Anyone been to Hopkins?

[asmith1958]

I am trying to set up an evaluation appointment with Tufts or Hopkins. Hopkins is two hours away and Tufts 6? Anyone been to either facility and have a recommendation? Thanks

[Sarah]

Tufts has Dr. M. Maron, son of Dr. B. Maron, who is a pioneer in HCM care and research and it is an HCM center of excellence--in the top five for HCM. it is well worth the effort to go to the best doctor available. He's a nice guy, too.

I know someone who goes to Hopkins and likes them, but he also goes to Cleveland for Dr. Lever. He pretty much uses Hopkins as his local team and for second opinions on Lever's suggestions.

Hopkins is an exceptional place but I don't think they have the HCM expertise you are looking for--you should check with Lisa to see how long they've been handling HCM.

[drumfiend]

I am seeing Dr. Abraham at Johns Hopkins on Dec. 2. I will post when i get home...

[Reenie]

I think Dr. Abraham is a good doctor and he does know his stuff. He studied at the Mayo Clinic. That said, if you need interventions like a myectomy in the future I would go to Tufts or Cleveland. I've met Dr. Abraham and my husband has seen him. I've also met Dr. M Maron (Tufts) and Dr. Lever (Cleveland) at the HCMA conferences. This is just my opinion.

[RPMelia]

I had a comprehensive evaluation in summer 2007 at Johns Hopkins University (JHU) coordinated by Dr. Ted Abraham. Earlier that year Dr. Abraham presented at the HCMA Annual Meeting and it was that contact that led me to JHU.

Pat Adams at (410) 502-2903 is Dr. Abraham's nurse assistant and has been of great help to me.

My day started at 8:00 am and included an extensive history and review of my medical records and echocardiography with Dr. Abraham in the morning. JHU has well trained staff and the latest technology emphasizing "strain rate" echocardiography analysis. In the pm I met with Dr. Abraham to review the echo results; a cardiac MRI followed. Dr. Abraham was prompt and efficient in sharing results with me and my cardiologist in VA.

All the testing and consultations at JHU were in close proximity and well co-ordinated. There was sufficient free time for lunch and a quick tour of the historic Hopkins environment. Parking was convenient next to the Hospital.

I drove up from Northern Virginia the evening before and stayed at a local hotel. I enjoyed Maryland seafood and had a good night's rest before my early morning appointment.

There is no question about the excellence of Tufts/New England. As a native Bostonian I can speak highly about the Boston experience. But thanks to increased HCM capacity-building efforts, it is great that we have someone trained at Mayo such as Ted Abraham available for those of us in the mid-atlantic area that need an HCM specialist.

[Huntington]

Is someone in a position to share recent Johns Hopkins experiences?
I head up to see Dr. Abraham on October 15, 2009.

[hocmdoug]

I will be seeing Dr. Abraham on October 20th, 2009. I hope all goes well and I get some answers.

[Pam Alexson]

I am sure it will and you will .. best wishes.

Pam

[hocmdoug]

Hopefully....It's just not very comforting to hear that they may not have the expertise:confused:....I'd like to hear more to counter that opinion.

[Huntington]

Lisa suggested that I speak with her after I meet with Dr. Abraham. I look forward to doing so.

[hocmdoug]

I saw Dr. Abraham on the 20th of October for an evaluation of my current conditions.

First off, I want to thank Lisa for suggesting that I get in touch with Dr. Abraham and the HCM clinic at Hopkins. That was a great referral, and the trip from suburban Washington D.C. to Baltimore was easy on the Metro and MARC train systems.

We stayed at a downtown hotel near the Baltimore harbor. The hotel has a shuttle to Johns Hopkins, so the whole journey was trouble free.

The staff at Hopkins impressed me with their professionalism. I can see why they have been rated number one in terms of hospitals nationwide.

My two previous echoes---NOT done at Hopkins---were 15-20 minute affairs with disintrested technicians who were talking about what they did last weekend and what they were going to do the next weekend. I was seeminly a secondary concern.

This was not the case at Hopkins. All my questions and concerns were addressed. The echo took almost three hours and included valsalva, amyl nitrate, and exercise stress among other things. I really got the "works".

We had a break for lunch and had a time to look around the campus and the historical buildings. I can barely walk 50 feet at a time without stopping, but it was worth the effort to see the place.

In the afternoon I had an MRI. I am deathly claustraphobic, but the staff got me through the exam. That's miraculous indeed!

