I'm new - the daughter of a patient

[HeatherK]

Hi! I found this site and have really appreciated all the information I've found on it. My mom (Barb) had surgery in January 2004 for an aortic dissection and valve replacement. She actually had the dissection (they THINK) in October of 2002 (she was hospitialized then and they thought it was everything from gall bladder, to ulcers, to stroke, and finally they just said it was stomach flu!), and just recently when her blood pressure was up, the doctor (a new doctor) found a heart murmur, sent her for an echocardiogram, and they found that she was dissected - from her legs to her arms, and everywhere in the middle! As I've heard with other dissections, the doctor didn't think she'd make it, but she did and is doing well. She is frustrated by the lack of information given to her by doctors, and by her limitations in what she can and can not do.

Anyhow, she's not much on posting or reading forums like this, so I'm kinda doing research/info gathering for her. (I really hope to get her on though!)

A few questions for those who have gone through this (I apologize if these answers are elsewhere - I haven't gotten through nearly all the info yet, but I wanted to post and introduce myself/my mom). First of all, I hear of mechancial valves verses other types. She had a pig valve, which I hear they use in people not going to live long? Is this true? She's 61, and other than this, was in really good shape! No other health problems at all.

And the other question (for now - I'll have more later, I'm sure) is the weight limit for lifting. My mom doesn't lift (I've read many posts from the avid weight lifters out there!), but I have 3 kids, ages 1,3 and 5, and she misses getting to lift them and hold them! Especially the 1 year old! They weigh between 25 and 45 lbs, but her doctor said nothing over 10 lbs. Does this change sometime after a period of recovery, or what?

Oh - just thought of one more....for those with dissections, have any of you had more than one surgery to fix the dissection? She was told she might have to have more (they couldn't fix everything the first time, because surgery would have gone way too long), but for now they were going to be monitored (she went and had an echo done on Monday, and goes back to the surgeon for a follow up next week) and she's on beta blockers. Just wondering if people normally have to have more than one surgery for this kind of thing.

Anyhow, I think this site is great. Thanks for those I've already talked too, and I hope to hear from more.

-Heather K

 

[ALCapshaw2]

Welcome to our world Heather !

It sounds like you mother has a 'full plate' of medical ailments. With her untreated disections, I think it would be IMPERITIVE that she adhere to the Doctor's recommended weight restrictions.

She really needs to discuss her PRESENT condition with her surgeon and other doctors to fully understand her situation, her risks, and her restrictions.

I'll let others with more relevant experience chime in with greater detail.

It sounds like she is 'finally' getting proper treatment and attention to her ongoing conditions. Out of curiosity, where does she live and where did she have her surgery?

'AL'

 

[catwoman]

Heather:

Glad you've found us. We do have members on board who have undergone the same or similar surgery your mom did. Tissue valves are used in people of all ages, for various reasons. Mechanicals are used in people of all ages; a friend told me his 84YO mother got a mechanical valve about 12 years ago and it's working just fine, as is his mother.

I don't know about limitations on lifting weights. My husband and my friends refuse to let me lift or carry much weight, even though my PCP, cardio & surgeon see nothing wrong with carrying 20-25 pounds short distances. I am adamant about getting a downstairs motel room, if there is no elevator, so I don't have to tote suitcases, cat carriers, etc., up & down stairs, thus inviting a potential problem.

 

[tobagotwo]

Gosh, Heather. I sure hope they don't just use pig valves on people who aren't going to live long. I am 51, and I just got one.

Tissue valves are frequently used in older people as they seem to be less stress for the heart, and may be less complicating in terms of meds required in some situations. They last longer in older patients than younger ones, as they are not beat up as much, and the calcification process is much slower in older people.

The downside of tissue valves is that they eventually fail, and must be replaced. Although replacement has been successfully done on people in their 80s, the stats are certainly not as good as for someone in their 60s. As such, there may be a "guesstimation" process involved for the surgeon, in terms of weighing risk vs benefit for the individual patient.

Then again, we make fools of them all the time.

Welcome to the site, and we hope you'll find information and good company here in your quest.

 

[tobagotwo]

There is a weight restriction for a couple of months after VR surgery, as the breastbone has to fully heal back together before it can support more that a few pounds reliably. There is also a driving restriction associated with that. The lifting and driving restrictions go away after the sternum heals, and she should be OKed for that by her physician. If they haven't mentioned it, be sure to ask.

