My husband was diagnosed with Aortic Stenosis in 2019 and his valve was replaced by TAVI procedure in 2020. He also had a pacemaker fitted a few weeks prior to the Tavi.
He has had regular pacemaker checks but has not seen a cardiologist since the TAVI - just a phone call asking if he had any issues.
At first, he was monitored by the community heart failure nurses and when he was referred back to the GP, the nurse assured us that as HF is a chronic condition, he would remain on their list as a patient and we could call them for advice at any time. Wrong! It is impossible to locate them or get hold of them by phone or email!
Last year, due to my husband becoming increasingly breathless, I managed to persuade him to have a check up with the GP. His answer was that my husband could do with losing some weight but his heart and lungs were fine.
My husband is becoming more breathless and wheezy with activity such as weeding the garden, or even going to the loo!
He is 82 so says he expects to be slowing down, but I have noticed quite a change in him recently, including a reluctance to do as much as he used to, even with his much loved motor clubs. It does seem to be physical, rather than depression (for example) as he pushes himself to do what he can. He is still able to do the 6 minute walk to the local shop much faster than I can (but I am a very slow walker), but needs lots of rests now when completing tasks at home that he was fine with until recently.
I'm wondering if others in a similar position have regular check ups. Should he be pushing for a cardio referral from the GP?
I don't want to cause him anxiety by nagging him unnecessarily, so your thoughts would be appreciated.
xx Moy
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MoyB
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I would be trying to speak to the Cardiology secretary as he could have been lost to follow up or asking your GP to write a letter to them and basically giving them a boot up the arse to get him and appointment
I thought it was just me I've got heart failere icd fitted was under heart failere nurses than sent back under doctors I've seen doctor once in 4 yrs not gd
Hi MoyB, I think you should initially telephone your consultant's secretary, and if it's an answer machine leave a message asking for a call back. If unsuccessful, telephone the cardiac nurse. I see my cardiac nurse every six months who is amazing, however I haven't seen my consultant in well over a year. When you are not feeling too great and you don't feel looked after, the situation seems 100% worse. Wishing you well going forward.
My private heart surgeon offered annual check-ups costing £700 for 30 minutes plus an ECG; the journey to his hospital was an awkward one, so I had my care transferred to my local NHS hospital that had diagnosed my stenosis. I had a check-up in February that included a more thorough ECG than the private one. The hospital said I'll have another check-up next February.
I can identify with your last paragraph but two, as I'm nudging 80 and have not had so much energy as before my TAVI. My surgeon seized on one particular blood value (that appeared to me to be median) and referred me to a private gastroenterologist, who could find no reasons for the fatigue, and by then I was awaiting an appointment with an NHS haematologist, who diagnosed slight anaemia caused by the new valve (something that the valve manufacturer had told me was a possibility); her NHS cardiologist colleague disagreed! I also had a remote consultation with an ex-NHS haematologist in Poland and a private haematologist, who wondered why his NHS colleagues (with whom he used to work) had given me an iron infusion in May.
Curiously I've never once been asked if I'd had Covid (I hadn't) and so might have Long Covid, and no one's mentioned that my medication (Clopidogrel and Ramipril) might be the reason for a low red-blood-cell count, as suggested by authoritative websites.
I've had several periods of deep fatigue, but in between I too push myself physically - last Sunday I extended a three-hour walk by two hours because I felt good. The private haematologist did write to my GP: "I have every admiration for a gentleman of his age to remain so active and I have recommended that he should continue with his determined way of maintaining fitness although I did suggest to him not to push his body beyond sensible limits."
You actually walked for 5 hours straight. Not sure that as a 79yr old this is a wise thing to do. I would get some advice before doing extreme events.😱
In my reports back to my doctors etc, I gauge my fitness by the number of hours walked. In January I wore a Holter heart monitor for 48 hours and made a point of doing a four-hour walk that included a long hill,which I recorded, with the time, on my log sheet, together with another test of a very personal nature. The cardiologist noted very short periods of increased heart rate but, annoying, did not say if these occurred when I I was physically stressing myself.
On the assumption that your husband has not been discharged back to the care of the GP (your medical records will show this), I suggest you write a letter to the cardiologist at the hospital, copy sent to your GP, stating the circumstances. That is then seen as a formal approach rather than phone calls or even emails. And if you do not get a reply within a reasonable time you should enlist the help of the hospital PALS team to chase things up. However if he has been discharged back to the GP it is the GP who must make the request for a cardiology consultation.
