “too sick” but you also want to be taken seriously and have someone notice the symptoms that you are experiencing and all the difficulty you’re going through. It shouldn’t have to come to the point where you feel like you’re proving how “sick you are” and sometimes it can feel like that for those with chronic illness. Definitely would be good to ask your doctors if they do this type of right heart cath. Let me know and keep me posted on what’s going on and what the latest is after your appointments.
April 4, 2019 at 11:33 am #16609Jimi McintoshParticipant
Glad you shared your info, I too have been experiencing similar symptoms, SOB
with little exertion. I was walking 2 miles a day this time last year, 6 minute walk test was normal walking on
flat surface, add steps or incline, I was exhausted. My doctor said it was more COPD and asthma than PH. Use the
Triligy and the rescue inhaler before exercise.
My Cardiologist agreed, after a double heart cath in August and both felt that the extra weight was the major issue. They both felt that Lapband or Gastric bypass would help. I have cut
Down on food portions, more veggies, little if any salt. No significant weight loss. I am feeling like I am losing this battle and PH is progressing, if I could get a walk test with steps and inclines, maybe they see the progression
April 4, 2019 at 3:50 pm #16612
did you end up getting the surgery done for the weight loss? Are they still recommending that to you? You can always self advocate for testing that you think might be necessary and ask them to do a test especially if you are noticing changes in your symptoms. This is something that is very important to bring up and something the doctors should want to keep track of. Maybe try to get an appointment with then as soon as possible or at least call the office to see what they think! If you don’t agree with their thoughts on it than advocate for an earlier time.
April 5, 2019 at 11:36 am #16617Jimi McintoshParticipant
I am still on the fence on this gastric lapband. I know people that rapidly gained the weight back. My major concern is that usually you are on protein supplements and my kidneys are from stage 3-4 and one kidney is polycystic. Plus the cost of all these procedures and medications are over-whelming. If my 3 primary doctors were in full agreement then it would make it easy to go forward with the procedure.
I am still recovering from “bells palsey” and my face is almost normal, but, I still have visual issues in the
Left eye, with glasses and readers. My
6 minute walk test is good, but stairs and inclines, leave me winded and SOB
I really appreciate your checking on me, if seems that only those of us suffering with PH, understand the many ups and downs. Keep the positive work going, it is a “beacon” in the storm
April 8, 2019 at 7:48 am #16620
Thanks for your update Jimi. I look forward to reading about how everyone is doing here and I know that there is such a wide range of physical and emotional symptoms we all experience. It’s good to be able to talk with one another and support each other through it. The kidneys might have to work a little harder while processing that protein. Have you mentioned these concerns to your doctors and have they given feedback? It’s hard when they are not in full agreement with each other and one doctor says something completely different.
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