I do not know if there are other lifting restrictions brought on by the dissections, and you should check on that before encouraging her to resume any lifting, especially when the cargo is so precious.

 

[Dee]

Welcome from me too, Heather.

I'm glad to hear that they figured out what was wrong with your mom and she's got the surgery behind her now. I'm 39 and had my mitral valve replaced 6 mths. ago and as far as the lifting goes, I was told not to lift over 10 lbs. for the first 6 weeks, and then slowly increase that as I could tolerate it. I've found that it is a slow process though. 6 mths later, I still have to 'watch' what I lift and how I lift it. I have a friend with a 6mth old that weighs 20 lbs. and I feel like that's pretty much all I should lift right now, I can 'feel' it when I lift her. Especially with your mom's other problems, she needs to be very careful and listen to the Doctors. I'm glad that my kids are older, it would have been very hard to have little ones during the recovery.

The mechanical vs. tissue valve. It's some what of a personal preference and also what the surgeon recommends. I have a mechanical, the down side to that is I have to be on Coumadin (blood thinners) the rest of my life. The tissue valves don't last as long as the mechanical and usually have to be replaced in 10 - 15 years or so. I guess with my age, they felt like the mechanical was the best choice for me. I'm sure there's a reason they chose the tissue valve for your mom, you can always ask. That's one thing I've learned through all of this, don't be afraid to ask the Doctors questions! Even if you think it's a silly question, ask. That's what they're here for and if we can't ask them, who can we ask? They should have the answers to your questions and if they don't they can sure find out.

I don't have any information on the dissection part, but I'm sure someone that does will be along to give you some info.

I hope your mom's recovery continues to go well. She's very lucky to have a daughter that's looking out for her!

~DeeDee~

 

[HeatherK]

location/hosptial

location/hosptial

Al,

My mom lives in Canton,OH. She had her surgery done at Aultman Hosptial by a surgeon (Dr. Novoa) who originally came from Cleveland Clinic (along with his team!). IF he hadn't of been available to do the surgery, they would have had to fly her to Cleveland to have someone there do it, (Ross - you know all about that, right! ) but Dr. Novoa cancelled all his other patients and performed my mom's surgery.

-Heather

 

[Ross]

Al,

My mom lives in Canton,OH. She had her surgery done at Aultman Hosptial by a surgeon (Dr. Novoa) who originally came from Cleveland Clinic (along with his team!). IF he hadn't of been available to do the surgery, they would have had to fly her to Cleveland to have someone there do it, (Ross - you know all about that, right! ) but Dr. Novoa cancelled all his other patients and performed my mom's surgery.

-Heather

Only too well I'm afraid.

 

[Guest]

I hear of mechancial valves verses other types. She had a pig valve, which I hear they use in people not going to live long? Is this true?

*raises eyebrow*

Good night shirt tail...I hope not. I'm 30 and have had 3 open heart surgeries (the most recent, January 2003) and had a pig's valve installed each time. I was told they last about 10-15 years; the first lasted 10 years, the second lasted about 16 years; and we shall see how long the 3rd lasts .

Welcome, Heather (& Barb)!

Cort, "Mr Road Trip"/"The Uniter", 30swm w/pig valve & pacemaker
member & newsletter editor, Faith COB = http://www.faithcob.org
"Mr MC"'s Family...& train & models = http://www.chevyasylum.com/cort/
K's BL = http://forums.demonsoftware.com/index.php?showforum=15
Spotting MCs = http://www.chevyasylum.com/mcspotter/main.html
MC's Future = http://www.projectmonte.com/petition/

 

[ALCapshaw2]

As I understand it, LIFTING causes an increase in Blood Pressure. Probably NOT a good thing for someone with unrepaired disections !!

'AL'

 

[Debrinha GT]

reoperation

reoperation

Hello Heather. I' ve had three MVRs{replacements} all with tissue valve and the last one I got put in over eight years ago waa a Pericardium bovine bioprosthetic cardioprothesis valve, has anybody ever heard of this one? I've tried discussing with my cardio about the next one which should be sometime in the future but he said that we've got to wait until the time comes and talk to the surgeon then. I guess I'll just have to wait but meanwhile, I'm getting all the information I can.