The Community Heart Failure Team referred my husband back to the GP. To my knowledge, he has not ever received a formal notification from Cardiology that he has been referred back to the GP.
However, the nurse definitely told us that they HF nurses would be available to my husband for the rest of his life as HF does not go away. I was told that even after being referred back to the GP, we would be able to contact them - either my husband, or myself were welcome to phone.
Unfortunately, they have moved their location to the local hospital and fail to respond to messages left on their answerphone! We have tried for over a year to get hold of them and even the pacemaker technicians have emailed them. My husband was seen by a GP during that time. The GP we saw was fine, but had never met my husband before and did a cursory examination, pronouncing him fit as far as his lungs and heart were concerned but advising him to lose weight. Fair comment, but no 'tweaks' made to any of his meds and no blood test done. He is getting more leg swelling again, but it is not extreme so not requiring an urgent appointment. A conversation with one of the HF nurses or a cardiologist would put our minds at rest far more than seeing a random GP, pleasant though he was, whose speciality is not necessarily heart failure.
I'll admit that I am far more concerned about this than my husband is. He is of the mindset that if it ain't broke, don't fix it. Meanwhile, I hear him huffing and puffing and wheezing when he gets ready for bed which is not something he's done since before his TAVI.
Thank you for your response. I think I'll try and encourage him to at least ask for a full blood test as that should show up any deficiencies or concerns.
It’s just a thought, but, could it be in the reorganisation that the phone number and email became dominant. I had a similar situation recently and the number on the website was actually dormant’ still rang out, never monitored
The relevant email was also not being monitored. I telephoned the main switchboard to check the details and was given the ‘new’ contact info
I have thought about that as it happened when the phlebotomy dept changed their number and it kept ringing out. However, I have tried to get through via the main switchboard and just get the answerphone. Messages left have not been responded to. It's very frustrating.
Why should care be the burden of your GP and not the cardiologist or cardiac nurse.I recently saw my GP she told me that more and more specialists expect her and her fellow doctors to look after all different conditions that she and they were not qualified to do and consequently they were feeling under a lot of pressure to know snd treat conditions they were not trained for.
I'm in New Zealand but my doctor is Scottish so is it the same in your country certainly sounds like it
From what you have said, you are now most likely back with your GP, and if that the case, and in spite of what you were told (and probably not helped by the reorganization) the heart failure team officially have no reason or formal obligation to provide care and advice to your husband, although it is not good that they are not returning your calls. So it looks like Plan B as in enlisting the help of the GP to formally re-establish links with the Heart Failure team if you feel it necessary, and if you do, do not take no for an answer, since that is what they are there for. Hope things work out for you both.
Thank you for your helpful reply. I'm due to see our own GP on Tuesday and may just pop the question to her then! (She is very good and doesn't mind an occasional diversion from the matter in hand!)
I get an annual check up at my large local hospital. Two scans and a chat about the results and I am reassured. This cardiology department have really sorted things. Cardiologist is on hand if there are any issues, but so far not needed.
And so far they have seen me on time. Now that’s how check ups should work !
I think that's what my husband and I both thought would happen for him - regular check ups, though not necessarily frequent. At his last but one pacemaker check, the technician said she thought he might need a different pacemaker and she would discuss it with the cardiologist. Nothing has been mentioned since and at his last pacemaker check I asked about it and was told there was 'nothing on the notes'.
I feel my hands are a bit tied as until my husband agrees that he needs to see someone, it's hard to push for it. He would be very happy to simply have a chat with someone who knows what they're talking about every so often, but doesn't want to get too involved with lots of tests etc.
My husband is generally very trusting that people will do their job efficiently, but is gradually beginning to appreciate that with the NHS under such strain these days, it's often the case that people fall through the cracks and we need to be proactive to ensure we are properly treated.
Example: I kept waiting for my appointment to have a Zoledronate infusion. I rang the unit and they didn't have me down. I contacted the musculoskeletal team secretary and she found out that although the notes said I should have an annual infusion, the consultant had neglected to refer me to the unit. Two weeks later, I was invited for my infusion and have already been invited for the next one in September this year.
Medical staff are only human and mistakes do happen!
