pre-surgery restrictions

[MNmom]

Hi all, I am new to this fabulous site which I found by accident yesterday and now am hooked! I was wondering about restrictions you may have had before your OHS, and whether or not you had symptoms before surgery. I am 30, do not have symptoms, and was using the eliptical for an hour 5 days a week before my cardiologist told me to keep by heart rate below 135 for now, and no more strength training. Ihave a dilated aortic root - I believe the number is 5.5 which is aparently big, and my aortic tissue valve needs to get replaced with the mechanical kind after almost 10 years. My surgery is tentatively going to be this June, so I am starting all the pre-op kinds of tests. Anyway, looking for exercise advise, and how to make the most out of a heart rate of 135 max! Thanks!

 

[Bina]

Hello and welcome.
I'm sure that you know you don't necessarily need to have symptoms to get into trouble.
If your aorta blows.....well, you know. Some people take risks with that, I would not.
There are good benefits from brisk walking, swimming, yoga, etc. without so much risk.
Your cardio doc can guide you. (exercise with a monitor on)

 

[ALCapshaw2]

Hi all, I am new to this fabulous site which I found by accident yesterday and now am hooked! I was wondering about restrictions you may have had before your OHS, and whether or not you had symptoms before surgery. I am 30, do not have symptoms, and was using the eliptical for an hour 5 days a week before my cardiologist told me to keep by heart rate below 135 for now, and no more strength training. Ihave a dilated aortic root - I believe the number is 5.5 which is aparently big, and my aortic tissue valve needs to get replaced with the mechanical kind after almost 10 years. My surgery is tentatively going to be this June, so I am starting all the pre-op kinds of tests. Anyway, looking for exercise advise, and how to make the most out of a heart rate of 135 max! Thanks!

Your "dilated aortic root" along with the information from your other posts raises several questions in my mind.

For starters, did you get a copy of your Echocardiogram? If not, I urge you to do so.

Second, I *ASSUME* (and we all know what that means that the "5.5" is in centimeters. Is that right?

Did anyone mention Aneurism?
The General Recommendation for Aortic Aneurism Repair is at 5.0 cm, ASAP.

The REASON you were put on restrictions is because your Doctor is concerned about the Risk of Rupture of that "dilation" (aneurism?), which raises another question.

WHO made the recommendation / decision for Surgery in June? YOU? PCP? Cardiologist? or Surgeon?

Have you met with a Surgeon yet?
If not, I suggest doing so ASAP to get his assessment.
Surgeons tend to like to 'FIX' things before there is permanent damage or before the Risks become too high.

In another post, you mentioned that you had a "tissue valve" implanted when you were 20 (10 years ago).
That makes me wonder if you had a BiCuspid Aortic Vavle?
(Out of curiosity, what kind of tissue valve did you receive? Durability of Tissue Valves, especially in younger patients, is a topic of interest to many.)

The reason that I wonder about BAV is that BAV is often associated with Connective Tissue Disorders which can result in Aneurisms. If THAT is the case, you would be wise to select a Surgeon with considerable experience dealing with BAV and Connective Tissue Disorders. An Aorta / Aortic Valve specialist would be ideal.

It would also be wise to have your *entire* aorta examined by either a CAT scan or MRI since Echocardiograms do not visualize the entire aorta well. Then ask your Cardiologist and / or Surgeon for his assessment of the Risk of Rupture or Disection of your "dilation".

Bottom Line: From *my* perspective as a long time member / reader on VR.com, it would be wise to ask for clarification of these issues this coming week from either your Cardiologist and / or Surgeon.

In your spare time -), you may find the Thread entitled "aneurism" (and it's sequel by the same author) in the Heart Talk Forum to be of interest. The series of threads from "HarleyGirl" (HarleyGirl528?) may also be of interest as she searched for an Aortic Specialist to repair her aneurism.

Bottom Line #2, many of us on VR.com believe that "Sooner is Better" when it comes to fixing diseases of the Aorta (i.e. having surgery).

