Confused and frustrated

[Haty]

Hi

I had a triple bypass in Feb and feel bit frustrated. I have not "seen

by anybody. I had phone consultation 7weeks after op. And have had a rehab nurse from local hospital ring me a couple of times. I had a blood test 2weeks ago as she was shocked none had been done since leaving hospital. But no ecg or xray , no one has seen my scar and nearly everything I've said when asked how I feel gets the same reply. Oh that's normal or that's very common after major surgery. It has been a difficult time with unexpected 5weeks in hospital after going in for an angiogram, immeadiatly kept in ,a triple bypass and lockdown! The whole experience has been unsettling. All my medication was changed and I hope it's ok as I'm still here. But it is worrying that after such a traumatic and unexpected op that we haven't been physically seen. I understand that with the worries of covid that things have been limited but I have been feeling worse this week as in chest ache probably from straining myself, I've been told can't excercise only walking until I've been seen. I been told one of the tablets I take is toxic and may not be necessary now but only to come off after being seen. It's very confusing and just get told soon. No apt with gp a phone consultation (which took a week of trying g get through to surgery) as I had to fill in risk assessment form for work.

I work in a school and it was aimed for September. I'm not usually a worrier but am feeling very lost as I dont know if I can or should go back if I still haven't been seen.

Is anyone else feeling all over the place ?

Rant over.

[shopman]

Hello Haty

I feel for you as it must feel like stumbling round in the dark. For some help and hopefully advice why don't you try contacting the British Heart Foundation Heart Helpline on 0300 330 3311 where one of the nurses may be able to talk you through your concerns. The Helpline is available Mon-Fri 9am-5pm. They also have a good range of literature on their site that may help as well.

[Calliope153]

For whatever reason the follow up after my emergency valve replacement and aortic graft in April has been the same. One phone call from the surgical team after 8 weeks and one from the GP when I burst a blood vessel in my eye. One set of blood tests, which I chased, at 7 weeks. I walk with someone who had an ablation last March and he hasn't even had a phone call. The dehumanisation of medicine continues apace. Actually if it was efficient I would not mind at all as it is rare to see the same person more than once. I think I would almost prefer dealing with a machine that has all my records. The emergency care and surgical skills are beyond outstanding in the NHS but the rest of it is woeful. I often feel anxious, uncertain as to what I should be doing and like I am muddling along. The medications I am on are standard although there is one that was stopped in hospital and was supposed to be reviewed as to when to start it again. I am not holding my breath waiting to be "reviewed". Now, oddly, I have an appointment ( no idea who requested it - on the patient record it merely says "someone involved in your care") tomorrow for a 72 hour monitor to be fitted......... as for "informed patient consent" don't get me started. You should try to get a phone call with your GP (start now and you should get one in about 3 weeks) about your return to school. A phased return might be a good idea as you will be on your knees at the start of term anyway and pushing yourself won't help. After care is not the same everywhere - certain health authorities are amazing - regular appointments and follow up care are gold standard. It is a shame they do not share their excellent practice with all the others. The fact this forum exists (thank you BHF) and there are over 19 000 members is a sad reflection of the fact that too many cardiac patients are going through a lonely, frightening and isolating time and reach out for support. However, the fact is there are thousands of patients whose care has supported them emotionally as well as physically and for whom the system has worked perfectly. Without the care I have received to date I would have died so I am just grateful to still be around to experience the, often terrifying in its random approach, system. Take care.

[Calliope153 in reply to Calliope153]

The short version of my reply is no, you are not alone in the way you feel. It will get better as you build up your strength.

[Haty in reply to Calliope153]

Thank you Calliope 153 for replying and I hope your recovery and upcoming test go well.

It is good to know I am not alone in muddling through this all. Though unexpected, during my stay in hospital the staff and care received was fantastic. But going from constant monitoring and daily physical checks and tests for 6wks to a couple of phone calls is unsettling. I hope all is ok and have not had major problems thankfully.But I think reassurance and the necessary follow up tests would help to calm doubts. This corona has put all usual things out of sync. I presume when things are "normal" ( whatever that is anymore) that post op procedures are much better.

I just hope that "soon" is soon.

It could be just me .usually I dont worry overly about things but it's the I think everything is ok to knowing it's ok that I would like.

I hope all goes well with you and we will get physically seen and passed as ok .

Haty

[Imin in reply to Haty]

Reassurance is very underrated yet extremely helpful in recovery.

I hope you get some very soon x

[Haty in reply to Imin]

Thank you Imin

[Ianc2]

Does your local hospital have a 'Pals' set for discussing patient problems?

[Haty in reply to Ianc2]

Thank you

Lanc2

The rehab nurse rings every few weeks to see how I'm doing .

And I signed up for talking therapies as was feeling very bewildered .

[Nelliedog]

Ditto I’ve been exactly the same 5 weeks in Harefield stents & double bypass and wound infection came out to lock down. Finally yesterday after 6 month got a tel call from the cardiologist, who’s booked me in for a stress echo. No rehab, no idea of how I should be feeling, doing whatever, just left to my own devices. Spoke to rehab nurse once who said can’t do anything just walk! Not a great service if I’m honest! But like you still luckily alive. Rang a few PT’s and gyms but can’t go without GP referral as vulnerable and unstable! At least the weather is nice 🤔

[Haty in reply to Nelliedog]

Hi Nelliedog

It's scary not actually knowing that everything even scar is ok. Over the phone routine questions don't inspire confidence!

I was in Harefield for 4 wks after 2 in Northwick park and as you know constant tests and monitoring to nothing.

Even meds, one is reliant on Ecg which havnt had. Gp said until I've had tests not happy for me to go back to work. Rehab nurse no excercise until ive been seen !

Weather nice but not allowed in sun because of one of the meds! Not even a suntan !

Good luck and I Hope all goes well for you

🙏

[Milo47]

I really feel for you. At a time when trust and confidence in those looking after you let you down.

Yes Covid has caused many problems but I do feel that just a little more communication between these doctors and patients would make us feel a lot more reassured. That in itself would help with recovery.

Good wishes for your future.

Christine