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Introduce Yourself
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Also I’m 37 years old
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johan Erlank this side. In 2010, I went for an angiogram due to chest pains, shortness of breath, etc. Nearly perished during the procedure. Doctor came back afterwards, told me my heart is functioning at 55%, although the angiogram showed no blockages. Also, she told me I had PH. No explanation, nothing. Told me a life coach would come and see me, and decided to do sleep studies on me. Life coach visited me once while I was in hospital. Sleep studies showed severe apnea. So I got a CPAP, and started sleeping with it. Still short of breath, still chest pains. About 2 years later, I found out exactly what PH is, and the whole story around it. Stuff no-one told me about. I called my wife, and asked her if she knew. She said she read up on PH, but decided rather not to tell me it’s life threatening. I did not know who to turn to, what to do. Kept on sleeping with my CPAP, kept on using my regular blood pressure meds, aspirine, etc. About 2 years after that, I went to my doctor, and talked to her about this whole PH deal. this was about 4 years after initial diagnosis. She sent me to another cardiologist who only did a sonar and a bit of exercise diagnostics. He informed me he could see the right heart chamber was enlarged with a bit of damage, but that I only have mild to moderate PH. Nothing to worry about. So since 2014 I haven’t spoken to any physician about my PH, because apparently it’s not that bad.
The only thing that gets me is the shortness of breath when I’m moderately active. I play lawn bowls, and after a day’s game, it feels as if I’m on the verge of collapse, but a sit down, some deep breaths, and calming exercises, and I’m rearing to go again.
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Hi Johan,
Do they think that your higher pressures had to do with the sleep apnea? Do the doctors think that the CPAP is helping to relieve some of that for you? I’m sorry you are still experiencing some symptoms. I also get symptoms when I am exerting myself even though my pressures are considered “mild”. Although they weren’t able to get a full exercise cath done for me because my oxygen levels dropped to 78 within the first minute of exercise and so they aren’t able to tell how high my PH pressures actually go. Wondering if you have ever had a pulse ox test and used the pulse ox monitor while walking around to see if you are desating or losing any oxygen? Sometimes this is part of the testing for PH called the 6 minute walk test. Is that familiar to you?-
Apparently the apnea was part of the cause of PH. The fact that my sat levels dropped to 30% during apnea-episodes did not help much either 🙂 So I believe the CPAP helped to ease the PH a bit, in that I keep on breathing at night. I did the 6 minute walk test during the second visit to the cardio, with sat levels dropping to 65-70%. I believe a right mind-set and a bit of self-care definitely helped to keep the PH under control so that it did not escalate. At this stage, my reting sat levels are close to 90%, sometimes even peaking at 95%. As long as I do not put strain on myself.
Keep on breathing!
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Johan,
I’m glad that you are seeing improvements with your CPAP therapy. It certainly would help considering you were de-sating that low ! Are you on oxygen therapy too to help improve your 6 minute walk saturations or is this an improvement they are seeing after using the cpap therapy ? Just curious about what is working for you! Keep up the positive spirit 🙂
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Hi, I am Amy, 49 years old. I was diagnosed a year ago. I am category 2…. 12/12/2012 I had afib and was scheduled for an ablation. During the ablation they compromised my pulmonary veins as well as other issues. Eventually, I was diagnosed Pulmonary Vein Stenosis and was sent to the Mayo Clinic to open 2 of my pulmonary veins with stents. Since then, I continued with shortness of breath and lung pain and last year I was diagnosed with PAH. I am on Adcirca and Opsomit right now as well as other heart meds. I don’t really know any of my “stats” but I feel very lucky that I do not require oxygen. I am trying to eat healthier and walk / exercise as much as I can to hopefully stay at the level I am now. Is there anyone out there with a similar story? I sure would love to know how things are for you. I feel like such an anomaly … I get the SOB and the pain in my lungs and no one knows what to do! Doc in the boxes always send me to the ER and that is so expensive! Anyway … just curious. Thanks.
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Hi Amy.
