Facebook AAA Support Site

Hi! Folks,

I was just writing a post for the Chez Ollie, and then thought it might be good to provide the link here. For athletes with aneurysm issues, other great sites include The Cardiac Athlete and The Athletes Heart Blog.

Keep talking! It helps!

Cheers,

Kevin

Comments

  1. Laura Barrera says:

    I have two new clients – one that just had a heartattack in July with 1 stent and another that has 7 stents in her heart (has been cleared for exercise) and has an abdominal aortic aneurisym that is being watched but not stented. Do you have any suggestions or absolute no nos on what I should/could do with her or what I should not have her do for her safety.

  2. Kevin Morgan says:

    Hi! Laura,

    I am still learning a lot about these issues, as a result of my own AAA. Here are my thoughts, as of today, with respect to how you might advise your clients:

    1. It is critical to move beyond the associated depression and fear. We each deal with this in our own way, and there are many resources available to help us. I found that reading Lance Armstrong’s book, ‘It Is Not About the Bike,’ was very helpful as I was forewarned as to the process that I was about to go through, and inspired that one can get a life after dealing with such a serious health challenge (cancer in his case).
    2. Educate yourself as fast and best you can in order that you understand what you are dealing with and then you will know which questions to ask of medical and other advisers.
    3. Work on self-awareness, the state of which varies considerably from one person to another. I have blogged on this a little, but I can expand on any aspect you like as a blog post if you or your clients wish. Note, I am a Veterinary Pathologist at the end of a long research career, and I really enjoy researching things and educating myself, so it won’t be a hardship.
    4. Find a support group so that you don’t feel alone. This took me six months of blogging. After my surgery I was just told by my surgeon, who was great guy and saved my life, that I should just get on with my life and train easy at first – i.e. go from being an Ironman triathlete to being scared to death that I might kill myself by moving my stent during training (see my early blogs). To get your clients started on this see links I have posted on my blog to some great people and resources at Angioplasty.org (Burt Cohen provided me with remarkable emotional support by just by noticing me), The Cardiac Athlete, The Athlete’s Heart Blog (he is a really nice man, a cardiologist, and he looks so happy in the blog), and recently the site mentioned by another AAA-athlete (the first I found), Pauline, at Facebook. If you have trouble with these links, just let me know.
    5. Understand the underlying mechanisms of your disease, and find a way to slow, halt or reverse it’s progress. This is what Pauline thinks about a lot, I suspect, as she does not have a stent – see her comments under ‘About’ on this blog.
    6. Live in the now! Life is brief anyway, and we always have to make the best of things, and some things seem bad but turn out to be OK or even good – for me, having my AAA has led to some great experiences and caused me to be less focused on myself, for instance and to enjoy each day even more.
    7. Concerning ‘No Nos,’ in my early blogs I referenced some papers, one of which indicated that rowing is probably a very bad idea with a AAA-stent, and may well be ill advised for an AAA without a stent. We have to avoid excessive lower abdominal pressure surges, in the case of AAA. I am working on a list of things to not do, but there is very little advice for AAA. I haven’t researched this issue for cardiac stents, but I could.
    8. Get in shape to help with any potential depression and to improve cardiac, aortic and general health.
    9. Don’t give up! I don’t plan to. Talk to people. You cannot imagine how happy I was when Pauline commented in my blog. I was no longer alone with my condition. I had someone to talk to who understood.

    I hope things go well for you and your clients, and if you want me to reflect further on these issues, just let me know. Certainly advise them to train/exercise, but do it in a state of awareness (e.g. read ‘The Art of Slowing Down, A Sense-Able Approach to Running Faster,’ ‘The Power of Now,’ ‘Peace is Every Step,’ and books like that), sort out their nutrition (we are what we eat and it does affect our moods, as well as our lipid profile!), and watch out for escape pods that don’t work (alcohol, drugs).

    And of course find good physicians (read Bernie Siegel, ‘Love, Medicine and Miracles’ for some advice that I like on how to do that).

    I have no idea if that will help, but I hope it does. Please let me know how it goes, and give me feedback as I am still learning, myself.

    Cheers,

    Kevin

    PS Don’t underestimate the role of fear in recovery from these conditions. I describe how this was for me in one of my comments at Angioplasty.org, if I remember correctly.

  3. Pauline Watson says:

    Hi,
    I agree with what Kevin has written, but can also add a few comments from my perspective. I have continued to run and swim with an AAA, diagnosed almost 4 years ago. I continued the running only after discussion with my doctor, and I believe he acquiesced due to the fact that I had run at a very high level for 30 years, so it was not an undue strain for me. I had my blood pressure measured while running on a treadmill, as well (it went down). I would think that easy exercise would be preferable to intense work; I don’t push all out anymore, and always workout with a buddy, a cell phone and in close proximity to a good hospital. A medic alert bracelet is a recent (smart) addition. Athletes are generally pretty in tune with their bodies; it is good to pay attention to what is normal (gas, muscular pain) so you can recognize what is not. I have not hesitated to call my doctor if uncertain about what I was feeling physically.
    The person with many stents as well as an AAA – goodness me – one would think the exercise would initially have to be pretty easy, perhaps water exercising?
    Kevin’s comment about understanding the basis of the disease is good; I didn’t accept the “its just random, bad luck etc”, but asked questions until I found a possible link that suggested I have to reduce my cholesterol from what would be considered normal to extremely low – whether it will help or not remains to be seen, but taking some sort of action – diet, keeping as fit as possible for the eventually surgery, all help with the psychological stress.

