Thumbs Up for Dr. Lever & Cleveland Clinic

[Bucky]

Well, what a couple of days in Cleveland. After a year and a half of cardiologists saying I was non-obstructed and looking at me as if I were not telling the truth, but with continuing symptoms and worsening symptoms in the last couple of months, I finally decided to get to a place where the experts hang out, Cleveland Clinic. I had first seen Dr. Lever at the HCMA meeting last June in New Jersey……I didn’t get a chance to meet him at that time, but he was heralded as one of the “Experts” in the field.
So off to Cleveland I went to meet with Dr. Lever and have tests run in brand spanking new Cleveland Clinic Heart Building. Well, the new building is certainly impressive, so I thought “this is a good sign.”

Over the next 48 hours Dr. Lever proved to be dedicated, funny and absolutely serious about getting to the problem if there was one.

It turned out some of the more conventional tests didn’t show him exactly what he was looking for. Finally he ordered a backup stress test and “bingo”, not only was I obstructed, but very obstructed. . I was relieved to finally have an answer on why my symptoms had been getting worse and he was so proud of himself for finding the answer that he was going up and down the hall telling his colleagues about it. Maybe my Ultrasound will show up at the next meeting – who knows.

At any rate I now have to schedule a Myectomy at Cleveland Clinic and while I am nervous about this I am very relieved to have an answer…..Dr. Lever assured me that the operation would make me feel better and based on the way I’ve been feeling lately…….that won’t take too much….so I am trying to keep my expectations simple since I know Myectomy results vary and the "staying power" of Myectomies seems to vary also, ie. how long they are effective. Maybe I’ll be able to dance rock and roll again…….that’s all I ask even though I am an old guy.

At any rate I would never have found Dr. Lever or any of the info I have on HCM without HCMA and all I can say is thank you Lisa and the rest of the community. I'll keep you all posted on the scheduling.

[Belinda]

I'm so glad you finally have answers, a doctor willing to track down the answers, and a plan in motion!

Belinda

[Lisa Salberg]

AHHHH ANSWERS~!!!!!!!!!!!!!!!!! Good for you!
There is a reason the HCMA works with the doctors we do!

Take care!
Lisa

[Cynaburst]

Doug - I am glad that you stuck with it and made it to one of the big guys who finally figured it out. I know that you have been suffering for awhile now, so here's hoping that you are now on the road to feeling ALOT better.

Best,

Cynthia

[Bucky]

Thanks Lisa, Cynthia and Belinda....yes....I do think you must go to one of the "Experts" and not one of the facilities that would like to be experts, but aren't quite there yet. I continue to be amazed by the number of Cardios who are clueless on HCM...is it because our numbers are really not that big (I find that hard to believe) or because they don't want to take the effort to learn. I guess there are 100's of heart conditions one could get to be an expert in but I've got to think with the kind of participation I see in HCMA we would be one of the large sub groups....

I was VERY IMPRESSED by Cleveland Clinic (I'll probably be impressed by the bill too, but that's another matter). It is huge, of course, but they are very big on being friendly and helpful. I really didn't have to wait too long for any test and everything was new and up to date - except me..........

[LindaSo]

Doug,
The reason the local cardio's don't want to deal with us is that we take too much time. Remember, time is money. How frequently have you had a 15 min appt ? I don't think I ever have, and let me assure you, after my 20 minutes are up, he's done and off to his next patient.

You will be surprised at the bill. I expected it to be much higher than it was. My cost for the surgery was LESS than a friends who had bypass surgery at a local hospital.

Let us know when things get scheduled for you. I know it is a relief to get some definitive answers.

Linda

[Largehearted]

I'm so glad you finally got some answers!

Leon

[gfox42]

Hi Doug,
Isn't it strange . . . we're all congratulating you because you were told you have a serious problem and need open-heart surgery!

Seriously, it is good news -- myectomy isn't any fun, but you'll feel much better. And now you don't have to listen to doctors who're either heading off in the wrong direction or blowing you off.

