Hi Gypsy, not all members on Mayo Clinic Connect are Mayo patients. However, since Mayo Clinic is renown for treating HCM, quite a few members have been treated there.
Hi Gypsy, not all members on Mayo Clinic Connect are Mayo patients. However, since Mayo Clinic is renown for treating HCM, quite a few members have been treated there.
Thank you for your reply. I wont know what the MRI results for for about a week or so. Im in HI and they’re on ‘island time’ lol
About surgery, Im glad to hear there are at least surgical options for help. When I first heard of my condition it sounded like there was nothing to prevent or ‘control’ the condition.
Regarding, HCM...I just lost 20 pounds (10%) of my body weight and have another 30 to go. I had an echo cardiogram on Friday in preparation for some kidney surgery. The velocity of my heart pressure was half of what it was at the time of my last echo in June. Grateful for prayers answered and the hope of continuing on the weight loss journey...We can do this!
Thank you for the information. I go in for Apical Myectomy March 12. Sounds like you’re recovering well! Wish you continued success with your recovery.
Thank you for the information. I go in for Apical Myectomy March 12. Sounds like you’re recovering well! Wish you continued success with your recovery.
I’m scheduled for a septal myectomy on February 9. I’m no stranger to surgeries, but this time I seem to be carrying a lot of tension in my body— not so much for the surgery itself as for what I’m sure will be challenges getting myself dressed, toileting, etc. My husband has been a great support and help, but how much will I be able to do on my own of the everyday self-care aspects of life. I’m thinking particularly of the limitations on arm movements—reaching behind to pull up pants, and tug down shirts in back…??? Can anyone clue me in on these questions?
I’m scheduled for a septal myectomy on February 9. I’m no stranger to surgeries, but this time I seem to be carrying a lot of tension in my body— not so much for the surgery itself as for what I’m sure will be challenges getting myself dressed, toileting, etc. My husband has been a great support and help, but how much will I be able to do on my own of the everyday self-care aspects of life. I’m thinking particularly of the limitations on arm movements—reaching behind to pull up pants, and tug down shirts in back…??? Can anyone clue me in on these questions?
Hello @pam753, and welcome to Mayo Connect.
I'm glad you found this support group and are looking for answers. I think I can answer some, if not most of your questions. I had a septal/papillary myectomy at the Mayo Clinic three years ago. The memories are still fresh in my mind!
First, as you already know, no two people are the same, so if I say it was easy breezy, for some it can be terrible. For me, it was not fun, but it certainly wasn't as terrible as I expected and built up in my mind. I was afraid. Naturally. But every day there was progress moving forward and each day got a little better.
Right after?...no fun. No fun at all.
By the time I was ready for discharge I was ready! I wanted a shower in the worst way and couldn't wait for non-hospital food. Even though my taster was off for several weeks.
You will most likely be advised to NOT use your arms for much more than lifting a coffee cup for sometime. Your sternum needs to heel, like any broken bone. This is super important to keep your sternum resting. Bad things happen if you don't listen!
I went to TJ Maxx and got some lounge/sport bras that I could step into and pull on. You cannot reach around to put them on. And you don't want anything like underwire touching your incision. You will be naturally protective of that!
It was summer, so I got linen pants with stretch waist bands to pull on. Anything you can pull up is better, as you are rather swollen after surgery for a couple of weeks. (Fluid from surgery/IV/Etc)
Slip on shoes is very helpful as well. You will not want to bend over to put shoes on.
Another helpful tip but not totally necessary, though others may disagree: a recliner. It's helpful afterwards. My guy bought me an electric one, and I did use it. But I could have done okay without one too. It's just really hard getting in or out of anything at first. Bed, car, chair, toilet, especially when you can't use your arms to pull yourself up.
You can, and are encouraged to shower every day. The Mayo wanted me to use a fresh washcloth on the sternum daily and use only liquid soap. I got Dr. Bronner's peppermint soap and a 10-pack of soft wash cloths.
Walking is super important, listening to your body is too. You'll need to be walking everyday, but don't over do it. I walked six miles everyday before surgery...so it was hard to keep me down. I was so grateful to be driven to the trail I walked and do a half a mile. Oh, yeah...you can't drive for a month. It's maddening!
I hope this helps...I've gone on quite a bit. If you have ANY more questions, PLEASE feel free to reach back. I'll be here and I will put you in my prayers for February 9.
