Post TAVI

[SandraLlew]

Hi all

Just out of hospital after a TAVI, RHR is increased by about 20 points O2 is lower, feeling really tired and lifeless. Did others feel like this have this reaction? Bisoprolol was stopped so that they could see a 'real' change in HR.

[Taviterry]

I felt fine after mine and the next day accumulated 70 minutes in stages carefully walking around the hospital. Mind you, a week before I had done a six-hour walk in the countryside! Before the op I checked out some of the possible after-effects and some seemed quite daunting. IIRC one website advised to increase the length of one's walks by ten minutes a week. I guess that a lot depends on one's overall state of health. Hopefully before discharge you were given a number to ring about any problems, or even given remote monitoring. Hammersmith Hospital promised this, but I opted instead for the John Radcliffe in Oxford, where there was very little post-op advice (apart from an ECG and check-up after three weeks).

[SandraLlew in reply to Taviterry]

I had to ask for information regarding aftercare no phone numbers were given and the one leaflet I got was about recovering from a heart attack. Here in South Wales there is only one hospital doing TAVI, so as I am from outside their catchment area I will get a phone call in 10 weeks and they have referred me for rehab to their area, which will be refused and then I will be referred back to my health board.

It's not been brilliant.

[Taviterry in reply to SandraLlew]

Sandra, that does seem extremely superficial. Hopefully you were given some verbal advice before discharge, such as the need to have company for a few days, care of stitches, not driving for four weeks, not lifting or pushing objects. At very least I would have thought that a physical check-up would have been desirable.

You may this BHF guidance helpful: bhf.org.uk/informationsuppo...

[Wurliwonder in reply to SandraLlew]

I live in South East Wales and had a similar experience. No hospital within my Health Board area does TAVI procedures and only one hospital has an A&E Unit.

I was sent home after my TAVI with just a brown paper bag of medication. I was given no paperwork and I wasn't referred for Rehab. I had two bags of personal belongings. I was told one bag was too heavy for me to lift although not told what the weight limit is. I live alone with no family support and was sent home by taxi. I had to ask the taxi driver to carry my bags to the front door. There, I emptied them a little at a time.

I had a Transthoracic Echocardiogram 6 weeks after surgery and a phone call from the Cardiac Unit 10 weeks after discharge. Otherwise I've seen nobody, although I did discuss my revised medication with the Doctor's Clinical Pharmacist over the phone.

I coped. My neighbours have been very supportive and one had bought bread and milk for my return. Luckily, I had lots of veg in the freezer and many tins of soup etc., so I ate reasonably well. I live just a short walk from a Premier Store and have a wheeled walking aid with a seat so was able to carry shopping home with no problem. Store staff packed the shopping bag for me.

It takes me around 2 hours to get from my house to the TAVI hospital by bus, but that's not possible for early morning appointments. A Taxi costs £40 each way.

[Gooner1947 in reply to Wurliwonder]

Bit concerned by what you said.I live in SE Wales too. I saw cardiologist the other week and he said I will need TAVI. Has to be in that new hospital.

Other than what you mentioned how did the actual TAVI go for you. Cardiologist said its "day surgery".

Yes, I've looked at buses and it not very good from Blackwood.

Any help/advice most welcome

[Wurliwonder in reply to Gooner1947]

I was in the Grange initially but was told I had to go to the Heath Hospital in Cardiff as they weren't allowed to do the TAVI procedures at the Grange. That may have changed.

As for the procedure itself, that went well although it took a little longer than expected. There was no real pain but there was some discomfort, particularly when my heart rate was increased to 200+ bpm, but a few hours later I had a severe pulsing pain in my groin which made it impossible to lie still. The nurse told me that I had to expect some pain but eventually sent for the surgeon. He did something to the straps that were there to keep the groin wound closed and the pain stopped immediately. I was pain free from then on. I lost faith in that nurse after that.

24 hours later I was waiting for a taxi home.

The bus that goes to the Heath from Blackwood, goes past my house but didn't run early enough for the appointment. Perhaps I should have asked for a later appointment but I opted for a taxi instead as I have to wee quite regularly and the bus journey is a long one.

I was in hospital for a total of 7 weeks as there was no bed available in the Heath and the Grange didn't want to send me home in the meantime. I hadn't had a heart attack or any significant chest pains, only severe palpitations on two occasions.

The TAVI procedure is quite a common one and should go well for you with no complications. For me, recovery at home went well although I found being unable to drive or carry even modest weights very frustrating but the time passed quite quickly.