As you now know, Dr. Lever is a very bright guy and he cares a lot. And the two surgeons there that do myectomies are both great too. You're in excellent hands.

Gordon

[rgong]

Bucky -- interesting to read about your CCF experience AND mbcube's doc exeperience ("talk to the hand!" or, as donald trump would say, "you're fired!") on this msg board the same day. If there isn't a better "compare and contrast" between docs at specialty and non-specialty centers, then I don't know what is. I hope folks that are relatively new to all of this are paying attention.

And you know, frequently when I would read one of your posts or thread you started describing your symptoms, I would say to myself "Dang, it sounds like Doug's obstructed -- but I know he's said that he's not!" Most recently when you posted about how you felt after eating, I was really puzzled; you described almost exactly how I felt after meals prior to my myectomy, symptoms that are often experienced by those who are... obstructed.

Congrats on getting the thorough checking out at a real HCM center and some answers that really make sense given your symptoms. And as Gordon said, you hardly want to congratulate someone for scheduling a myectomy, but now that you know you're obstructed, there's a really good chance you'll notice a real difference afterwards. The mantra that the mods and myectomy vets on this board always use continues to apply -- everyone's different, mileage varies, etc. Keeps us in the loop -- I'm sure you will!

Here's one wolverine rooting for a buckeye,
Rich G

[mbcube]

Well, well, well, just had to join the club didn't you! I bet your doing it just to get another flag on your badge when you go to this year's HCMA Meeting!

Really Doug - Glad you finally got the answers you were looking for and needed to get! I can't speak about CCF, but there are plenty here to assist you in preparing for the big M. You'll do fine! Best to annie & harry!

[Bucky]

Thanks to all. Yes it is funny..."hey you get to have them cut your sternum in two, open you up and do funny things to your heart......You are lucky"...We'll in many ways I am, right?...now if I could just magically transport myself to a point in time 2 months after the operation!!!!!!!!!!!!

Also, MbCube...great talking to you when i was in Cleveland....since we've been conversing over the last couple of years I knew the frustration you felt with your Docs and, of course, your path up to your Myectomy.

Now I just have to figure out how to fit this in....I'll onlly be out of action for what three day. One day for the operation....One day in the Hospital....One day of outpatient healing and then back to work?????????

Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??

[wkevind]

Isn't it strange, feeling relieved at horrible news. I know I was. I remember feeling the weight lifting when I was told "yes it's serious and you need a myectomy... soon" ....See I told you so I thought I was dying and I was right!

I guess we are as complex physically as we are mentally.

This is probably the only place where you'll receive congratulations with the full understanding of all that comes with it.

CONGRATULATIONS!!!

[wkevind]

Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??[/QUOTE]

I think six to eight is realistic. I started back half days at six weeks.
I did the half days because it was early summer weather was nice but I needed the money. I was also getting bored relaxing and starting to feel well again I needed some mundane tasks to make me feel well rounded.:D

[LindaSo]

When can you return to work ? Depends on what you do. I am in healthcare management and I returned for half days at 8 weeks, to learn that my supervisors had "saved" all their problems for me. That in itself was more than I could handle. Oh brother............. Lay the ground rules BEFORE you have the surgery.

Linda

[rgong]

I'll onlly be out of action for what three day. One day for the operation....One day in the Hospital....One day of outpatient healing and then back to work?????????

Well, hold on there buckeye. You're probably being tongue in cheek ;), but just in case... most of us are lucky to be out of the hospital within 5 days. I know some have been in 7 - 10 days, even longer if there are complications. Everyone's different.


Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??