After the MRI, we met with Dr. Abraham for an hour. He discussed in great detail what the echo findings were. The MRI results are still pending but should be in by the end of this week.

The non-Hopkins echoes were vague in the results other than "asymetrical hypertrophy of the septum--1.8 cm", etc. The results we got with this echo was the specific location of the obstructive bulge, 2.3 cm thickness, SAM, mitral regurgitation and the fact that my mitral leaflets are longer than normal and that also plays a role in the obstruction.

I had a resting gradient of 40 mmHg and a provoked gradient of 89. So much for the previous diagnoses of "very mild". LOL

We are also looking at genetic testing and having other family members screened for HCM.

Dr. Abraham is going to adjust my medications. It seems the meds I have been on for 20 years for blood pressure increase the obstruction due to their ability to cause peripheral vasodialation.

Funny, I suggested that to previous Drs. and was brushed off. It really pays to see an expert like Dr. Abraham and others who have been identified for their excellence.

Anyway, we are going to give the new meds a chance for a few months. If the gradients do not drop to under 50 mmHg, it looks like I will be joining the myectomy club. Alcohol ablation does not look to be a viable option for several reason---I am sure most of you are familiar with the how's and why's.

In summary, I was impressed with my visit and HCM work-up at Johns Hopkins. I would definitely recommend Dr. Abraham and the Hopkins HCM clinic to anyone looking for an HCM specialist.

I know there are many fine HCM centers out there like the Cleveland Clinic, the Mayo Clinic, Tufts, etc. I think that Johns Hopkins can be rated highly as well.

[Cynaburst]

I had the opportunity to meet and chat with Dr. Abraham at the HCM Summit. I was very impressed with him and would certainly recommend him to anyone in the area. Glad you had a good experience.

[LindaSo]

Doug,
I'm glad you got the evaluation that you were expecting; technically skilled and comprehensive. Now that you know what the issues are, it sounds like there is a plan in place with a timeframe. That is great ! I'm so glad that Dr. Abraham is so close to your home, as there isn't alot of travel involved. Here's hoping that the medications decrease your gradient, however, it not, you are welcome to join our club: the myectomites!

[shirleymahoney]

Doug

Glad you had great visit with a good doctor, my son seen him and he said what a difference from the doctors here in Norfolk, it finally made sense to him.

Shirley

[Huntington]

Doug

Your October 20 scenario was much like mine on October 15; thanks for providing details about your experience.

I will see Dr. Abraham again on November 25 and in all likelihood have surgery on December 14.

We have the opportunity to read a great deal about myectomies at CC and Mayo in many HCMA postings; perhaps we will be in a position to write of similar success stories at Johns Hopkins.

Both of us of course now have good things to say about Dr. Abraham and Johns Hopkins.

I wonder whether someone might walk us through a Johns Hopkins, Dr. Cameron, myectomy experience.

John

[hocmdoug]

John,

I'm so glad you had a good experience too. I wish you nothing but the best with your follow-ups. You are getting good care for sure.

I too may face the surgery necessity sometime next year, so I would also be interested in anyone's Hopkins experience. I have no doubt about the quality of care we will get, but it is nice to hear the experiences of others who have gone down the same path.

[sueb]

I am so pleased an HCM specialist is at Hopkins and there is now an HCM clinic. I have been treated for 10-12 years in the "heart failure" clinic--not a good sounding clinic but excellent care for my HOCM. Dr. Dan Judge is my cardiologist and I have a new electrophysiologist, Dr. Sam Nazarian, who is a compelling guy because he is a very serious mountain climber. I am fine-tuned with 3 meds and an ICD, now with a little pacing thrown in for when I need it. They've kept me alive and pretty functional. I love my Hopkins physicians and my Hopkins care.

[VickiR]

Hi,

I had a myectomy last July at Hopkins.

Dr. Abraham is my cardiologist and Duke Cameron did the surgery.

I posted about the experience last summer and you can find it in the archives.

If you have any questions, please feel free to contact me.

Email would be the easiest way to reach me.

[Cynaburst]

Just a note: to easily find all of Vicky's previous posts, click on her name and you will get a drop down that allows you to easily find all of her previous posts, many of which address her surgical experience with Dr. Cameron.

[hocmdoug]

Thanks for the additional information about Hopkins. It is encouraging indeed.

I don't know how things are going to play out for me as yet. Meds don't seem to be lessening my symptoms yet. Surgery may be the option some time next year.

