Good news then bad: I had a meeting... - British Heart Fou...

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Good news then bad

momander profile image
18 Replies

I had a meeting with my cardiologist yesterday snd he told me he was delighted with my recovery from double cabg surgery. He answered all my questions and reassured me about all the concerns/ worries I have. I came out feeling on cloud 9, and for the first time in 3 years of heart concerns, I felt there was hope for a fresh new start!! I felt great today and was beginning to process what has happened to me in the last 3 years. I got a letter this afternoon from the hospital saying that following an MRI, gall stones have been found in my bile duct!! I also have to have my gall bladder removed at some stage too. My first fear was the procedure used to remove the stones from the bile duct. They do this through inserting a tube down your throat whilst you are awake! Sedation drugs don't work with me and so I am petrified of the thought of this procedure!!? Then the letter went on to say the MRI detected a small abnormality in my right kidney??? I am now worried sick as to what rhis might be, and have been referred for a detailed MRI scan of this area!! Has anyone had experience of this? I'm so worried.

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momander
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18 Replies

Hello -)

I am so pleased your double Bypass has gone so well and your Consultant is happy with the results keep hold of this massive positive because it is :-)

I can totally understand though after 3 years thinking finally and then getting these letters and straight away your new start feels it has been blown into pieces

Since my Bypasses I have had a few things I have had to keep having checked that have appeared yes frightening and I have one I have to have a scan next week to check petrifying but these are things they can do something about and even though we have been through enough I am not sure if it is bad luck or what but now they need dealing with

The gall stones will be a walk in the park compared to the Bypass surgery and explain to them your fears never be afraid to tell them because there might be something they can do other than sedation so you do not feel hardly if anything so try and not let your imagination run away with you as I know it tries to

I had a nodule on my lung they found it before my Bypasses never bothered to tell me then a year later I got a letter they needed to check it that it had not grown well you can imagine but luckily it had not bit I made myself so ill with fear

They say they have found a small abnormality in your right kidney now the chances are they may not be concerned but if they were not to follow it up then something did go wrong then they would not be doing their job but remember they have said small like they said I had a small nodule

So please keep feeling good how well your Bypasses have gone and take each of these other things as they come and if you can get through a Double Bypass and recover so well I know you will deal with this to :-) x

momander profile image
momander in reply to

Thank you so very much!!! Your post really does mean the world to me right now. Everything you have said is true. My heart condition is unfortunately genetic, and my cardiologist refers to it as really bad luck!! He also said to treat the good news as breaking the curse!! Thetevare no more women on mynside of the family and so I'm hoping it all ends with me!!?? As for the other stuff I would be lying if I said I wasn't worried about it!! as I an!! When the surgeon who wrote the letter said " I would ask you not to be alarmed at this stage" my first thought was that was a lovely thing to say!! then I thought it was probably something that health care professionals are very well rehearsed in saying!? then I thought " at this stage"?? My mind is thinking all sorts!! I can't change any of it and I can't change what will be either!! What I can change is the way I deal with it and process it!! A friend if mine has been through such a lot of her life and is now having treatment for cancer that was found early!! Her response to everything is " I just get on with it" Amazing !!!

in reply to momander

Hello :-)

I have a friend that says what will be will be we can't change it and think how on earth do you think like that but if only I could to as I am like you

I think by saying don't be alarmed at this stage to me makes me think they are not so telling you not to be because if I am honest I have never had a letter sent saying that

But you have to try and rein this all in not easy and I am sat here pains in my stomach thinking about Thursday as I am agoraphobic to start with s just even trying to get me there is a work of art and then the bit I hate to is even when you have managed it waiting for results so it seems a long time from start to finish when you are a worrier

But even though the gallstone procedure might not be pleasant but won't last long and then you can cross that one of

The kidney they sound like they are not worried and even and it is an even something was slightly wrong would be something they could sort

You should be celebrating the heart was the main thing these other things well they are a nuisance bit the main thing you have come through really well :-)

We are stronger than we think just sometimes are imagination can work overtime

You have got this a day at a time you have the scar that shows you are a survivor and you will continue to be one :-)

Let us know how you get on :-) x

momander profile image
momander in reply to

Once again you lovely person!!!! Just thank you!!!

in reply to momander

:-) x

1234_6 profile image
1234_6

Hi MomanderI've no similar experience to share with you but wanted to say Congratulations on your heart recovery progress, and to reiterate BeKind's message/s in saying please try not to worry. It's hard to switch off from our worries when things are unknown but once we know what we are facing it is often possible to find the extra courage to face it and get through. You've done it with your heart issues - so you know deep inside that you can do it again. While you wait for the new tests & treatments try and concentrate on keeping yourself as well as possible, & maybe ask Dr what you should be eating or avoiding so as not antagonise those gallstones & to aid keeping your kidneys healthy - if you don't already know.

