Trip to Cleveland Clinic on January 19th

[BrooksK]

After consulting with Lisa about my stress echo numbers/report, I followed her advice and got an appointment with Dr. Lever at the Cleveland Clinic on January 19th. While my local cardiologist made a rather weak (half-hearted, one might say) recommendation for surgery, I do look forward to getting a truly expert reading of the various tests.

While I don't want to prematurely conclude that I'll need some form of surgery, neither do I want to make numerous cross-country trips (I live in Portland, Oregon but I grew up in Ohio) if the conclusion is that surgery is the preferred alternative. Dr. Lever's office suggested that both evaluation and surgery might be done in one trip, and I'm forwarding my various test results for a "preliminary read" so that detailed evaluation and surgery may be scheduled on one trip.

Does anyone know if Dr. Lever typically pairs with any particular surgeon? I've seen mention of Dr. Nicholas Smedira at Cleveland Clinic and he seems incredibly well-qualified, but I have no idea how Cleveland Clinic assigns surgeons or if I have any say in the matter.

While I'd like to find someone with whom I'd have some degree of rapport, I'd also like to have the most-skilled and experienced surgeon operating on MY heart.

What is the typical stay in the hospital after surgery? Is there a "typical" time that one hangs around the hospital after surgery for routine follow-up? Is it wildly optimistic to think that I'll be taking my dogs for walks one month after surgery?

Well, those last questions don't seem to have much to do with Cleveland Clinic per se, so if anyone has words of advice about CC, Dr. Lever, or surgeons there, let me know.

[Reenie]

I think Dr. Lever usually works with Dr. Smedira. I'm sure someone else will answer with more details about the surgery, but I think a 5 day stay is typical. Best of luck.

[scottonbike]

Hello

My surgeon at the CC was Dr Bruce Lytle. IMHO outstanding guy, explained to me and my caregivers what was going on. Great bedside maner, and in a way looked like Albert Einstein. I really do not think you can go wrong with any of the surgeons when doing a myectomy, they do a lot of them.

Scott

[Cynaburst]

I had my surgery at Mayo a couple of years ago, so I can't specifically address the Cleveland issues although in the 10 or so years that I have been around the HCMA message boards, it seems that most of the myectomies at Cleveland have been done by either Dr. Smedira or Dr. Lytle. For whatever reason, it seems that Smedira has been the guy that most who post here have had in the last couple of years.

I think that you will be walking some within a couple of days of your myectomy and by a month you should be able to take your dogs on multiple walks a day.

I was hospitalized for 4 days and hung around Rochester in a hotel for another couple of days and flew home 8 days after surgery. If you search through the archives here, you will find lots of info. to keep you busy.

Good luck.

[sassydeborah]

Good luck on January 19th, Brooks! I saw Dr. Lever for the 1st time on October 24th .... wish I had gone sooner. I immediately joined his fan-club. I'm sure you will like him and Cleveland Clinic. Dr Smedira is going to perform my myectomy on Dec. 5th. I'm full of mixed emotions. While I dread it, I'm anxious to get it over with and start feeling better. All I know about the surgery now I have learned from people on these boards. I will have some information to share before your appointment.

[BrooksK]

Dr. Lever was able to review my most recent stress echocardiogram and I'm now in the process of scheduling surgery with Dr. Smedira on January 23rd.

I'm still toying with the idea of going somewhere sunny, warm, and flat for a couple of weeks post-surgery. Has anyone had their surgery at the Cleveland Clinic in Ohio and had their initial follow-up at the Cleveland Clinic in Florida?

How self-sufficent are people one week after surgery? I'm thinking I'm going to go on these long beach walks and pretty much care for myself, but if I'm limited to 2 15-minute walks a day and unable to lift more that 15 lbs., I'll come back to rainy, cold, hilly Portland and save my sunny walks until I'm more fully recovered.

I've never had any surgery (other than laser surgery on my eyes) and I'm not a particularly cheery or fast recovering sick person, so my vision of going on a post-surgery "vacation" may be wildly optimistic. On the other hand, if multiple daily walks for miles or swimming is realistically in the cards, I'd rather be someplace where I didn't have to bundle up.