[shirleycomegys]

My husband had excellent care with Dr. Abraham and Dr. Duke Cameron at John Hopkins. Dr Duke Cameron is world known and an experienced doctor in performing this surgery. We were lucky to live only 2 hours away from JHH. Go on John Hopkins wed site and read about both doctors.

[hocmdoug]

I will be at Hopkins on the 20th and 21st of January. If anyone else is going to be there then, maybe we could meet.:)

[hocmdoug]

Everyone I have talked to when they find out I am going to Hopkins is like "wow". They are familiar with Hopkins medicine's reputation.

Here on the board, well, Hopkins doesn't seem to garner much respect, and I think that's unfortunate and quite possibly unwarranted. Just my first hand and humble opinion.

[VickiR]

I noticed the same thing.
Don't worry about it.
I had a good experience.

I only live 20-30 minutes from Hopkins.
If you need anything, let me know.
I am available the afternoons of the 20-21st.

[hocmdoug]

Thanks Vicki, I will keep that in mind.:D

[Linda]

Doug - I really don't think it's a lack of respect for JHH - it's more a lack of experience. We now have several members who have that experience and we need to hear their messages. That is what will give us a picture we can relate to.

I have had two family members who had heart surgeries at JHH - by Dr Cameron - I can't say enough good things about their heart center and that surgeon. However, neither of their surgeries was a myectomy which is very specialized surgery. Nieither had HCM. I would never pretend to have info that I didn't really have.

So - each person is going to be able to relate first hand experience with the facility they were treated in - you can be the lead in promoting JHH! They have very well respected and experienced team members. The facility itself is known and recognized around the world.

Linda

[Pam Alexson]

I agree each new experience and members who are willing to take the time to give details about their positive experiences and expand helps us all be informed and learn about each place. The goal is to have expert care easily accessed, user friendly and geographically close to all HCM patients. The more experts and centers we get.. the better for us all.

[Huntington]

It is a bit too soon for me to write all that much about my JHH experience as I have not yet reached my 5 week mark and as I have not yet had a follow-up appointment/testing to assess my progress. Suffice it to say that I am very much aware of the fact that we do not read all that much about myectomies at JHH. My experiences to date with Dr. Abraham and Dr. Cameron have been nothing but positive. My JHH CICU experience was not one which would generate positive thoughts. My progressive care experience was reasonably good. I was discharged on the 21st after surgery on the 17th and about that I was happy. My recovery has been steady notwithstanding occaisonal steps backward. I look forward to being in a better position to determine the extent to which the surgery was successful.

[Huntington]

I live in Southwestern Virginia (near Virginia Tech).

In July 2009, when my exercise intolerance had continued to worsen, a stress echo made it quite clear
(with plummeting blood pressure upon exercise and obstruction) that it was time to consider myectomy or ablation.

My MCV cardiologist referred me to Johns Hopkins; as Johns Hopkins is about one hour closer than Cleveland Clinic and as I had not spent a great deal of time on the HCMA web site, I decided to follow through with the Johns Hopkins referral.

Lisa let me know that Johns Hopkins does not provide very much information about myectomy volume but that she hoped to learn a lot more about the Johns Hopkins hypertrophic cardiomyopathy team over time (I recognized that to some extent I was a guinea pig).

I saw Dr. Abraham in October and November 2009; I was unquestionably happy with my experiences with Dr. Abraham.
In October, Dr. Abraham chose to give me an opportunity to work with a new regimen of medication. In November, it was clear that surgery would be the preferred course of treatment.


As I live five hours away from Johns Hopkins, I wanted to avoid the standard preop visit with Dr. Cameron; I let it be known that I
with comfortable with Dr. Cameron and did not feel that I needed to see him several weeks before the procedure.
I did not know how my request to deviate from normal protocol would be received but he was very accommodating
and did not make may drive 10 hours just to speak with him for 20 minutes about the surgery.

I was given the date of December 17 for my surgery (almost precisely the date that would work best for me; I am a self-employed attorney and had let Dr. Abraham and Dr. Cameron’s scheduling secretary know that I hoped my recovery period would coincide with the holidays as much as possible).

I spent the night of December 15 in a Baltimore hotel, had a heart catheterization on the December 16, had preop blood work and as I recall a chest x-ray on December 16, spent the night of December 16 in the hotel, and arrived bright and early at the hospital on the morning of December 17, the day of my surgery.