I wish you all the best.

momander profile image
momander in reply to 1234_6

Thank you very much for taking the time to reply 1234_6

dunestar profile image
dunestar

I have experience of having CT scans for a nodule on the lung which they are keeping an eye on. When they do the scans they often find other things which they then have to investigate. At one point I felt I'd taken up permanent residence in the hospital. I certainly had frequent flyer status. But everything worked out OK.

Cee-Cee1 profile image
Cee-Cee1

Hi Momander, first of all many, many congratulations on such a positive result from your heart surgery. I remember that Cloud 9 feeling leaving the hospital after my assessment six weeks after my triple bypass in February last year. I'd had an ECG first that day, followed by an x-ray to look at the how the wires were settling in, then downstairs to meet with the surgeon. He was able to look at the results of both immediately on his PC and I remember he actually punched the air and said "YES - ABSOLUTELY PERFECT!" - but he also told me I'd have to be careful as they hadn't been able to use my coronary artery as it wasn't good enough and my 3 bypasses were all veins harvested from my leg - the "very careful" bit was the only thing that stayed in my head once I got home again and I had to keep reminding myself about the "absolutely perfect"! 🙂 (Apparently coronary artery is sort of the 'gold standard' one to use). It's still early days for you post surgery and things WILL get even better.

I'm sure you must be worried about the latest letter, but you've come through a lot with major open heart surgery and you've done really well in your recovery. Every day is one step forward and you'll get through the next difficulties and procedures in the same way. As my wee Mum used to say "one day at a time" - you'll get there. Carol x

momander profile image
momander in reply to Cee-Cee1

Hi Carol,Thank you so much. Tou are I e of the lucky o es ro have had a 6 week assessment. To have an ECG then a chest x Ray THEN actually see your surgeon!!! I got discharged with no post op advice having never seen my surgeon!! 12 weeks later I fot a phone call from a member of hos surgical team who merely asked me how I was then discharged me back to the cate of my local hospital and GP

It must be a post code thing!? I wish I had had this experience. I saw my cardiologist on Monday who is lovely but the surgeon who did my bypass is a friend!! So had to be careful what I said!!!

Cee-Cee1 profile image
Cee-Cee1 in reply to momander

Yikes - I bet you had to be careful what you said! 😜 I didn't realise that not everyone hadn't got to meet with their surgeon - that's awful! I had so many questions and the assessment really made me feel reassured. So, yes, I definately really was one of the lucky ones Momander, the surgeon and his team who looked after me were truly amazing, and I don't just mean with their tremendous skills. It was all first names, popping in and out for a yarn a couple of times every day, both pre- and post-op, and no standing on ceremony if you know what I mean and their friendly attitude really made me feel safe in their hands. My appointment that day was actually meant to be with the doctor who assisted with the op, but the surgeon was passing the office, heard my voice and popped in for a chat! They were locums too, and brought in to the hospital as they were short of surgeons during that time. I live in NI and think this type of six-week assessment is fairly standard here. Although, one of the girls I was in hospital with had her op performed by one of the hospital surgeons and last time I spoke with her she said her six-week assessment had already been put back twice (6 weeks each time) - I don't actually know whether she ever got to have it.

momander profile image
momander in reply to Cee-Cee1

Wow that sounds like such a lovely experience you had and what we all should have really!? My experience was the surgeon sitting at my bedside telling me all rhe risks and complications then I signed to give permission!! I saw him 3 days later when he shouted to my bed from the nurses desk!! Apparently that is his way!!! He told me my operationn was a success and there were no complications!!! I never saw him again!! At my 12 week follow up appointment I didn't get to speak to him?, one of his team phoned me!! I was asked how I was then discharged from the care of that hospital to my local one!! I'm not sure where you live but I'm in Scotland. I'm very grateful for the operation but the after care was non existent.

Cee-Cee1 profile image
Cee-Cee1 in reply to momander

I live in Country Antrim in Northern Ireland, Momander, but as I say, I think (but I'm not entirely sure) that the after-care procedure I received is fairly standard here - although doesn't always happen. I think I was lucky in that I sort of 'bonded' with the surgeon when he came to introduce himself and explain the operation. We shared the same slightly macabre sense of humour, various authors and old classic 70's cars etc., (despite our age difference!) so we'd always plenty to talk about and I also think this also enabled him to have a little break now and then from his very demanding job - they were performing long surgeries twice a day. If I'd had the experience that you received I imagine I would have been left feeling confused and needing some further reassurance at least! I was discharged at the 6-week assessment back to my GP's care.

marypw profile image
marypw

I had an ERCP to get the gall stones out and I totally freak out about having anything down my throat, ever since I had a throat swab about 50 years ago. I insisted on sedation and it was absolutely fine - you really must insist they knock you out! I had mine done at University College Hospital in London; my local hospital doesn’t do them.