Opinions or experience?

[Midge Rollins]

You will most likely be limited to 5-10lb wt. lifting. A gallon of milk will weigh 5lbs. As far as walking they will let you walk as much as you feel up to. You will want to work up to several walks a day though and not rush it. I personally feel you will want someone around those first 2-3 weeks. Malls are a good place to walk too if someone can drive you as you won't be driving for a short time.

[Cynaburst]

Swimming is also probably out for at least a month or 6 weeks or so. You will want to avoid anything that might introduce germs to your incision. They will let you shower after the first few days, but you won't be able to move comfortably enough to swim for awhile either. I still feel some soreness when swimming two years later! Not enough to matter, but it is noticeable.

Also, you are supposed to keep the incision out of the sun for a year.

[Pam Alexson]

I would imagine walking in sand would be quite impossible post surgery. I am 5 years post op and still have a great difficulty with long stretches of anything and sand is a huge thing . You will want firm solid ground under your feet with no accessory muscles especially your arms swinging to propel forward through the sand. Flat, even, firm, surfaces will minimize stress and strain on your chest that has recently been sawn open for the surgery and sewed back together after the surgery. Stay on solid ground..if you happen to have access to a warm, sunny, recovery place, just understand that it is going to take some hard time and some weeks like 6-8 to recover partially and to work back up to former activities and then on to future activities as your recovery permits and healing progresses.

As far as self sufficient.. you will be able to do all your ADL's probably without any assistance and make yourself light meals. I did have some initial difficulty getting up out of bed but then I used the hug myself, roll to the side, and drop my feet down, stand upright method ..and it worked well. It is just so much movement of our body comes into involvement with the chest .. so you will find what works to minimize the strain and pull.

[BrooksK]

O.K., beach walks a week after surgery IS wildly optimistic.

Plan B is staying an "extra" week in Ohio and flying back to Oregon and doing recovery for 6-8 weeks here and then evaluating if someplace warm and sunny is in the cards.

Thanks for the voice of experience.

[jennifer.wyatt508]

Hello!
My dad had a myectomy performed by Dr. Smedira in September at the Cleveland Clinic. He is an excellent doctor and he will really make you feel at ease. My dad was first seen by Dr. Desai at the Clinic and then he referred him to Dr. Smedira so maybe your case would be similar.
Best of luck to you!
Jennifer

[gfox42]

The others have already said it: for the first period, you'll want to have someone else around. And while your walking will improve fairly rapidly, for the first couple of weeks you don't want to try anything that'd be challenging to, say, a (walking but very young) small child. I live in Florida; for the first 10 or 20 days I had to stop halfway up "the hill" (it might be a climb of, say, 20 feet) on the next street over, just to catch my breath and rest up.

A friend just had heart surgery for a completely different condition, and she coped with bad weather (Florida summer heat and humidity) by having someone drive her to the mall so she could walk there. That'd bore me to tears, but it's better than coping with rain and hills.

After 4 weeks or so you'll be feeling more like a human and can do a bit more (though still not lift anything over 10 lbs). You may feel up to a little travel then, but (a) don't go anywhere there are issues with medical care -- either availability or payment issues. People still have complications at this point! Florida might be reasonable; (b) You're still not going to be able to carry even light luggage or do anything at all strenuous; and (c) You're not going to be able to drive until 8 weeks post-op. In other words, if you're determined to go somewhere, you'll be pretty dependent on others.

You may want to go visiting, if there's someone who won't be annoyed. Or you may want to postpone travel until you can enjoy it.

My experience? I'd have felt up to travel about 6 wks after surgery. I understand that women typically recover a bit faster than men.

