The team at Liverpool heart and chest hospital talked about me at a MDT meeting last week and I still haven't received any updates. They arranged for all my scans to be carried out a few weeks previously.
I have called the hospital asking for updates and the only information I have been given is I will receive a letter in the post and they are sorting out genetic testing.
I originally had an appointment to see surgeon on the 2nd October but they cancelled this as they wanted to have the MDT meeting first. 😪
I was from March scans 4.8cm ascending aortic aneurysm and BAV with family history.
I am now in pain with lower side backache and after seeing GP on Friday they have given me antibiotics as they think it's a kidney infection, and to see them again in a week if not improved. They also don't have my results as the computer systems don't talk to each other.
I feel in no man's land not knowing anything or what the plan is next.
I was hoping they would say I'm going to be operated on soon. My life and work is just permanently on hold and I want it back....
😪
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Safeangel
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I’m sorry to hear your operation has been cancelled. I have previously been discussed in a few MDT meetings at my local hospital. During these meetings they will discuss your case, current and future investigations, and your treatment and care plan with other physicians to ensure that you are getting the right care and that they all unanimously agree. The operation may have been cancelled because they want to try other methods first which are perhaps less invasive. I know that doesn’t help as you’re in a lot of pain. I usually got a letter regarding the outcome of the MDT meetings within a week or two. Don’t think you have been forgotten about, there could just be some delays due to rising cases again in c*vid.
Any time you’re in doubt regarding your symptoms, you should call 111 or contact your GP. Please don’t sit there worried and scared whilst you’re in a lot of pain. It’s always wise to contact a medical health professional. I understand your worry, but try and keep positive. I would call the department again on Monday and explain that your symptoms are severe and are not getting any better to see if that speeds things up. I know you have made a few attempts already. If you still have no luck, you do have the option of using PALS at your local hospital x
Hi again, SA,Sorry to hear you're going through it again. Things were looking really good with the referral to Liverpool. I suppose it's natural to want to just have it all over with. Hang in there, it'll happen.
One positive thing is that they have reviewed you at an MDT. This is absolutely the best thing, so in that respect you are being well cared for. Unfortunately, appointment cancellations and delays are par for the course these days, though my suspicion is that had they seen anything of urgent concern then you would be seen more quickly. Yoy could always drop the surgeon's secretary an email asking when you will have a new appointment.
The lower back pain is a bother. I hope the antibiotics work but don't let this go on if they aren't resolving the pain. As others have said, GP or if difficult to see, then 111. I've found 111 really useful at times as they have access to your records, they go through a thorough triage, and if needed can put you in for being seen at A&E quickly so you don't have to wait and go through it all again.
As rehards the day to day while waiting, just find a few simple light things to do that will take your mind elsewhere. Letting it spin round your head makes things feel worse. I don't know what you love doing but I'm sure there's something. Just the act of getting up from the chair, going to do something, helps to break the rumination trap.
I hope it gets resolved soon for you. Thinking of you!
Hi Safe angel I am in exactly the same place as you, with a 4.8cm ascending aortic aneurysm. At present being monitored at Liverpool Heart and Chest hospital the aneurysm was identified in 2017 and to some extent is more or less still the same size now . I also have a bicuspid Aortic value which has moderate regurgitation. I don't have any symptoms at all. When the diagnosis was first given in 2017 I worried and constantly thought about it. I am now more relaxed about it. I originally was monitored on a 6 monthly basis, that has now changed to 12 monthly CT and Echocardiogram scans followed with an appointment with the surgeon to discuss the results. They will consider surgery if the aneurysm grows between 5cm to 5.5cm. We are both lucky to be monitored by LHCH they really do know what they are doing, it is major surgery but to the team at LHCH it is just part of their daily routine and very much their bread and butter. Try not to focus on the condition and carry on with life, don't waste today by worrying about tomorrow. Let the team at LHCH look after you. Good luck. Roy
Thankyou Roy for replying. Can I ask which consultant you are under. I do try not to worry but I guess it's the not knowing the results of the last set of scans. I don't know if it's the same size or if it's grown.
The surgeon told me in September that I would likely have surgery before Christmas but know I have no idea if that's still the plan after the MDT meeting.
I used to be quite sporty but since the diagnosis I haven't really done much sport as fear has set in.
The fact I have been removed from front line policing has affected my mind set doesn't help either.
I just want to know the next plan of action.
I know we are the lucky ones and I'm under one of the best hospitals.
I live a good 120 minutes away from the hospital and fear if I ruptured I would be in a bit of trouble.
Everyone tells me I will be fine and I put a brave face on things but deep down I'm crumbling.
I've always been a glass half full kind of girl but that's slowly changing to glass half empty.....
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We seem to have lost something folks...
A little lost!
Lost and confused
Lost confidence
Feeling Let Down and Left In Limbo