I was online for short periods and posting to this msg board from the hospital, and somewhat regularly once I got home. For longer periods of sitting at a desk, I recall I was able to check work stuff from home at around 4 weeks -- probably earlier if I wanted to (but I didn't -- was enjoying my time off too much). I did go back to work somewhere at the 6-7 week mark, about a week after I got cleared to drive. Even at that point, you're still recovering, and you'll notice improvements even after 8-12 months. But as far as desk work -- you're really limited only by how tired you are in general, how long you can sit up, and mentally what you want to take on. And of course whether you're taking any mind-altering drugs (i.e. narcotic pain killers) :)

But really, take all the time you need. You'll never have an excuse as good as this one to slow down and check out of the rat race for a while. And Linda's right, set the proper expectations with your boss and workplace (not to mention yourself) about your recovery before you leave for surgery.

[mtlieb]

Glad you finally got some answers. The prospect of open-heart surgery isn't the most pleasant, but is likely the best thing that could happen to you right now. I went to Cleveland Clinic myself so I know how long and arduous a day of testing can be. I think my first day started at 7:00 am and when I finally saw Dr. Lever for the follow-up discussion it was 7:00 pm or so. Yikes! But regardless they do get the job done, and done well. You are in very good hands.

[Desert Flower]

Doug,

You will be amazed after the myectomy. I am only 5 1/2 weeks out and feel "better than normal" on the inside (normal being my whole life before serious symptoms). I have gone back to eating normal cooked food and gone out to eat and I sit there waiting for the other shoe to drop, for the suffocating feeling, the dizzyness, the presyncopy and the lungs to fill with fluid and the coughing... but nothing happens. It is amazing to feel free and healthy. Granted my torso hurts, and my incision still hurts from all the sneezing I did last week (about 40 sneezes (yes I counted!!)), and other surgery issues, but on the inside things are great. Go for it, it is the scariest thing to face but the results are amazing.

good health to you and it's great to know that you finally have an asnwer.

[mbcube]

Ah yes, the sneezing. Fear kept that at bay for 4 weeks. then it happened!
Pams trick (squeezing upper lip real heard) works, but the every one & then one sneaks in. . .

[LindaSo]

and for me, sneezing started 2 days post discharge. MAJOR HURT.........but I laugh at the memory of it now. Here's the deal............don't let anyone around you who has URI symptoms. For me, my exposure was 3 days post op when I had to go to the eye clinic for peripheral vision loss, which ended up being an optical migrane. One more for the book of life experiences !!

[BrooksK]

I'm about to fly to Cleveland for my tests and likely surgery next week (tests start on the 19th; tentative surgery date for the 23rd) so it is really encouraging and anxiety-reducing to read these posts about how great the Cleveland Clinic is, and, more importantly, how much better everyone feels after the surgery.

I'm retired so I don't have the get-back-to-work pressure, but I do have concerns about the six-eight week recovery time. Just how incapacitated is one on the initial return from surgery (say 10 days post)? I live in a two story bungalow with the bedrrom upstairs -- is it unrealistic to think I'll be able to "do" the stairs at bedtime and descend to the main floor for the rest of the day? (Fortunately there are bathrooms on each floor.) Plus, I hope to do daily walks around my relatively flat 'hood -- again, is that unrealistic for the first few weeks?

And, for the longer term (say months post), will I be able to bike, hike, golf, kayak (flat water) and be able to build up some exercise tolerance?

I realize everyone is different, but some general experiences as to how quickly people resumed "normal" activites would be appreciated.

[Cynaburst]

I think that you should be fine Brooks. I was able to go up and down stairs when I got home. I just couldn't have gone up and down multiple times during the day, like to go to the bathroom. You should be fine walking around your neighborhood and you should be able to do all of the things you list within a couple of months. It is a gradual process, but when I got out of the hospital after 4 days, I could take care of myself, make something to eat, walk around the hotel, etc. I even packed my suitcase to travel home.

[mbcube]

Brooks - Research on this site about recovery. EVERYONE is so different (as with HCM!) but you'll get a general sense of where you fit in and what to expect. Some of us (yours truly) are a poster boy for quick recoveries, others had some issues (which are planned and expected by your doctors).
As for getting out. The sooner the better. Walks will turn into treks, and wading in water will turn into swimming. Just don't over do it and go a pace that makes you comfortable. Rest WHENEVER!
I was able (as you will) to walk several times a day in the hospital - even the day after surgery! By the time I went back to work 6 weeks later, I can walk several miles and even bike 20 miles, but not everyone can and should do that. Follow both your doctors orders and what your body tells you and you'll do fine.

