Hello! As of today, I am a new member of this Mayo Connect page, not a new patient at Mayo Clinic. I visited the clinic in Scottsdale, AZ, two times; 1 for six days, the other for four days, and then Rochester, MN, for two days – for a different medical problem. At the end of September, I was diagnosed with Hypertrophic Cardiomyopathy after going to the ER at the Oklahoma Heart Hospital with A-Fib for the first time. Everything went downhill from there. After all the tests, the 2 hours MRI showed my results. Today, I informed my Cardiologist at our Heart Hospital that I am a long-time patient at Mayo, and he said, "Why did you not tell me you need to go there;" I was impressed. He is a big-time follower of the Mayo Clinic in Rochester and follows all of Dr. Steven Ommen's writings and videos. He said he would love to have the doctors inform him of the treatments and follow my treatment directions.
So, I'm calling tomorrow to book an appointment. If you have gone to Rochester, what is an excellent hotel to go to, close to the hospital? As I am sure of most of you, I cannot walk very far. I do have an elect chair I can bring if necessary.
I look forward to following all your posts and praying that the doctors understand and know this wretched disease becomes greater and greater. Bless you, all!
Welcome to the HCM group. You have already experienced the center of excellence the Mayo Clinic is, so you know you are in good hands. Dr. Ommen is not only the top expert in the world on HCM, but he's a super nice guy too. I had a septal myectomy last summer in Rochester. My significant other and I stayed at the Courtyard Marriot, which is literally across the street from St. Mary's hospital. From this vantage point you are easily within walking distance to not only the hospital, but many restaurants and the really nice Fresh Thyme market. The advantage of this location is also for your loved ones. It's so convenient for them as well, the front entry is right there. The other advantage (like how many are there?) is that you walk across the street, hop on the free shuttles to the Mayo Clinic downtown for any tests required there. And Chester's is downtown! Yum! This is only my opinion regarding the Courtyard Marriot. Others may have another opinion. The hotel was clean, the staff friendly. They served Starbucks and had a bar. Can't ask for much more! The Mayo Clinic must have several thousand wheelchairs in service. They are in every store and hotel I think. People take them to their hotels. The hotels store them. The hospital comes to get them. You should not have to worry about a wheelchair. If you are having surgery, they want you to walk 900 times a day (exaggeration--more like 12) so you will walk around a lot, weather depending. But you keep the chair as long as you need. Snoop around this group site. There is A LOT of information from people just like you, in just your situation. We all can identify with each other. Tips, suggestions, experience. It's all here. This is special group to be sure. Not everyone has what we have, and not everyone is blessed to go to the Mayo Clinic. They are the best in the world. Your care will be outstanding.
Hello! As of today, I am a new member of this Mayo Connect page, not a new patient at Mayo Clinic. I visited the clinic in Scottsdale, AZ, two times; 1 for six days, the other for four days, and then Rochester, MN, for two days – for a different medical problem. At the end of September, I was diagnosed with Hypertrophic Cardiomyopathy after going to the ER at the Oklahoma Heart Hospital with A-Fib for the first time. Everything went downhill from there. After all the tests, the 2 hours MRI showed my results. Today, I informed my Cardiologist at our Heart Hospital that I am a long-time patient at Mayo, and he said, "Why did you not tell me you need to go there;" I was impressed. He is a big-time follower of the Mayo Clinic in Rochester and follows all of Dr. Steven Ommen's writings and videos. He said he would love to have the doctors inform him of the treatments and follow my treatment directions.
So, I'm calling tomorrow to book an appointment. If you have gone to Rochester, what is an excellent hotel to go to, close to the hospital? As I am sure of most of you, I cannot walk very far. I do have an elect chair I can bring if necessary.
I look forward to following all your posts and praying that the doctors understand and know this wretched disease becomes greater and greater. Bless you, all!
There is a hotel right next to the main clinic. I think it is called The Kahler. It connects to the clinic with a covered bridge over the street. Mayo will send you a packet with all the information you need. The packet includes maps that show where everything is located. As for a wheel chair, they not only provide free wheel chairs, they also provide someone to push you around to wherever you need to go inside the clinic. Also, there are continuous free shuttle buses that pick you up at your hotel/motel so it really doesn’t matter how far you are from the clinic. You may want your electric wheel chair for your convenience at your hotel. But check with your hotel about that. They may have some available. I don’t know about that. Best of luck to you. You are in good hands.