I’m scheduled for a septal myectomy on February 9. I’m no stranger to surgeries, but this time I seem to be carrying a lot of tension in my body— not so much for the surgery itself as for what I’m sure will be challenges getting myself dressed, toileting, etc. My husband has been a great support and help, but how much will I be able to do on my own of the everyday self-care aspects of life. I’m thinking particularly of the limitations on arm movements—reaching behind to pull up pants, and tug down shirts in back…??? Can anyone clue me in on these questions?
I had my surgery Jan. 9th. Im actually back at Mayo Jacksonville for follow up with surgeon and to get staples out. My pain was really cincentrated in my neck but only took Tylenol. But everyone is different. I was in for 7 days. My hubby has been great with taking care of everything around the house and me. PT and occupational therapy will work with you in hospital on how to move, etc. They provided me with a grabber, walker, etc. Im getting stronger everyday. Sometimes I do forget myself but your body will tell you… dont do that again! And I dont! Im walking first time in years without being out of breath! Good luck to you! Sending positive vibes!!
Hello @pam753, and welcome to Mayo Connect.
I'm glad you found this support group and are looking for answers. I think I can answer some, if not most of your questions. I had a septal/papillary myectomy at the Mayo Clinic three years ago. The memories are still fresh in my mind!
First, as you already know, no two people are the same, so if I say it was easy breezy, for some it can be terrible. For me, it was not fun, but it certainly wasn't as terrible as I expected and built up in my mind. I was afraid. Naturally. But every day there was progress moving forward and each day got a little better.
Right after?...no fun. No fun at all.
By the time I was ready for discharge I was ready! I wanted a shower in the worst way and couldn't wait for non-hospital food. Even though my taster was off for several weeks.
You will most likely be advised to NOT use your arms for much more than lifting a coffee cup for sometime. Your sternum needs to heel, like any broken bone. This is super important to keep your sternum resting. Bad things happen if you don't listen!
I went to TJ Maxx and got some lounge/sport bras that I could step into and pull on. You cannot reach around to put them on. And you don't want anything like underwire touching your incision. You will be naturally protective of that!
It was summer, so I got linen pants with stretch waist bands to pull on. Anything you can pull up is better, as you are rather swollen after surgery for a couple of weeks. (Fluid from surgery/IV/Etc)
Slip on shoes is very helpful as well. You will not want to bend over to put shoes on.
Another helpful tip but not totally necessary, though others may disagree: a recliner. It's helpful afterwards. My guy bought me an electric one, and I did use it. But I could have done okay without one too. It's just really hard getting in or out of anything at first. Bed, car, chair, toilet, especially when you can't use your arms to pull yourself up.
You can, and are encouraged to shower every day. The Mayo wanted me to use a fresh washcloth on the sternum daily and use only liquid soap. I got Dr. Bronner's peppermint soap and a 10-pack of soft wash cloths.
Walking is super important, listening to your body is too. You'll need to be walking everyday, but don't over do it. I walked six miles everyday before surgery...so it was hard to keep me down. I was so grateful to be driven to the trail I walked and do a half a mile. Oh, yeah...you can't drive for a month. It's maddening!
I hope this helps...I've gone on quite a bit. If you have ANY more questions, PLEASE feel free to reach back. I'll be here and I will put you in my prayers for February 9.
Thanks, Debra, both your advice and prayers are much appreciated. I have a good recliner that accommodates my long legs, but its a manual so will probably need my hubby to help me lift the footrest portion. I also have a good wedge pillow so using that I’m hoping to be able to sleep in the bed fairly soon after getting home. I live in NW Iowa and even with the thaw we have had in recent days I dress in layers to stay cozy— camisole, mock turtle neck, and a cardigan, flannel shirt or fleece quarter zip. I have knit pull-on pants too, but if I can’t reach around at all to my backside, I don’t think I can dress myself; am I correct about that? 🤪
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Hi Gypsy, not all members on Mayo Clinic Connect are Mayo patients. However, since Mayo Clinic is renown for treating HCM, quite a few members have been treated there.
How did the MRI go? Will you be having surgery?
Thank you for your reply. I wont know what the MRI results for for about a week or so. Im in HI and they’re on ‘island time’ lol
About surgery, Im glad to hear there are at least surgical options for help. When I first heard of my condition it sounded like there was nothing to prevent or ‘control’ the condition.