Upon arriving at the hospital early on December 17, I spent 20 minutes or so speaking with Dr. Cameron in a conference room adjacent to his office. Dr. Cameron was patient, pleasant, confident, experienced, and well organized. In short, I liked him very much.

He walked me to the pre-op suite and it wasn't long before IVs were started; frankly, I don't remember all that much about what was going on. I do recall that the pre-op team members were a bit anxious about getting their jobs done as quickly as was apparently expected of them. I think that I may have put things a little bit behind schedule by talking with Dr. Cameron in his office as he requested; this bothered me none at all because I had simply done what Dr. Cameron had asked and he is clearly the big shot.

I remember speaking with my anesthesiologist, Slava. He was nothing short of great. He extended a warm smile, provided plenty of information, and had an appropriate sense of humor to boot.

My CCU experience was not so great; the determination of whether I was ready for removal of my breathing tube caused me distress as I felt like I wasn't getting enough oxygen - I imagine this whole process is not very pleasant for anyone. I encountered muscle spasm that was extremely painful when I sat up and surprisingly, the staff was ill-prepared to address my pain as quickly as should have been the case. I had a 23-year-old nurse who was befuddled over what to do about my pain and was clearly far more concerned with another patient, a new admission, that apparently required more attention than did I. My first nurse in CCU was excellent; my second nurse, the 23 year old, had no business being responsible for two CCU patients at the same time. Happily, I was out CCU at 3 p.m. or so the day after my surgery.

There was insufficient clarity about where I would be heading after I left CCU, that is, whether I would be going to a progressive care single room or something else. This is something that I should have clarified before surgery. I was offered a semi-private room while in CCU but I had no interest in a semi-private room. Fortunately, I did not have to wait very long for a private room in progressive care.

My progressive her experience was reasonably okay although I found the volume of the heart monitors in the nursing station disturbing.

People did not say all that much about what was going on with my heart but presumably that things were going reasonably well as I was walking very quickly after getting to progressive care and discharged from the hospital four days after my surgery.

I will know a lot more about my condition on January 28, the date of my follow-up visit (my surgery was December 17).

If I were equidistant from each hospital would I choose Cleveland Clinic for a myectomy?

If insurance did not favor one facility over another when they choose Cleveland clinic?

I am not sure.

When one walks through the hallway of Johns Hopkins and sees it rated as the top hospital in the country for something like 10 years in a row, it is hard to ignore that fact.

About all I will say at this point is that it is my understanding that Dr. Cameron performs approximately two myectomies per week. I found him accommodating, informative, experience, competent, and pleasant. I am not the slightest bit unhappy with my choice to go to Johns Hopkins.

[hocmdoug]

Thanks Huntington for the honest assessment of your experiences at JHH. Hopefully the hospitals we work with here will listen to feedback about patient's exeriences

I think perhaps it is right to reframe "lack of respect" for "lack of experience" in terms of how JHH is perceived in this community. Thank you Linda and Pam for providing a different frame of reference to ponder.

I had an ICD placed this week at Hopkins, and I thought things went very well. I know that's small compared to open heart surgery, but I was a bit nervous anyway---well just about anything can make me nervous (LOL).

Dr. Marine and staff did a good job of putting me at ease. All of my questions before and after the procedure were addressed.

Now if I can just learn how to sleep on my back without waking my self up from snoring, I'll feel a whole lot better.:rolleyes::D

[hocmdoug]

Oh, and I wanted to add that if I do need the myectomy surgery at Hopkins, I will draw on Huntington's experiences and ask about things like the critical care follow-up. Priceless information---thanks so much for sharing.:D

[Huntington]

The following discussion is an excerpt from my response to an inquiry from one interested in learning more about Johns Hopkins as she was weighing a decision whether to seek treatment at Hopkins or the Cleveland Clinic. There was a particular question about pre-op procedures in the inquiry.

At the Johns Hopkins Cardiomyopathy Clinic, my initial consult included an ECG, echo, stress echo, evaluation of my ICD, and a lengthy consult with Dr. Abraham. Dr. Abraham discussed my condition in great detail; he patiently answered my questions and charted a conservative treatment plan.

My sense was that every effort was going to be made to tackle my problem without surgical intervention before surgery was recommended. This approach led to a follow up visit with a repeat of the ECG, echo, stress echo, ICD evaluation and another lengthy consult with Dr. Abraham.