Thanks for sharing your story with us! I’m sorry that happened to you when you were having your ablation. That must have been so hard to come out of that with even more going on that you weren’t prepared for. From experience, I have shortness of breath and pain with breathing because my oxygen levels drop pretty low. If your shortness of breath is worse with activity I would suggest having the doctors check your pulse ox when you are up and moving. Try to keep a journal of when those symptoms happen for you and sometimes you may see a pattern such as if it happens with activity, if you’re in a certain position, weather, etc. Shortness of breath and pain is def a common symptom for those of us with PH. Do you see a specialist that you could bring up these symptoms to instead of going to the ER to get evaluated?
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Good idea about journaling to find patterns. I do have a specialist and when I experience these symptoms, she always advises me to go to my primary care, who gives me a steroid and sometimes antibiotic. Typically these symptoms come whenever I get a cold and then goes to my chest and it is bronchitis with additional pain and SOB; however, this past time it was just the pain and SOB with no cold or anything and it was the same drill, go to PCP or ER (if on the weekend – which it was). Anyway, babbling here… I just haven’t been bouncing back this time…. I am definitely not complaining, just curious. I know I am lucky to be as healthy as I am.
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Hey Amy,
I understand completely! It’s hard to feel like you’re not getting answers and are just getting sent to different doctors. If it’s harder for you to bounce back, definitely keep addressing it. Have you had testing like a heart cath, pulmonary function test, 6 minute walk, echo? What do they do for you when you go into the ER with this? Are your oxygen levels low when this is happening?
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Oh yes I have done all of those tests numerous times. Oxygen levels always appear pretty good. I have an appointment coming up with the specialist I really need to address it with her. I think a lot of it could be coming more from the pulmonary vein stenosis which can’t be measured by oxygen levels but by cardiac MRI and VQ scan. Thanks for being here!!
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Glad you’re staying on top of it, @amy-carle-babcock! It’s such a challenge when the responsibility falls on us to track and report our symptoms. I hope you can get some results that reflect how you feel.
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Hello, I feel like a bit of an intruder to your site as I have not seen any signs of other participants from the UK. However I hope that I’m allowed as the forums are so helpful and interesting and I certainly qualify as far as my PH goes. So I’ll introduce myself. I am nearly seventy years old ( strangely I’m still 25 in my head !) and have three adult children, two step-daughters (adult) and five grandchildren. I am married to a retired general medical practitioner and I was a counsellor/ psychotherapist working with terminally ill people, their families and carers in a hospice. I was diagnosed with Parkinson’s Disease in 2007 and have extensive osteo-arthritis and spinal scoliosis and need a wheel chair or mobility scooter outside the house. It was then discovered by accident that I have a blood condition known as MGUS, which can be a precursor of myeloma and needs to be monitored regularly and then the terrible pains I was having in my shoulders and arms were eventually found to be polymyalgia rheumatica ! In 2012 I had an emergency hip replacement for avascular necrosis of the head of femur and ended up in ITU with pneumonia and renal failure. Shall I go on or are you wondering when I will get to the point ? Well it’s coming ! We moved house to be nearer family and the move was traumatic and very hard work ( you accumulate a lot of “stuff” in a lifetime !) A couple of months later I had a stroke and I remember on being told my first thought was ” Oh no, haven’t I got enough already ? ! But apparently not – My breathlessness was noticed and tests showed numerous pulmonary emboli. I was transferred a couple of hundred miles to the Royal Papworth Hospital where pulmonary hypertension was diagnosed ,CTEPH to be accurate ( chronic thromboembolic pulmonary hypertension ). I underwent a nine hour pulmonary endarterectomy but unfortunately I was not one of the lucky ones to be cured. So I am now on oxygen most of the day and night and you can imagine the number of tablets I take each day ! But as I always say when a physician looks in horror at the thickness of my medical notes ” I am far worse on paper than I am in real life !” So that is me from UK – hello .
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Hi Lorraine,
you certainly are NOT an intruder at ALL! I love that you are contributing to the forums and connecting with others who “get” what it is that you are going through. Although none of us are the exact same as far as diagnosis and what has caused or contributed to our PH. we all have a lot of symptoms and life experiences in common. Thank you for sharing all about yourself. It certainly is a mouth full to even read about your conditions. I can’t even imagine all the times you have had to explain them over and over again to different doctors. That always gets exhausting for me too with a history a mile long for them to look over. I’m sure you are always teaching them something new and helping others with similar conditions. You seem so positive for everything that you are going through, even though I’m sure you have your days where you feel it is hard to stay positive and upbeat (don’t worry, we all get like that from time to time). I’m glad that you are part of the forums and I can’t wait to connect with you more and hear all you have to say!
