Thank you all for your lovely replies to my original post. I saw the cardiologist today and he says he thinks my PH is primarily caused by my asthma/COPD. He didn't put me on any medications at this stage. He wants an ultra sound done on my heart in September [[2 months away!] to compare to my last ultra sound that was done 2 years ago when I was in hospital with the flu and pneumonia. He doesn't seem to think I need medications as yet, but, and this is the part I'm freaking out about, he said my prognosis didn't look good. I tried to push him in to telling me how many years I had left, but he said he couldn't give a number, that there were too many factors/variables involved. He said it's not as bad if I was in another "WHO" category, but I am absolutely beside myself.....has anyone been told that there prognosis isn't good, but went on to live for many years? Please help me if you can
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puddy68
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Hello, i can understand snd why you feel so worried, this cardio person sounds a bit lacking in bedside manner! The fact that there doesn't seem to be any urgency sounds promising to me. I can only encourage you to not worry, maybe when you receive your letter from him you can go to see your GP for clarification? I am sorry you are in thus situation and wish you well, Clare x
Thank you so much for reaching out to me, Clare. I really appreciate it. Unfortunately my GP will take the specialist's letter at face value, although she may surprise me. Thanks so much once again, Clare. God Bless.
Hi puddy, l do wish doctors wouldn’t do that, give with one hand and take with the other. Things sound pretty hopeful to me so don’t let his insensitivity get you down. You could live for many years because medications etc. are changing all the time.
See how things are in September and please try not to worry too much. Take care xxx
What a tactless consultant. Clare's right that the lack of urgency in his reaction seems to indicate that he does not anticipate any sudden, dreadful deterioration. As he says there are many variables, one of which must be your determination to live as well as possible. Obviously do all the things needed to keep you healthy- good food, gentle exercise and so on, but award yourself as many treats as possible- chocolate, walks in the country, whatever floats your boat. How about taking that husband of yours out for a nice meal?
PS. there are people on this site who have lived well beyond their supposed sell by date. I hope some of them will be along soon to tell you that medical science isn't always right. best wishes. xxx
Thank you so much for your uplifting message, Alberta56. And thank you for your sensible advice, It gives me so much hope that there are people on this site who have lived well beyond their supposed sell by date, and if you're reading this, please, please contact me if you have the time. I know I sound very weak willed, but the thought of dying early and leaving my son and husband is just immobilizing me with panic and fear. Thank you also Alberta for your suggestions of rewards....a great idea!
Hi Puddy. Have a good look on yourself. Do you see an expiry date anywhere? No? Well then rest assured the doctor doesn't know for sure either. He is simply going by statistics and what his medical training has told him to say. No-one knows these things. So I would take it with a huge pinch of salt. So many of the members on this forum have been living for many years with various conditions, sometimes multiple! Don't let him drag you down . I believe you have have lot of life left to live and enjoy! Keep your chin up.
Dear puddy68. If only these medics had a course on 'how what you say or omit to say has an enormous affect on your patient's mental well being'. As others have said there are many on this site who live with coexisting severe conditions for years and have very full and long lives . I have a letter to my mother in 1956 when I was six saying that the prognosis for my bronchiectasis was so bad that I would not survive another pneumonia. When I was 12 they told me not to have children and never to go to hot countries. All of which I ignored because my mother insisted I had a normal life alongside managing my condition.I am now 74. In addition to bronch I have dilated cardiomyopathy, AF, osteoporosis. I have 2 children 5 grandchildren, have lived all over the world and am still giving the medics grief as happened recently with 2 OPAT teams who were competing with each other as to why they had ' no capacity' to supervise my home IVs. Which I am doing as I type this.
Occasionally we come up against an empathetic doctor who understands our fears as we try to learn about our conditions, talks to us about the condition and treatment and reassures us that although we have these problems to deal with it is possible to manage them in the long term. They are few and far between however.
I have come not to expect the kind of answers that you are looking for from the doctors who are simply looking at xrays, blood tests, scans etc and intererpreting them in relation to what they have learned in their text books. These text books do not contain those answers.
Why?
Because we are all different. Medical calculations cannot predict how a patient will live with a condition. Quite frankly most medics don't have the time or simply don't care how you feel about it as long as they can write on their computers what treatment you are having. This particular doctor seems to me not to be too concerned about any sudden deterioration but in omitting to say this is simply stoking the boilers of your unnecessary fear.
It is the people on forums like this who are the experts. They have had the diagnoses, suffered the symptoms, taken the drugs and most of all, at one point have felt exactly how you feel now. They have gone on to realise that they can have a full life, bring up their children and everything else. Using medics for the treatments but turning to other patients with the experience for reassurance. There are some wonderful people on this forum who can use their own experience to support you so that you do not get sucked unnecessarily into a whirlpool of despair.
Hi puddy68. wait and see your results - I am going for an echo soon as a follow up to 18 months ago which showed two valves affected,
To answer your question yes I have Cancer with a rotten prognosis at one stage - I have COPD , Heart and Kidney trouble yet they wanted to remove my bladder and give me a stoma, I doubt very much I would have survied and I said no. They had to give me some treatment and it worked insomuch as by cancer is now low grade, It can return but then with a tube they can remove it.
Your consultant does not think you need medication yet - What for COPD or Heart?