[EmilysMom]

Wow Doug. I am so glad you got some answers. You have been both patient and persistent. It is far better to have answers than frustrations.

[Rnlynnohio]

So nice on several levels to hear about your great experience with Dr. Lever. I am so happy for you that you are getting answers to your questions. On a personal note, I have my first appointment with Dr Lever on the 28th of January, Thanks to some great advice from Lisa! I am hoping to get some answers as well. :)
Best Wishes,
Lynn

[Bucky]

What a great club...the only one I know that can bring "The" Ohio State University and Univ of Michigan fans together...........

[BrooksK]

After a bunch of tests on Monday and Tuesday, the recommendation was for NO SURGERY at this time.

Changing blood pressure meds and will continue to evaluate.

Add another "thumbs up" for Dr. Lever and Cleveland Clinic for a thorough evaluation and objective advice.

For whatever reason I got "timed out" on this site so I'm going to post now and follow up in a different section later.

Brooks

[Midge Rollins]

Doug, sorry so late in responding I am so glad you got some answers. I am sure you did feel like you were going crazy, feeling one way and having the Dr's tell you otherwise. Of course all of us that know and love you know your crazy just like the rest of us that is what makes us all so fun at meetings. Do you have a surgery date? I will be in Az for just the month of Feb. Let me know your schedule.

[rgong]

What a great club...the only one I know that can bring "The" Ohio State University and Univ of Michigan fans together...........

Well, maybe for *364* days out of the year :D

Doug, you'll do fine... the 2 biggest things you have going for you are a positive outlook and determination. Bravo to you for keeping at it to get some answers and schedule the surgery.

Rich

[sydelle]

I have been seeing Dr. Lever for a year now. I think he is terrific. No matter how busy he is he always returns calls to me with my many questions. So feel at ease knowing you are seeing the best for HCM. Also he is a real "mensch".

[gfox42]

That's an excellent description of him!

Gordon

[Bucky]

15 Days to go now until the Myectomy. I was doing OK until I talked to a coworker who had Open Heart bypass Surgery ......arrgh Matey! I hope those pain drugs are good, I mean real good. I've had a few surgeries in the past but none was so personal as this one.

That'll teach me to ask questions. It is interesting though I've found out a couple of my cohorts have A-Fib problems and so on and so forth. The old "ticker" seems to be a real source of problems and possibilities.

Even with one open heart surgery I'll be one behind my brother in law. Doggone it, if he can do it so can I.........(I hope he is not reading this). I was much more interested in beating him on the golf course than joining him in having my heart exposed.

Let's get the show on the road is all I've got to say. I would be lying if I said I am not nervous, but knowing so many of you who have gone through this give me lots of strength to suck it up and get on with it. Luckily my wifes family only lives 30 miles from Cleveland Clinic and I have lots of relatives in Cleveland so my wife and I will be covered with family support which is always nice in this kind of a situation.

So with that I'll say goodnight and keep on with the countdown. M Day cannot come quick enough at this point.

[Pam Alexson]

You've come full circle here Doug in finding all the real issues and I am glad that it is something finally that can be intervened. To give you some much needed relief is a great goal for all your suffering and wondering about so much with your troublesome HCM.
Remember when talking to CVD patients that they also had to have veins harvested and truly I have been told and seen first hand that that is the main source of some of their worse pain through open heart surgery recovery. Thank goodness we do not need leg or arm incisions from vein removal. It is all good and remember the first 3 days seem to be the biggest uphill battle and then it begins to settle down or perhaps our minds and bodies get a handle on dealing better... whatever the reason that is the general rule. Keep day 3 the full day in your minds eye as the clock ticks and ticks after you wake up.