I have been seen by nurses from my local cardiac team every few months since my cardiac arrest in February last year. They want to discharge me from their care, which means I wont have scheduled appointments and will lose access to the app that they use for remote monitoring. But they have made it very clear that I can call them whenever I need to.
hi. I get an annual telephone call from the cardiology nurse and an echo every other year. I was discharged by the heart failure team as soon as I was stabilised on meds. I rang my cardiologists secretary and she said that I'm no longer one of his patients so I suppose I'm back with my GP who I haven't seen for years despite 2 ohs, heart failure, stroke, endocarditis, cardioversion etc etc within the last 3 years. I do get an annual long term condition check with a health assistant at my gp surgery but tbh it's only a blood test, weight and blood pressure check. I feel a bit out on a limb but I think this is the standard of care for the nhs in my area. Fortunately my daughter is a nurse prac and is very quick to spot any problems. I'd be completely lost without her but that's more about my health anxiety rather than needing ongoing cardiology input. If your hubby is feeling worse I would push for a review from the GP who can refer him back to cardiology. I wish you well.
In the first instance contact the cardiology secretary to confirm whether your husband remains under the care of the hospital trust/community HF nurses.
If they say he has been discharged from the service. Then go back to your GP surgery and ask to be seen by a different doctor for a second opinion. And when the appointment is made ask for a longer appointment so you don’t feel rushed or under pressure. (I did this with my dad before he was diagnosed with HF because we was not happy with the GP’s response when he went with his HF symptoms) and able to cover all issues your husband has. Then ask to be referred to cardiology.
It may also be worth contacting PALs for the trust your husband’s care was before to get up to speed with the community heart nurses clinic and whether there’s been any updates or changes.
My 84 year old dad was diagnosed with heart Failiure in October 2024.
He previously had a heart attack in 1999 and diagnosed with atrial fibrillation in 2014. Of which was controlled with medication.
His cardiologist referred him to our local integrated heart failure clinic for “medication optimization” because the medication he’s was on (for his other heart conditions) was what they’d usually prescribe to heart failure patients.
He has appointments every 3 to 4 weeks while they’ve amended his medication. With the HF providing a phone number that they can be reached through the week.
Much like your husband my dad hates a fuss and has played down symptoms as down to age and getting on a bit. Communication is key and I make it clear that heart failure symptoms are not normal. To which he now knows so doesn’t get annoyed at me fussing.
As your husband's cardiologist has discharged him into the care of his GP he needs to ask his GP for a referral to the cardiology department. He will have to wait for possibly a few months for the appointment . I know I did.
Does he have regular blood tests via his GP and medication review ? If not he needs to ask for both. I know men are stubborn about things like this my husband was so I did nag him. In the end I made appointments for him and told him he would be sleeping on the sofa if he didn't go and no sex . But this was long time ago as he died in 2004 aged 47 but it worked .
Men think they have to be strong. I call it the silver back gorilla attitude. I know my husband had it ,my dad did ,brother has it and all the men in my family . But woman are the stronger sex we have to be to put up with our loved ones . But love is worth it .
Stubborn is right! 'Do you have a pain?' 'Oh, no.' (After grunting and groaning all day! Lol!)
Thanks for your reply. I'd love to see my husband's face if I said, 'No sex until you see the doctor.' His reply would probably be, 'Sex? What's that?' Well, he IS 82 now.
I had AVR, CABG and 2xPCI getting on for two years ago. I was told in November by my GP that there are no appointments available for my ‘long term condition’ for the foreseeable future.
I am led to believe my local cardiology unit at hospital will see me within the next 12 months for an echo. Other than that I’m very much being left on my own. They have not formally discharged me to my GP so that I can get back in the system by ringing them if I have any issues.
I’m 72, fit for my age but do tire easily at times. Oh, apart from blood thinners and a fib treatment, I’m still on the same medication as at discharge from hospital.
I imagine the nurses from the BHF helpline will be getting more and more calls from people who feel abandoned by the system. At least you are not yet formally discharged so can get back to them if you need to.
As I said in a previous reply, sometimes you just need a chat with someone who knows what they're talking about, but they also need to have access to your medical history if they are going to be able to properly advise.
I would use the system, if he is getting really bad I would call an ambulance to get him check over in ED. To make sure nothing else is going on and he might need a medication change.
I won't hesitate to call 999 if I feel we have an urgent situation, but what I would really like is for him to have a heart related check up by someone who knows what they're doing and if we could get hold of the HF nurses, I'm sure a 5 minute conversation would be enough.
From reading other replies, it doesn't sound entirely unusual for someone to be cast adrift and left to get on with things, but we both think it's very strange that there was never any follow up from the cardiology team after the TAVI procedure apart from a very quick phone call a couple of weeks after the op, asking if my husband had any problems.
His aortic stenosis left him with an enlarged right ventricle which he was told would not change and meant he has heart failure for life.
