we're new here :)

[New Guy]

Nate&Hannah,

Sorry to learn about your husband, and I'm no help regarding the meds. I do suggest however that when the time comes for surgery, find a doc and a hospital that does a lot of this type surgery. It won't be hard in the Philly area.

Good luck and try to not worry about the things you can't control.

Doug

 

[Eva]

Hannah, welcome aboard. Sorry for what you are going through...this is a rough time, but all will end well.

You asked about hydralazine. In case you did not find out yet, here is an excerpt from the Mayo Clinic http://www.mayoclinic.com/health/drug-information/DR600411/DSECTION=proper-use
about how to use it prperly:

Quote:

This medicine may cause you to have an unusual feeling of tiredness when you begin to take it. You may also notice an increase in the amount of urine or in your frequency of urination. After taking the medicine for a while, these effects should lessen. To keep the increase in urine from affecting your sleep:

If you are to take a single dose a day, take it in the morning after breakfast.

If you are to take more than one dose a day, take the last dose no later than 6 p.m., unless otherwise directed by your doctor.

However, it is best to plan your dose or doses according to a schedule that will least affect your personal activities and sleep. Ask your health care professional to help you plan the best time to take this medicine.

In addition to the use of the medicine your doctor has prescribed, treatment for your high blood pressure may include weight control and care in the types of foods you eat, especially foods high in sodium. Your doctor will tell you which of these are most important for you. You should check with your doctor before changing your diet.

........... It is very important that you take your medicine exactly as directed and that you keep your appointments with your doctor even if you feel well.

Remember that this medicine will not cure your high blood pressure but it does help control it. Therefore, you must continue to take it as directed if you expect to lower your blood pressure and keep it down. You may have to take high blood pressure medicine for the rest of your life . If high blood pressure is not treated, it can cause serious problems such as heart failure, blood vessel disease, stroke, or kidney disease.
Unquote


I too agree that you need to start interviewing surgeons, especially that your husband's major symptoms started two years ago, as you said.

Two years before my surgery I complained to my cardio about extreme fatigue for more than two months continuously...his assistant said that was a bad sign. My cardio dismissed it was a bad sign although my echo showed increase in heart muscle, etc. Yet, not enough to recommend surgery. Two years later, when my results were way up, he still recommended I start *thinking surgery* and to prepare myself for surgery within a year.

Luckily, my husband pushed me to see a surgeon who recommended surgery right away. His words were: I go by symptoms, not by computer results! My symptoms were: Fatigue fatigue fatigue, shortness of breath when I go a few steps up and sometimes while sitting down; numbness in my left hand and palpitations with any movement. I was lucky that I had the surgery within 6 months...my valves were *worn out* and my surgeon was surprised how I was up on my feet! If I waited a bit longer, I would not have been here writing this!

I am curious what difference does it make to compare his echo to another one. How about comparing your husband's heart to the normal hearts sizes?! Also, you mentioned that his major symptoms started two years ago! I would say...the time is now.

Please do not let this scare you...this is my personal experience and I am not a doctor. But I advise you to demand from his doctor about the advantages of waiting vs. having surgery now?! And if you are not satisfied deep down, seek another opinion or see a surgeon.

Nine years ago when a cardio told me I might need surgery within 7 years, I was not shocked...I was younger 9 years...lighter...stronger mentally, physically, and emotionally. I wasnted to have it done then whily my muscle was still strong. He disagreed.

I VERY MUCH REGRET not having gone to a surgeon then and I wish I had done it then before my heart size increased and started Tricuspid and Bicuspid regurgitation. Though the regurgs are a trace, yet, they haunt me subcontiously and I worry if they will become worse one day and I would need another surgery.

Good luck and keep us posted. This is a tough time, but hang on and vent as much as you need.