'AL Capshaw'

 

[MNmom]

dialated aortic root

dialated aortic root

In response to the follow up questions, yes, i believe the 5.5 is cm. My cardiologist and surgeon did not seem to think that waiting until June was a problem. Apparently in 2000 i was at a 5, so it hasnt been growing too rapidly. The reason I had the tissue valve was yes, due to a BAV. I had it done at Mayo clinic, and at the time their intent was to repair the valve, but it didnt work, so given my age and sex they put in a pig valve so I wouldnt need medication and I could have kids.
I have never heard of my dialated aortic root referred to as an aneurism, but now I will have to ask that question. I will meet with my surgeon for the second consult on Wed after he recieves the past surgery summary and I get a Cat Scan so he can discuss in greater detail exactly what the plan is. Again, because i am not feeling symptoms and have been exercising nearly 5 hours per week since Jan when i joined a gym, they seem ok with waiting until June (I work for a school district).
Thanks again!

 

[Philip B]

Sure you want to wait?

Sure you want to wait?

I had my defective aortic valve replaced and an aortic aneurysm repaired last year on March 28. Like you, I work for a school district and felt the best course for me was to wait until school was out for the summer. My surgeon and cardiologist strongly disagreed.

My aneurysm was a little larger than yours (5.8 cm), but they were concerned that I wouldn't make it until school was out. Incidently, I had presented no symptoms other than the "washing machine" noise the valve made and I was engaged in a very active lifestyle prior to the doctors telling me to take a break until they fixed the problem.

It's worth having a very candid conversation with your doctor and your surgeon about risks.

For what it's worth, the fact that I was in pretty good shape played heavily in my favor during recovery. I only took six days off work. Basically, I returned to work and worked half days for a week following surgery. I was back at work full time the week following that. This is no guarantee that you'll have the same experience, but you could have the surgery and return to work before the end of the school year.

Don't put off something this important because of your sense of commitment to your work with kids.

-Philip

 

[ALCapshaw2]

MNmom

There is an EXCELLENT discussion of BAV and associated Connective Tissue Disorder in the Heart Talk Forum under the thread name "bicuspid aorta valve" which was started by caterb85 two weeks ago (around April 7, 2008).

I encourage you to read the entire thread which contains interesting information from other BAV patients and what they have learned from their research or discussions with Aortic Surgeons.

Here is one quote of interest:

"In fact, ≥50% of young patients with normally functioning BAV's have echocardiographic evidence or(sic) aortic dilation.:

"BAV is associated with accelerated degeneration of the aortic media, indicating that BAV disease is ongoing pathological process not a discrete developmental event."

Another respondent, BillM, stated that he was diagnosed with "a rather large aortic root aneurism" which suggests that you may want to ask your surgeon (or cardiologist, it wasn't clear) if your "dilation" could be considered to be an aneurism.

IF your "dilation" is in fact an aneurism, you need to know the associated risks which include "Sudden Death" from a ruptured or disected aneurism. Patients with an aneurism above 5.0 are advised NOT to do anything that would cause their Blood Pressure to spike and to seek correction (i.e. surgery) ASAP. Talk with your Doctor(s) about your risks.

Should you need surgery of the Aorta, it would be in your best interest to find an Expert Surgeon of the Aorta, which is much more complex than 'mere' Valve Replacement surgery.

'AL Capshaw'

 

[Ross]

At 5.0 the risk for rupture exceeds the risk of surgery. You should not be doing any excercising at all and nothing, I do mean nothing strenuous. 5.5 makes you a walking time bomb. Please don't make the mistake of thinking nothing of it. We just lost our Dear Granbonny to one last month.

 

[MNmom]

Is there a difference between a dilated aortic root and an aortic aneurism? Because both my surgeon and cardiologist gave me the ok to exercise- just with restrictions of heart rate below 135. Now after reading these relpys my husband wont let me out of the house! I shouldnt have let him read them, but i was concerned. Why wouldnt my drs have mentioned the ticking time bomb to me? My aortic root has been dilated to 5.0 since 2000, and is now at 5.5, so its not like it has been growing at an alarming rate. I feel like i can hardly wait until talking to the surgeon again this wednesday. He is seeing me again after a cat scan. Hopefully then i can get to the bottom of the urgency. In the meantime, however, my husband is doing everything- even offering me the remote so i will just sit down and watch tv. Wait a minute, why am i complaining

 

[ALCapshaw2]

I do not KNOW for sure that an Aortic Root Dilation is the same as an Aneurism, but my GUESS is that they are the same. Hopefully you can get that clarified by a Medical Professional, preferably one of the ones who used the term "Dilation" when informing you of your condition.