Wait until you have had your ultra scan then see the result of that, don't even think about prognosis until you know what is what - it's hard but doctors are not good with those question, I think he wants to wait and see.
My doctor as I said is sending me for an echo, will probably be in a couple of months, she would not know anything until she has seen the results,
It looks better to me than you think - Wait and don't worry, see what the scans bring, that's how I get by. I think you doctor is lacking in tact though,
Don't " try pushing dr into telling u how many yrs u have left" if u really don't want to know! U know you best.while one personal not be proactive in looking after themselves,another is, and that makes a big difference in life.eat well,do yr healthcare,remain active all help to keep us going.he doesn't sound concerned re diagnosis or treatment for now so plod on as u are xxxx
Hi, i just wanted to let you know that my specialist has a tendency to jump the gun and the first time it happened I was really stressed. Eventually it turned out to be nothing and I eventually started to feel better. The doctor could give no reason for my problem. I would suggest you ask the doctor not to speculate and just give you real details after you've had tests.So all I'm trying to say is until you have confirmation of the problem or situation try not to worry. I know it's easier said than done.
1. Your scan is two months away. Not urgent. If it were urgent you would be having it this week.
2. You don’t need medication at this stage. Not urgent. If it were, you’d be on tablets right now.
In August 2021 I was diagnosed with ILD, pulmonary hypertension and sleep apnoea and spent three weeks in hospital while they worked out what was wrong and how to treat me. Interestingly, my PH consultant said the outlook wasn’t great. (Maybe it’s in their training?!). However, he prescribed Sildenafil three times a day. Getting my ILD under control has helped enormously and my last two echocardiograms have shown a great improvement. I have echocardiograms every 6 months (as well as lung function tests every 6 months).
Chin up! I know it’s easy to say try not to worry, but all that time and energy spent on worrying over something you cannot control, should be spent on things you can control - enjoying simple things like a sunny day, a pretty garden, having coffee with a friend, playing a game with your son.
Hi, I can understand your concerns. My (useless) respiratory consultant said I had PH, which sent me to visit Dr Google - not a good idea! In the end the problem was a hole in my heart and bronchiectasis (which the consultant had totally missed). If your next US is in 2 months he obviously does not think it is urgent. Good luck
hi Puddy, its terrible the anxiety these off the cuff statements can cause, and what does he mean about being in a different WHO category. Double Dutch and lacking in empathy. It sounds like when you have your further heart scan in September there will be a comparison to be made from the last one and so more information available. I wonder if you will see another person or the same doctor. It would be good if you could take someone with you who can listen to what is being said and support you. You were brave to ask how long you have got, maybe instead, turn it around and ask what more you can do to carry on living life to the full. Please try not to worry and as others have mentioned - do some lovely things to make you feel better. thinking of you, Sally 😊 x
It’s pretty mean of a consultant to say such a thing and leave you hanging for put to a year.
I’d be inclined to contact his secretary and request a more urgent referral for your ultra sound (definitely an ultrasound 🤔?). highlighting what he has said about prognosis not looking good. Expand on waiting so long is stressing you a lot, not helping your condition. Importantly you need a response or you won’t know if any waiting time has changed.
If your referral is not speeded up it’s surely worth you considering private just for the scan . I have never hear of an ultra sound on the heart but what do I know 😊. If you do make sure it includes the full report returned to you and gp and your consultant.
Try not to worry. The well-known doctor,(now retired) Dr Vernon Coleman, who has written dozens of books and made dozens of videos, has said that most dire predictions made by doctors are not true nor accurate. They are wrong more often than they are right.
Dr Coleman, when he was in his thirties, was told he had 6 weeks to live (or was it months, I can't remember). He is now well into his 70s and still writing books and making videos.
A good attitude will help you.! When my doctor, a young lady, told me I basically had emphysema some years ago ,she looked TERRIFIED (please note -I am NOT exaggerating she really DID look terrified). I also felt tempted to consul her!! It was scary but I had to suppress a smile!!!
Be as positive as you can. Medicine is progressing all the time. You'll be OK.
I am far from an expert on this subject matter, but the past research I've done shows different groups for Pulmonary Hypertension:
1) PAH - Pulmonary Arterial Hypertension - This group is more idiopathic as the cause or sometimes genetic or drug induced. There are drugs that can help folks in this group.
2) Group 2 - PH due to left sided heart disease. This is the most common reason for PH. Left sided heart disease can be caused by numerous reasons, but this can lead to PH due to higher pressures and fluid back up in the lungs. This in turn causes the right side of the heart to work harder and ultimately can lead to right sided heart failure.
3) Group 3 - PH due to lung disease - COPD, Emphysema, Interstitial restrictive lung disease, sleep apnea, etc. can eventually lead to a PH condition.
4) Group 4 - PH due to Pulmonary Embolism - This is the only group beside group 1 that has some level of treatment. Remove the embolism and PH should improve.
Most times addressing root cause should help with PH. It sounds like you're in Group 3. If the lung disease can be treated and maintained, it will very likely improve the PH or at least stabilize the PH. I would not view your situation as hopeless at all.
Well you certainly saw a doctor lacking in empathy. To me what he said sounds promising. Remember what others have said/ no one really knows our expiry day Take care. X
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Dare I say, I felt a bit less anxious today. (It's another long 'un.)
re check up
Diagnosed a year, feel worse today than ever
lung more holey than righteous
