hi debz here. just wanted to know if anyone can fill me in on some information on aortic anurismns leaking. my father has been told he had an anurism about 8 months ago now and was told then to go home from hospital and live every day as if it were his last with us.
he is back in hospital nowe with the anurism leaking into his lower back and i am trying to find out with the leak that if anyone would know how long it could possibly go on leaking for without him dying i know it could burst at any time . the drs cant give us a definate time but was wondering if anyone knows of someone who has been through a similar thing and how long they survived with the leak.. any replies would be greatly appreciated . hugs debz xxxx
Not very long, Debz.
If I remember correctly from a previous post, his aneurism is huge. It has apparently begun dissecting.
The time will be short without surgery and I know he is too high risk for it.
thankyou for getting back to me he has been in hospital for three days now and the doctors are making plans for him to come home although i dont think he will make the end of the week by the way he is looking he is grey in skin colour and looking very frail. its just a gut feeling but i dont think he will last a week. so why are the doctors making plans for him to come home or go into a nursing home ? i think this is just a waste of time do you agree? thankyou for your response hugs debz and yes you are right his anurism is 9 or so cm in diamiter and they say it is still growing
Sorry to hear the quick turn in your father's health. I remember your previous post on the subject and the medical decision then was not to operate.
Appearance does indicate an insufficient blood/oxygen put into circulation, but home or nursing home is the only alternative as a hospital retention does'nt have much to offer unless one slips into a coma and requires life support, and that may not be a very good option for anyone (it wouldn't for me)!
thankyou kenkeith for your reply
you remember well about my father and his problem. with the bleeding in his aorta we were told it could clot and leak and clot and leak over again a few times but i think since my fathers anurism is so big this would be highly unlikely to happen. since it is leaking would you know of a rough estimate of time that we may have left with him as i dont know how long an anurism can leak into the body before death will occur. i know it wont be long just looking for i guess you could say a time frame. my mother wants him home and that is what he wants so drs are talking about putting in safety rails and things to help my dad get around the house . could there be a chance that he may make it home or with an anurism this size do you think it highly unlikely and the drs are pulling at straws?
any input on this would be great and thankyou once again hugs debz xxx
Hi Debz, this really hits home for me....I have Marfan Syndrome with ascending aortic measurement of 4.47 cm. It's mildly enlarged. My connective tissue is weak and stretchy and I'm at high risk for Aortic Dissection. Over the years (18 yrs) it's gone from 4.2 cm to 4.47 cm. Eight years ago I received a measurement of 4.7 cm by CT Scan. The guideline for grafting/repair in Marfan patients is 5.0 cm.
I've read, once it starts tearing, and I guess that would include leaking, it would not be leaking if it were not tearing.....it could be a sudden rupture and the mortality window could be a couple hours. I'm on Coumadin, so I would prob. go quickly. Three days of leaking in the hospital....I would say it's just a matter of time. Have you asked his doctors how long? Surely they can give you some type of estimate.
I agree that keeping him comfortable with pain management is utmost important. If he wants to go home, he should have the option. My thoughts are with you and your family. Hugs to you too.
I can identify with the frustration and pain one has seeing a parent wasting away. My mother had alzheimer and died of pneumonia after fracturing a hip from a fall. She was 92 and in a nursing home for 5 years (completely unmanageable in a home environment).
If your father is bedridden there is a high probability of pneumonia in a matter of days. With a respitory ailment and debilitant, it could be a matter of weeks. The end may be a coma with oxygen support through tube. We had to make the decision to stop oxygen support!
Sorry for your predicament, but I am sure you will make the right decision.
thankyou all for your replies. my father is on oxygen full time now and if he makes it home he willbe taking oxygen home with him . his pain is unbarable now he is having pain relief every two hours as needed and he still feels pain this is so cruel i realy hate seing him in so much pain as he is a strong man, and to see him crying out in pain is horrible. we were told today that his anurism was 9cm and that it has been growing fast and is now just over 10cm big the leak is a small one but a leak is a leak and with the anurism growing i know that it will not hold out very long . drs are trying to get him home by saturday or sunday as he wants to be at home and comfortable and around his family and i can fully understand that.
my only wish is that there was some time frame for this as it is killing me seeing him in so much pain and also seeing my mother and four sisters upset all the time. i try to not cry in front of them because they will only get worse . i know i can show my feelings and cry when i get home to my husband as he is my rock in all of this. i just wish i had a propper time frame thats all... hugs debz xxxx
Debz, I was discussing your father's condition with my husband this morning and he said if the aorta ruptures, your father will go fast...like suddenly.
