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I had a ruptured AAA aneurysm, anyone else?

Posted , 33 users are following.

james99024
james99024

I do not hear much from people who survived a ruptured AAA aneurysm.  Are you doing fine now?  How was the experience of getting all that blood out of your stomach?  Did you have trouble bending over and picking things up for a while?   Did the pools of blood in your belly cause you to have weird pains?  Can that dispersion cause blood clots later on?  After 6 months are you feeling normal again?

2 likes, 76 replies

76 Replies

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  • 68survivor
    68survivor james99024

    Posted

    Hi James.....Well done in surviving a ruptured AAA! The sad reality is that not many do, only a small percentage. You must have the luck for it to happen close enough to a competent Vascular Surgery Centre and within the window of time before internal exsanguination. The repair must have been "open surgery" with you being in a fairly fit state to survive! Again well done!
    • james99024
      james99024 68survivor

      Posted

      Thanks 68survivor.  I was extremely fortunate - What if I was on a train or plane or cruise, in a foreign country, or got misdiagnosed with kidney stones.  Fortunately,  I was within 20 minutes of a hospital that deals with heart issues.  When they took me in to the operating room, they did not know if they were going to do "open surgery" or EVAR.  They must have felt they have me stabilized enough with transfusions that they decided to go EVAR.   I was in ICU for 9 days.    For those who have aneurysm that are reaching the danger zone, stay close to good hospital.  You will not have much time.
    • carlene18133
      carlene18133 68survivor

      Posted

      Hi James

       Well i am also a survivor as of three weeks ago. I am  a 1% survivor,being a female at almost 74, I had the same back pain which taking a shower did not help. Then the pain went around to the front right groin area, I finally drove myself over to the clinic before i went down, I owe my life to the Drs who operated on me, which i get to meet one Wednesday. Carlene in Everett,cryWashington

    • lee333333
      lee333333 carlene18133

      Posted

      i am a 1% survivor as well. would love to know more about how you are doing now and your prognosis.

      lee

  • 68survivor
    68survivor james99024

    Posted

    Really good to hear that James! The proposed national monitoring of at risk groups might cut the risk, but we all need a bit of lady luck as well. I hope you go on to "live long and prosper" as Spock would say.
  • frankorcase
    frankorcase james99024

    Posted

    Hi James I also had a ruptured AAA in May 2012. How long since you had yours? Almost three years on I'm near as normal as I'll ever be.i walked six miles this morning. I was just browsing and came across forum. Like you I haven't met any survivors either. If you have any questions you would like to ask me on forum please feel free to do so. It may be a long road , just count yourself lucky to be on that road
    • james99024
      james99024 frankorcase

      Posted

      Hi Frank,  I am so glad to have found someone who is a survivor of a rupture. I had my rupture in the middle of May, 2014. Now, I am doing most everything that I did before the rupture. This summer I was able to golf, but had real problems bending over because of all the blood in my belly.  I bought a bunch of handicap equipment like magnetic tees and ball grabbers to pull the ball out of the hole. It helped a lot.  I go on 3 mile hikes in the woods every day with my wife and 2 dogs.  I really enjoy that.  I also retired from work this last summer and I really enjoy that.  The only thing I can't do is run like I used to.  I used to be able to run 4 or 5 miles comfortably. After the rupture, I run a quarter mile and walk a quarter mile and I do that for about 3 miles. So, I do not have the endurance I used to.  I wonder if the stent prevents the blood circlulating to my legs like it used to.  Anyway, it is no big deal -  I am running and that makes me happy.  The biggest problem I have had is all the blood in my belly.   It has been over 9 months since my rupture and I still have a glob of blood the size of a baseball in my belly.  It seems to roll around in there giving me side aches, sometime scaring me.  But the aches aways goes away.  So, all is good.  I am looking forward to golf season in about 2 months.  Let me know some of the issues you ran into.  Are you getting an annual cat-scan now?  Thanks again, you have inspired me.
    • frankorcase
      frankorcase james99024

      Posted

      Hi James you are doing very well 3 miles a day! I'm impressed . I wouldn't have been able to run at that stage. Then I was never really a runner so it didn't bother me i do have weakness in my right leg I was just glad to be able to walk. I don't know about blood/baseball didn't have that problem. What did surgeon say about it? I had kidney failure after op as they had to shut off blood supply to them. Was on dialysis for a few weeks after op luckily they kicked back in. Have to do blood tests every six months. My surgeon/angel who saved my life doesn't want to do ct scan too often 18 months in case it affects kidneys so what he says I do.

