Be assertive with the insurance company! If one person is not helpful then call back again and you will get someone else. I had to call 3 times before I found someone who took the time to listen and described to me exactly what I needed. When I asked her why the other people could not give me this info she said there is alot of turn over at the call centers and not everyone is completely familiar with the details.
I also had tremendous help from my cardiologist and his nurse. I decided one day after pulling my hair out with the insurance company to call the nurse and ask if she had any advice. She talked to the doctor and the next day they both helped me out with the paperwork. I did the leg work finding out what forms they needed, where to fax them and what "terms" to use. I even convinced that 3rd woman at the insurance company to give me the "urgent care" fax number so the forms would be looked at more quickly.
Be patient, assertive and determined!
I had a TEE the day before my surgery. It isn't bad except for swallowing the thick clear goop. They make you hold it in your mouth for a little while and then you swallow it. I was hoping to spit it out but not to happen. After that the test is very painless, just not fun. My worst problem was that that evening (the evening before my surgery), I was fine until evening then all of a sudden I had a terrible pain in my right side (low), then I got sick to my stomach about 10 times, before it subsided. I was fine after that. I think it might have been the gunk I drank, but it could have been nerves prior to surgery. Hard to say, but my stomach was definitely empty! After surgery I weighed 15 pounds more and that was somewhat of a problem as it caused me to have congestive heart failure. I was not told not to eat any salt, in fact they gave me saltines to take with my meds. Consequently I did not lose the water from the surgery and I was in pretty bad shape. My best advise to you is to make sure you go NO salt and try to have them get the water out of you before you go home. I wish I had known that. I am fine now, lost it all, but it scared me at the time. I will be 3 weeks post op tomorrow, and feel very well, just a little incision pain. Linda Stahl
Hi Linda. When I left the hospital, I was 5 pounds heavier than when I went in so I was glad I'd taken the advice of others on this site & packed some stretch pants. Best of luck with your surgery. Joy Vera
I am a 3x veteran of open heart sternotomy hole repair 20 yrs ago, mitral valve repair 13 yrs ago and 4 wk postop mitral valve mechanical replacement. Have had TEE's X 4, nothing to it, medicated so you will not even be aware.
What to take with you is always a great question and alot depends on whether you are having a mini or full sternotomy? In the past when we were @ a hosp more than 4 hrs from home I made sure that I stuck around closely after discharge in hosp motel. Due to the type of surgeries I have had home health care once returning home. Also depending on how you will be propped up going home or in a hotel/motel for the first little bit. I have always had a hosp bed @ home as we do not have any recliners. As far as fluid, all retain first the first few days due to fluids being given usually a few pounds, just strange looking puffy from head to toe. I also have a nursing background so I was prepared for that each time. This time I gained 20 lbs, once diuretics started took it all off so by the time I came home normal wt of 107 after 8 days as an inpatient. Comfort, comfort, comfort, some cannot pull a shirt/top over head for weeks, so button down loose wear at all times is helpful. I have always taken CD's to relax and drowned out hosp sounds, very helpful. I have never felt like reading and have always left my computer at home. I hope this helps somewhat so if I can help you in any other way please do not hesitate. Keep in touch
Glad you have a date to plan for. We flew from Fort Myers, FL to Cleveland for my surgery. Would definitely recommend a pair of elastic waist pants to return home. That was the smartest thing I brought with me as I gained 15# of fluid in the hospital!!Have you on my prayer list for the 29th of next month. Where are you having your surgery?
Surgery for asymptomatic mitral regurgitation is controversial. American practice guidelines from the ACC (American College of Cardiology) and AHA (American Heart Association), inspired by a 2005 Mayo Clinic study, say yes. European practice guidelines, inspired by a 2006 study in Vienna, say no. The February 16, 2010, issue of Circulation has dueling opinion articles. One, by two Mayo Clinic physicians, including the lead author of the 2005 study, argues the "yes" case. The other, by two Columbia Presbyterian (New York) physicians, argues the "no" case. Both cite the same collection of studies, but interpret them very differently.
David Adams and Ani Anyanwu discuss the controversy in an online article from May 2009 that you can access without charge,
but some of the articles that cite these may require payment or a visit to the library of a nearby medical school.
In my case, my internist's keen ear detected a worsening of my long-standing mild mitral regurgitation in mid-2008. He referred me to a cardiologist in my HMO (Kaiser Northern California), who concurred, and after a TTE and TEE offered a surgical repair. Aware, as was he, mainly of the ACC/AHA guidelines and the Mayo study, I was gung ho. Cautioned by Adams' warnings about the potential challenges of repairing Barlow valves, I wanted a second opinion about the nature of my lesions, even though my Kaiser surgeon has been repairing valves for over 15 years. It took some doing, but I got the second opinion five days before my scheduled surgery.
