Testing at Cleveland Clinic

[JudyA]

Hi! I've been mostly lurking lately, but I have not been idle. I have kept up on everybody's posts, and have been working on keeeping as healthy as I can. About 8 weeks ago I finally made that appointment to go see Dr Lever at Cleveland Clinic.

I had an alcohol ablation in Salt Lake City, where my HCM was finally diagnosed. in December 2005. Now back in my home in Ohio since August 2006, I still have concerns over some symptoms I have been having and so I finally am going to be seen by a true specialist for a full evaluation and "baseline" to work from.

I have no confidence at all in the local cardiologists that missed my diagnosis for 5-6 years, but maybe Dr Lever will know who would be the best in Columbus to go to on a regular basis My appointment with Dr Lever is on April 18th, 7:45 AM, for one, maybe part of a second day of testing.

I have been working hard to get my asthma under control, and haven't experienced much wheezing for about a month. I also had pulmonary function tests done a few weeks ago and will take those results with me. My PCP and I figured having a recent set of Lipid results would be a good idea so I will have those drawn in the morning.(My last cholesterol was just over 300)

Since this appointment is really coming up on me fast, I am getting anxious and nervous. My husband is ultra cautious about unneeded expenses( translation= grouchy and miserly) I think the worst thing that could happen is that after the tests, Dr Lever says " not much wrong right now, why are you here?"......

Is there anything else that anyone can think of, that I will need that day, besides my medical records a good book and a lot of patience?

Thanks for any input!


Judy

[Tricia Wonderly]

You can tell the "miser' that you will get the best bang for your buck from Dr. Lever! CCF is outstanding and professional. Dr. Lever is an expert and will leave no leaf unturned. I would not be anxious, but happy and relieved that you are being seen at one of the top HCM centers in the country.

Best wishes for a positive experience at the CCF.

tricia

[SheilaGail]

Hi Judy , You need your records yeah. CCI does all of their own testing there with their requipment, the techs there know what they are looking for and know what they are looking for. the CCI is very organized, with lots of freindly staff. We drove the day before and stayed at the Days Inn it was $67 with/tax in Independence, Ohio about 15 minutes from the clinic. I77N. Parking is $10.00 at the clinic. Eat outside of the direct cleveland area before you get there if you can. theres not any kind of fast food to eat right around the clinic. except kfc, and a nasty mcd's. the mc'ds in independence, oh is good for breakfast. . if you dont see anything to eat before you make your exit, we eat in the cafeteria for lunch usually. good luck?
i was diagnosed in 1999 and my doctors here in my hometown knew nothing about my disease. I got on-line and made my own appt. there in Cleveland. Lever is a good guy - beware of his bedside manner, he is very matter of fact kind of guy. I saw him for my post-op this past February.
Dr. Lytle did both of my surgeries, he looks like Einstein you will really like him if you have to have surgery.
good luck

[THW]

Judy,
I just got back this evening from my annual check up with Dr. Lever. I absolutely think the WORLD of that man! I'm not sure what is meant when people talk about his bedside manner, because my experiences have been that he is always completely appropriate, professional, thorough, knowledgable, honest, respectful, and down to earth. He really meets you where-ever you are in your HCM knowledge and experience and NEVER makes you feel rushed. But the one thing I can think of that you will need besides your records, list of meds, a good book, and patience, is to have a list of questions already written out, and a pen and paper to write down his answers/explanations. He is great to talk with and he cares SO much about his patients. He has dedicated his life to this disease, and I have a tremendous amount of respect for his expertise and the person he is to his patients! And I know there are many others here, too, who are members of the Dr. Lever Fan Club :))
Keep us updated.
Theresa

[Pam Alexson]

Judy,

I just want to say good luck and keep us informed ... I know nothing of the CCI experience as I am a TNEMC girl myself.

Pam

[JudyA]

Thanks to all for the encouragement, I certainly need it these days! LOL
My home is a three hour drive from the Cleveland Clinic, but both my father's house and my mother-in-law's house are only an hour away, so if i need to stay over for further testing on Thursday, we will stay with family.