What Ross didn't tell you is that he is one of the very small percentage of people who actually survive an aortic (rupture or disection...I forgot which). His 'blew' at 4.8 cm which is why he gets very concerned whenever he sees anyone over 5.0

Did you read the "bicuspid aorta valve" thread in the Heart Talk Forum. There is a LOT of relevant information and references in that thread. Lorie's threads (HarleyGirl) are also relavent. You can find them by clicking on "members list", scrolling down to her name, and clicking on "find all posts by (member's name)". Lorie flew from Washington State to Los Angeles to find her Aortic Specialist (Dr. Laks). Her second choice was at the Cleveland Clinic.

More Questions for your surgeon are: How many Aortic Root Repairs have you done? What were your results?
Hopefully your CATscan will show the Aortic Arch.
Then you will want an assessment of the condition of your Aortic Arch. IF it shows signs of Connective Tissue Disorder, you will definitely want an Experienced Aorta Surgeon and not just someone who does Surgery of the Aortic Arch 'every once in a while'. Next Question for your surgeon (should you need it): How many Aortic Arch Surgeries have you performed? What were your results?

You MAY be one of the Fortunate BAV patients who does not have a problem beyond your aortic root. That would be GREAT. Just be sure they check the ENTIRE Aorta for signs of weakness. It's WAY better to Fix Everything the First Time rather than have to come in for yet another OHS in a few more years.

I'm sure you have noticed my prejudice in favor of going to a Major Heart Center for Repeat Surgeries, especially if they involve Higher Risk conditions. (I had ByPass Surgery at my Local -regional - Hospital. I went to the Best Hospital in my state - ranked #10 to #13 nationally - for my Second Surgery - AVR).

'AL Capshaw'

 

[Philip B]

Urgency?

Urgency?

Sorry if the urgency thing has freaked your husband out. My wife got kinda freaked out when she saw what was happening with my aneurysm.

My cardiologist made a comment that if I wasn't scheduled for surgery within six weeks we needed to have another conversation because what I was facing was urgent. After replacing a large part of my aorta and looking at the tissue that was removed, my surgeon told me he figured I had between six weeks and six months before the aneurysm would have blown.

At the time I scheduled surgery, I'm not sure my brain really understood the urgency of the situation. I did it mostly because my wife was pestering me without mercy. Heck, I had managed to live an active life while avoiding all doctors in general for twenty-seven years before landing in the ER with a cut finger and dealing with an ER doctor who wouldn't quit bugging me about the "washing machine" in my chest until I agreed to see a cardiologist.

Most, if not all of us, will agree with Ross, anything 5 cm or larger presents a lot of risk. I guess I'd rather encourage you to be cautious and get the problem fixed asap than chance a negative outcome because you waited too long. We know what outcome awaits if these kinds of issues are not addressed quickly enough and that outcome is not positive. Maybe your doctor is right and the problem can wait until June, but what happens if your doctor is wrong?

-Philip

 

[Gusdog]

MNMom - my understanding (and I'm not a doctor) is the difference between aortic dilation and aortic aneurysm is just size. However, I would think that 5.5 cm would be considered an aneurysm. Perhaps the surgeon can clarify Wednesday.

Do be careful. Make sure you find out how much weight you can safely lift before surgery. My aneurysm measured 6.2 or 6.7cm (CT and TEE measurements, respectively) at it's widest point, and went from root to arch, but it was dissected when they got inside (it was not dissected 12 days earlier). I'm pretty sure it happened when I kind of overdid it the night before lifting my infant nephew. I was very lucky to have come out of it as successfully as I have.

It wouldn't hurt to take it easy for the time being, even if your doctors are not concerned about imminent dissection or rupture. You'll have plenty of time to make up for it in a few months.