The opinion was more than I bargained for: Since there were not yet any consequences to the regurgitation, in particular no signs in my echocardiograms of LV remodeling, surgery was premature. I turned on a dime, canceled the surgery, and am now on a watchful waiting regimen, watching for shortness of breath as I bound up San Francisco's many hills, and hoping my cardiologist catches any early indications of LV remodeling that appear on my twice-yearly TTEs.
Just going through some of the old journal entries and came across your story - which is almost identical to my own experience. My cardiologist of 10 years was of the watch and wait brigade - maybe surgery in 5 years. When I got a second opinion from the most renowned surgeon in Europe, it was a different story - 5 years could mean a heart transplant. My first cardiologist made me feel like a hypochondriac, I will never return to him. I travelled 600 miles for my surgery 4 weeks ago and know that I did the right thing. Stay with your instincts, get another opinion, do your research - it's your heart. Looking forward to reading your updates. Warmest wishes Penny (Scotland)
It's tough being in the position of getting different opinions. I hadn't undergone any significant heart changes so my cardiologist suggested for me to wait until I felt my lifestyle was noticing a change because of my breathing etc. and when that happened, it would be time. Good luck. Those are some excellent websites that Duane suggested and hopefully they'll help a little. Cheryl, Ontario
I posted a few days back on your guestbook. I too faced the difference between a cardiologist recommending "watchful waiting" at six month intervals and a surgeon saying let's do it. The cardiologist had told me surgery was inevitable within a couple years. The surgeon said it wasn't an emergency, but it was inevitable and he would recommend doing it within 3 months. It's a tough call you'll have to consider for yourself. It didn't make sense to me to wait until the valve got worse and less likely repairable and to wait until the heart showed damage before having surgery.
These links may be of interest to you:
Whatever you decide, I pray that God will guide you and give you His peace.
What's a check-up? Beats some day saying "woulda, coulda, shoulda". Better to be proactive and on top of things and besides, it will give you and your family comfort knowing exactly how your heart is progressing. Cheryl, Ontario
I don't think your being a hypochondriac. By being more proactive about your diagnoses and keeping on top of it makes me feel better and I’m sure I can also speak for the boys too. I think you’re being more paranoid about what others think then anything else. What would you tell me if I was given these diagnoses? I’m sure you would say go get checked and to stay on top of it.
Your current status sounds much like my first diagnosis on 10/21/09 and my deliberations going into my surgery on 1/28. If you're interested, check out the "My Story" and early "My Journal" entries. I too experienced a varation in approaches between doctors. My cardiologist (first time I ever had one of those) told me surgery was inevitable "within a couple years" but advocated "watchful waiting" with 6-month checks. I decided to get a second opinion and had a consultation with my surgeon of choice, who affirmed it was not an emergency but advocated having surgery within 3 months. My wife and I chose to get 'er done. I'm so glad I'm on the other side of it now. You can only live in suspension for so long. You really might want to get another opinion. Feel free to contact me if I can be of any assistance or support.
I don't blame you for going to CA. That is where Arnold Schwartenager had his valve surgery. Maybe you can get his doctor. I heard is a genius at valve surgery. You will want you daughter near you, my kids are all here in Tucson so it is a no brainer for me. Linda Stahl
It sounds like you are getting the run around. Right now my primary doctor, who specializes in womens's heart health, is handling my case, although I have a cardiologist in the same office, who she confers with and all my tests are done at the same place (University Medical Center in Tucson, AZ). That is very convenient for me and I totally trust them. I thought about the Cleveland Clinic because I go to Ohio every summer for 5 months and they are considered tops (that is where Robin Williams had his valve surgery) but I really want to be in my home with my children around. My doctor told me she would never send me to a surgeon that she herself would not go to. That is about all the reassurance I need. I feel I am in great hands. Linda Stahl
I was diagnosed with severe mitral regurgitation, flail leaflet on December 4th and had my Mitral valve surgery on Jan 4th 2010 at OHSU in Portland, Oregon. I was told I could have the surgery sooner or later, so I opted for sooner because I wanted to put it behind me. I would definitely talk to another doctor just to have another opinion. Good luck and I'll look forward to checking your blog to see what you decide.
Sounds as if you have some technical answers but they weren't explained to you. I would be making another appointment with the cardiologist and get down to specifics. Find out what the terms mean and what they mean to you. You can't make an educated decision unless you know more about how your heart is being affected and how serious it is. Just my opinion. Cheryl, Ontario
Was going through some of the journals and noticed you had a follow-up appointment on January 28th. How did that go? Did you get any of the answers you were looking for? If you have been reading these journals lately, you will see there have been a couple of scary moments but thank goodness the doctors were on their toes. These things can be intimidating to read but better you be armed with as much information as possible. For the most part the success rate is great and that's where you have to stay focused. I always advise people to spend their time getting themselves and their houses in order which can help take some of the post-operative stress off. Cheryl, Ontario