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Hi Brittany, thank you for your kind welcome and encouraging words. I did not expect such a personal response to my writings ( although I didn’t actually know what to expect as I haven’t contributed to a forum before) but I do appreciate it and already feel a definite bond with you, Kathleen and the other participants. I have been reading the contributions under the “Introduction” heading and a few things immediately struck me. Firstly how diverse are the paths which lead people to PH. Everyone seems to have a different story to tell and yet we have all ended up with PH. I had thought that I was quite unusual to have multiple unrelated medical diagnoses, but on reading the letters I can see that I most certainly am not !! Secondly ( and most strikingly,) was the young age of so many of the participants. The only other PH patients I have met in the Royal Papworth Hospital were over 50 and I had not realised how it could affect so many people at such a young age. I feel that at least I have lived a longish life, it seems so unfair that you should have this hanging over you. Then that brings me to the last thing I noticed – how upbeat and courageous these young people and indeed most of the other participants are. You are all an inspiration . ( and for those not feeling able to cope or be upbeat at the moment there is always someone with a supportive and kind word and advice if needed) I am so pleased I found this forum, It really makes life seem easier ! Thank you.
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Lorraine,
your response and responses like yours make what we do here so rewarding. It feels great to encourage others while also getting great feedback and encouragement in return ! I truly have my days where I feel down, and even depressed at times. I feel like a lot of my drive to keep fighting and pushing forward is so hopefully the future generations won’t have to deal with this and won’t have a delay in diagnosis as many of us have. Thank you for your contributions and for making this a positive space 🙂
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Hi, everybody. My name is Valeria, I’m 26. I hope you’ll forgive me for not being from the States and not even from the UK and not speaking English well. I have long hesitated to write.
In our country, pulmonary hypertension is treated as something strange, incomprehensible and unpleasant. I am very surprised how much each of you has learned about your illness, how much your doctors know. All I can say about myself – “congenital heart disease”, “high pulmonary hypertension”, “pressure in the lungs more than normal three times”. The degree of hypertension is like 2, but I’m not sure. Medical reports are very stingy, and my doctors don’t explain much. They only suggest to live positively, to control weight and take revatio. That’s why I can’t say anything about my illness, besides I walk slowly, climb the stairs with difficulty, have irretrievably deteriorating vision. I read that a side effect of sildenafil could be a migraine that I’m getting more and more. I think it’s playing with my vision. I also sometimes think that I have dyslexia (although it is, of course, I have already invented it), when I can’t focus on the text that I read. You write so much about oxygen, but I’ve never even heard of it before. The doctors never told me about it, and it’s impossible to get it in my city. I am grateful to Brittany, who shared her story about migraine (I realized I wasn’t the only one), and thanks to that story I found this forum. It’s great that you are not silent, and discuss this evil disease, share their stories. I also admire your courage, how difficult it is to pass all these hospitals, tests, medications. I was given a disability (to get revatio) and I’ve endured ridicule of the therapist for six years, which could prolong or not to prolong it. I don’t want to tell about it to people around because they: a) will consider me pathetic, b) will shrug shoulders and will forget.
I work almost full time and there are always people around. It gives me the opportunity to forget about myself and do something useful. I love books, movies, painting.
Thank you for reading all this, and thank you for telling about yourself. Sometimes it’s so important for us to be heard.-
Hi Valerie,
I am so glad that you were able to relate to the post about migraines that I wrote and that it helped direct you to the forums. You are right ! Each of us has our own unique story but we are all somehow connected with many of our symptoms and side effects that we experience with this condition (on top of other conditions). I am around the same age as you (I am 26). I also have congenital heart disease. I am sorry that you are experiencing that type of treatment from doctors and therapists where you are from and I wish there was a way for you to get more support other than doctors just telling you to “keep a positive attitude”. Positivity goes a long way, but as we all know, it certainly isn’t going to cure us of this disease and the side effects we are experiencing. I also struggle with reading comprehension and it has been worse. Do your doctors measure your oxygen levels to see if it is low? For me, this makes my concentration a lot worse when my oxygen levels are low. There are pulse oximeters that people are able to buy online too. Anything below 89% oxygen is usually too low. I’m not sure if there was way for you to test that yourself and buy the pulse oximeter if your doctors don’t do this. If you don’t mind me asking, where are you from? I was also born with congenital heart defects, have you had surgery on your defects and what heart defects were you born with ? Feel free to message us and chat on the forums ANY TIME. This is a great place for support and to hear back from those who understand what it’s like trying to live with this.-
Hello, Brittany. Thank you for your kind words!