    Good luck
    Pauline

    • HELLO PAULINE: Kevin and you are v. brave and an inspiration. I told him I would like to talk to some of his AAA buddies. I too am getting ready (sitting over these months on when to go for it) getting an EVAR procedure (Cooke / Gore endografts ?).
      I am going to presume you in 2014 now have got it installed ?
      I wrote to Kevin about my new idea on a back up procedure (DEEPAK LAL {Ahem : ) } AAA BIOGLUE (Surgeons use it regularly) COAT procedure using LAPARATOMY).
      Being, retired recently- Research Biologist, my grey cells still keep firing new ideas. I wrote last month to Dr. Collins, NIH Director on this idea to present it to ‘The Vascular Surgery Expert Committee’ for : ASAP asking Relevant TOP LABS in the Country and to be followed by FDA aquiesing to Clinical Trials ASAP. THE GLUE COAT (lamina) could be like a safety net to stop the growth of the aneurism and perhaps even bursting for a long time. Such a concept when should WORK, as you will agree, will benefit all of us, even if less than immensely, in the AAA stop/slow down growth arena. Kevin wrote to me last week that its a v. good idea.
      I am asking you and Kevin and some of your AAA friends to be the Cheerleaders and write to Dr. Collins, and ask AAA members to look into my proposal….
      I have talked to a few VASCULAR EXPERTS in NYC some months back and they said they are not aware
      of such a procedure. The earlier tries on a Fabric were discarded. There is no time to go through apply through research grants applications.
      Hoping to hear from you and some of your major experieces too after your EVAR. Could you share this letter of mine with him too.
      I would value Kevins and your association and we could all push hard for better and newer solutions to the AAA.
      DEEPAK LAL

  4. Kevin Morgan says:

    Hi! Pauline,

    Much appreciated!

    Kevin

  5. Kevin Morgan says:

    Hi! Laura,

    I just had another thought! The education and support of family and friends is critical for recovery, plus they will be scared and they’ll need support too. Including some kind of strategy to address this issue is critical.

    That’s it for now.

    Cheers,

    Kevin

  6. HELLO KEVIN : IT WAS SO NICE TO SEE YOUR REPLY. ITS YOUR physicals and athletics evidently that have HELPED YOU POST EVAR a lot.

    So you would say that you did not have to undergo any TYPE I, III endoleaks and other than your readjusting the Stent at Cleveland. And neither Type II, which they write is less cumbersome and perhaps builds up its own embolism blocks in the aneurism. …WOW !.
    MY: ‘ DEEPAK LAL BIOGLUE COAT TO SLOW DOWN/STOP AAA GROWTH PLAN’…I wrote again to Dr. Collins. I am hoping that you and some AAA buddies will write to Dr. Collins. They will then try to put it to the Expert Committee. I am glad you see its a good idea. We all need some on better back plans on the AAA aneurism. Yes, its anxiety giving to all of us like you say… Pl. read my note to Pauline too.
    I am going to reframe to elaborated on the idea by reading Research literature more. …and then write and phone call you accordingly.
    With lots of regards Kevin
    Deepak Lal

  7. Hello Kevin: I forgot to ask about the Contrast issue. Mostly they use Iodine comd with the fluoroscopy for the EVAR. In some or more than some….. the Kidneys will be affected for sometime till they recover. Perhaps that was your experience too. ? In some places now they are starting to use CO2 conjunctively to reduce the Iodine usage.
    Could you write back on this also
    Thanx
    Deepak Lal

    • Hi Deepak, be patient, I will reply, but I get to be swamped sometimes. I’ll direct some of your questions to my surgeon (now in the UK) and let you know what she says. -kevin

  8. Larry Perez Tan says:

    I just learned about my 3.5 cm AAA last week and still somehow confused about this scary time bomb disease. Isaw my vascular doctor already and told me to undergo bloodtests on my cholesterol and blood sugar. Dr Go advised me to really cut down on fatty foods and resort to really low cholesterol diet. I am from the Philippines, do you know of any Filipino here who wrote you already about same condition? I woild love if you connect me to him if you happen to meet somebody here. Is therea supprt group that I may join in? Here’s my number +63-074-6613046, mobile is +63-9465808863. Email is larry_ptan@yahoo.com. Facebook is Larry Tan Baguio City

    • Hi Larry,

      I know how you feel. Been there, done that. Stay calm, and you’ll work through the change. Funnily enough, my AAA changed my life for the better. How odd.

      I don’t agree on cutting out fatty foods, as we need fats, but you have to get the right fats. It’s too simplistic an instruction.

      I’ve tried all these diets, from Paleo to Vegan, which I am now. It’s a long journey, and one you have to think through yourself. Experiment, and see how different diets make you feel. Avoid factory farmed foods. I think a largely vegetarian/vegan diet is working best for me. Will it for you? That’s the question to ask. Diet is complicated and important.

      The chances are the AAA is genetic, or possibly due to antibiotic treatments in the past (Levaquin, Cipro, Avelox, or other Fluorquinolones), or some other environmental variable.

      That said, 3.5 isn’t big, unless you are very small. You just have to understand it, and not stress it. It’s possible that it could stay like that forever, or grow – you must monitor this.

      The best place to go for support, input, and advice, is the Abdominal Aortic Aneurysm Facebook Page, at this link: https://www.facebook.com/groups/2283898552/

      See you there, and try not to stress too much. 3.5 cm isn’t huge – mine was 6.9, when I found it, and I’m still doing Ironman.

      Find your way. Learn from the experience. And let’s talk some more.

      Kind Regards,

      Kev

      PS I don’t remember the person in the Philippines, but I’ll try to find what I can.

Speak Your Mind

*

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Disclaimer: As a veterinarian, I do not provide medical advice for human animals. If you undertake or modify an exercise program, consult your medical advisors before doing so. Undertaking activities pursued by the author does not mean that he endorses your undertaking such activities, which is clearly your decision and responsibility. Be careful and sensible, please.