It sure is a large complex, even with a map I am going to allow for extra time for getting lost! We will take along munchies for in between tests- and according to my schedule of tests,I start at 7:00 AM and should be done by 6 or 7 PM and on the way home with my holter monitor.

They had to send me my schedule overnight mail on Thursday,because the first one got lost in the mail somewhere. Jeez!

Thanks, Judy

[tommysgirl]

Don't let the map scare ya! It is very easy to manuver around CCF. There are clearly marked signs and many peolpe that are stationed around the complex to guide you on your way. The day goes pretty fast, you are on the go a lot of the time.

As for Dr. Lever. He truly has dedicated his life to this disease. I met him 15months ago. Have been to CCF to have Tommy seen "on a moments notice" five times. Dr. Lever calls me at home and would talk through what was currently happening. We would discuss our options and make decisions on treatment. He is a top specialist of this disease. He is very interested in keeping his patients as well and active as they can possibly be. My Tommy has been a challenge for him. I thank him and Dr. Smedira! They wanted so much to give Tommy back a normal life, after another doctor gave him bad treatment. They did give us an extra year plus.

I will always remember how honest, compasionate and dedicated Dr. Lever is to his patients. I wish their were more doctors out there like him!

Good luck on your visit, he'll make sure you are well cared for.
God Bless!
Sherry

[JudyA]

Just reporting back after my testing. Sorry this is so long- I tend to be longwinded!

Well folks, I need to pull out a little salt(substitute of course) and pepper to eat a few of my words and to thank a few individuals who encouraged me to see an HCM specialist. I had an alcohol ablation in Dec 2005 and had hoped that everything was going well, and went to CCF for a checkup to see how good I was doing. At least now I know where I really stand.

It's been a week since I saw Dr Lever at the Cleveland Clinic. The result from the MRI show that the alcohol ablation took out much of the obstructing septum tissue in the left ventricle, and at the same time took some from the right ventricle side. At least Dr Lever says there are no holes, nor is it dangerously thin.

The results from the echos (2D and 3D ) with and without provocation(Amyl Nitrate) show that I have no gradient at rest but I have a gradient of 100 under provocation. A small portion of my septum is still close enough for the mitral valve to make contact under provocation.

He did not feel that I would be able to do the metabolic stress test and so I did not, but I brought the results of a recent Pulmonary Function Test.

The most important issue he wants me to address is my weight and suggests losing 100 pounds in the next year! and to regard that prescription just as seriously as i would the order to take a certain medication. I've started on that( really hard to do) and I am about 5 pounds lighter than I was at this time last week. I hope I can keep it up since he hinted that bariatric surgery might be necessary otherwise.

He took me off of the Atenolol feeling that it has been triggering my asthma and put me on 360 mg of Cardizem a day. I'm not sure that I will be able to continue with it though- my pulse rate is 84 at rest and goes to 100, and 120 with very little activity. Are calcium channel blockers supposed to work as well as beta blockers? Is Cardizem more effective the longer you take it?

I called today about the results on my holter monitor, I suspect he will call me back tomorrow and about what to do about my elevated heart rate. Last week he said that he will see me again in 6 months.

The Cleveland Clinic itself is facinating in how they handle so many people each day, and all the staff were very nice. Dr Lever is amazing and as several has said he is a wonderful doctor. Well this is soooo long already I better stop. Thanks for listening.

JudyA

[SheilaGail]

How much do you need to lose?
Levere told me that "I needed to lose weight". He made it sound like my lack of energy and fatigue was all due to my weight problem.
Prior to HCM I wasn't so fluffy, I have always had a problem with weight. The FAT GENE runs in my family.
How much do you need to lose?

[JudyA]

SheilaGail,

I need to lose a lot. 150 pounds would be ideal. He said many things that related to me about how my weight was affecting me and how my heart was working. My husband was there and so I put Dr Lever's recommendation into a concept my husband could understand. I said to him(Dr Lever) " sooo, I should consider losing weight to be as important as any cardiac medicine you would give me, right?" and he wholeheartedly agreed, that those words were a good way to say it.

