Short update

[highburyted]

Morning all

Just a short post cos I ain’t seen no one yet, I class myself today as totally confused. When the Dr came in yesterday and said they were looking out of house to do tavi, I then went on about the improvements I’ve made regarding COPD , hardly there, the 12 kilos I’ve lost in 2 weeks, and walking distance from originally 5ft sucking air like a gold fish to now walking 150 yards non stop.

Now after listening, the DR suddenly managed to get hold of my surgeon ( thought he was on leave ? Private?) and now the people who knock you out are coming to see me. Have I talked myself into the high risk keyhole! I’m no Dr. Plus the only breathing tests I’ve had are from before I was admitted when I was very ill, they’ve done nothing in here. Does anyone see how I’m getting confused, this is an operation for a heart problem not a toe nail. One last thing why r they not taking into account the excess weight I’m still carrying which must be compounding the valve

A confused highburyted

[Tos92]

If the doctors decide to do keyhole surgery, I’m assuming they will take all the risks and benefits into consideration before coming to a decision. If it is considered very high risk, it is unlikely that they will proceed with it. It is their job to risk assess every treatment/procedure.

I remember on your last post that they were going to consult a specialist team. Did they get anywhere with that?

[highburyted in reply to Tos92]

Hello, you’ll have to bear with me cos I’ve gone be a little stir crazy, been in this room for 17 days now, not allowed out because the hospital gave me skin mrsa ( I’m clear, )but protocol says 2 results, and that takes days and my surgeon is still on leave, I’ve actually done nothing to be held in here.

Now, one dr came to me and said they thought keyhole was too risky, my surgeon still wants to do it, their tavi team said they wouldn’t do it, so he said we r going out to a specialist team. I then said about all the improvements I’ve made with breathing, COPD seems to have vanished, stopped smoking, and they have not done a single test since I’ve improved so they r only using tests from when I was very very ill.

If u think about all this something is not right and I am now starting to believe they haven’t got a clue what they r doing. I am certain my surgeon on Monday will fly in here and say get him on the table. If so I will demand up to date tests before anything is done

Thanks for your interest and I’m sorry if sound a bit strange

[Tos92 in reply to highburyted]

Please don’t apologise. You do not sound strange at all. I think we would all go a bit stir crazy if we were in the hospital for that long!

Yes, I remember your previous posts about the keyhole being considered too risky and now it seems they are starting to change their minds about it. Maybe they feel that because you’ve been improving, the keyhole surgery doesn’t pose the same risks anymore to your health?

I think it’s a good idea to demand extra testing so that they can compare your before and after results to make a well informed decision on how to proceed.

[highburyted in reply to Tos92]

That’s all I’ve asked for. If I’m right they will see better results for them to help their decision, if I’m wrong I’ll crawl back in my egg.

[fishonabike in reply to highburyted]

it's your body and you have to give informed consent for any procedure - it's important that you feel satisfied that all relevant avenues have been explored, so it is not surprising that you are questioning decisions made by others

also being isolated is not normal for you and gives you a lot of time for reflection, but thanks to technology you have some conatct with a world outside and lots of info which can help or add to your confusion

i doubt that anyone can do anything until you are fully cleared after MRSA - they should prefer to avoid invasive procedures until then, so maybe you can use that time to clarify your options

i'm guessing that staff have restricted access to you due to your MRSA status, so can you see them by video call? can you ask them to clarify their thinking

By the way, you say you lots 12 k in 2 weeks.... that seems like a huge weight loss in a short time!

[highburyted in reply to fishonabike]

The drs have already told me twice that I am mrsa free and they r not bothered anymore l,it’s simply the hospitals protocol to have 2 negative tests and cos they r so short staffed it’s taking ages.