Gordon

[mbcube]

Its really important to walk and rest the first few weeks. If your going to stay in Ohio, especially this time of year, make sure you can get to a mall for walks. They usually open at 8 for walkers (rather than 10 for shoppers - but check first!) Climate controlled, lots of benches for rests.
Most hotels have free shuttle services and perhaps you can set up a schedule with them, maybe an hour at first then a couple hours towards the end.
I'm a recent post op success and by 8 weeks I was biking 18 miles and walking 3 miles a day, but those first few days were very limited indeed.
I agree with other posters as its best to possible have a friend or family member with you once you get out. Afib, travel problems, refills, back massages, these are all areas where we can use some help those first few days.
Good Luck!

[Bucky]

Hey BrooksK.....I'll beat you in to Dr. Lever by one week or so. I see him on the 12th of January. So far I am unobstructed and not expecting to be a MYECTOMITE like many of our fellow members, but it's long overdue that I see a real specialist. I tried UCLA.....but did not get the info or evaluation that I think is needed. So I am "excited" (if that is the word for an HCM patient) to see Dr. Lever. Not expecting miracles, but maybe some additional information to help.

Good luck.

[LindaSo]

Shy Heart,
I commend you on your optimism. Don't loose it. Although some things may not be realistic, attitude is everything ! A positive attitude, fearlessness and being a very independent person got me thru without too many battle scars. Yes, I insisted on making my pancakes the way I like them my first day home. Although I needed help, I did what I thought I could do. Some things are easy and some things are hard. Go to Staples and buy an "Easy Button". Take it with you to Cleveland. When the nurse tells you to get out of bed, do it..............then press the easy button.

Dr. Smedira did my surgery, he is great at what he does. Best nursing care in the world, there in my opinion. I know, I'm a nurse. Just know that you won't be asked to do anything that they know you can't do. Attitude, attitude, attitude. You too will return home with the Red Badge of Courage on your chest.

Wishing you the absolute best !
Linda

[LindaSo]

Shy Heart,
An addendum to my last post. I just remembered my first outing when I returned to Florida. My friend took me to the ocean. I walked a short distance to a park bench at the Inlet. Was it a walk in the sand ? No. Did I watch the boats ? Yes, Pelicans, Yes. Relaxing, Yes. Got my mind off of what I had just walked thru ? Yes.
It was my second outing that I went to the beach. Walked on the sidewalk overlooking the beach and ocean. Again, just relaxed on a park bench and took it all in. I agree with you, no fun to walk in cold weather and Cleveland/Portland are cold. I don't "do" winter.
If you do go somewhere, take someone with you !!

Linda
HCM dx 4/07
Myecotmy 4/08 - Cleveland Clinic
ICD 10/08

[BrooksK]

My appointments with Cleveland Clinic are now "official"; the packet arrived today and I'm scheduled for various tests on Jan. 19th, 20th, and 21st with surgery on the 23rd. While I started the appointment process about a month ago, there's nothing like the packet arriving to make it more real.

When I talked with the surgical nurse/scheduler today, I was told when to stop certain medications including, somewhat surprising to me, plain, ol' multivitamins, calcium with vits, fish oil, and, not at all surprising, aspirin.

What wasn't mentioned was stopping the drugs my PCP has me on for high blood pressure, Benicar and amlodipine. While I agree that "a little knowledge is a dangerous thing," my reading on this site (and The HCM Book) indicates that Benicar, a angiostensin-receptor blocker, "is not usually prescribed to patients" and amlodipine "should be avoided" as both cause an increase in obstruction. My PCP is/was of the opinion I should continue on these drugs; my local cardiologist didn't "overrule" him; and Dr. Lever/Cleveland Clinic didn't make a recommendation based on the partial file that was sent them.

Since my thorough evaluation appointments (and likely surgery) is 5 weeks away, should I be insisting that drugs that tend to increase obstruction be discontinued now or "stay the course"?

[LindaSo]

Did you ask for a recommendation from Cleveland ? I would call Cathy back and ask her and if she doesn't know to find out for you. As you are finding out, she is very knowledgable, helpful and if she doesn't have the answer, she will get one for you. I would ask for confirmation to your PCP's recommendation.

I was very suprised to learn that I was to continue my meds, including the morning that I was operated on.