Care after aaa repair emergency

[81235]

Anyone like me had a repair ruptured aortic aneurysm I’m 6 months on and still get tired

[Athena-Heinrich]

I had emergency Type A aortic dissection a year ago (open heart surgery) not quite sure if youve had similar sugery .(if you go on aortic dissection page of Facebook youll find lots of peiple who have exactly what you have as its dedicated to the aorta) 6 months I was definitely still getting tired and needing a siesta . Good days and bad days. Also some drugs or dosage can create extra tiredness. Now a year on I still make sure if I do activity I release afterwards, relax all tension and stress and rest. Good luck with your recovery.

[Cliff_G]

Hi, like the other poster, I had a thoracic aortic dissection, but the two have a fair amount in common in terms of what the body goes through under an operation. It's taken me a long time (3 years) to start feeling like I have some energy again, but (a) I had a really challenging case and (b) I have had to play around with the drugs I am on, which took nearly 3 years to get right.

One difficulty I had was knowing whether how tired I was feeling was due to my dissection and the op or the pills. Turns out, a lot of it was the pills, and in particular beta-blockers and statins. The first gave me general tiredness and lethargy, the statins gave me what I called jelly legs. After a long process I am now on an ARB for blood pressure (plus others) and a non-statin alternative for the cholesterol. Some of this may be applicable to you, they do tend to put you on much the same cocktail. Worth talking to your doctor, that your quality of life as you are is very poor

But also, 6 months especially after an actually ruptured AAA is not a particularly long time, and you will improve. You would not qualify for Cardiac Rehab classes as you don't have one of the qualifying things, such as a bypass, but you would benefit. I found mine extremely beneficial. BHF have done an on-line version of cardiac rehab so have a look at their web site.

Good luck

[SuZuS in reply to Cliff_G]

Hi Cliff, Your story sounds similar to mine.

While they believe I have had (2) small, in fact one doctor even called second one trivial, AD’s, I am on all the meds that you are on and then some (6 currently).

I had a type B abdominal aortic dissection in July 2018, and a thoracic aortic dissection May 2020, but classified as a type B, too.

Small, focal, and not propagating.

Fortunately for me, while they were extremely painful events, there was no need for surgery either time, other than a stent placed in my right renal artery for very severe stenosis discovered via CT scan of Chest, Abdomen and Pelvis, December 2018.

(Yes, it took them quite sometime to figure out what the heck was going on with me).

But more importantly, I was also diagnosed with Large Vessel Vasculitis and put on the immunosuppressant Actemra, January 2020, as well as a 16 month slow taper course of prednisone that started June 2019.

The gaps ??? I was very reluctant to start all these medication’s... Long story.

Fast foreword to today.

I am doing pretty well now .

Monitored closely with labs monthly and scans every six months.

BP and HR well controlled. Cholesterol excellent.

Kidneys and liver enzymes consistently stable.

All other inflammatory markers well under control too.

I am in no pain, nor have never been in any pain, except for the (2) AD events.

What I really felt encouraged by your story is that I was miserable for quite sometime too, trying to understand is it the condition, LVV, the “trivial” thoracic AD, the prednisone crazies ? the dreadful Beta Blockers,

or all of the above? Or was it ALL the meds combined ?

Not until we switched some of my meds and dosing, ie an ARB (Losartan 100 mg for now) did I start to feel less like a Zombie, meds interfering with quality of life…

So We went through quite a few …with several that brought on insomnia, feeling worthless and exhausted during the day, which subsequently was doing nothing for controlling my very concerning high blood pressure.

And I’m on highest dose of Statin Rosuvastatin, and I’ve had those jelly legs…

But mine begin in my hips and lower extremities, too, at times…Freaked me out for along time !!!

Plus I had this bizarre itching only in my left thigh most every night.

No doctor would ever tell me what May be causing any of this, and I was tested for everything…

(PS I’m on the statin because Actemra raises our cholesterol levels, therefore I had to go on Rosuvastatin, which I’m told is one of the more well-tolerated ones, otherwise I had excellent cholesterol control and low triglycerides all my life).

I also find the doctors don’t always understand what these meds do to us, when I would tell them these things, they just kind of look at me funny.

Clearly they just don’t know, and the wiser ones would admit this at times, and those are the doctors I like and tryst the most i.e. my rheumatologist.

It was me who kept asking, is there a different drug to try or a different dosage ? I was so constantly and consistently advocating for myself.

And I am lucky I am at age to do so as I just turned 60.

And I’ve been wondering if I should be wearing a medical alert Tag as well as you do, no doctor has ever suggested this to me.

My apologies for this being so long but indeed it was my rheumatologist who saved my life on the second A.D. it happened on a Sunday, Mother’s Day actually, and I miraculously was able to reach her, so she called the ER ahead of time to inform them of my condition so that they didn’t treat me for a heart attack or throw me into the Covid ward…

They knew exactly what to do upon my arrival, I was very scared, very alone.

My husband dropped me off, and that’s all he could do…

Which is another long story for another time.

Yet, through it all,

I have to tell you I am feeling so much more like myself again.

However, I do still FEEL the meds, but I’m managing.

I can’t do everything that I used to, and sometimes I’m not sure if that’s just abit psychological now.

I try to be patient with myself, yet I am impatient with myself.

I haven’t practiced yoga since this began and I can’t tell you how much I miss it but I get so worried when I feel the slightest of pain in my upper left chest above my heart…

Very discouraged by some of my doctors… lacking at times.

But I feel like I’m on the other side again 🙏

Lastly, 😀 which non alternative Statin are you taking now ?🤗

[Cliff_G in reply to SuZuS]

SuZuS, that's quite a journey. And I've never heard of an AD being called trivial.

I tried every single statin, all the same. Ezetimibe much the same too, but now on Bezafibrate 400 mg. It's not as effective as statins, and pharmacies are currently out of the 200 mg tablets I'd need to go to the maximum dose of 600, but I am getting no side effects at all.

[81235 in reply to Cliff_G]

Hi Cliff I had a ruptured aaa 7 months ago and returned to theatre for leg clotting off afterwards they managed to save my leg on apixiban bd daily I have returned to work last week for slow phased return after 3 hours I’m deflated sooo tired xxx🙈

[81235 in reply to 81235]

Was an open aaa x

[SuZuS]

Thank you Cliff, I’ll look into this. I sent you a PM as well. PS to all above, I get tired every darn day too.

I just give in to it, but I only give myself a half hour…

Adjusting some of the meds here and there has certainly helped, but only do so under your doctors care and guidance.

Your events were quite serious, be patient with yourself, I know how hard it is to do.

I wish all of you healing thoughts 🙏🙏❤️‍🩹❤️❤️