Advice for cardiac rehab and other me... - British Heart Fou...

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Advice for cardiac rehab and other methods

Applemango profile image
16 Replies

Hello, I have stress cardiomyopathy (takotsubo) and ended up stopping studying at university due to chest pains, breathlessness, etc. this month.

Do you have any better tips for recovery from the symptoms?

I originally like a healthy lifestyle, caffeine-free drinks and vegetables.

I was trying to do cardiac rehab, watching YouTube videos of cardiac rehab, however, I couldn't do that due to the above-mentioned symptoms even for a few minutes.

I believe that I need alternative options for recovery from the symptoms.

Next month I will receive Waon (thermal) therapy for a heart condition.

Also, I remotely hired a psychologist for my stress management at the NHS.

Although I am planning to resume studying at university next year, the symptoms linger. I wish to be more active step by step.

Thank you for letting me share.🙂 I would appreciate it if you could provide me with some advice.

I wish each of you good well-being ✨

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Applemango profile image
Applemango
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16 Replies
Kristin1812 profile image
Kristin1812Heart Star

Hi and welcome. I wonder who in the medical services dealing with you, has been most helpful to you? Student Counselling? GP? Hospital Consultant?

Do ask the best one for you, whether there is a local Cardio Rehab service. Forum members here are very complementary about these groups

You could ask to join, or you could use one of the Rehab group trainers to work with you for individual training. I have found them all very helpful and knowledgable and showed me how to do it safely and effectively.

Applemango profile image
Applemango in reply toKristin1812

Hello, thank you for your message and suggestions.

I have several doctors but a cardiologist is unkind to me. Also, cardiac rehab per se is not so common in my home country. Therefore, it is difficult for me to find the right person here in terms of coping with my health issues.

I will research some on my own.

Thank you for your kind attention to my message.

Kristin1812 profile image
Kristin1812Heart Star in reply toApplemango

Sorry, my message doesn't translate beyond UK. I can see now why you were trying on-line. Where are you based? We have a lot of international contributors who may be more helpful.

I’m hoping there is more local help available for you, if only you could find it!

Applemango profile image
Applemango in reply toKristin1812

Hello again, thank you for your kind words. I am based in Japan. Fortunately, a physiotherapist seems be kind in the hospital. Medical schools in Japan are so problematic in many ways, although we can go to the hospital 24/7.

I have remotely studied health sciences and medicine at UK universities for five years. I still belong to a UK university.

I have a British psychologist for stress management.

Thank you for your kindness.

fishonabike profile image
fishonabike in reply toApplemango

hi again, i find it surprising that services for people with Takotsubo seem so poor in Japan - this is where the condition was first identified!

Applemango profile image
Applemango in reply tofishonabike

Hello, I appreciate your kind attention to my messages.

Yes, I believe that Japanese doctors need to learn ethics and healthcare for quality of life more and more.

In Japan, the number of medical devices is larger than in other countries. The frequency of access to medical settings is great.

Like the UK, I am hoping that every person in Japan could talk about both physical and mental health openly. Unfortunately, doctors don't understand English and the least research, which is a limitation here.

I hope you are having a peaceful day. Sending you get-well rainbow 🌈✨😊

fishonabike profile image
fishonabike in reply toApplemango

unfortunately, from what i have learned it seems that doctors all over the world know very little about Takotsubo and how serious it can be - many of them are dissmissive and lack understanding of the effect this has on us - this is why we seek support from each other - i hope you are finding support through you psychologist and here online🌈

Applemango profile image
Applemango in reply tofishonabike

Thank you very much for sharing your expertise and kind words 🙂 Yes, there is no specific treatment in takotsubo research at this stage.

Today I read a research paper about the relationship between Takotsubo and positive emotions. In takotsubo research, researchers tend to focus on negative experiences of their patients, various positive experiences might help us to some extent. My psychologist lives near Lancaster that I am not familiar with. She is nice and knowledgeable.

I believe that we can find small happiness anywhere despite heart conditions. I personally like to see stars and the moon.

Thank you for letting me share. I hope that your weekend will be joyful ahead 🌸💫

Are you consulting with your physician/GP on how you should be best progressing your situation? We are all unique and respond differently to treatments so although there are general recommendations about rehabilitation/recovery there is no best fit for one and all. And If you are not resident in the UK then recommendations for local cardio rehab or similar will not be easy to provide.

You could try the BHF online rehab course here for a few pointers on what to do

bhf.org.uk/informationsuppo...

Or you could contact the BHF Heart Helpline nurse by chat or email who may be able to give you some advice specific to your needs

bhf.org.uk/informationsuppo...

Applemango profile image
Applemango in reply toLowerfield_no_more

Hello, I appreciate your concern and the helpful information.

I am based in Japan. We don't have GPs, we can see a specialist directly. I understand that each county has pros and cons.