I know he won't go on for ever, but I really want him to be living his best life for as long as he can, and not be breathless if something can be done about it.
Good morning. If you are being ignored by the HF nurses I would definitely contact PALS at the hospital who usually seem to be able to give departments a nudge!! Follow up treatment with HF seems to really vary with some people being referred back to their GPs or long term illness teams, some still have consultant appointments and some have HF nurses to contact. If your husband has a build up of fluid that in itself could be making him breathless so needs checking. I know one of the indicators of worsening HF can be fluid retention and I have always been told to contact the HF nurses if that happens. We obviously can't diagnose on the forum but we can tell of our own experiences . Personally I am able to contact the hospitals cardiac/heart failure clinic where the HF nurses are based and it's also where consultant appointments are held. They gave me all necessary contact numbers along with exercise and general HF care advice, HF diet suggestions ,symptom checker...all sorts of information so I guess I am very fortunate. It must be so frustrating for you but I think in the current climate you need to shout loud to get heard and if I had no joy from my GP or HF team I would be straight onto PALS at the hospital. Good luck and I hope your husband gets his checks. Xx
chase it up if you have concerns, ring, write or contact PALs.
Although I admit I have almost given up trying to see my team. Three years discharged after one week stay due to heart failure with dilated cardiomyopathy I was told I would see consultant in three months face to face … only had two brief telephone calls since always with promise of face to face in a few months - which hasn’t happened.
After asking ++ I had two sessions with heart failure nurse who only focused on medication- not on life style which I was asking for.
GP gave me results of MRI and echo. Almost three years of asking I managed to get on a rehab course ( brilliant course which has been a real life changer) - it was facilitated by a lady doing a survey! . Had one echo in that time. I feel let down by secondary care- sharp contrast to my NHS breast cancer and ENT at same hospital follow up is fantastic
Without the support of my GP, pumping marvellous and BHF I would have totally given up.
Perhaps I should follow my advice and phone, write and contact PALs once again !
Not heart failure, but as I have a congenital heart problem I have a phone number for the CHD nurses at the Liverpool Heart & Chest Hopsital where I am a patient. Post atrial septal defect repair I had a follow up at 6 week, then 1 year and the consultant said the next one is 3 years as I am doing so well. I'd contact PAL's at the hospital and ask them to check if your husband has slipped through the net.
Hi just to add to the discussion, I had an ablation 18 months ago which only worked for 6 months, since then I have had no follow up at all. Haven’t seen the consultant since that day, seems cardiology follow up is none existent. I do have some good days, and days plagued by ectopics, sleep almost impossible during bad days. Hard to cope sometimes.
I had a very similar situation as yourself. Through desperation I contacted PALS. They are connected with the hospital your husband is under. They will help you by giving you the advice you need. It turned out my notes had got misplaced🤔. No nagging required😉. 🤗
Sorry to hear that your husband is having such a difficult time. I have hed a pacemaker fitted, undergone ablation for SVT and am now due (later this year) for a AV replacement. Since December my physical abilities had severely declined, out of breath and not able to do much or walk very far, this lead to me seeing my GP who carried out blood tests. The results were all normal apart from my Vitamin B12 which was extremely low. I had 6 B12 injections over a 2 week period. 6 weeks on, I can only describe the difference as amazing, am back to a position I was in over 2 years ago. Apparently B12 decreases with age (I am 66) and also I take medication that prevents absorbtion of B12 in the stomach. Not sure if this insight will be of any use to you however I felt I should pass on my experience. Best wishes.
Your concerns about your husband's health are valid and warrant further investigation. Here's a structured approach to address his situation:
Key Considerations:
Post-TAVI Monitoring:
Patients with aortic stenosis post-TAVI require regular cardiology follow-up (e.g., annual echocardiograms) to assess valve function and cardiac health. The absence of cardiologist reviews since 2020 is a gap that needs addressing.
Pacemaker checks are critical, but they don’t evaluate valve function or overall heart failure status.
Worsening Symptoms:
Increased breathlessness and wheezing could signal:
Chest X-ray or pulmonary function tests if COPD is suspected.
Cardiology Referral:
Key tests to advocate for:
Echocardiogram: Assess TAVI valve function and ejection fraction.
Pacemaker interrogation: Check for arrhythmias or device issues.
6-minute walk test or stress test: Objectively evaluate functional capacity.
Symptom Tracking:
Keep a diary detailing:
Activities that trigger breathlessness (e.g., walking, bending).
