Crazy Numbers

[Ruth Casey]

All,

I have been a member of this site so long I forgot my password as I just knew I'd never need surgery. Buried my head didn't work. I get tested annually and last check CT scan was in May and my AAA measured 4.7. My husband then left me and life went a bit wonky being single parent and dealing with everything by myself. The divorce has been stressful and he does not assist with anything. I thought that was all just okay until chest pain started two weeks ago. I started measuring my own BP and it has been anywhere from 203/71 at it's highest, to 195/81 to a normal level. My cardiologist insisted I go to ER and they conducted another CT scan which came back with 5.4. Cardio said too large a growth in the aneurysm to ignore. He ordered Clonidine 0.1 mg tablets and surgeon visit within 48 hours. Can't get into a surgeon in 48 hours. I'm scheduled for Wednesday. In your opinion, am I looking at surgery quickly and if so, what do you think that looks like? I am going to read everyone's story here and learn as much as I can, I just have not been keeping up and thought I had much more time to educate myself. My other issue: I live in Austin, Texas. My family is in Houston. My son is in his senior year of highschool and has grand mal seizure issues and does not need to change schools. Do I push for surgery in Houston and leave my kid in Austin and ask my parents to come take care of my son, or is Austin a great place to have surgery - it is my own bed/my own home. So much to think about...I appreciate your thoughts! Ruth

 

[Keithl]

So 5.4 is high and comes with increased risk of dissecting. A while back 5.5 would be the number they would use to trigger, but lately even sub-5.0 will sometimes trigger surgery depending on other factors as well as your height. That said I don’t think you are in immediate must have in now as in days. This year I was at 5.1-5.2 and they said get it done it’s in 3-4 months, 6 max. That gave me time to find my surgeon hospital. You did not say if they got your BP back to normal as that is the biggest risk with AAA dissecting. If your BP is normal I would, take a deep breathe and would research your hospitals and surgeons. One of the best places to look for info is;

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
Here are studies on risk and size;

https://www.jvascsurg.org/article/S0741-5214(02)75260-9/pdf
https://www.ncbi.nlm.nih.gov/books/NBK441584/
https://jamanetwork.com/journals/jama/fullarticle/195011
That said I would not waste much time as 5.4 is gettting risky and if your BP is not under control the risk is higher.

I wish you luck and you are at the right place for support. Reach out any time.

 

[pellicle]

Hi

sorry to read that you're having these issues.

... My cardiologist insisted I go to ER and they conducted another CT scan which came back with 5.4. Cardio said too large a growth in the aneurysm to ignore.

agreed ... but its also not yet "panic stations" either.
https://www.racgp.org.au/afp/2013/june/aortic-aneurysms/

The natural history is ongoing expansion, with increased risk of rupture as the aneurysm enlarges (Table 2).7 Aneurysms <5.5 cm expand at an average rate of 2–3 mm each year, with larger aneurysms expanding more rapidly. Aneurysms >5.5 cm diameter in men, and >5.0 cm in women, are at significant risk of rupture and should be considered for repair unless major contraindications exist.

Table 2. 12 month AAA rupture risk by diameter

AAA diameter (cm)	Rupture risk (%/year)
3.0–3.9	0%
4.0–4.9	1%
5.0–5.9	1–10%
6.0–6.9	10–22%
>7.0	30–50%

In your opinion, am I looking at surgery quickly and if so, what do you think that looks like?

I don't understand what you mean ... its regular open heart surgery. Pretty much like what I've had 3 times.

I can't speak to hospitals and such in the USA as I'm from Australia

Take a deep breath and don't worry because many of us here have already done this.

Read some of the Stoics

Best Wishes

 

[Ruth Casey]

Thank you for your replies as they are so helpful. I am concerned because the aneurysm has grown from 4.6 to 5.4 in five months. This is the largest jump in size I have had in 15 years. Cardio says it is time to get the valve replaced. I am just wondering if the surgeon will say I need OHS quickly, or if I have several weeks/months. My BP is so high that it makes me worry.

 

[pellicle]

... This is the largest jump in size I have had in 15 years. Cardio says it is time to get the valve replaced. I am just wondering if the surgeon will say I need OHS quickly, or if I have several weeks/months

my aneurysm was 5.6 when found August and I had my surgery in November. The valve was still going ok, but as they had the engine bay clear and the hoses off they decided to put the new valve in while they were in there ... as you do

All good ... they'll probably do a single piece valve graft unit (saves time, and less time under is better).

Now, about that blood pressure ... have you considered meditation? I medicate nightly with either Shiraz, Burbon, Brandy or Whiskey, but I prefer the Shiraz ... mostly ;-)

 

[Keithl]

Thank you for your replies as they are so helpful. I am concerned because the aneurysm has grown from 4.6 to 5.4 in five months. This is the largest jump in size I have had in 15 years. Cardio says it is time to get the valve replaced. I am just wondering if the surgeon will say I need OHS quickly, or if I have several weeks/months. My BP is so high that it makes me worry.

That explains why they want you in surgery so quickly, as that is rapid increase in size. Your BP is surely a huge factor. Have they not been able to get that down to normal range?

If you are otherwise healthy the recovery is not as bad as it sounds. If you search through my posts I just had valve and aneurysm done in April and was fairly healthy before surgery and the recovery was not bad. First day is worst day, gets rapidly better by about day 3 when all the tubes are gone. Many people are discharged in 3-4 days. Do what the doctors tell you and you will be fine. I was scared behind imagination going in and in hind sight, while this is major surgery it was not bad. That said the hospital and nursing staff helped the recovery a lot. Find a good hospital and surgeon. You mentions AAA so I assume ascending aorta, so don’t let them talk you into mini-sternum and let them do full sternum as it gives them best visibility and honestly once your chest is cracked the recovery is the recovery.

Chest takes about 6 weeks to heal 80% then 12 weeks for the remaining 20%. By week 14 my chest was as good as new, no residual pain and I was lifting and doing everything I was doing before.

Roughest part was sleeping propped up on my back the first 5 weeks. By week 3 you are fairly mobile and just need to watch not to stress the chest.

 

[dornole]

I guess you’ll find out on Weds what they say. And then circle the wagons. Find out what if anything your ex will do to support his son. Does he need someone with him because of his seizures ? Or could he be alone? Where does he want to be for your surgery and if it’s Houston could he stay there a couple days in a hotel with his dad or grandparents? Or would he rather be at home in his routine? Find out what your parents can do, not just for your time in the hospital but for the recovery. Will they come to you in Austin? Who else you got? Friends? Faith community? Wishing you the best as it seems urgent even if not emergent. The doc will make that call.

 

[Keithl]

Ruth,

Please keep us posted.

 

[Freebird]

I live in Austin and I was total Austin Heart Hospital is a high volume center and therefore a good choice. Supposedly the best in town is Dr. Dewan. Dr. Kerendi and Dr. Felger have also been recommended. Hope this helps.