90% of the Japanese can't understand English at academic/business levels, therefore Japanese doctors don't understand evidence-based medicine, unfortunately. Most of the patients just take a rest at home after being discharged. They just take prescribed medications without specific support.

I have chatted with a cardiac nurse here before, which was grateful to me.

Thank you for your kindness.

Butcherboy profile image
Butcherboy

I’d speak to your local cardiac rehab department. If you call cardiology, they should put you through or give you a contact number. I’m guessing they won’t know taktusoba if you’re not near a major cardiac centre.

I work in anaesthetics and I have only ever seen one patient with it. Which makes you quite unique. The rehab guys are excellent nurses with deep knowledge of cardiac function and physical exercise. If they don’t know the answer, they’ll go find out. Maybe put you on a rehab program with the rest of the cardiac patients.

A lot of the time with rehab, it’s having conversations with people while attending, and knowing you’re doing the right thing. Which puts your mind at ease.

I’d also invest in a medical alert bracelet. Like I said, your cardiac condition isn’t that well known in the UK. If you need emergency intervention for anything. The stuff we might do to you in the absence of your knowledge may put you at risk. Knowing what you have changes our routine of intervention.

Best of luck.

Applemango profile image
Applemango in reply toButcherboy

Hello, I really appreciate your suggestions and concerns.

I like medical alert bracelets. I can see lots of the bracelets on the internet.

Takotsubo is a Japanese word and Japanese researchers found this disease. In this aspect, Japanese doctors can handle my disease well. Early diagnosis of any disease is good here.

An issue is that Japanese doctors don't have the concept of cardiac rehab. After patients develop cardiovascular diseases, the doctors just prescribe medications. As a patient with a heart condition, there are few options to maintain health after the recovery.

Patients in the UK sound happy in terms of social interaction.

Thank you very much for teaching me a lot.

I hope you have a lovely afternoon🫖😊

dunestar profile image
dunestar

I'm sorry for your situation where there seems little after care support for patients with cardiac conditions. It must feel a bit lonely. I did a cardiac rehab class and it was very beneficial for the social aspect and everyone helping each other. I was wondering, if you can't do the cardiac rehab classes on Youtube perhaps you could start off with simple walking. Just start slowly and build up from there.

Applemango profile image
Applemango in reply todunestar

Hello, I appreciate your kind compassion.

I am glad to hear that the class was so helpful to you. I wish you good well-being.

Yes, I will try to take a walk step by step as you suggested. After that, I will try to do something on YouTube. I am fortunate to interact with the kind members here and have British friends.

I hope you have a lovely day.

fishonabike profile image
fishonabike

Hello again, i have also had Takotsubo ( i respnded to your earlier post) - at the moment there has been no research to develop the most effective treatment for Takotsubo - the cardiac rehab offered for other heart conditions is not always tailored to the needs of people with Takotsubo, because no-one really knows what they are - in many countries rehab is not offered after takotsubo, although many find it helpful if it can be tailored to their needs and started when they feel ready, but only when they feel ready

your own episode was fairly recent and one of the UK specialists in this condition recomends at least 6 weeks of rest, similar to the treatment for myocarditis

it might help if you understand that Takotsubo causes inflammation of the heart muscle, this inflammation inhibits mitochondrial activity and the production of energy in the myocardium, so your heart physically cannot function as well as it should - this resolves gradually in most cases and at present there is no treatment which can speed up the process - once the inflammation has resolved (research indicates than this can persist for 3months+, Dawson, Scally et al) increasing activity becomes more possible - but if you have ongoing chest pain, breathing problems of other chronic health condition this process can take much longer

my own theory is that if you are getting symptoms like chest pain, breathlessness and lasting fatigue you are not ready to do more and should be doing less - it is important to hear what your body it telling you and act on it

my own recover was complicated by ME/CFS, but i feel that my knowledge of pacing and energy management helped me to recover from the Takotsubo as i took things very gently - many members in the facebook group i mentioned find that a very gradual return to activity works best - pushing yourself to do more tends to lead to fatigue and feelings of failure, you are not superhuman so give in, put your feet up and take time to recover before you try to improve 😀🌺

Applemango profile image
Applemango

Oh, I really appreciate your kind help. I noticed this post today. My apologies for the slow reply.

Thank you very much for sharing your wisdom and for considering my situation.

Yes, it seems that my body is not so ready to move more actively, according to my symptoms. This Autumn I felt weak. Your advice is much appreciated 🙂

I found that the homepage of the takotsubo group you mentioned. I don't use FB, unfortunately. If I necessary, I will create an account of FB. Thank you very much for your kindness ✨

I am so glad to hear that you have recovered from the symptoms. Your lived experiences are precious and inspiring 🧡Thank you for sharing your gentle sparkles✨

May your days be lovely🍀

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