My husband had double bipass surgery in 2006. He was fine until about a year ago when he developed shortness of breath and lots of coughing. Our local doctors piddled around for years giving him medicines for bronchitis. Finally he developed pneumonia and was in the hospital for several days. I assumed this was all caused by the pneumonia. I was wrong. He started having all sorts of heart failure symptoms such as swelling, fatigue, and the shortness of breath/coughing continued. It was now November 2011. They arranged for a catherization in January 2012. We had to go through the entire Christmas holidays with him like that. After the catherization, the surgeon told him he had 3 leaking valves but that he was being referred to Emory Hospital in Atlanta because his case was complicated. My husband asked what he could do for the shortness of breath and the surgeon replied "nothing." It took a month for the referral to go through and two more weeks to see the doctor. The doctor at Emory said my husband needed an echo to determine whether heart valve surgery would be safe. There was another week delay and we had to travel 200 miles each way. Well, the surgeon determined that open heart surgery would be too risky and that he was "going to consult with some other doctors to see what they should do." He mentioned a balloon valvoplasty. From what I've read, most of those aren't even successful! The surgeon also mentioned that he would be out of town for two weeks. Again, when he was asked what could be done about the shortness of breath, he answered, "well, you'll just have to live that way for awhile." Frankly, I don't even think they will call back or try to help. I feel my life is completely on hold and that we'll never enjoy ourselves again. I am a very young and energetic 62. Most people think I look 42. I can't end our lives this quickly but I feel that it's over!
Doctors just don't care!
- Thread starter ellurd
- Start date
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ellurd,
I"m not a doctor, but it sounds like not only have you and your husband gotten less than the best advice and treatment, but your husband's case may, in fact, be a complicated one. I would suggest that you contact the folks at Cleveland Clinic, which is the #1 rated heart surgery hospital in the country. They have various means by which they can do a consult, evaluation and offer a second opinion without the patient needing to travel to Cleveland. Then, if you choose to have your husband's surgery there, they have the very best surgeons, specialists and facilities for difficult heart procedures.
Don't give up. There are top-grade facilities that may be able to help. I know Emory has a great reputation, too, but often it depends upon which surgeon you meet and how his day is going.
I"m not a doctor, but it sounds like not only have you and your husband gotten less than the best advice and treatment, but your husband's case may, in fact, be a complicated one. I would suggest that you contact the folks at Cleveland Clinic, which is the #1 rated heart surgery hospital in the country. They have various means by which they can do a consult, evaluation and offer a second opinion without the patient needing to travel to Cleveland. Then, if you choose to have your husband's surgery there, they have the very best surgeons, specialists and facilities for difficult heart procedures.
Don't give up. There are top-grade facilities that may be able to help. I know Emory has a great reputation, too, but often it depends upon which surgeon you meet and how his day is going.
RobThatsMe
Well-known member
I agree with Steve. If you have a complex situation, go to the best!
Afterall, why settle for 2nd best when the best is available.
Afterall, why settle for 2nd best when the best is available.
AgilityDog
Well-known member
Yes do seek help elsewhere and immediately.
Been there, done that, and like your husband I was deathly ill, misdiagnosed with bronchitis instead of CHF. "Oh Laurie, you couldn't run dog agility and have a heart problem." Oh yeah?
I now have 2 mech valves, a third repaired, and am pacemaker dependent with an ICD. But I'm alive and healthy now.
But not because I let a doctor ignore me.
SQUEEEEEK! Loudly!!! and often.
Been there, done that, and like your husband I was deathly ill, misdiagnosed with bronchitis instead of CHF. "Oh Laurie, you couldn't run dog agility and have a heart problem." Oh yeah?
I now have 2 mech valves, a third repaired, and am pacemaker dependent with an ICD. But I'm alive and healthy now.
But not because I let a doctor ignore me.
SQUEEEEEK! Loudly!!! and often.
ElectLive
Well-known member
This is very true, and unfortunately Ellurd, you do not appear to be getting anywhere near the best Emory normally has to offer. My surgery (medium complexity) at Emory actually could have waited a few months, and I had zero symptoms, but I was initially offered a scheduled surgical date less than two weeks from the day I walked in the surgeon's door. While I have nothing but good things to say about my own experience, I'm kind of with Steve on this one. It may not be worth your effort trying to work around these terrible frustrations and somehow improve a situation already gone bad. Particularly for what may be a complex case, a place such as Cleveland Clinc has not only the best reputation to offer, but perhaps even better, has pretty convenient ways to get an evaluation. Obviously location matters to a degree, but whatever you end up doing, definitely don't settle for substandard medical care, and best wishes to you both moving forward.
