New Member And Overwhelmed - Need Advice

[Robo21]

Hello,

My GP detected a murmur last November. I hadn't noticed any symptoms and had no insurance so I waited until January to be seen by a cardiologist. He performed an EKG and echocardicardiograph and diagnosed me with severe aortic stenosis at a minimum. Also, I managed to get coverage under a good plan.

He said he would need to perform an angiogram to determine whether there were any other issues and the urgency of the surgery.

This doctor works out of a small community hospital here in the L.A. area. So I began doing research into hospital rankings, doctor reviews etc. My brother whose wife has had 2 heart valves replaced (1995 and 2007) recommended that I take a look at Cedars Sinai Med Center. And I talked to another specialist I was seeing on another matter and asked him where he would go if he or a family member needed such surgery where would he send them. He stated that I should talk to surgeons at Cedars, Ronald Reagan - UCLA Medical Center and possibly USC. He stated that he would definitely NOT go the small community hospital that the first cardiologist works with.

I have since found a cardiologist at Cedars, Dr. Ram Dandillaya with whom I have a consultation tomorrow. I have asked the first cardiologist to fax over his test results to this doctor. This doctor seems to have many "5 star" reviews from patients with many good things to say about his He will probably want to schedule me for an angiogram right away.

One of my many questions for the forum is if they want to operate right away do I wait and interview surgeons from Cedars and UCLA (apparently the top to cardio hospitals in Southern California) or do I just follow the cardiologist's recommendations.

Also, what about blood? Will I possibly need a transfusion? Is this safe? I have many more questions and concerns, my faculties seem harder to harness with the stress of all of this. Any experiences and or guidance would be appreciated.

Robin

 

[AgilityDog]

I had transfusions with my MVR. It's much safer than it used to be, and if the doctor feels you need them then YES, YOU NEED THEM! They don't transfuse on a whim.

You can start your research on surgeons now. "right away" may be 10 days or it may be a few months, depending upon your condition.

Usually they do a heart cath before surgery, to make sure they don't need to do bypass at the same time. I guess that's what you mean when you say angiogram.

check our "stickies" to get started on your questions.

 

[escargome]

Hi Robin,
I too am in the LA area. I would lean toward Cedars. UCLA has a good heart surgeons, but you run the risk of getting bumped due to heart transplants which are done on a daily basis. Hope your angiogram turns out good and there aren't any other issues (blocked arteries, etc). Keep us posted.

 

[Robo21]

I had transfusions with my MVR. It's much safer than it used to be, and if the doctor feels you need them then YES, YOU NEED THEM! They don't transfuse on a whim.

You can start your research on surgeons now. "right away" may be 10 days or it may be a few months, depending upon your condition.

Usually they do a heart cath before surgery, to make sure they don't need to do bypass at the same time. I guess that's what you mean when you say angiogram.

check our "stickies" to get started on your questions.

Thanks for the reply Laurie. Yes the heart cath is to determine if there is a bypass necessary also. He said something about determining velocity of blood flow also but maybe I misunderstood.

I have been reading many stickies and many threads trying to prepare for valve choices, pre-op and post op preparationa, etc. There are still unanswered questions (e.g. finding a surgeon that is highly regarded, etc) that I could use some advice on.

So "Agility Dog" eh? What breed? I have a conformation dog, who just finished and is now a champion. He is a big boy and weighs in at 248 lbs and is 3 years old. He can pull like a tractor.

I am sure that I will have to wait awhile post-op before walking him again - I am guessing at least 8 weeks given his size and strength. Can anyone confirm this?

Here he is with his handler and judge:

 

[Robo21]

Hi Robin,
I too am in the LA area. I would lean toward Cedars. UCLA has a good heart surgeons, but you run the risk of getting bumped due to heart transplants which are done on a daily basis. Hope your angiogram turns out good and there aren't any other issues (blocked arteries, etc). Keep us posted.

Thank you very much Chris! I agree, and I have been leaning toward Cedars but was unaware of the "bumping" issue with UCLA. This is good to know. Thanks for the good wishes also.