 

[Michelle D]

Hi! Im 28 years old and I had a degenerative mitral valve that was repaired by Dr. Gillinov at the Cleveland clinic. My valve was very odd and to this day Nobody knows exactly why my valve was like that he still thought I'd be a candidate for robotic surgery. He started but my femural artery was too small for whatever piece of equipment he wanted to put in there. Anyways he has done more mitral valve repairs than anyone else. I live in Florida and none of the surgeons I contacted would even consider a repair they all want to put a mechanical valve in me. Dr. Gillinov is my hero, also at the Cleveland clinic is Dr. Majalevich who is a rocketed in the robotic repair field. Anyways if you have any questions feel free to email me [email protected]. I have lots of free time lately. Oh and as far as waiting find a really great cardiologist and make sure he doesn't go into congestive heart failure while waiting. That happened to me and I ended up having my surgery three weeks earlier than scheduled. It's best if he goes into it in the best of health. Oh and the linsoprol it took a few weeks for me to get used to it and then they switched it on me. I remember the first three weeks I'd take 4 hour naps each day.

 

[Protimenow]

One other thing that nobody has mentioned -- how good is your medical insurance? How secure is your job? I'm not saying to rush into anything because of your insurance coverage, but it may be worthwhile to consider the possibility - hopefully very remote, in your case - that when Nate desperately needs surgery, the job may be gone (along with the coverage), or your employer may opt for a cheaper policy with fewer benefits or a much higher co-pay or deductible.

 

[craigsmart81]

Hey, I have joined this site just yesterday, wish i had seen it sooner, I recently had surgery 10 weeks ago, I had tretalogy of fallots which required my Pulmonary Vave to be replaced by a Bovine valve. I have to say my operation was a huge success, the surgeon and staff at Manchester Royal infirmary in England were first class. I am currently going through Cardiac rehab, I strongly recommend people to go on it. I've really enjoyed it and met some great people.
i will soon be going back to work now, I'm feeling great, fitness wise I've still got a bit to go before Im back playing football, but i'm determined to work hard, do all the right things and i'm sure I will get there. Would love to hear from people similar age to myself, can discuss our experiences etc please get in touch. Craig

 

[COLLEEN S]

My husband's lisinopril made him lightheaded. He was taken off of it and bp is back to borderline high it was before. Sorry cant help with the other drug.

 

[Bear72]

Welcome to the forum. First of all I am very familiar with the Penn system and I suggest you may want to see Dr. Herrmann at Penn. He is extremely interested in mitral valve disease and research and also well known by surgeons throughout the US. As for a surgeon, get an appointment with Dr. Bavaria if you intend to stay in Philly or Dr. Woo (DaVinci guy). I was evaluated by Bavaria and if he had performed mitral repair utilizing the DaVinci, I wouldn't have traveled to Cleveland.

In regards to waiting another 2 years while your husband's heart is already enlarging is ridiculous. Symptoms also make this idea even worse. At the bare minimum, get a second opinion. I had a severe mitral leak that could be heard if you put your ear against my chest, but still ran 35 miles the week before my surgery. I had no symptoms, but as soon as the Dr's realized the heart started to enlarge, it was time. I had my surgery at 34yo. PM me if you have any other questions and GOOD LUCK!

 

[Dennis S]

I would agree with so many others who are concerned about the 1year waiting period. If I had waited the whole time recommended by my first cardiologist I might have been a statistic. I paid attention to what my body was saying and got a second opinion--I think it saved my life, as I went into surgery within days of that second opinion.

As I look at what I wrote I know it sounds scary---but taking everything a single doctor says as gospel can be a disaster.

 

[Johnz]

Hannah, I'm late to this thread but I was diagnosed with MVP in my 20s an, even with severe regurgitation, tolerated it with no real symptoms. Echos twice a year. Lisinopril 20mg. At 44 (this year) I contracted endocarditis and after a successful 6 week treatment, my cardiologist said the Transesophaegeal echo showed that the valve really did suck now and I should plan for surgery. I did my homework (if only I had also known about this site!) and opted to have my surgery done at the Cleveland Clinic. I was able to have it done robotically by one of the surgeons who has pioneered the use of the daVinci robot for this surgery. My surgery went well and my recovery was outstanding and quick. I did have a bout of Dressler's syndrome 10 days after surgery which is a painful inflamation of the pericardium caused by the surgical trauma to the sac around the heart. It was treated with Naproxin and I recovered in a few days. By and large, I had such a small scar that I could do almost anything right away. It was psychologically very helpful to my recovery. So do your research but feel free to contact me to talk about the Cleveland Clinic or just living with MVP for years. Had it not been for the infection, I probably would still be going along without surgery.