Best wishes..ALSO..... try at this time to do diversional, fun, activities as opposed to bathing in the full myectomy experience day to day as the date approaches. Once you feel confident or fairly confident that most of your questions have been answered and you are pretty well prepared then pull away from daily wonderment and questioning. Find that peaceful space inside yourself and allow trust and faith to take you the rest of the way. We will all be here for any last minute breakthrough panic episodes throughout the long haul but, remember .. you are going to be in excellent hands and going to be getting a new improved way of living with HCM and it is a great thing... that myectomy.

Pam

[THW]

Doug,
I'm so glad to hear that you have gotten some answers! Dr. Lever is something special, isn't he!?! And I can tell you from first hand experience that Dr. Lever truly cares, not just about the surgical success/complications but also about your level of pain/comfort as well. You will be in great hands there, and yes, they DO control the pain well in Cleveland.

In the meantime, try to get some good sleep to help your body's immune system, stay away from colds/flu viruses, and eat nutritiously. Soon you'll be on the other side and paying forward advice to others. I'm sure there are a number of us on here that you can call on if you'd like, Doug. It's only natural to be anxious, but trust us when we tell you that you're going to be glad you did this.

Blessings,
Theresa

[heather]

I guess I don't understand how obstructed and non-obstructed are dx'd. I have always been listed as non-obstructed, but have never really had a stress test. I think they did a chemically induced stress test when I went to Houston many, many years ago, but they never said anything about obstruction. I know I didn't do any stress tests at the Mayo, but I think I was in such bad shape they didn't want to push my heart then. The drs. I see locally have me sniff the stuff that makes your heart speed up, but I know I haven't done that the last few years. Doug's recent dx brings so many questions to my mind, because I have always read people's posts that are obstructed and think I have so many of those symptoms, especially lately. I'm really wondering. I've told my husband I am going back to Mayo this summer for sure! I think it's time to go back!

[Reenie]

They diagnose obstruction via echo usually. The amyl nitrate you sniff is in place of a stress test. It simulates your heart being under stress. Just because you weren't obstructed before doesn't mean that an obstruction can't develop. There are lots of variables involved, and I think it's a terrific idea to head back to Mayo.

[gfox42]

I agree with Reenie. A lot of things about HCM are subtle . . . and even good cardiologists can miss important things. Better to get checked than to assume that an old exam still holds good.

Gordon

[Bucky]

Hi Heather:

All I know is this......I first noticed symptoms about 2.5 years ago and first had an Echo about 6 months after that. Was diagnosed with severe Left Ventricular Hypertrophy no obstruction. Thereafter I had two more Ultrasounds and two stress test with Ultrasounds. Still no obstruction or at least it wasn't discovered. One of these tests was done at UCLA which is trying to tout their HCM expertise.....Now I am not going to knock them, maybe this just progressed to the point where it became obstructed and was not obstructed when I had the ultrasound done there....although, my exercise response at UCLA was just about the same as it was at Cleveland Clinic. UCLA did not try the Amyl Nitrate trick (Dr Lever expressed surprise that this hadn't been done before).

In the meantime I was kind slowly sliding down this hill and kept noticing that my symptoms were getting worse rather than better. About 2.5 months ago the negative symptoms really kicked in (you know, more SOB, more dizziness, much more trouble after meals, etc, etc.), so I decided to take the bull by the horns and get to a real expert - Dr. Lever.

Dr. Lever did the Amyl Nitrate thing and that showed obstruction immediately. To back it up he repeated a stress test, but on a bicycle where they could do the ultrasound while you exercise rather than on the treadmill where you exercise and then lay down immediately so they can "wand" you. Dr. Lever said something about doing the ultrasound while you are exercising, plus the position of the heart when you are verticle rather than horizontal when they "wand" you really showed up the obstruction much better. So good in fact that Dr. Lever wanted me to stay and get the Myectomy the next couple of days.

So that's my story and I'm sticking to it.

Hope that helps.

Doug