 

[ALCapshaw2]

Here's the definition of *aneurysm a.k.a. aneurism* from my Merriam Webster Medical Desk Ditionary:

"an abnormal blood-filled dilation of a blood vessel and especially an artery resulting from disease of that vessel wall."

========

Note to Ross: I think this thread would be seen by more members with similar experience if it were moved to the Pre-Surgery Forum since the Active Lifestyles Forum is frequented mostly my our 'Super Athletic Types' AFTER surgery. Just my opinion.

'AL Capshaw'

 

[llewis34]

Ditto To All Of Above

Ditto To All Of Above

I had been monitored for 5 years annually...then twice a year as of 2006....then found out it was time just over 1 year ago. My aneurysm (as my dr called it) was also 5.5 cm. I was training for a mini marathon at the time. My dr. told me to stop training, lifting, everything but a brisk walk until surgery. Then when they opened me up and realized the extent of the calcification of my valve and the state my aortic root was in, he told my family that I was lucky to get in when I did.

I just celebrated my 1 year anniversary for OHS. My suggestion is that it better to be patient and alive than the dead patient. Sorry to be so blunt, but take it as an excuse to be lazy if you must wait until June. I had a hard time with these instructions as well and I didn't have symptoms to speak of either. What you can't see or feel can hurt you. The caution is worth it.

GOOD LUCK!

BTW - spouses and children worry....I remember when my dad had the same surgery in 1991. They just want more time with you. Godspeed!

Lisa

 

[Donnchadh]

Sometimes even the best Carios don't know what their talking about.
My first appointment with one of the best cardios only told me of my BAV.
Didn't even mention the "Markedly enlarged aorta" which was on the report.
My Second Cardio was concerned more about my "Enlarged Aorta" its "Only 4.8cm lets wait and see.
After more research I went straight to a surgeon who said both valve and ascending aorta were going in the bin and how soon do I want surgery???

I am now on the waiting list for "Elective Surgery" Cant work or do anything other than walk and "Lose more weight" but not urgent enough to be put straight in.

This just makes the waiting even harder.

 

[Donnchadh]

Oh by the way I was asymptomatic until about 3 weeks ago and now having episodes AF and increasing breathlessness and still on the waiting list

Brisk Walking is all I am allowed to do.

 

[SumoRunner]

I had been diagnosed at age 10 and was always active. It took until 42 for my valve leakage to cause any trouble. Then when it was time I was told to stop running until it got fixed. That was December and my surgery was done in July. By the following December I was back running again. I missed less than a year, hardly a blip on the radar really.

I didn't stop exercising entirely for those 8 mos., just reduced the intensity. Instead of running every day, I walked.

Were they right to make me stop running when they did? Yes indeed. During that time I developed patches of discolored, mottled skin around the toes and ankles. I asked the MD what that was from, congestive heart failure was the reply. So even though I didn't feel all that bad, it really, really was time when they called time.

It got fixed and I got back in shape and 17 years later all is well. Still have the mottled skin to remind me though.

 

[Philip B]

How bad is it?

How bad is it?

One of the illustrations my surgeon used when trying to convince me that I needed surgery quickly was this:

He told me to get out my ruler which was marked in centimeters and a nickel. He said the typical diameter of most people's aortas is roughly the diameter of a nickel. He then told me to lay the nickel on the ruler and compare it's diameter with the diameter of my aneurysm. The nickel was in the neighborhood of 2.1 cm; my aneurysm was 5.8 cm. He asked me to consider how much more stretching my aorta would take before it blew.

The illustration made a huge impact on my wife. The impact wasn't totally lost on me, but the denial thing was still a fixture in my brain. Thank God my wife didn't have the denial thing inhibiting her perspective of the situation.

-Philip

 

[MNmom]

Thank you all for your support!

Thank you all for your support!

Wow, I really appreciate everyone's comments. I feel like I just joined another caring family! I meet with my surgeon tomorrow after a CT. I will be anxious to hear how he responds to my questions with all this new knowledge i have gained over the past week! I dont know why, but for some reason i never even looked up my "condition" before last week; and this is my second OHS in 11 years. I guess ignorance WAS bliss.