 

[escargome]

oh what a cute doggie (or maybe moose?). Anyway, I don't have suggestion as to surgeon. On the transfusion issue, I did not need one although I was determined to be extremely anemic after surgery (iron pills corrected that). Again, good luck in your preparations for surgery.

 

[Lynlw]

Hi Robin, Welcome. I live in Nj , outside Philly but Either Cedars or UCLa are both ranked pretty high in the Nation for hearts. I probably would get opinions from both and see which you prefer. Often it is jus a gut feeling for me at least.
AS for getting bumped, This is just MY opinion, I wouldn't put that too high on my list of pros and cons since usually the best hospitals, especially IF they have a transplant department, like I believe both hospitals you are considerring have, there is always a chance of getting bumped..especially IF your surgeon is also one of the surgeons that DO transplants, Also the best hospitals often get ER cases, especially if they are a trauma center or transfer patients, if surgeries are too risky for smaller hospitals they'll ship them to the better ones.

Yes it stinks to put it mildly, getting bumped, I understand that since justin probably has been bumped more times for more surgeries than most people I know....on the other hand he has also been the ER case that bumped other patients twice, but tend to blieve you have the surgery when you are supposed to and I rather go to the surgeons and hospitals that are the ones that can handle the toughest cases and transplants.

Blood.. usually now you dont need blood for first time valve replacements, but if you do the blood is very safe, they run alot of tests on it, Justin has gotten blood several times and honestly I wasnt worried. Some people prefer to donate their own blood, but it usually isnt needed and sometimes if you end up needing it, sometimes the fact you went into the surgery a little lower than you would have if you didnt donate the blood, can be the reason you need some.

He is a beautiful dog, but yes i would imagine it would be at least 2 months before you should walk him.

OH the cath, He was probably talking about the velocity of the blood going thru the valve, which is one of the measurements they do during a cath.

 

[Boston Tiger]

Welcome to the forum, Robin!

You will probably have time to interview different surgeons in order to fine one you are completely comfortable with. I was OK with the surgeon at the hospital that my GP is associated with, but I wasn't all that thrilled about my prior experiences at that hospital. Luckily, there are a number of highly rated hospitals in the Boston area. We found my surgeon when we went in for the second opinion. His demeanor at the meeting and the impressive new cardiac wing at the hospital convinced me I found the right place for me.

My wife went to work looking for finding a well respected surgeon. She has an amazing network in our town with all the other parents whose children went through the school system with our kids. One of the families was in the medical equipment field, and they were able to check with some of their doctors to see who they would recommend for heart valve surgery.

 

[Michelle D]

I went anemic after my surgery and needed blood, but it is screened very well now and I wouldn't worry about it too much. If you have time and you are very concerned about that I believe you can bank your own blood.

 

[Mom2izzy]

I may be an anomaly, but I'm not sure I really got a second opinion from a surgeon who would actually do the surgery. The first surgeon I saw was a local guy. Basically, I just saw him to ask if he thought it was time for me to start planning surgery. He recommended my surgeon from U of M who has done close to 8000 valve surgeries, 3800 mitral valves. I met him...loved him, and just wanted to get scheduled and get on with it!

 

[Luana]

You probably will not need a blood transfusion. I had one the day after surgery when my lung collapsed, had it not happened I would not have needed one.

Cedars, UCLA, USC are all fine. I had my AVR at Long Beach Memorial and the surgeon was just as awesome as the big guys at the big name hospitals.

 

[Ovie]

I don't mean to stray from the topic too far, but if I gave blood before my surgery, in case I needed a blood transfusion they could just use my own, is that possible?

 

[AgilityDog]

What a gorgeous Mastiff!

If he's a puller, or if a cat crosses your path, you probably shouldn't walk him for AT LEAST 8 weeks after surgery. Maybe more. Oh boy, do I remember holding on to my dear departed 80 lb Lab, Tank, after about 8 weeks after my first OHS. We were throwing bumpers in the field, and Tank was not yet "steady." OMG, I hurt for 3 days! Yeah, go easy on the massive 4 wheel drive furball.