Long story short I had my gall bladder out with a keyhole op, a week or so later. In the meantime, please be careful to eat a very low fat diet - you don’t want to get a gall stone stuck - it hurts.

Smitty1956 profile image
Smitty1956

Hi, Momander,

I am so happy to hear that you are recovering well from double cabg surgery. That truly is a major win! 🏆🏅

I have been living with gallstones since about 1997. At that time, I had two young children, was in graduate school full-time, and had a part-time job. I didn’t have health insurance so I felt that I could not afford to have gall bladder surgery because of money or time. I was having “gall bladder attacks” which were incredibly painful. What helped me to keep going was drugs like Zantac and later Prilosec. I am embarrassed to say that I have never had that surgery, and I still take prescription Prilosec. I can understand completely that you are afraid of the gall bladder surgery, but it will end up being much better than suffering with gallstones or staying on the meds like I am doing. Perhaps you could talk with your doctor/surgeon and they could provide some level of anesthesia that would allow you to not be awake or totally aware of the procedure. That might help. I wish you much success for this surgery.

Like BeKind, the doctors found a nodule on my lung during a test (x-ray and CT scan) when I had my HA in March 2022. Next week. I am having another CT scan to check on whether it has changed over this past year. Of course, I am scared to pieces about this. I have still been having issues with breathlessness and that is why I am having it checked. But I get confused with it, because the difficulty in breathing is also a symptom of anxiety, and I tell myself that maybe I am only having panic issues.

I do understand that you are afraid of all of this, and I know that it can seem discouraging. You “fix” one thing, and it feels like two more pop up. But you have made progress in your health—you had the double cabg, and your doctor says that you are recovering well. Big win!

I wish you total success in sorting these medical issues. By the way, when I read the words, “at this stage”, I thought that the doctor just meant at this stage of checking everything out. I hope that makes sense—like s/he was just saying we are at the beginning of learning about all of this.

Best wishes! 😊❤️

momander profile image
momander in reply to Smitty1956

Thank you for your lovely reply The people thst have replied have been so li d and also so helpful. Yesterday was just a massive shock that I did not expect and was nit prepared for!! This was a trial where patients are picked at random to have an MRI to see if gall stones are In the bile duct!! I'm trying to think positive in that if I hadn't had the MRI I wouldn't know there had been something found on my kidney!! or thst stones are in the bile duct!! The good news is I got a phone call at 6pm last night and it was THE SURGEON!!! he told me that his secretary had told him he HAD TO phone me back as I was so upset when I phoned earlier!! He was such an amazing guy!! So down to earth and not at all clinical. He answered all my questions and tried as far as he could to reassure me. I've just had such bad luck for the last 3 years and I just want it to be at an end and for me just to live my life peacefully and quietly!!! I feel so guilty saying this as I know therecare many people living with dreadful conditions or with children who are sick!! I'm a good person and I just want to continue doing what I do best, and that is ( as a therapist) helping others. I hope I get thst chance

Smitty1956 profile image
Smitty1956 in reply to momander

it sounds so positive to me that you could be part of a study that has caught everything so early. That seems like such a positive thing!

And your surgeon sounds just lovely—taking time to answer all of your questions and to reassure you! That is definitely another positive. My eye doctor/surgeon did that for me before cataract surgery. I have anxiety disorder and an eye phobia so I wasn’t sure that I could go through with the surgery. I wanted to talk with someone to answer my questions, but mainly to calm and reassure me. My doctor took the time to call me, and he was lovely in dealing with my issues. Now, I am happy that I had that surgery.

I hope that your surgeon was able to calm and reassure you! I do know what you mean about living your life in peace ☮️. That becomes even more important as we go through health problems.

I’m sure that you do help many people, and that likely makes you feel happy and productive too. I certainly hope that all works out well for you, and that you can continue to help people for many years to come! 😊❤️

As Fred Rogers said, “Always look for the helpers.”

Cee-Cee1 profile image
Cee-Cee1 in reply to momander

I'm SO glad you got to speak with the surgeon, Momander - it's brilliant to finally have some questions answered and he sounds like a really lovely down-to-earth guy! It makes all the difference dealing with someone like that 😀👍

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