Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Hi Folks,

I am back fighting the blood pressure battle again.  I thought I had it all under control but now find that it is way too high during the day and especially after exercise.  My GP is not the helpful type and has just said to change the time of day that I take Aliskiren.  It has made no difference at all so back I will have to go.  Trouble is high BP is a tricky circle because in our situation it can mean the difference between life and death but its very hard to not worry about it.  I am told by another Doc I must do 2 hours energetic exercise per day to replace the muscles lost during my stay in ICU but it is always raising my BP to alarming levels.  Talk about rock and a hard place.  Shall I exercise or not, if I dont I just put on weight even on reducing diet as I dont have enough muscles to metabolise the food.

Am I going mad?     Any input would be appreciated.  Thanks in anticipation.   Julia 

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I don't think anyone really understands how we feel no matter how they try. family and friends say are you better now or are you feeling better or you look well. How can you get them to understand that you will never be better and are living on borrowed time.

I think that you have made the right decision to see the cardiologist before the GP at least you will know what you are dealing with. Nothing hopefully........

Thinking of you love n hugs Wendy

Thanks Wendy, its really hard to rise above all this.  I feel a low level rumble of uncertainty all the time. I do try to shake it but it takes quite an influence to achieve it.  I am sure you know what I mean.  On the one hand I am looking forward to talking to the specialist about my scan but on the other I am dreading it.   Is it better to travel hopefully than to arrive? Thanks for you support I will keep you posted.  Julia x

Hello Julia,

I think many of us are in the same boat here, managing BP, weight control & exercise. I have generally found that energetic exercise is an impossibility, given the meds restrict heart rate etc. However i go for a long walk every morning for at least 40-60 minutes, luckily i have two dogs so i am forced to. On top of this i have resorted to weight control pills that stop fat absorption, & these help, especially this Xmas festive time.

Generally my BP is well down after a long walk & my Cardiologist confirmed exercise “in Moderation” keeps the BP low.

Your cardiologist is the best person to help you, my GP is pretty much like yours & changing will have little effect, trying to find a caring GP is pretty hard. Maybe you can ask for combination therapy as i have found this has helped me, with little side effects.

We also need to get our metabolisms raised to burn the calories, pretty hard with our condition & exercise is the only way. Also watch your diet if you can, it all adds up.

 

Rgds

Harry

Julia,

forgot to say, as hard as it is keep the stress down as much as possible - major contribution to high BP.

H

Hi Harry,

thanks for your input.  I have been to the hospital and they have confirmed that my dacron implant is still working fine and there appears to be no changes to my aorta since the last scan which is all good news especially as my BP has been high recently during the day.  I dont exercise enough but stress is my major problem.  I am right in the middle of major financial problems and am having to move back to the UK.  This entails selling my property here (give it away maybe!), getting to grips with being ripped off by Rothschilds Bank with no redress (cause of the financial problems), relocating my pets and changing all my medical stuff to the UK all within the next three months.   It makes me feel weak to think of it.   My diet has gone to pot over xmas but am planning to get back on the case forthwith.   Like the sound of your fat absorbtion tablets.   I am usually very good but the load seems heavy at the moment and I fell by the wayside, Shame on me.  I will get to grips as I have an appointment at the Fat Clinic 13th Feb so there time to shrink!!. Fortunately I dont have too much to lose.

Happy New Year

Julia

Hi Julia

My heart goes out to you with all your problems. It is such an awful shame that you have to come back to the UK. I find life very difficult, so to live without stress is just so hard.

I am pleased that your hospital visit was positive in the fact that there was no change.

The only thing I will say regarding the fat absorbing tablets is that you have to be near a loo at all times and take it from me it is not nice.....

I will wish you a happy and healthy new year and hope that your move all goes smoothly for you

Wendy x

I dont care about the loo!  Are you prescribed the tablets or do you just buy them?  I might give it a go, I feel like a bit of help is just what I need.  I am so close to getting really depressed about the whole package I have to fight to keep my chin above water.  I am having a hard time coming to terms with losing my home (25years I have lived here in this house).  I cant imagine walking away for the last time.  Spain has become my home and I know it all so well.   Also I trust the Health Service here and every time I look at the news they are saying how bad it is in the UK and about all the infections you can get in hospital.  I dont fancy it much!

Happy New Year,  Julia

Hi Julia it's me back again.....how are things going with you? have you moved back to the UK and how is your health?

Wendy x

Hi Wendy, I am fine thank goodness, its was my 2 year anniversary of AD last Friday and I am still alive and kicking.    I never did move back to the UK as our circumstances changed a bit and we have rented out our big house and taken a smaller one to live in which is great.  I have just been back to the UK for the 1st time to celebrate my 60th with all the family which was fab.  The birthday itself is not till August but it was the only time Dancing on Ice the Tour was on in Liverpool.  That was part of my gift.

 

How are you getting along.  Did you go on the cruise?  Julia xx

Hi Julia

Well we are still on this mortal plain despite what the consultants said. I had my 1st anniversary 2 weeks ago.

We did go on our cruise and have just returned...what an amazing time we had. I even managed to get on the Great Wallof China with a heave and a push from hubby as well as going on safari.

It was our 45th wedding anniversary whilst we were on board so we renewed our vows. I had a georgeous wedding dress and we had 60 guests. Our daughter arranged for a family and friends reception last Saturday so I got to wear my dress again.

I am so pleased that you are still in Spain it was going to besuch a big upheavel for you to return to the UK after all that time. I have booked for us to go to our villa on the 6th June for 4 weeks so I am looking forward to that. Just got to get some travel insurance now.

It sounds as though you had a great time in the Uk for your forthcoming birthday.

Lovely to hear from you Julia

speak soon Wendy x

Julia,

The diet tablets i take are called "Alli", you can get them at most chemists, a months supply is around £35. You don't need to be near any toilet when you take them. You have one with a meal & as long as you don't go overboard on the fat content then you should be fine. They are designed to stop about 1/3 rd fat absorption.

They have generally helped me in maintaining my weight with exercise.

Good luck.

Harry

I went to cardio rehab where the heart is monitored during exercise so I felt safe.  I can't imagine 2 hours a day though.

I take 100 mg. of metoprolol in am and pm but my physician said I could take up to 400 mg's per day without being concerned (and he is not a pill pusher).  So when I feel like my pressure is intensifying, I chew a 25 mg. pill.  That happens about 2 times per day.  I ways also changed from Lisiniprol to Lesartan recently and I could feel the blood rushing through my arteries.

I made the doctor go back to the old drug.  I don't understand why, if something works, some one comes along and makes changes.   But most of all you really need to be your own guide and do what is important to keep that blood pressure low. My doctor told me he didn't care if it was at 100 - 110.  Just keep it low. 

 

Also, a note to all, after my dissection and aortic anuerism was discovered and surgery performed (all emergency) I went to Cleveland Clinic (number one for this condition in the USA which is where I live) and it was discovered that I had inflammation of the vascular system and the arteries in my head.  That was the trigger for my dissection and the anuerism followed from the weaked wall.   The pathology from the aortic tissue at the time of the emergency indicated 'giant cell pathology' which meant I was genetically predisposed for this.   The inflammation was the 'trigger' which was a valuable discovery since it was something I could control.  It is chronic and I take 'predisonne' when it flares up.   I continue to work with my natural practioneer who is the one person I trust explicitly and believe is 'holding me together through this experience'.   

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