The dissecting (tearing) of the aorta can take a while, especially if his blood pressure is really low. The artery itself is made up of 'layers' of tissue that will have to continue tearing before it actually ruptures. The tearing is what is causing his pain. I know from your previous post his aorta is continually enlarging. Watching your father suffer has to be heart wrenching. My thoughts are with you.
My mother was diagnosed with an aorta anurisum about 8 months ago. She had it measure - I beleive it was a three or something like that. The doc just told her to quit smoking and to come back in a year to have it rechecked. Is this something she should really worry about. At what point or size do they look at surgery?
This is not going to make any sense to you as you need a Nomogram and I can't draw a diagram for calculation of body surface area.
The guidelines for repair in Marfan patients is 5.0 cm; years ago, it was 6.0 then 5.5 and now 5.0. As I stated in an earlier post, in Marfan patients the connective tissue is stretchy and weak and we have to be followed more closely and elective surgery is considered sooner than the general population. Beta blockers are prescribed to reduce blood pressure and reduce the pressure inside the artery. We are also cautioned not to hold breath while lifting nor should we lift anything over 10 lbs.
Her measurement sounds ok to me, it being in the 3 range. Watching her annually with an echo and also may want to consider with CT Scan or MRI.
I was told to have echo and CT Scan. I can't have an MRI since I have a device implanted.
hi thankyou for getting back to me with this information it does help. my father is being told that he is going to go home on monday or tuesday as he wants to be in his own bed and i fully want to support his decision and make him comfortable . yes it is so horrible watching him go through the pain as he is such a strong man and i have never seen him cry before . i took my 5 children in to see him today and he held my youngest daughter who is the most closest to him and he cried for about ten minits and he wouldnt let her go. it was so horrible to watch and all my daughter could do was stand there and hold her poppa as she dosent understand because she is only just turned 5 years old.
this is so cruel and i realy dont wish to see my father in any more pain. i can only hope that it all goes quickly now . it must sound horrible of me to say but i just hate to see my dad in pain. . thankyou all for the information you have given me and i will be back in when this is all over .
big hugs to all that helped me out . hugs debz xxxxxx
A friend of mine has a 3 cm. AAA and the doctors just keep checking it. Although doctors and hospitals differ, around 5 cm. (give or take) is where the surgery usually comes into play because at the 5 cm. size the risk of rupture begins to increase dramatically.
I imagine many people are walking around with "undiagnosed 3's."
Lenin, I sometimes wonder if Marfan patients should have the surgery sooner than 5 cm. It will pobably be changed to 4.5 cm in the future as guideline keeps changing. It has always been a concern for me and now that I'm in my 40's, I'm really wondering. With my weak heart though, I'm not sure I would even survive a major operation like Aortic repair. It's a catch 22.
I also wanted to add........with the DCM my BP bounces all over the place.
I have been switched to Atacand 8 mg and will go up to 16 mg this Tuesday and titrate to 32 mg (if my BP will tolerate) I have hypotension with heart meds. My BP is low in the A.M. and then climbs up in the evening.
I have to make sure I take my meds. on time or it just keeps climbing.
It's a real juggling act to keep everything in balance.
I've read that with Heart Failure or Cardiomyopathy the BP is harder to regulate, is this true and do you know why it does this? Thanks, Penk
Oh my gosh, my thoughts and prayers are with you. I watched my mother die of lung cancer (no, she didn't smoke, but my dad did) and I know the shock and feeling of unreality as it happens before your eyes and there is little you can do. I fully agree with your dad about coming home for his final days. Nothing can be done for him in the hospital at this point, so why not be in the comfort and security of his own home, with his loved ones at his side? That is what I would want. He will have pain medication going home with him, and if its needed, I wouldn't hesitate to let him take it more often than prescribed. After all, what does it matter if its addicting??? I would give it to him whenever he seemed to need it. Even if that's hourly. I'm a firm believer in doing that for terminal patients. Its the LEAST we can do. Let's just hope and pray its quick for him when it happens (and I'm sure it will be). He's already been through so much and he deserves a peaceful, painfree end. God bless you for being there and being so supportive for him. He surely feels all the love around him.