I can imagine that the thought of getting to Cleveland may sound overwhelming, but I am sure they can assist. I have meet many patients who have had procedures done that doctors from other hospitals don't even consider possible. It is really sad that when doctors do not feel they have the answer, they do not immediately make suggestions like seeing someone else.
With that said, you may want to start by asking a primary care/internist who they believe to be the best surgeon in your area may be. Ask for multiple suggestions. When I was preparing for my 1st surgery, I visited with at least 3 surgeons.
Stay Well
Scott
With that said, you may want to start by asking a primary care/internist who they believe to be the best surgeon in your area may be. Ask for multiple suggestions. When I was preparing for my 1st surgery, I visited with at least 3 surgeons.
Stay Well
Scott
I don't know where you live in GA, but if you can't get to Cleveland Clinic and you live on the north side, check out the surgeons at NE Georgia Medical Center in Gainesville. I think they are one of Georgia's best kept secrets. They have all the latest equipment. Most of the staff there are Emory transplants. I had an amazing experience with them--the care was top notch and they are one of the best heart hospitals in Georgia.
My surgeon was J. Alan Wolfe.
My surgeon was J. Alan Wolfe.
I am sorry you are so frustrated and it took so long for the doctors to figure out it was his heart that is causing the problems. I agree that I would get some other opinions, BUT I do want to say that unless it is a real emergency (life or death in a short time) it often CAN take a while to get appts to see surgeons or even testing, especially if they are centers/surgeons that CAN handle the more complex cases so patients travel from all over to get there and even can take a while (weeks/months) to have the surgery after the surgeon says its time to operate for 'elective" heart surgeries that most surgeries are considerred, since unless they are an emergency they go to the next spot on the list..
I KNOW it is very scarey and frustrating when we want our loved one to get taken care of right away and hard to remember there are also very many other patients and their families who also have been waiting for their surgery, some who are even worse off, but still not considerred ER cases. I personally think it is a very good thing especially for complex cases that the surgeon wants to discuss what is best with other doctors even tho I HATE having to wait to find out what they decide. One of the reason's we go to the best /bigger centers is to get some of the best brains working together to come up with a plan Often the larger centers have weekly roundtable meeting where the whole department meets and discusses different patients even THAT can take longer, since they always have to discuss the worst patients first, usually the ones in the hospital already and it might take a while to even get that done. I TRY to remeber that is a good thing, in my case it is my son who has the complex surgeries, that he is doing well enough that other cases keep getting discussed instead of his..especially since he WAS the ER case a few times and that is pretty awful too. Even CCF takes longer than people hoped for when they are waiting for appts and surgery or even to hear what the surgeons reccomend.
Also it is very hard to see someone we love having trouble with things that only surgery can help, but chances are the doctors were just being honest when they said there wasnt really anything they could do to help in the time waiting for surgery.
Sorry if this isn't what you wanted to read, i just wanted to give another side, based on our experiences
I KNOW it is very scarey and frustrating when we want our loved one to get taken care of right away and hard to remember there are also very many other patients and their families who also have been waiting for their surgery, some who are even worse off, but still not considerred ER cases. I personally think it is a very good thing especially for complex cases that the surgeon wants to discuss what is best with other doctors even tho I HATE having to wait to find out what they decide. One of the reason's we go to the best /bigger centers is to get some of the best brains working together to come up with a plan Often the larger centers have weekly roundtable meeting where the whole department meets and discusses different patients even THAT can take longer, since they always have to discuss the worst patients first, usually the ones in the hospital already and it might take a while to even get that done. I TRY to remeber that is a good thing, in my case it is my son who has the complex surgeries, that he is doing well enough that other cases keep getting discussed instead of his..especially since he WAS the ER case a few times and that is pretty awful too. Even CCF takes longer than people hoped for when they are waiting for appts and surgery or even to hear what the surgeons reccomend.
Also it is very hard to see someone we love having trouble with things that only surgery can help, but chances are the doctors were just being honest when they said there wasnt really anything they could do to help in the time waiting for surgery.
