Had it coming on for a while due to what i now know are serious heart problems. they will not be able to fix very leaky tricuspid valve and will not operate due to being 82...There had been a suggestion of keyhole surgery and a repair with mIcra clips.
Insomnia has also raised its ugly headas well as 'spaceyness' with meds.
Trying to deal with a lot and very worried.
Well that is a lot to have to deal with. What do you feel about having the keyhole option?
Can you distract yourself in any way just to give you a few minutes peace?
I am sure others will come soon to empathise and give you some good tips and suggestions.
Take care
Sara
5-10% chance of death I was told by cardiologists although she is checking/double checking with surgeons.
I sympathise with your situation and anxiety. I have similar and, with respect, am way younger.
As I was reading of your 5% chance of death, rather than focusing on this, although difficult I know - look at your situation not in the negative, but in the positive, as you actually have a 95% chance of survival, pretty good odds I would say, Take care.
IThank you for your reply.
t was 5-10 % and age was in the mix.Not sure they are willing do it yet anyway.Plus the keyhole procedure for tricuspid surgery is not very well developed?But that could be expertise in The John Radcliffe \Hospital Oxford and not for example in The Royal Brompton.
Nice to hear back from you. It can all be quite overwhelming can't it. Especially when friends dont really understand quite what it's like to have a noose hanging over their heads, despite their best efforts.
I'm under the care of The John Radcliffe Hospital in Oxford and they are marvellous, so if that is where your treatment is offered, I'm sure you'll be in very safe hands and get the very best of treatments. Take care 🙂
The cardiologist has yet to speak to the TAVI team but the rec. forserious surgery generally is to get someome to do it who has a good track run in that procedure.
Who is your cardiologist and is your problem tricuspid regurditation?
Hi. My Cardiologist/s at the John Radcliffe (I have two . . .) because I have two separate heart conditions, are Mr Karabanda, who deals with my Ischaemic heart diseases and stents.
My second Consultant, more worryingly, is dealing with my secondary condition, that was only diagnosed just last year, namely Hypertrophic Cardiomyopathy (with obstruction of the LV).
This is a genetic heart condition, also known as Sudden Death Syndrome and does exactly what is says it does, without any warnings.
It's a progressive disease and It can not be cured.
I'm just managed, with a vast cocktail of medications, as I can't undergo surgical procedures as I have a range of exsisting serious co-morbidities including Stroke, HA and unstable Insulin dependent Diabetes, plus a few others . . .
I have been offered Genetic Testing and also had a "risk assessment" at the JR to determine the statistical likelihood of dying in the next five years. Given all my complications, it's not a great outlook.
I think I'm still in the denial phase somewhat. I'm 58 and this diagnosis was a massive shock, right out of the blue.
My Consultant Cardiologist who manages this is Dr E. Wicks ( Inherited Cardiac Conditions).
Its my understanding that for patients who are permitted to have surgery, an ICD can be implanted, and or, an Ablation surgery can be undertaken to help manage the condition and treat symptoms.
So no, I don't have quite the same condition as yourself but I can certainly empathise with your situation and anxieties. The mind becomes quite focused when we are faced with such realities.
Right up until I became ill, death (well mine) rarely came to mind, well it certainly does now and guess what . . .? I'm not ready !!
Stay safe 😷😷😷
I feel humbled at your reply.
Actually ,I am not ready to go anywhere either....even at 82 because up until a few months ago my quality of life was as of someone 10 years younger. I had variousheart problems as the tricuspid problem for years and Afib for c 10-15 years.I had a hole in the heart closed 10 years. ago at the JR by Oliver Ormorod.It was very successful.
I saw Dr orchard the genetic Dept this week but i think she is going to transfer me to Heart failre and perhaps Dr Gamble....not sure yet.
It does not seem likely the J.R will want to undertake tricuspid surgery for me as they have not doctors, she says, developed their techniques well enough....my words, not hers, but this is more or less what she said.
I have just whizzed off a letter to Barts re their teams in this surgery plus expertise and numbers they have done. etc. so something else in the pipeline.
For the moment i need to get my meds right due to overwhelming (for me) palpitation attacks. At the moment when they hit I hit the hay for up to hour or two.....not like me at all but need to be prone.
Are you still working> Have a supportive family.......male or female?If these questions are too personal do not feel obliged to answer.
No, not too personal at all. I'm pretty much an open book. I'm female, most of my family have passed now. I lost my dad last year in March, his first anniversary is coming up in a matter of days. He was 93 and we were extremely close. Fortunately he didn't die of Covid and I was with him when he took his last breath. I feel so fortunate to have had him for 58 years, many do not. I miss him dreadfully.
I have a sister but we are not close, and I have some close cousins and friends, we speak everyday but they do not live near me, but visit from time to time. Had a husband for 25 years but don't have children.
Work for me stopped quite a few years ago, mainly because of the complications from Diabetes, Diabetic Neuropathy ruined my mobility, due to severe nerve damage in my feet, which causes constant pain and a general lack of balance and frequent falls and numerous broken limbs.
Diabetic Retinopathy in my eyes is also an issue.
Then a Stroke in 2018, followed shortly afterwards by all the Heart issues and here I am 3 years on.
Oh and I missed out that I also have a broken shoulder, from back in 2019 that can't be operated on, so I'm basically just one handed - happy days . . .
You couldn't make it up could you? 😉😉😉
Oh and I meant to say, The Brompton, is without doubt one of best hospitals, if not "the" best and if it's good enough for Philip . . . 😉😉😉
Prince Philip is in Barts Hospital.....
