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up a blind alley

Posted , 3 users are following.

xtine
xtine

After discovering I had an ascending aortic swelling of 4.9 on an echocardiogram in May this year the cardiologist (The original investigation was for infrequent  tachycardia and AF breathlessness - for which the echo was done) .referred me to his colleague (B) who he said was an expert on ascending aortic aneurysms.

2 months later I saw (B) and three months after that got an MRI since then I have only received a three line letter from cardiologist (B) saying it was 'encouraging news as it was stil 4.9cms'. With no follow up appointment.  It seemed like a standard letter for ongoing monitoring. This is in Leeds in the UK.

I was then phoned and written to by hospital for an appointment last Friday. I naturally thought it  was to do with the aneurysm which, as you will all appreciate, has been uppermost in my mind. But the appointment was with Cardiologist (A) just a routine 6 month check up!! He had no information on the MRI scan and unless I wanted to be fitted up with a heart monitor to see if I had any signs of AF he knew nothing else.  

When said I had not heard back from his colleague except the three line letter and I was very worried as I have no treatment plan I was reprimanded and told that their Cardiac Unit for genetic conditions was the best place to be and they treated loads of women like me.

I feel quite upset. I will see my GP this week. It has been my GP who instigated genetic testing as I don’t have any of the other conditions that would explain the aneurysm which will take 4 months.

I don't want this to be a drama - complaints etc etc - having said that 4.9cm is big. That is the last thing I need.  In my notes it was discovered that it was 4cms in 2013 but it was not recorded on computerised notes so neither GP nor I ever knew this. I think what is upsetting me most is not feeling cared for or listened to by the hospital and that is causing me some stress which can't be good.

I'd like some advice on this. What do you think I should do?  

0 likes, 11 replies

11 Replies

  • sandy_58684
    sandy_58684 xtine

    Posted

    I’m sorry that the situation is causing you stress. I found an article which stated that studies show that 40% of aneurysms rupture at diameters less than 5.0cm. It was that, along with knowing that many now recommend that women have surgery at 5.0cm (not the standard of 5.5cm for men), that led me to request surgery sooner rather than later. I also had tachycardia, AF and breathlessness prior to my surgery. My original doctor wanted me to return in six months (Feb 2018). I sought additional opinions and had my surgery October 9th. I’m doing great and feel back to normal already. I submitted a saliva sample for genetic testing and should have the result this week. 

    The same article with the statistics above mentioned that exercise and emotional events are triggers for a rupture, and yet I’d been told to exercise. I’m glad to be alive! I know your medical system is very different but can you press for more frequent followup, or the surgery if you feel ready?  I didn’t want to delay for all the reasons above, plus I was otherwise healthy and after having had two different cancers, I didn’t want to have another shoe drop. 

    • xtine
      xtine sandy_58684

      Posted

      thank you Sandy. Was it ever suggested that your tachycardia and breathlessness was linked to your aneurysm?

      I have had blood taken for genetic testing it will take 4 months - they are looking for up to 25 genes.

      I guess you are in the States?

    • sandy_58684
      sandy_58684 xtine

      Posted

      Along with the aneurysm, my aortic valve was leaking, which made my heart work harder/inefficiently. My surgeon believed that my valve would be okay after the aorta was repaired, and that was the case, thankfully.  My heart rhythm is nice and regular now, and I don’t get out of breath going upstairs in my home any longer, so I have to assume that the aneurysm was the cause of all symptoms. 
    • roy72611
      roy72611 sandy_58684

      Posted

      Hi Sandy. Male 70 Uk. I have been in persistent AF for nearly two...luckily i have no symptoms that effect my quality of life....however i was recently had a CT scan simply to check my heart structure. All was ok EXCEPT my ascending Aorta was measured at 5cm. What isn't known is whether its been that size for sometime or indeed for years. I am due another CT scan on the 3rd Jan 2018. (6 month since me last one) its a worrying time which obviously doesn't help. But it is what it is and i will take it day by day. I know my father back in 1966 died very suddenly of a faulty Aortuc valve. Cheers and have a very merry Christmas and good New Year. Cheers Roy

    • xtine
      xtine roy72611

      Posted

      Hi Roy

      whereabouts in the UK are you? my symptoms are very similar to yours.I had an echo and MRI - CT hasn't been mentioned. My dad died similarly in 1978. At present the two cardiologists I am under seem to think the symptoms of my breathlessness and occasional AF aren't related to ascending aorta - but I'm not so sure. 

       

    • roy72611
      roy72611 xtine

      Posted

      Hi xtine.

      I live in Lancashire and my hospital of choice to deal with my Aorta and my AF is the Liverpool Heart and Chest hospital. The Aorta Dilation was picked up when I had an echocardiogram as a routine thing for my AF, funnily enough my heart structure is fine considering I have been in persistent AF for near on 2 years, I am lucky my HR is pretty much normal.

      Well,,. I will clarify that, its not normal for me but its normal if you use the range 60-100 HB/M rule. I am due another CT on the 3rd January to compare the grown of my Aorta diameter(if any) with the echocardiogram I had in July this year. When we know the answer a decision will be made in relation to the treatment. We never know what is around the corner in this life do we. Cheers Roy

    • xtine
      xtine roy72611

      Posted

      I think you are in the best place. If I have to have surgery it is where I would want to go. keep me updated. And no we don't! We must do our best to sort it and keep cheerful.

    • roy72611
      roy72611 xtine

      Posted

      ok. Will keep in contact. Take care and Merry Christmas and i hope 2018 is a better year than 2017....although we are still here kicking. All the best. Roy
    • sandy_58684
      sandy_58684 roy72611

      Posted

      Hi Roy,

      I'm sorry about your father and I'm glad your next scan is coming up soon! I understand the worry of the watchful waiting. In my case I met a couple of criteria for surgery, and with surgery being inevitable anyway, I decided to do it while still young and otherwise healthy. Having gone through surgery for two different cancers, I kinda live with the presumption that another big health situation is just around the corner at some point or another. My surgeon agreed that the aneurysm could be a contraindication or caution if another type of surgery was needed. When I expressed concern about traveling and not being able to get to a top surgeon quickly enough to avoid death by rupture, he told me that if I had a rupture in his operating room, I would die. There were just too many reasons for me to not wait. Reading that 40% rupture under 5cm and I was already at 5.3cm, plus the diameter already being twice that of the rest of my aorta (a criteria for immediate surgery), I wanted to get it over with. I'm so glad I did! I am feeling so good now physically and am so relieved....life is so much better now than it was while I was waiting for my surgery! I hope you have a merry Christmas too...try to put the worry aside and enjoy this season.  Sandy

    • roy72611
      roy72611 sandy_58684

      Posted

      Hi Sandy. Thanks for your reply. So glad your surgery went well and you're on the road to normality agaìn. I hope I will be in a position to make a decision in the early part of the new year. Thanks again and Merry Christmas and have a great New Year. Roy

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