      I never played golf and coming from the same island as Rory McIlroy Padraig Harrington and Darren Clarke I don't know how I managed it but ther you go

      Great to be able to relate to somebody who has been through the same ordeal I think we are fairly thin on the ground

      By the way I was 53 when it happened aneurysm was 9 cm

      Look forward to hearing from you

    • leonard38920
      leonard38920 frankorcase

      Posted

      Hi frank

      I had my bad luck on the golf course,but was playing with a paramedic who called an ambulance in hospital in Brighton they were waiting for me

      All I can remember was someone cutting all my Clothes off and waking up two days later that year was 4 years ago I am now 77 play golf 3days a week with (buggy) down side lost so much strenth.

      Also very large hernia in stomach 

    • niall42088
      niall42088 frankorcase

      Posted

      Hi frankorcase,

      Hope you are fully recovered.

      Sounds like you are from the emerald isle...me too. Had a ruptured AAA 5 weeks ago; 10 cms, airlfited to Galway University Hospital for emergency surgery.....symptoms - lower back pain for 3 days prior to rupture, then excruciating pain for about 30 minutes followed by near pass-out before ambulance arrived. Slow recovery...very low energy. Lucky to be alive!!

      Would love the hear from you.....

    • sherman_15588
      sherman_15588 niall42088

      Posted

      7/13/17 9cm rupture that is big all are lucky to be alive as long as I don’t experience that again. Am in California pain to pass out from for sure. Airlifted to Sacramento no hospitals available in my area. Hope your recovery goes quickly. My strength starting to come back now.  Pain in lower back worries the hell out of me. Nice to know others survive. 
    • frankorcase
      frankorcase niall42088

      Posted

      Hi Niall

      It’s been 6 years on 6th of May since i had rupture and glad to say I’m very well.  You are a lucky boy to be emailing today. I’m in West Limerick. Where are you based .I’ve been to UHG a few times. Who’s your surgeon? 

      It’s a slow process getting back to normal but take it easy I do quite a bit of walking just build up slowly and rest when you are tired. Keep in touch and best of luck with your recovery 

      Frank

    • niall42088
      niall42088 frankorcase

      Posted

      Hi Frank,

      Thanks for responding. I am in Donegal, Letterkenny to be precise. Hats off the the A&E team at Letterkenny General for getting me stabilised for helicopter journey to Galway. Surgeon in UHG is Professor Sherif Sultan, a genius. I see him again in about 2 weeks. 

      Did you have open surgery or EVAR? Mine was the latter; just starting to walk a bit now; I guess that is key to recovery.

      All the best

      Niall

    • frankorcase
      frankorcase niall42088

      Posted

      Hi Niall 

      Sorry I didn’t get back to you sooner but I was on holiday and I neglected my emails data protection. Was wondering why I didn’t get any notification from patient. Anyway I hope this find you fighting fit and enjoying the lovely weather. I had open surgery. The reason I asked you about surgeon is the man who saved my life now works in UHG but he is Irish.

      I look forward to hearing from you.  Frank

    • niall42088
      niall42088 frankorcase

      Posted

      Hi Frank,

      Thanks for responding. I'm afraid I too have been somewhat remiss in dealing with e-mails.

      Since my last message, I had a setback in my recovery; as I indicated I had EVAR surgery - they went in through both groins to repair the aneurysm. Eleven weeks into the recovery, I got a nasty infection in one of the wounds requiring a 3 weeks hospital stay, 2 minor surgeries to drain an abcess and daily IV antibiotics to kill the infection. I had a VAC drain in for 6 weeks for wound healing / management; that was removed 1 week ago today and, thanfully, I am well on the road to recovery again and feeling great....walking up to 4km per day, drinking up to 4 litres of water per day and have lost a significant amount of weight in the last 4 months.  

      Needless to say, this whole thing has been a life changing experience for me. My wife and I have just spent the long weekend in her home place in southwest Donegal; it's raining today but we have had fantastic sunshine for the past 3 days. We have spent the time taliking anout our plans for the future.....it's now time to close one chapter and move on to the next.....I am reminded of a quote from Oscar Wilde - "To LIVE is the rarest thing, most people exist; that is all".

      Hope all is well with you

      Niall

    • frankorcase
      frankorcase niall42088

      Posted

      Hi Niall 

      Great to hear you are doing well after your setback. If you’re on Facebook there is a group called 

      Aortic dissection uk buddies which covers all problems with aorta in UK and Ireland which may be of interest to you. 

      Regards.    Frank

    • bennie85818
      bennie85818 sherman_15588

      Posted

      Hi Sherman,

      I had a similar sized rupture back in 2011 and I remember having residual pain for about a month, and then it went away and I haven't had any issues since. I think it has to do with the body's ability to absorb and eliminate all the blood left in your body from the rupture. It took about 6 to 8 months for the strength to get back to about normal, but much longer for stamina to return. I think some of that is probably the fact that I keep getting older. In any case, I hope your recover continues well and you get back to normal activities as soon as possible.

      Best regards,

      Ben

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