Getting Worried

[Gog40]

After 6 months saw my surgeon re my heart Bypass operation in May. Told me I was a priority bot also needed Aortic Valve replacement and possibly an Aneurism as well as the Aortic Root is ballooned. Possible surgery in June or July after 2 weeks in isolation at home. But I need a CT Aortogram first. Just phoned the LGI Hospital and they say the request for this has not even been looked at yet as not a priority. Starting to lose hope and getting fed up of having call 999 and go to A&E when my angina doesn't stop. I have an assigned Cardiac Nurse now too who also chased my appointment without success as my Aneurism itself is not life threatening.

[Hidden]

Feel for you - my heart failure diagnosis is slightly different from yours, but it is interesting how one surgeon or cardiologist says you need to be dealt with sooner than later or urgently, only to find the actual surgeons in the heart operating theatres have a different take on your situation.

I think the truth is, we may be considered as critical by our local hospital, cardio clinic etc, but not so with these regional places that undertake OHS, who have intakes from 3,4 or 5 counties, let alone hospitals.

I've given up getting excited now, especially as Covid 19 as decided to hang around for longer than hoped and cause extended chaos and a need for beds to be kept on standdy for a second round of infections.

[MichaelJH Heart Star]

Hi... I would suggest you ring the surgeon's secretary. He carries more weight than a nurse when requesting a scan or similar.

[Gog40 in reply to MichaelJH]

Thank you, good idea. Think I will ask if I can be reassured I can wait much longer than expected or if the scan can by prioritised.

[Gog40 in reply to MichaelJH]

Thank you so much. That worked a treat. I phoned the secretary on Monday and today Tuesday she confirmed I have been upgraded to Priority for the scan and should have it in 2 to 3 weeks. I am so relieved (well until my op is very near, but it has to be done and I want my life back to normal).

[MichaelJH Heart Star in reply to Gog40]

Been there, got the T-shirt! Glad it worked. 😃

[Hidden]

Totally agree with connecting to secretary, I was able to get updates over time, which gave me a little more certainty & I was also able to tell her what in my life had an impact eg losing my job! The secretary may also be able to influence the scan date, or know to chase it up if the surgical window looks promising. For me, I couldn’t meet with surgeon till after all scans were done, so it might be hard to find the right secretary, worth persevering.

I’d also suggest asking if / when your case might be put to / reviewed by any “multi-disciplinary meeting”. I found out after mine, that this is a key step in many decisions over treatment & timing. The relevant specialists gather, sometimes only once a month, to hear about all the cases on the books, agree the treatment across departments and decide rough priority, I believe. I think this is how they balance the need for different surgeons if needed. Not sure was relevant for me (ASD closure and patch of some misdirected veins, all by one surgeon) but yours sounds like might involve at least opinions if not hands-on from very particular specialism(s).

Good luck.

[Gog40 in reply to Hidden]

Thank you very much. I had already had all my tests Januray to March. Then referred for my Bypass beginning of March. Then the lockdown. I was first to be seen by my surgeon on May 28th. Told me he wanted to operate ASAP but he found my Root Aorta is ballooned so need an extra ECHO and CT Aortogram and it seems I need an Aneurism at the same time. He was aiming to operate end of June / July. Having my Echo soon but Urgent and Priority CT Aortograms are all in front of me and no signs of even being assessed for mine for many weeks at least. I feel to have started all the long waiting all over again as my Aorta is not at risk of bursting but may have to be replaced to replace my Aorta Valve which needs replacing for my Triple Bypass (which is a priority). Feeling frustrated, but I am phoning the surgeon's secretary tomorrow and I have her name & telephone number.