My weight loss of 12 kilos in 2 weeks is because of the fluid they’ve pulled off my lungs so far

[fishonabike in reply to highburyted]

i wondered if the weight loss was fluid, that would explain the speed of it - i'm sure it must make a huge difference to your breathing and mobility - but the docs will still be wanting to treat the cause to reduce the chance of this recurring

in the short term reducing your fluid loading improves things for you but they clearly feel that you need whatever procedures they are suggesting in the longer term

i hope you are able to get some straight answers to the questions you have very soon and that these help you make a decision you feel is right for you

[Anon2023]

hi. I’m hoping that by now you have seen someone who can shed some light on their decision making. After 17 days you must be experiencing cabin fever. Fingers crossed that it won’t be much longer.

[Noodlesalad]

Well done on your weight loss and exercise.I can understand how you must be feeling confused, sometimes we are given alot of information very quickly and if we still don't understand we need to ask again to find the complete picture, a bit like being in school again or solving a jigsaw puzzle.

Good luck and once again well done.

[highburyted in reply to Noodlesalad]

Thank you

[Cat04]

What ever is decided, in consultation with yourself, it will probably come down to the decision of a pre-op assessment and an anaesthetist. This will then take into account your loss of weight, better breathing and your improved exercise tolerance. Don't let them hustle you into anything until it has all been to explained to you and also with your agreement.

Best wishes

[highburyted in reply to Cat04]

I have no faith here now, they have said they r considering going to another hospitals specialist team, my family are attempting to contact Papworth, they r the best

[HHH2017]

Hi, youmust be going stir crazy and of course have sooo much time on your hands to think & rethink!

Do ask for a re run of initial tests and ask to see the comparisen results 'to help you give informed consent'

Hopefully medical team will realise you are wanting to fully understand the procedure & your body/health and give you some much needed info & answers. I wish you well 💪🏽

[bagsypartime]

Just reading this and maybe I've got the wrong end of the stick;

You want a valve op and your surgeon is keen too.The fact you had so much fluid says something is not working right.

Because you have a breathing condition and are overweight the wider team judge you are not fit enough for the op.You say your fitness is better and you have lost weight so now should be allowed the op.

They are being cautious, you want them to get on with it. So what is the purpose of more tests?Are you trying to prove to them that you can have the op, or rule yourself out of having an op?

You say you are confused, maybe the docs are too.Does he(you) want this op?Why is he asking for more up to date tests then that will only delay things more?

[highburyted in reply to bagsypartime]

Hi

The purpose of further tests is not just because of my COPD it’s because all the tests they r looking at were taken when I was at deaths door, mobility of no more than 5 feet, sucking air like a goldfish. In 2 weeks here, it’s obvious that the 12 kilos I’ve lost has been the fluid they’ve been pulling off my lungs, and still are caused by the valve.

I have just had a 2nd chest X-ray which I believe will be much much better than the first, my mobility has gone from 5ft to 200 yards. It’s the breathing test I want again, when I did them before I knew they were poor, if as I expect they r good it would give me great confidence to let them do keyhole surgery. You are probably aware to knock someone out with COPD is much more dangerous than a normal person.

I believe my weight today is the same as it was 25 yrs ago when I had a serious operation and they pulled me through

Highburyted

[Smitty1956]

Hi, highburyted,

I know that you must be confused and scared about the potential surgery coming earlier than expected—but you really do sound much stronger than when you entered the hospital. Plus, I am sure that the doctors can see for themselves the same improvements that you mentioned.

I know that it is hugely scary—but I don’t think that your doctors would consider doing a dangerous operation if they did not believe that you would be up to it. It sounds like you have made major change in two weeks for being in a hospital setting. I am also assuming that they have been running blood tests and/or other tests too that might also show some improvements??

I am certainly wishing you the best in whatever you and the doctors decide is best for you. You do sound much stronger than before, and that has to be a positive sign. ❤️

[highburyted in reply to Smitty1956]

Hi

Thanks, I am stronger but this is the week the decision will b made, my surgeon is back on Monday and if he’s seeing what I am he’s gonna jump on me . I am astonished with my COPD, it all but vanished