There is a hotel right next to the main clinic. I think it is called The Kahler. It connects to the clinic with a covered bridge over the street. Mayo will send you a packet with all the information you need. The packet includes maps that show where everything is located. As for a wheel chair, they not only provide free wheel chairs, they also provide someone to push you around to wherever you need to go inside the clinic. Also, there are continuous free shuttle buses that pick you up at your hotel/motel so it really doesn’t matter how far you are from the clinic. You may want your electric wheel chair for your convenience at your hotel. But check with your hotel about that. They may have some available. I don’t know about that. Best of luck to you. You are in good hands.
Welcome to the HCM group. You have already experienced the center of excellence the Mayo Clinic is, so you know you are in good hands. Dr. Ommen is not only the top expert in the world on HCM, but he's a super nice guy too. I had a septal myectomy last summer in Rochester. My significant other and I stayed at the Courtyard Marriot, which is literally across the street from St. Mary's hospital. From this vantage point you are easily within walking distance to not only the hospital, but many restaurants and the really nice Fresh Thyme market. The advantage of this location is also for your loved ones. It's so convenient for them as well, the front entry is right there. The other advantage (like how many are there?) is that you walk across the street, hop on the free shuttles to the Mayo Clinic downtown for any tests required there. And Chester's is downtown! Yum! This is only my opinion regarding the Courtyard Marriot. Others may have another opinion. The hotel was clean, the staff friendly. They served Starbucks and had a bar. Can't ask for much more! The Mayo Clinic must have several thousand wheelchairs in service. They are in every store and hotel I think. People take them to their hotels. The hotels store them. The hospital comes to get them. You should not have to worry about a wheelchair. If you are having surgery, they want you to walk 900 times a day (exaggeration--more like 12) so you will walk around a lot, weather depending. But you keep the chair as long as you need. Snoop around this group site. There is A LOT of information from people just like you, in just your situation. We all can identify with each other. Tips, suggestions, experience. It's all here. This is special group to be sure. Not everyone has what we have, and not everyone is blessed to go to the Mayo Clinic. They are the best in the world. Your care will be outstanding.
Excellent! Dr. Ommen and everyone at Mayo Rochester are fantastic people right down to the janitors. I am 81 years old and had my septal myectomy in Rochester last January after three cardiologist in the city I live in told me I was inoperable because of my age. Fortunately, an honest and humble thoracic surgeon here told me he didn’t have the equipment or enough experience and I should go to Mayo Rochester. He also offered to do my post surgery care. I took him up on that and he did an excellent job. I now feel like I am 60 years old again. I won’t kid you. The recovery was a little rough but nothing I couldn’t handle as long as I followed what the nurses and doctors told me to do. My turning point was cardio rehab. In two weeks from now, I go back to work teaching two online college courses. I’m so grateful and happy. I’m excited about life again. Best of luck to you. You have made the right choice in my opinion.
I hope all goes well. It's not like a fun vacation, but try and make the most of your time there. The hospital staff, the ancillary staff, pretty much anyone you come in contact with are very kind people. The weather may be chilly, so be prepared. The services offered to shuttle you between clinics and hospital is super easy to figure out. And there is always someone to help guide you around. Keep us posted on your journey. The Mayo makes it easy even if you get lost in the basement of the Gonda building. Someone will help you find your way out 🙂
Hello, and welcome to a wonderful place to find information and share your experience with a unique group of folks who have gone, are going, or plan to go on the same journey as you. That being said...as with all things in life... the answer is "it depends!" It depends on you. Your individual life-style. Your personal way of dealing and healing. Being active before is the best possible advantage you have on your side. But if you don't listen to your doctors, your body and do too much too soon you could delay your healing process. Since everything depends on your individual circumstance it's difficult to say with authority "Oh yeah... you'll be back lifting heavy things and racing in no time." How was that for dodging your question? In reality, your outcome truly does depend on you. But I can say with authority (I had a septal myectomy/papillary myectomy last summer) that being active enabled me to resume daily life activities much sooner than some. The lifting part takes time. You can't for 6 weeks or so. You have to let your sternum heal. Then you can progressively include more, but listen to your body. You won't want too sometimes because you know how you were, but you won't be able to for some time. It's okay. I was a big time hiker in our local mountains (They are literally all on fire right now) I