After surgical intervention was recommended, I learned that the pre-op process would include an X-ray, MRI (unless one has an implanted device as do I), blood work, a catheterization (in many instances), and a consult with the surgeon (in my case, Dr. Cameron), who will not be hurried and who will discuss matters in detail.

In my case, after making my decision in November to go forward with the myectomy in December at Hopkins, I was confident and committed. This trust and commitment along with logistical concerns resulted in my asking to dispense with the “normal” weeks in advance of the surgery; my perception was that the consult would be more for my benefit than the surgeon’s. I trusted the fact that Dr. Cameron of Johns Hopkins, who was referred by Dr. Abraham of Hopkins’ Cardiomyopathy Clinic, knew what he was doing. In my case, I was comfortable with my understanding of the procedure, in part thanks to HCMA and Lisa, and at peace with my decision to go forward with surgery at Hopkins.

My wife confirms that our “day of” consult with the surgeon was adequate in her eyes [It is important to note that this was not normal protocol – rather, this was an accommodation to me; the “day of” consult was at my request, not the surgeon’s suggestion]. Neither my wife nor I felt rushed when we met the surgeon, Dr. Cameron. I am glad I did not need to drive 10 hours simply to speak to a surgeon about a procedure about which I was committed. I do not advocate that others should ask to dispense with the traditional protocol of meeting with the surgeon weeks in advance of the surgery. People are different. I was fully comfortable with my decision. I had rather exhaustively researched the procedure and alternatives. With the benefit of hindsight, proceeding as I did was the right decision for me. The fact that Dr. Cameron was willing to okay my request is in my mind commendable.

When I had my second consult with Dr. Abraham back in November, we didn’t know what the tests would show. We didn’t know that it would become clear after the tests of November that I should have surgery. Had we known this it might have been plausible for me to meet with the surgeon immediately following the November follow-up testing. But our determination was made only upon evaluating the testing of November. It was at that point unreasonable to think I could simply walk down a hallway and talk for an hour or two with the surgeon.


To be sure, I too wondered in early December whether to head off to CC. I called Lisa and talked about my circumstances. She was candid in letting me know she has a lot more experience with CC than Hopkins. But Lisa, who absolutely would have encouraged me to steer clear from something other than a center of excellence, was not uncomfortable with Hopkins.

With regard to tackling structural abnormalities, I don’t have much to say. I think Dr. Cameron is probably one of the top valve surgeons in the country. In my case, an MRI was not possible. Suffice it to say that my pre-surgery research led me to believe that Dr. Cameron would be well equipped to tackle that with which he was confronted during the surgery.

[Linda]

John - you've painted an excellent picture for us, very reassuring. As I said earlier, I was quite familiar with Dr Cameron in other heart surgeries, I know Dr Abraham quite well, very impressive man, and now I see Dr Marine mentioned - top notch from what I know of him!

Good info for all of us - Thanks - Linda

[hocmdoug]

Yes indeed, thanks John for sharing your experiences.:D

One thing that has also worked out well for me with Dr. Abraham was bringing up the topic of having an autism spectrum disorder--Aspergers Syndrome (AS).

Having AS can make communications difficult for me at the least. Dr. Abraham has been really good at understanding this reality. That has been absolutely HUGE for my wife and I in dealing with this thing called HCM. And as we all know here, HCM is a handful by itself.

It has really helped that Dr. Abraham understands this and works well with my self-admitted social awkwardness. :cool:

[gkfalwell]

Our 16 year old daughter had HCM attack in Nov. in Hershey PA, had an AICD implanted, and was transferred to Kennedy-Krieger institute, which is connected with Johns Hopkins Hospital. We are very frustrated because they told us would take two months to get an appointment with their Cardiologist, apparently there is only one that is an electrophysiologist dealing with HCM and AICD. I leave it up to the other experts to suggest what would be best in your case, but just be prepared for slow response if you get the same treatment we did.

[Linda]

gk - I see you've posted a similar message on 2 threads, Cynthia responded to your other post suggesting that you ask for a consult with Dr T Abraham. I just want to add that although JHH and Kennedy Krieger are affiliated, they are quite different and the coordination is not always there as readily as if you were an in-patient at JHH. Do as Cynthia suggests and pursue this - call the HCMA office if you need some help and guidance or you can make the call to the Cardiology department yourself.

I've been wondering how your daughter was doing. Can you share more info with us? I hope she is making steady and rapid progress. I can only imagine the toll this has taken on you and your entire family.

Wishing you the best - Linda