I’m from a small Russian town. It is difficult to find even a good therapist, not to mention a cardiologist or pulmonologist.
I have as much as you have a congenital heart defect. Previously, they wrote “mitral valve prolapse”, now they write “aorto-pulmonary septum defect”. On x-ray diagnose “congenital heart disease with increased pulmonary blood flow”. I do not know if the joke about the illegible handwriting of doctors is popular with you … But we have it real – nothing is clear in the records. When I ask, I get a short answer. The ultrasound doctor lightly says, “you know, you can’t do any physical activity, in any case, you can not give birth ” and on the weekend he goes Windsurfing. The cardiologist looks at me pitifully, says, “How are you? Nothing? Well, you’re doing well. You work, well done” and flies on vacation across the ocean. I understand that they do not understand anything about my situation, although they have an idea about the physiology of the disease. But they are the kindest of all the doctors I meet. About oxygen, I would really like to ask them, maybe I will.
As for the operation – I have never done it and when I was finally diagnosed (I was already 18 years old), I was told that it is impossible to operate. Someone said “Well, if only in Israel, but even their best doctors are unlikely to undertake”.
I come to the conclusion that no one around understands what is happening to me, even doctors, and even more so ordinary people. Such manifestations of pulmonary hypertension as shortness of breath can be tolerated. But side symptoms and effects like migraines, fog in the head, deteriorating vision, the ban on simple physical education lead to depression. Depression worsens these symptoms, there is a vicious circle. Sometimes I feel like I’m fine when I sit and draw and I don’t feel bad. But then suddenly there are colored spots in front of my eyes, I remember and start to cry. I am ashamed to write this, because I learned here, what are the terrible manifestations of hypertension. But I want so much that I and you all have the opportunity to live a more intense and active life! I am very surprised how some women here write that they are mothers of several children and even grandmothers! It’s a miracle they could do it! It brings faith in the best. I hope I did not write very confusing and my translator will not fail. -
Hi Valerie,
I can understand what you are saying. I am sorry that they don’t have more support where you are from. I wish you were able to go somewhere where you could get a second opinion. I know that it is difficult with congenital heart disease that hasn’t been repaired, because there isn’t much they can do to reverse things when it goes untreated for that long. It is as if our bodies adapt to the way we are and changing it sometimes causes even more of a strain on the heart.I also deal with depression from my illnesses and find it hard some days, especially on the days when I am physically not feeling well. I do some activity and am thankful for my part time job but sometimes it feels like I can’t even keep up with that. It is hard to feel defeated and run down. The brain fog is also hard to manage and the spots that you are seeing in front of your face are scary, especially when it comes out of nowhere. Managing all those symptoms, trying to keep a good attitude, and taking care of yourself, seems impossible sometimes.
I’m glad that you found this forum. I hope you know that you can always share your thoughts here. I know others will be able to relate to how you’re feeling and what your’e going through.
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Brittany, thank you so much for your response! It’s the first time I meet someone who understands me that way (but, of course, it’s a pity that it happened). I’m very sorry for you. Wish you a lot of strength and patience!
Medical terms difficult for the translator, but some of the stories on the forum helped me. Thanks, what you said about the pulse oximeter, I’m trying to find this device. My colleague during pregnancy asked friends to bring portable oxygen cans from big cities. I’ll try to find the same ones.
I think I write in wrong topic now. Only needed to introduce myself, and I wrote a treatise. -
Hi Valerie,
I’m glad I can be someone who understands what it is that you’re going through. Even though we all have different stories (as you can probably tell from reading what everyone wrote in the introduction) we are still all connected in many ways. I know you will get a lot of benefit from using the forums and chatting with others who understand. You can look up the device online and check for places that sell them. Pharmacies sell them near me, you can even ask your doctor’s office where you can purchase one of these. it might be helpful to monitor some of your symptoms.
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Hello, I’m Stephannie Baker and I am a research scientist. I love reading and travelling and I am here to learn.
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