walked, I did swing/ballroom classes for hours each week...all of which were taken from me by the HCM. A year out I'm walking and doing smaller hikes and grateful for the blessing of have had the best possible care by the Mayo Clinic. Everyone's journey is different. Everyone reacts differently to this massive, invasive surgery. But once you realize you survived, you endured, you came out the other side of a challenging ordeal...you will know you're pretty special. Your scar will be a source of comfort and a reminder of how strong you are. As far as the Metoprolol, that's an easy answer: It depends! Ha! It's true. So I was on 50mg in the hospital. Decreased to 37.5mg twice a day. Four weeks ago Dr. Ommen lowered it to 25mg twice a day in the hopes that some of my symptoms would dissipate. So even a year later, some tweaking may be necessary, but not everyone and not every time. You're in good company here. Feel free to reach out. I secretly stalked this group for several months before I got the courage to ask people about what to expect. It's been a great source of information and I was so grateful to those who took time to answer my questions. Some questions were dumb ones too...like about wearing a bra or foot ware choices...But hey. If you don't know and don't ask then you won't know, you know? 🙂
Best wishes to you. The Mayo is the finest institution on the planet. But I'm a tiny bit biased. They really know what they are doing and you are in the most capable hands and capable place you could be. This is not a surgery that you would want done just anywhere. You need a Center of Excellence. And they are!
I am now 8 weeks post op. Thanks to Mayo they setup all of the doctors appointments in my home state of Utah with the doctors they trusted. My Utah based Mayo Trained Cardiologist just had the local Thoracic Surgeon check out my stenotomy. My sternotomy is 80% healed. Be sure you take care of and follow advice of Mayo's Surgeons about caring for your sternototomy!!! The heart surgery is soft tissue and heals within 7 to 10 days. Then Sternotomy is in constant motion and I heard from my 40 year friend who is an ER MD who's sternotomy has not healed since receiving a Triple Bypass surgery 3 years ago, basically called a "Non-Union" which is not good.
We stayed at the Kahler Grand Hotel where we stayed. Their service was great! They provided 2 meals per day with a nights stay, Breakfast & Dinner. The Kahler is in the center of Rochester, MN. Close to all of the initial appointments and only one mile free shuttle or short walk to the surgical center. Good Luck! You are in the best hands and as a Retired 40 year Veterinarian, I wished they practiced human medicine & surgery every where in the USA like they do at the Mayo! Be sure to go to YouTube and Amazon to watch the documentaries on the Mayo Clinic as well as Drs. Ommen and Dr. Shaff talked about treatment of HCM. These videos sure helped lowering my anxiety!
Oh ugh! That is a common plague for a lot of us! Not to frighten you, but mine lasted ten months or more and still bothers me from time to time. Don't push yourself, but don't be afraid to go a little further every day. Our bodies are amazing and even though the healing process is different for each of us...it's a miracle what time can do. My FP doctor (who was born at the Mayo!) recommended a yoga pose called "eagle arms," not right away, you're not far enough along. But in time, maybe it can help you too. So good to know you are coming along so well. Best wishes.
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Welcome to the HCM group. You have already experienced the center of excellence the Mayo Clinic is, so you know you are in good hands. Dr. Ommen is not only the top expert in the world on HCM, but he's a super nice guy too. I had a septal myectomy last summer in Rochester. My significant other and I stayed at the Courtyard Marriot, which is literally across the street from St. Mary's hospital. From this vantage point you are easily within walking distance to not only the hospital, but many restaurants and the really nice Fresh Thyme market. The advantage of this location is also for your loved ones. It's so convenient for them as well, the front entry is right there. The other advantage (like how many are there?) is that you walk across the street, hop on the free shuttles to the Mayo Clinic downtown for any tests required there. And Chester's is downtown! Yum! This is only my opinion regarding the Courtyard Marriot. Others may have another opinion. The hotel was clean, the staff friendly. They served Starbucks and had a bar. Can't ask for much more! The Mayo Clinic must have several thousand wheelchairs in service. They are in every store and hotel I think. People take them to their hotels. The hotels store them. The hospital comes to get them. You should not have to worry about a wheelchair. If you are having surgery, they want you to walk 900 times a day (exaggeration--more like 12) so you will walk around a lot, weather depending. But you keep the chair as long as you need. Snoop around this group site. There is A LOT of information from people just like you, in just your situation. We all can identify with each other. Tips, suggestions, experience. It's all here. This is special group to be sure. Not everyone has what we have, and not everyone is blessed to go to the Mayo Clinic. They are the best in the world. Your care will be outstanding.