[Gooner1947 in reply to Wurliwonder]

Thank you for that. Hopefully all is OK with you now.I am sure the cardiologist told me it was "day surgery" or maybe I misheard him as it was a lot for me to take in at the appointment with him at The Gwent outpatients

[Wurliwonder in reply to Gooner1947]

Given the number of pre-op tests and monitoring you have to undergo prior to the operation I don't think it would be possible to just arrive at the hospital for a TAVI and go home the same day.

[SandraLlew in reply to Wurliwonder]

I believe the norm is in the night before, operation on day 2 and all being well home on Day 3

[Gooner1947 in reply to Wurliwonder]

I know he said I definitely have to have an angiogram. Would that be done first to assess what further treatment is needed?I was hoping he would've known if I needed a TAVI. He said after the echocardiogram it threw up some results.

Next Sunday I have another CTscan at The Gwent. This one is a whole aorta scan. A week after that I have a Carotid Vascular Ultrasound.

I wish he had taken the time to have explained it all.

It all came across as "all matter of fact" and a very common procedure.

Of course, I do hope I don't need a TAVI but he did mention the valve, I remember that.

[SandraLlew in reply to Gooner1947]

I had all the tests over a period of months Echocardiogram TAVI Artery scan, ECG and CT, all necessary so that they could plan the procedure and save time.

[Wurliwonder in reply to Gooner1947]

In my case the ideal procedure would have involved open heart surgery but I have other health issues which meant that a TAVI was, probably, a better option but it took the surgeon quite a long time to make the final decision.

I have memory issues and find it difficult to assimilate a lot of information if given over a short period of time so even a few minutes after a consultation I wasn't sure about exactly what had been said. As a result, I tried not to worry about it. I just "went with the flow". Something was going to happen, at some time, and all I had to do was be prepared at all times, clean with an empty bladder 😇. Some hospital staff were very good at reminding me I had to prepare for something that day but at other times a nurse or porter simply arrived with a wheelchair and off I went.

None of the tests, even the invasive ones, caused me any significant discomfort and virtually no pain at all. During the Angiogram I was warned that I'd feel a very warm "flush", which I did, but that only lasted a very short time and wasn't a problem. The most difficult part, for me, was moving from the wheelchair to the device itself.

[SandraLlew in reply to Wurliwonder]

Communication seems to be reliant on individuals rather than built in to the systems - which is sad.

[SandraLlew in reply to Wurliwonder]

So sorry to hear that my experience is not isolated. My hospital was in Swansea and I was lucky to have friends run me there and back. In one booklet (Online) it says you cant lift more than a 2 pint milk bottle for a period of time - this varies from 3 days to 2 weeks.

You can apply to the Department of Health for NHS travel to be reimbursed.

[Wurliwonder in reply to SandraLlew]

My close friends are elderly and none of them wanted to drive to the Heath although they did visit me there but travelled by bus.

I looked online for the restrictions on movement etc., but living on my own meant that I had to find alternatives quite quickly. In that sense I'm lucky that I was physically disabled prior to the procedure so already had some useful aids.

[Gooner1947 in reply to SandraLlew]

I will have my TAVI at same hospital. I live South Wales. Have a whole aorta CT scan and carotid vascular ultrasound lined up during next 2 weeks. Other than your issues mentioned how did the procedure go in the hospital.

The cardiologist at hospital in Newport mentioned it will be "day surgery".

Hope I won't have to wait too long now.

[SandraLlew in reply to Gooner1947]

Hi the procedure was OK, the biggest issue during the procedure was a lack of communication about what was happening and when, they were pumping in Fentanyl, antibiotics, sedatives and local anaesthesia. They speed up your heart rate to get the valve in place which is a very weird feeling. As I also have a lung condition as well my oxygen dropped so I had to have an oxygen mask.

After the op you have to lay still and flat for 6 hours, so at 23:30 that night was the first chance for food since 22:00 the day before.

[Gooner1947 in reply to SandraLlew]

Can they give you anything to sleep whilst laying flat for 6 hrs? Will they give you pillows to prop up head? Laying flat could make me feel claustrophobic. I am very claustrophobic and that is my biggest worry about the whole procedure.

I have probably had all the tests etc most have.

After seeing cardiologist he has referred me for a whole aorta CT scan and a Carotid Vascular Ultrasound. Both those in next 2 weeks.

Then I'm hoping the TAVI soon after at that hospital.

[SandraLlew in reply to Gooner1947]

I was slightly propped up due to breathing difficulties when lying flat, this was during the procedure and the recovery. The whole being still is so that the leg the valve went in is kept straight to help the would seal. The hospital I went to did not do stitches they use collagen pods which melt over time.

