Hi all I went to the hospital today for my latest check up. The news was both good and not so good. The Consultant checked my CT scan and confirmed what we already knew ie that the descending…

Hi all

I went to the hospital today for my latest check up. The news was both good and not so good. The Consultant checked my CT scan and confirmed what we already knew ie that the descending dissection was clearly still there,but that the diameter of the aortic arch (descending ) was 4.4. He said that further surgery would be required when it reached 5, The good news is that it could take 10 years to grow to that size although it could be a lot quicker. He ended the consultation by telling me that I would also need surgery on the abdominal aorta and that by the time 'I popped my clogs' my whole aorta would have been repaired.I wasn't too happy about the fact that it would mean cracking open my chest again and replacing the graft and valve again but I can understand that it would be too dangerous to try to stent the rest of the aorta as it is so fragile. I guess it beats having ribs removed which I think is more common in USA. I think by the time they have finished with me my body will look like a road map,still my bikini days are long since over.

I asked him outright what level of activity could I carry on with and I was pleased to here that I should carry on a normal level of activity as it is inevitable that I will need the surgery and nothing I can do will prevent it happening so he is of the opinion that there is no point in wrapping myself in cotton wool which I am not very good at anyway, I will be monitored every 6 months.

I have appointments with the eye specialist and a cardiologist who specialises in hypertension(high blood pressure) although my blood pressure is around 130/80 but that is too high for this condition and keeping fit will certainly help to keep it down. I must admit I am looking forward to riding my bike again but I might wait until it gets a bit warmer.

The news wasn't exactly brilliant but not too bad really and it was for the most part what I expected. I will just keep jogging along and take what life throws at me which is what we all have to do with this condition. At least we are fortunate that we do know we have it but mustn't forget that there are people out there who have got it all to come and are totally oblivious to the inevitable

Bye for now

Elaine

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Comment by Harry on February 2, 2012 at 6:35pm: HI Elaine,

I hope your well & your coming to terms with whats been said. We are all lucky to be here, no matter what comes & goes we all seem to push through & I hope the same goes for you.

As Cher said I had my descending arch replaced in August with Dacron after it extended to over 5". I had my annual check ups & everything was fine until the last one - 4 years of being fine & then for no reason a sudden spurt in growth; which had it not been checked would have lead to the inevitable.

At least you know whats ahead & keeping the BP down is the number one priority. Even if you have to go for further surgery they are allot more adapt at these things now than before & your in safe hands. As for surgery they operated from the rear left shoulder around to my chest, avoiding having to open the chest again. It should take around 6-7hrs, mine was longer due to bleeding,but we are all different - there should be no reason to remove ribs, so ask when the time comes.

Life is better now & each day is blessed!!

I wish you well, just keep the check ups regular & watch the BP.

Rgds

Harry

Comment by Kimberlee Jones on January 30, 2012 at 11:34am: First *hugs* and second this is what I love about this group...we all understand and chances are someone is going through something very similar to you. Hang in there...live each day to the fullest and remember when the time comes..you're a survivor!

*hugs*

Kimberlee

Comment by Cheryl Kerber on January 26, 2012 at 3:07am: I wrote too much as you can see --- when I see people struggle in that age group - I wonder whether I really want to live that long. I do know that I have alot of life yet to live and I will continue to do what I can to make that happen.

Love ya Elaine!!! And remember - I'm here.

Cher

Comment by Cheryl Kerber on January 26, 2012 at 3:05am: Hey Elaine -- I was in your shoes this past May after I had made my yearly trip to the ER, which always came back undiagnosable to why I'd end up in the ER, but the CT scan they ran at that time, beyond the usual "do you realize what you have" comments and such, encouraged my to seek a vascular specialist out beyond my GP that I had been going to and had been following me since my first surgery in 2004. The surgeon I had for my surgery in 04 had retired, and going to cardiologists did nothing different that my GP, so I stuck with him as he knew everything about me.

After the surgeon I met at the hospital I had my emergency surgery in in 2004 told me they were not equipped to handle the extensiveness of my surgery, he did progress to tell me my aneurysm(that contained the dissection also) had grown to surgery concern (deep in my gut, I knew something was up even before going to the ER - and since my surgery in 04, I asked my guides/angels that if I ever had to have surgery again, to not make it an emergency, but give me signs - a knowing - so I could be prepared the second time around). Well, they obviously did that this past spring.

Mine aneurysm had reached 5.6 - I never felt it growing, but it was getting more difficult to bend forward without feeling irritation inside (I figured it was my other innerds putting pressure on the aneurysm).

After finding the right surgeon(at a different hospital) - my husband and I made the combined decision to go ahead with surgery. That's why I had my most recent surgery in July of this past year.

I have to say, that going into it this time - knowing, having time to think(granted torture), build up my system health wise and mentally wise (I did alot of reading - like the Wisdom of the Tao) which brought me to a good place.

The risks were the same either way but I knew in my gut, that I didn't want to face an emergency situation again.

They went through my side to fix from my sternum down - including severing my kidneys and reattaching since just putting in a stent wouldn't have worked.

It is tough - mentally and physically - I won't lie about that ---- but even through all the pain when I woke up in ICU - I had a sense of peace. It - the ticking time bomb - was gone. My body knew it. Yes I had to fight to get my strength back - and at the time, there were moments where I thought I couldn't do it - I just couldn't go through anymore. But that's when my guides/angels would kick in --- I had healing touch while I was in the hospital, wonderful family, friends, and overall some wonderful nurses that I thank God for everyday. (There were a few, that seemed to not know how extensive my surgery was - and would be slow to get my pain meds -- but they always apologized after - saying I'm so sorry, I had no idea, I will make sure to get them to you earlier --- and they followed through). I was never angry or mean to them - but I did spend alot of time silent crying until the meds would kick in.

I guess why I'm saying all this is -- like Harry who had surgery right after me (he was supposed to 2 times before me but it fell through due to complications during their surgery attempts (sorry Harry), it was his 2nd time around too. They have gotten so much better at this surgery - more successes if caught - with better down the road positives.

Trust your gut Elaine - you will most likely know - or sense - if the time presents itself to make that decision. Keeping yourself healthy and strong can only help you heal faster.

You are a phenomenal being and deserve the best. If and I mean If, you are faced with having to go back in, give a holler - I got some suggestions for the post part - but also, I'd want to be there for you mentally.

It might never ever need to come to that -- you might never ever need surgery again - and you could live way past your 90's (if you want to) -- sometimes when I see people struggle in tha

Comment by Graeme on January 25, 2012 at 1:51pm: Hey Elaine,

I guess that we are all pretty philisophical about where we are in relation to our own version of life's great plan..and glad that you are on top of everything. Remember:

"Carpe diem quam minimum credula postero" ( "Seize the day and place no trust in tomorrow!")

cheers

Graeme