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1 ReactionThere is a hotel right next to the main clinic. I think it is called The Kahler. It connects to the clinic with a covered bridge over the street. Mayo will send you a packet with all the information you need. The packet includes maps that show where everything is located. As for a wheel chair, they not only provide free wheel chairs, they also provide someone to push you around to wherever you need to go inside the clinic. Also, there are continuous free shuttle buses that pick you up at your hotel/motel so it really doesn’t matter how far you are from the clinic. You may want your electric wheel chair for your convenience at your hotel. But check with your hotel about that. They may have some available. I don’t know about that. Best of luck to you. You are in good hands.
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1 ReactionThank you! I will be going their Nov. 1st to see Dr. Steve Ommen.
Thank you, so much! My appointment is from Nov 1st to the 3rd.
Excellent! Dr. Ommen and everyone at Mayo Rochester are fantastic people right down to the janitors. I am 81 years old and had my septal myectomy in Rochester last January after three cardiologist in the city I live in told me I was inoperable because of my age. Fortunately, an honest and humble thoracic surgeon here told me he didn’t have the equipment or enough experience and I should go to Mayo Rochester. He also offered to do my post surgery care. I took him up on that and he did an excellent job. I now feel like I am 60 years old again. I won’t kid you. The recovery was a little rough but nothing I couldn’t handle as long as I followed what the nurses and doctors told me to do. My turning point was cardio rehab. In two weeks from now, I go back to work teaching two online college courses. I’m so grateful and happy. I’m excited about life again. Best of luck to you. You have made the right choice in my opinion.
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Helpful -
Hug
2 ReactionsI hope all goes well. It's not like a fun vacation, but try and make the most of your time there. The hospital staff, the ancillary staff, pretty much anyone you come in contact with are very kind people. The weather may be chilly, so be prepared. The services offered to shuttle you between clinics and hospital is super easy to figure out. And there is always someone to help guide you around. Keep us posted on your journey. The Mayo makes it easy even if you get lost in the basement of the Gonda building. Someone will help you find your way out 🙂
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Helpful -
Hug
2 ReactionsI am now 8 weeks post op. Thanks to Mayo they setup all of the doctors appointments in my home state of Utah with the doctors they trusted. My Utah based Mayo Trained Cardiologist just had the local Thoracic Surgeon check out my stenotomy. My sternotomy is 80% healed. Be sure you take care of and follow advice of Mayo's Surgeons about caring for your sternototomy!!! The heart surgery is soft tissue and heals within 7 to 10 days. Then Sternotomy is in constant motion and I heard from my 40 year friend who is an ER MD who's sternotomy has not healed since receiving a Triple Bypass surgery 3 years ago, basically called a "Non-Union" which is not good.
We stayed at the Kahler Grand Hotel where we stayed. Their service was great! They provided 2 meals per day with a nights stay, Breakfast & Dinner. The Kahler is in the center of Rochester, MN. Close to all of the initial appointments and only one mile free shuttle or short walk to the surgical center. Good Luck! You are in the best hands and as a Retired 40 year Veterinarian, I wished they practiced human medicine & surgery every where in the USA like they do at the Mayo! Be sure to go to YouTube and Amazon to watch the documentaries on the Mayo Clinic as well as Drs. Ommen and Dr. Shaff talked about treatment of HCM. These videos sure helped lowering my anxiety!
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1 ReactionI’m 2 weeks post op and the only thing that’s bugging me is my back between my shoulders and getting my breathing back all the way
Is everyone on here Mayo patients? I notice you all are referring to your surgery at MAYO.
Im having a CARDIAC MRI tomorrow in Oahu as i live on Maui.
Oh ugh! That is a common plague for a lot of us! Not to frighten you, but mine lasted ten months or more and still bothers me from time to time. Don't push yourself, but don't be afraid to go a little further every day. Our bodies are amazing and even though the healing process is different for each of us...it's a miracle what time can do. My FP doctor (who was born at the Mayo!) recommended a yoga pose called "eagle arms," not right away, you're not far enough along. But in time, maybe it can help you too. So good to know you are coming along so well. Best wishes.