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Like -
Helpful -
Hug
1 ReactionRegarding, HCM...I just lost 20 pounds (10%) of my body weight and have another 30 to go. I had an echo cardiogram on Friday in preparation for some kidney surgery. The velocity of my heart pressure was half of what it was at the time of my last echo in June. Grateful for prayers answered and the hope of continuing on the weight loss journey...We can do this!
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Like -
Helpful -
Hug
1 ReactionDid anyone else get sternum popping after surgery, 3 1/2 weeks and I can feel a pop
How did things go
How did it go?
I’m scheduled for a septal myectomy on February 9. I’m no stranger to surgeries, but this time I seem to be carrying a lot of tension in my body— not so much for the surgery itself as for what I’m sure will be challenges getting myself dressed, toileting, etc. My husband has been a great support and help, but how much will I be able to do on my own of the everyday self-care aspects of life. I’m thinking particularly of the limitations on arm movements—reaching behind to pull up pants, and tug down shirts in back…??? Can anyone clue me in on these questions?
Hello @pam753, and welcome to Mayo Connect.
I'm glad you found this support group and are looking for answers. I think I can answer some, if not most of your questions. I had a septal/papillary myectomy at the Mayo Clinic three years ago. The memories are still fresh in my mind!
First, as you already know, no two people are the same, so if I say it was easy breezy, for some it can be terrible. For me, it was not fun, but it certainly wasn't as terrible as I expected and built up in my mind. I was afraid. Naturally. But every day there was progress moving forward and each day got a little better.
Right after?...no fun. No fun at all.
By the time I was ready for discharge I was ready! I wanted a shower in the worst way and couldn't wait for non-hospital food. Even though my taster was off for several weeks.
You will most likely be advised to NOT use your arms for much more than lifting a coffee cup for sometime. Your sternum needs to heel, like any broken bone. This is super important to keep your sternum resting. Bad things happen if you don't listen!
I went to TJ Maxx and got some lounge/sport bras that I could step into and pull on. You cannot reach around to put them on. And you don't want anything like underwire touching your incision. You will be naturally protective of that!
It was summer, so I got linen pants with stretch waist bands to pull on. Anything you can pull up is better, as you are rather swollen after surgery for a couple of weeks. (Fluid from surgery/IV/Etc)
Slip on shoes is very helpful as well. You will not want to bend over to put shoes on.
Another helpful tip but not totally necessary, though others may disagree: a recliner. It's helpful afterwards. My guy bought me an electric one, and I did use it. But I could have done okay without one too. It's just really hard getting in or out of anything at first. Bed, car, chair, toilet, especially when you can't use your arms to pull yourself up.
You can, and are encouraged to shower every day. The Mayo wanted me to use a fresh washcloth on the sternum daily and use only liquid soap. I got Dr. Bronner's peppermint soap and a 10-pack of soft wash cloths.
Walking is super important, listening to your body is too. You'll need to be walking everyday, but don't over do it. I walked six miles everyday before surgery...so it was hard to keep me down. I was so grateful to be driven to the trail I walked and do a half a mile. Oh, yeah...you can't drive for a month. It's maddening!
I hope this helps...I've gone on quite a bit. If you have ANY more questions, PLEASE feel free to reach back. I'll be here and I will put you in my prayers for February 9.
-
Like -
Helpful -
Hug
2 ReactionsI had my surgery Jan. 9th. Im actually back at Mayo Jacksonville for follow up with surgeon and to get staples out. My pain was really cincentrated in my neck but only took Tylenol. But everyone is different. I was in for 7 days. My hubby has been great with taking care of everything around the house and me. PT and occupational therapy will work with you in hospital on how to move, etc. They provided me with a grabber, walker, etc. Im getting stronger everyday. Sometimes I do forget myself but your body will tell you… dont do that again! And I dont! Im walking first time in years without being out of breath! Good luck to you! Sending positive vibes!!
-
Like -
Helpful -
Hug
3 ReactionsThanks, Debra, both your advice and prayers are much appreciated. I have a good recliner that accommodates my long legs, but its a manual so will probably need my hubby to help me lift the footrest portion. I also have a good wedge pillow so using that I’m hoping to be able to sleep in the bed fairly soon after getting home. I live in NW Iowa and even with the thaw we have had in recent days I dress in layers to stay cozy— camisole, mock turtle neck, and a cardigan, flannel shirt or fleece quarter zip. I have knit pull-on pants too, but if I can’t reach around at all to my backside, I don’t think I can dress myself; am I correct about that? 🤪
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Helpful -
Hug
1 Reaction