 

[HeatherK]

valve replacement

valve replacement

Hey all, and thanks for all the comments/answers so far! I really appreciate it!

But I was wondering something. If a tissue valve gives out after awhile (say 10 years), does it give out slowly with noticeable symptoms, or what? And what are those symptoms?

Also I was wondering for those of you with dissections, what was the cause? My mom was told (by the surgeon) that he didn't know the cause, but it more than likely wasn't hereditary. Then the cardiologist turned around and said that it was from hardening of the arteries and that it was hereditary. Do doctors ever agree?

Thanks again for all the comments. I really hope my mom gets reading this site soon!

-Heather K.

 

[Ross]

No, Doctors never agree. Get used to it. The fact is, they really don't know why there is a weakening in the walls, but they do know that high blood pressure and stresses will cause them to rupture. (Now that ain't rocket science to figure that one out) Some people are prone hereditarily or have Marfan Syndrome, but even in those people, some of the stuff they say doesn't hold water.

Valve failure will be just a natural valve. It usually will produce the same symptoms or it can fail all together immediately and well..........you know the result here. What your mom got should last her 20+ years or more.

 

[Guest]

If a tissue valve gives out after awhile (say 10 years), does it give out slowly with noticeable symptoms, or what? And what are those symptoms?

For me, the symptoms never were "noticeable" until the cardiologist pointed them out. That goes for both my '87 and '03 surgeries. That doesn't mean that I didn't feel them; it simply means that I didn't recognize them as symptoms of needing a replacement as quickly as my cardiologist did. And, the cardiologist noticed them because I have regular checkups...at least once a year, sometimes twice.

Not sure if that exactly answers your question....

 

[HeatherK]

For me, the symptoms never were "noticeable" until the cardiologist pointed them out. That goes for both my '87 and '03 surgeries. That doesn't mean that I didn't feel them; it simply means that I didn't recognize them as symptoms of needing a replacement as quickly as my cardiologist did. And, the cardiologist noticed them because I have regular checkups...at least once a year, sometimes twice.

I'm kinda slow here....but what WERE (are) the symptoms? (I do apologize if this is posted somewhere that I haven't read yet!)

-Heather K. (it's a Monday....

 

[Ross]

I'm kinda slow here....but what WERE (are) the symptoms? (I do apologize if this is posted somewhere that I haven't read yet!)

-Heather K. (it's a Monday.... )

General the patient gets all silly and reverts back to child hood and may even relocate to his/her inner child.........whoops wrong spot.

Try this instead:

http://www.sjm.com/conditions/condition.aspx?name=Heart+Valve+Disease&section=Symptoms

 

[SJJ]

Ross,
Depsite concerted effort, I just can't keep quiet any longer, is that a worm or a talking dildo?
Sue

 

[Ross]

Ross,
Depsite concerted effort, I just can't keep quiet any longer, is that a worm or a talking dildo?
Sue

Sorry to confuse, it's Sasser the new internet worm that was released Saturday.

 

[gemini1968]

I just had to respond because your mom is obviously another "miracle lady"...that is what they were calling my mom after she survived her dissection...it took a week to find it, a week of HORRIBLE pain for my mom. She is also on dialysis and has congestive heart failure, so she really beat the odds.

 

[HeatherK]

I just had to respond because your mom is obviously another "miracle lady"...that is what they were calling my mom after she survived her dissection...it took a week to find it, a week of HORRIBLE pain for my mom. She is also on dialysis and has congestive heart failure, so she really beat the odds.

Gemini1968,

Wow - sounds like your mom is definitely a "miracle lady"! How's she doing now? My mom keeps getting told that she shouldn't be alive....I think she gets tired of hearing that, but I'm glad she is!


Anyhow, a question for whomever has gone through a dissection.... My mom goes to the surgeon on Wednesday for a followup, and I'm not able to go along. I am wondering if anyone has any suggestions for questions that she should ask, that would enable her (me as well) to better understand the extent of the dissection that remains, and risks, etc. (I'm hoping this question makes sense?) It's one of those things...you don't know enough to ask questions (of the doctor) but you want to ask the questions so you know more about the condition....

So if anyone has any suggestions, please let me have them! (gently, of course! )

-Heather K.