Frequency of rest breaks, fatigue levels, and any swelling (legs/abdomen).
If the GP hesitates, politely insist: “Given his complex cardiac history, we’d feel more comfortable with a specialist evaluation.”
In the UK, you can request a second GP opinion or escalate via the practice manager if needed.
Heart failure is dynamic: Even stable chronic cases need periodic reassessment. Symptoms like breathlessness often respond well to adjusted medications (e.g., diuretics, beta-blockers).
Reversible causes: Anemia, thyroid issues, or electrolyte imbalances can mimic heart failure and are easily treatable.
Valve longevity: While TAVI valves are durable, early detection of dysfunction improves outcomes.
Reassure your husband that proactive care can enhance his quality of life. Frame it as “ensuring he can continue enjoying his motor clubs and gardening,” rather than focusing on illness.
Trust your instincts. His symptoms are not just “slowing down due to age” but a sign to investigate further. Persistence now could prevent emergencies later. If you face barriers, consider contacting the hospital’s TAVI follow-up team directly (if known) or Patient Advice and Liaison Service (PALS) for support.
You’re doing the right thing by advocating for him. 💙
Hi, I had a quadruple bypass and a replacement heart valve, Nov 2021. January 6th 2022 I saw the heart surgeon. It was suppose to be a phone call. I ask to see the surgeon. I have had a couple of blood tests since then. Annual phone call from Chester. I had the operation in Liverpool.
I'm now 78 and was diagnosed with Mitral stenosis in my 20s following a childhood illness of rheumatic fever - apparently quite rare these days. I consider the treatment I've had over this period has been excellent with annual check ups at 2top London hospitals. So eventually consultant advised that the time was right to do heart op and I had both valves replaced back in 2018. Still have annual check ups . One advantage is that I had organic valves replaced which meant I could stop taking warfarin and having blood tests - 3 times a week and just take a tablet once a day. Luckily I worked in the hospital and could pop in and get these done for B12 levels.
In the meantime I was diagnosed with Multiple sclerosis, again since childhood but have been lucky (!) In that I'm not really affected although various problems have increased during last few years, but MS consultant has advised as it has taken so long to develop he is of the view it's not worth intervening
In the last few years I feel I've spent a lot of time having one test or another at the hospital, and now take cabs what with parking by the hospital and MS being a notifiable condition for the DVLA - just waiting to hear back from them. It's costing me a fortune in cab fares.
But would just like to reiterate I feel I've had good treatment over the years and both heart and MS consultants are aware of problems. As another correspondent mentioned I do think women are more resilient and just "carry on ", whether that's a good thing or not I don't know.
I'd be getting another opinion. My husband's breathlessness was ignored because his ECG and other stats were fine. He was eventually found to have a severely leaking mitral valve. (Has since been 'fixed' with mitraclips.)
It sure is. It's a long story but eventually I 'took the bit between my teet' and got him an appointment with a private specialist. Luckily most of his investigations and treatments have been as an inpatient at a private hospital so our private health insurance paid for it. (I'm in Australia where the public health system is good, but in this instance let him down.)
Sadly, I fear our NHS is struggling to cope and stressed teams sometimes miss things. They do their best but the tech systems seem clunky and they can't always flick through and find things that easily. Glad you had the private option and all good now.
Hi Moy, this may be totally unrelated, but I to have Heart Failure, 2018 I had a HA and 2 stents, after which unfortunatly they discovered cancer in my RH Kidney, that was removed all ok but it did mean I had to stop heart meds for it, In recovery I suffered Pneumonia and was in CCU for 5 days. 2 months after that I had another 3 stents fitted. My cardiac consultant said I should feel like a new man after that! However ever since I have been saying to my GPs that I get extremely fatigued and often crash after any exercise, I've been admited to A&E several times now with heart issues but every time I get released and told my heart and lungs are fine. It has recently been diagnosed that I have ME/CFS, probadly instigated by the pneumonia. They say 80% of GPs don't seem to know anything about this condition, and as yet I'm yet to find any of the other 20%! It may be worth your while investiging this for you husband.
All the best wishes for you both. Alan, 75 (years young).
You’ve had so many replies already but your husband should absolutely be monitored regularly with bloods done twice a year to check how his body is coping with the medication, and seeing the cardiologist or a heart failure nurse at least once a year to adjust meds based on symptoms. Please do follow up with the GP and hospital as they should be giving him this care.
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Managing the wait for CABG 
Awaiting diagnosis of Heart Failure
Aaaaaand he's back!
Post Valve Replacement issues