[Gooner1947 in reply to SandraLlew]

Was it The Grange?

[SandraLlew in reply to Gooner1947]

Morriston in Swansea, I was told I could take the CPAP (Sleep Apnea) machine into the procedure room as it is relaxing and maintains open airways and lung pressure. I chose not to.

[Tlyna]

No. I immediately felt much better after waking up from the procedure. I could breathe easy for the first time in many months and had energy again also first time in months. I had to be talked into not trying too much immediately because I felt so good. I was never prescribed Bisoprolol. I am on Metoprolol Tartrate, Lasix, Potassium and Plavix (the last since the TAVR). I had it done in January and still feel great.

[SandraLlew in reply to Tlyna]

So glad to hear that, I'm beginning to feel normal after 5 days but am still breathless - due to an undiagnosed lung condition - but my feet and legs are not swollen for the first time in years.

[Tlyna]

Sorry to hear about the lung problem. Hope it can be taken care of soon. Yeah the swollen legs and feet are miserable. I am still on Lasix for it as it happens some times anyway. I have poor circulation in my lower legs and neuropathy in my feet because of a car accident years ago. The heart valve problem had made it a lot worse though.

[SandraLlew in reply to Tlyna]

I will be having radiotherapy for lung cancer very soon, the other lung issue is some form of asthma and they (the doctors) can't be certain what it is, so far in the last 5 years I have had 3 different diagnoses and medications for it. I will keep pushing for definitive tests. I hope you continue to prosper.

[Tlyna in reply to SandraLlew]

Hope you will beat that cancer. I had colon cancer back in 1999. So far still clear but scared it will come back. My grandmother beat it twice so I'm hoping. It is always a terrifying diagnosis no matter the type. I really wish the best for you. Maybe now that you have had the valve replaced you will now have the health and strength to win that battle too.

[SandraLlew in reply to Tlyna]

Thanks this is my second time too beat the first one and I will beat this one. I had no heart symptoms other than swollen legs, the rest seems to be lung/asthma/copd stuff. The lung surgeon insisted I had the TAVI or he would not remove the tumour. But now I think radiotherapy is better for me, less invasive, no time as an inpatient, quicker recovery , less risks etc. As a person with ADHD hospitals are a nightmare, noisy, bright, airless, busy etc. no scope to be able to do anything at all except read and sleep. Hated the whole experience.

[Tlyna]

I had a murmur all my life but it didn't get bad until recently when the valve really went wonky. I'm not surprised the surgeon wouldn't do the tumor removal until you had the heart valve done as it likely would have strained your heart too much . Now you will have a much better chance of getting through it okay.

[SandraLlew in reply to Tlyna]

I have elected not to have the lung surgery, I will be having radiotherapy. The poor experience I had of being an inpatient, the lack of information and communication has decided me against further surgery; especially as they only allow a 2 week recovery period. I was barely in the criteria to have the TAVI, having only mild to moderate stenosis, not severe.

[Tlyna in reply to SandraLlew]

My valve problem stayed fairly static for many years but when it went bad it was fairly fast.. I think there is something wrong with that hospital if they refuse to give you information you need for an informed decision. Two weeks recovery for a lung surgery, are they frigging crazy?

[SandraLlew in reply to Tlyna]

It seems to be standard practice from the lung surgeon that if you have a heart issue it has to be fixed first, this may be clinically OK but the time frame has been long, many errors have been made in communications and if I were not pushing it I feel that nothing much would have happened. There were 6 named nurses; 2 from referring team at my local hospital, 2 from lung department in Swansea and eventually 2 TAVI nurses from cardiac department. Plus a physio. Mostly I had to contact them, but the most helpful people were the secretaries and admin staff.

[SandraLlew in reply to Tlyna]

Oh and the pulmonary physio wants me to start prehab for the lung op - I can't drive now for 4 weeks, but I am supposed to go there for an hour a session. I refused unless there was input from the cardiac physio team. It's all so disconnected, a common issue I think across the UK you are treated as body parts not a person.

[Tlyna in reply to SandraLlew]

Here you are often a number not a person as the bean counters are running the health insurance not the medical professionals.

[SandraLlew in reply to Tlyna]

I assume that you are from the US? It's getting that way in the UK too.

[Tlyna in reply to SandraLlew]

Yes, I am from the US. Formerly Michigan, now Florida. Frequently wishing I could afford to head to Canada or the UK with the way this country is heading.