I didn't mean to misquote Dr Lever- basically those were my words- and I have needed to hear them from someone with his experience and skills for it to sink in that I REALLY need to lose this weight.

I'm sure he didn't mean that your weight was causing the fatigue and lack of energy. I'm sure he meant that, in light of your HCM, losing weight would reduce the strain on your HCM heart and you would have more energy. That is how I took his words, and I think I will feel better at a lower weight.

It is interesting that you should say you've got that "fat gene"- so do I!! and my parents and my sister and brother too. But you and I have also had HCM our whole lives, we just didn't know it until relatively recently.

I see from your intro that you have had two myectomys. I have had an alcohol ablation and Dr Lever mentioned to me that if we need to do a myectomy, for me, I would end up needing a pacemaker, so certainly I will try to lose the weight. If I need that myectomy somewhere in the future- I need to be thinner to be a better surgical risk.

JudyA

[Mary O'Shannon]

I have been taking a calcium channel blocker for 16 years, and have done very well on it. It's the only heart medicine I take. My cardio doc tried to add a beta blocker last December, but it just doesn't work for me. It makes me like a zombie, with even a half of the lowest dose... my bp and heart rate get way too low.

I am hoping with the reduction in my gradient that I can take less of the Verapimil I've been taking so long. I take two 240 mg tablets a day. But so far, my body still seems to want that. And even if I have to stay at that level, I have never been able to see any negative side effects for myself on it. And I react to a lot of allopathic medicines.

Sheila... I wasn't as "fluffy" (that's my pet word for my extra weight, too :>) before my HCM appeared either. It is really hard to lose weight when you can't exercise. But I had started to lose some weight, even before my improvement. It just takes an awful lot of discipline when you have to do it all with eating, and no real exercise.

What works best for me is a high protein approach. If I do that, I lose my craving for sweets. I just focus on high protein sources, like lean meats and eggs, and eat lots of fresh fruits and vegetables, too. I've lost about 12 pounds but I need to lose about 40 more.

Hope this helps... blessings... Mary

[SheilaGail]

I need to lose lots too, I weigh 247 now, I am 5'6", small upper frame, large bottem half. I would love to lose down to 145. My heaviest was 298, several years ago. I cant believe that I weighted that much. I was down to 238 before I had my second surgery. My size 22's are big and a 20 is too tight, except in stretchies.
My HCM was diagnosed around 1998, my memory is not was good as it used to be.
Weight watchers is the best program, it teaches to make wise choices concerning what to eat or not to eat. To be honest, I look at myself and what I eat in a day and I can't believe how come I am still big.
My mom weights about 300 my younger sis had gastric by-pass and she must of weighted 500 she wore a 32, she's now into a 22/24. I have that fat jean.

I wish you the best. Praying about what to eat and asking the Lord to help you make wise choices is really beneficial. and I cut out white stuff for a long time. potatoes, i quit buying them, and stay away from bread.
theres lots of good programs out there. food network.com has some great recipes. good luck,. good to hear from fellow hcm member

[tommysgirl]

I myself am overweight. I also work with many cardiac, diabetic, and other chronic diseased patients that are very overweight. We educate them in a balanced diet. One of the best results we've had with our patients is the weight watchers program. If you don't want to attend the meetings, you can join online for 16.95 per month. It gives you access to menus and many other tools to aid you in your program. this may be an option worth looking into. I wish the best of success to all of you. Remember to not focus on the totl needed to be lost. Focus on changing habits and make a goal for 10% weight loss first. Once you've reached that goal. Set another goal for 10%. This works better and seems to encourage people more.

God Bless!
Sherry

[Cynaburst]

I also did Weight Watchers a few years ago and lost about 25 lbs. I gained back 15 or so in the year before my myectomy, but since my surgery 8.5 months ago, I have lost almost all of it using the same concepts I learned in WW. I have not been strictly following the plan, but as Sherry said, they teach a way of living that can be easily maintained, so I have just been trying to exercise alot and to eat the sensible way they teach. The thing that I found the most useful was portion control -- weighing everything, and being able to figure out how many points it was. I always ate heathily - my problem was just eating too much. When you have to measure everything, it really makes you learn how much is the right amount.