Yes !!! Just realised my "B" mistake, Derh Time for bed I think 😵😵😵
😊
Thanks.Sounds like a lot to cope with alone. How do you manage from day to day? I have a very helpful husband and a son who lives quite far but helps out in numerous ways and phones often.At the moment i have been prescribed antidepresssants .Not begun to take them yet.I do not want to get out of bed even when feeling better than at other times.Overwhelming gloom and no motivation. i was no 'get up and go' and being slight of weight could get around well.Only doing domestic stuff when I was studing online and watching You Tube lectures and keeping mind mind well fed.
You are very fortunate to have a supportive husband and son around. Poor declining health can be a lonely and scary place to be . .
For me, It's not easy, but due to circumstance, I can't move location wise and actually I'm happy where I live, in my semi-mobility adapted bungalow. And especially as I fall within the catchment area for treatment at the JR Hospital.
My local community health team are amazing and very supportive, even through Covid, nothing is too much trouble for them and I know I'm incredibly fortunate to have them.
Probably like you, I have been "shielding" since March 2020. Only leaving home for medical appointments, of which there have been quite a few.
Including a few visits to A&E for X-Rays, when I have fallen indoors. I am linked up with a SOS medical alarm system (pendant round neck) for such occasions, much as I hate wearing it !!
Oh I lie, I did go out and have friends to stay last summer when the lockdown was lifted for the first time. But spent my Christmas alone for the first time ever, not a pleasant experience I'd care to repeat.
Telephone and some social media with friends and family have been my main lifeline to retaining my own sanity, although like everyone, there have been dark days and even darker nights, as I dont sleep well anymore.
You'd think all the meds. would knock me out, but they dont. I've gone from a good 10 hours a night, to a state of being lucky if I can get 3 to 4 hours a night. GP refuses point blank to give me any further medication. So most of the time I feel totally drained.
I'm going for a full blood count test next week so that should be interesting.
Other than that, I have to rely on online home deliveries for food etc. My local pharmacy bring my prescriptive medication round to me, and I have found an amazing lady gardener to keep on top of the garden, and a reliable handyman that I can call anytime. So for now, it's just me and the dog. Yes, I have the sweetest little dog, a Pomeranian, who would happily sit on my lap 24/7. I've had him 7 years and wouldn't be without him. He's not an "Alert" dog, but he definitely knows when I'm going downhill. Although I have days when I just cant be bothered and want to wallow in bed, when you have your pets depending on you for their every need, that's what gets me up, everytime 🐾🐾 and puts a smile back on my face. This is my reality.
I am very glad to be in touch. Do you live in Oxford?
Thank you, me too. I'd like to know how you are going along. Heart disease and all its complexities is a great leveller, we cant change our health circumstances but we can each, offer support to one another, as do most of the good people on this amazing site. I'm living in Gloustershire and you?
I live on the edge of Oxford...2 miles from the City centre.
I am about to start on antidepressive medication but not sure if this is a good way forward on account of it messing me up more than it helps esp. re insomnia which i am battling with right now.My GP is very sparing with sleeping tablets due to them becoming habit forming However, a reasonable nights sleep means days are more profitable .I do not think my meds. are right yet as sudden palpitations (of the kind I experience now) mean I need to put my headdown for a while when they occur. without the threat of a sudden 'attack'. If I am to get my life back to anywhere near normal I will need to not have them during the day .....subject to lock down being lifted.Like you i do not get much sleep and as a consequence can be a zombie during the day and doing nothing when physically i could do a lot ....'only' the heart stops me.
I know, I have a GP like that, and for exactly the same reasons, which I understand, but sleep deprivation builds up and makes you feel so unwell not to mention what toll it takes on your physical appearance - Zombie is about right.
Do these particular GP's really not think that by refusing to give us, even just temporarily, some help by way of sleeping tablets, that we won't go out/or order online products like Sominex or Nytol ? REALLY ??
When you haven't slept properly for days, weeks, months or even years. the human psyche will do just about anything (risks included) to get a good nights sleep, despite it being probably more risky, as taking it along with a whole host of heart meds. unregulated, rather than having a controlled dose on prescription with regular reviews.
Given what you have said, I think you should take the advice you were given and start the anti-depressants, they wouldn't have been prescribed for no reason.
Give them a chance as many take a while to "kick in".
Today's medications for anxiety and depression are way more sophisticated than those used in the past.
If you genuinely end up feeling like a zombie, somethings wrong, maybe the dose, maybe the drug itself and your particular physiology. But there's a whole raft of medications out there, so discuss with your GP or health provider, don't give up at the first hurdle, you can be treated successfully and end up feeling at the very least, a little brighter and more like the yourself, you remember being . . .
Take care of yourself ⚘⚘⚘
Thanks you for your insightful and supportive words.
It is tricky to sort out in ones own mind quite what is causing what. I do know the sleep deprevation is significant .
I was taking Digoxin a few weeks ago prescribed in the JR.adcliffe when I was there in AAU but it made feel dreadful.They added Bisoprolol quite quickly with quite low doses of each medication. When i found Digoxin intolerable they dropped it and now I am just on the one heart medication. I do not see the cardiologist for 2 months.My GP has been attentive but maybe i need to press harder re. the present palpitation medication not being ideal...if that is the case. The underlying tricuspid regeneration problem is the cause of why the palpitations are now coming on a more regular basis but i am concerned as to the quality of life i can expect from now on.They may be going to move me on to the Heart Failure clinic.I hate spending so much time engaged in my mind with all of this with real life taking a back seat.
My son also suggested i should start on the antidepressant s. It is the fear they may add to the existing symptoms that prevents me doing so.
Feeling depressed for no reason 
depression post bypass
progressive increasing of diltiazem dosage
Feeling depressed after HA
Depression and suicidal thoughts