Sorry if this isn't what you wanted to read, i just wanted to give another side, based on our experiences
SusQ
Well-known member
If you don't feel you are getting proper care and answers with the medical staff you've already seen, definitely find somewhere for another opinion. We did just that and found a lot of comfort in the surgeon we ultimately chose.
kfay
Well-known member
Some Dr.s may end up telling you it can't be done because they aren't comfortable with their abilities in performing it. That's why places like the Cleveland Clinic exist. They have more experience with more difficult and complex cases and therefore are more confident in their abilities in being able to take care of those patients successfully. Emory is certainly a good hospital with good Dr.s, but they still may not be comfortable handling your husband's issues. It is a shame your original Dr's have wasted your time, but you are really going to have to grab the bull by the horns and figure out what is best for your husband. If your insurance will allow you to travel out of state, I'd definitely contact either Cleveland (#1 ) or Mayo (#2). Best of luck to you and your husband.
Kim
Kim
Sarah_Louise
Well-known member
If i where you i'd get a second opinion and complain about the way you have been treated!!
Thinking of you both!
Love Sarah xxxxx
Thinking of you both!
Love Sarah xxxxx
Jessica Marie
Member
Don't hesitate, definitely get a second opinion! I've had 2 balloons and it just depends on how bad the valves really are before the surgery. My first one was successful giving me better breathing for a couple years but my second one wasn't successful at all considering my mitral just had too much tissue built up and the aortic was too narrow.
Jessica.
Jessica.
I’m sorry your husband is having these problems. I don’t want to start an argument here but you do NOT have to go to Cleveland to get excellent care. As others have said there are places in your home state of Georgia that can provide world class care. Please don’t give up on seeking second opinions close to home.
As far as doctors not caring, maybe some don’t but my cardiologist and internist are very caring and have had a major impact on my attitude about health and the responsibility I carry. I wish your husband luck and I hope you both find a solution soon.
As far as doctors not caring, maybe some don’t but my cardiologist and internist are very caring and have had a major impact on my attitude about health and the responsibility I carry. I wish your husband luck and I hope you both find a solution soon.
Cooker - I did not mean to imply that going to Cleveland was the "only" way to get stellar care. Just that it is an easy place to think of, because their reputation on difficult cases is top notch. Not that there are not others, just that this one can come to mind very quickly without extensive research if time is an issue.
Steve - I know. My post was not directed at you or anyone else. It was just meant to emphasize that there is top notch care very close to the poster ... I had surgery right in my home town at Sisters of Charity Providence Heart Hospital ... rated in the top ten percent, hundreds done every year ... and I bet Emory is better rated and better known ....
Cheers .... Tom
Marty
Well-known member
Close to home!
Close to home!
When I was first diagnosed with severe mitral regurg my DC doctors wanted to refer me to Cleveland and if not there Hopkins. I joKe that I picked Fairfax County because it was nine miles from the house with good parking. However I knew that one of the best heart surgeons in the country was there. I'm happy with my decision. I'm still here and feel great!
Close to home!
When I was first diagnosed with severe mitral regurg my DC doctors wanted to refer me to Cleveland and if not there Hopkins. I joKe that I picked Fairfax County because it was nine miles from the house with good parking. However I knew that one of the best heart surgeons in the country was there. I'm happy with my decision. I'm still here and feel great!
kfay
Well-known member
Tom. Don't know if you saw in her original post or not, but she had already taken her husband to Emory and they thought they couldn't do surgery and were going to consult to meet and figure out whether they would be able to help him or not. I think that is why there were many of us telling her to move up the ladder a notch or two. I agree with you wholeheartedly about staying closer to home to have treatment. I would have loved to do that if the experience I needed had been closer.
ElectLive
Well-known member
Also, other than the surgeon Tracy mentioned, the best of the rest in Georgia are generally all in the same place (just different hospitals): Atlanta, 200 miles from ellurd.
Good morning,
I very much doubt that my insurance will pay for the Cleveland Clinic. We tried to go to the Mayo Clinic in Jacksonville. My insurance would have paid for a transplant there but not for valve surgery. My insurance is from the State of Georgia and maybe it doesn't cover anything out of state.
I very much doubt that my insurance will pay for the Cleveland Clinic. We tried to go to the Mayo Clinic in Jacksonville. My insurance would have paid for a transplant there but not for valve surgery. My insurance is from the State of Georgia and maybe it doesn't cover anything out of state.