Jet is a field bred Labrador Retriever, CD, JH, OA, NAJ, NF, OAP, OJP, OFP etc. Field trial dogs on both sides of the pedigree. She weighs about 63 lbs. and is exceedingly high drive/anxious/crazy dog. She's presently on injured reserve from wrapping a jump too tightly and falling on her right shoulder just before Xmas. Crazy housebound dog with no exercise. Sigh.

 

[Lynlw]

I don't mean to stray from the topic too far, but if I gave blood before my surgery, in case I needed a blood transfusion they could just use my own, is that possible?

It's possible. You have to set it up with your surgeon or th Red Cross and unless things changed, it (The testing etc) usually isnt coverred under many insurances. The other reason, beside the fact you generally dont need blood and the blood today is very safe, I never have Justin donate his own blood, is depending on the timing, since it takes anywhere from 1 month-2 months for the bone marrow to replace all the Red Blood Cells (not vol of fluid, but the Red cells that carry the oxygen all over the body and determine if your anemic or need blood,) you lost by donating the unit, chances are you will be going into surgery with a lower blood count than if you didnt donate. So I personally believe it is better going into surgery, with a high a Red Count as possible, so even tho you lose some blood during surgery, you probably won't get to the point you need a transfusion.

 

[Sarah_Louise]

Good luck with it all
Love Sarah xxxxx

 

[Jkm7]

I needed blood my first OHS and even knowing that, I didn't see any need to donate in advance of my seconed OHS. It didn't overly concern me.

What worried me the most being in any hospital is getting infection.
Sadly hospital acquired infection happens and that is a worry.

 

[Mentu]

The need for blood during surgery was one of the first questions about which I asked my surgeon. He said it is rare to need a transfusion. I went ahead and contacted the Red Cross and stored one unit of blood just in case. During surgery, my actual blood loss was measured at about 4 ounces which is not at all what I expected. I sent the blood back to the blood bank for general use. Dr Spann said my experience of only loosing half a cup or so is common today because the techniques used today in open heart surgery are far better than they have ever been before. So, Robin, you can call the Red Cross and arrange to have a unit of your blood standing by but it is unlikely that you will need it unless you have some individual issue.

Larry

 

[Madsometimes]

I'm 8 weeks post op, but do not walk my dog on a lead yet, even though he only weighs 11 kg. If he saw a cat or a squirrel, he would jerk on the lead with quite a force. I do walk with my husband holding the lead though, and it's great rehab. We tend to do about an hour a day in my local park, although I do avoid the hills with the steepest gradients.

 

[Robo21]

I don't mean to stray from the topic too far, but if I gave blood before my surgery, in case I needed a blood transfusion they could just use my own, is that possible?

I don't know if I will have time. My new cardiologist and internist, Dr. Ram Dandillaya agreed with the first diagnosis of severe aortic stenosis. He says I should be scheduled ASAP no later than 2 weeks. I don't know how long it takes to rebuild the blood.

 

[Robo21]

What a gorgeous Mastiff!

If he's a puller, or if a cat crosses your path, you probably shouldn't walk him for AT LEAST 8 weeks after surgery. Maybe more. Oh boy, do I remember holding on to my dear departed 80 lb Lab, Tank, after about 8 weeks after my first OHS. We were throwing bumpers in the field, and Tank was not yet "steady." OMG, I hurt for 3 days! Yeah, go easy on the massive 4 wheel drive furball.

Jet is a field bred Labrador Retriever, CD, JH, OA, NAJ, NF, OAP, OJP, OFP etc. Field trial dogs on both sides of the pedigree. She weighs about 63 lbs. and is exceedingly high drive/anxious/crazy dog. She's presently on injured reserve from wrapping a jump too tightly and falling on her right shoulder just before Xmas. Crazy housebound dog with no exercise. Sigh.

Thanks Laurie, yes we are proud of our Kahless The Unforgettable. And he pulls if he wants to play. At his last show he caught me off guard and I went down when he pulled to go play with a vizsla who lunged at him unbeknownst to me.

Sending out healing thoughts and love to Jet for a speedy recovery.