Else Reed - Heart Valve Journal

My Journal

Else Reedposted an update

802 days ago

Wondering: is there a site like this for patients needing bypass surgery? Asking for a friend (really) I know…we are so blessed and fortunate to have Adam! ...Read more

Wondering: is there a site like this for patients needing bypass surgery? Asking for a friend (really) I know…we are so blessed and fortunate to have Adam!

Daneen Douglas "You might want to try Mended Hearts. I am a member of that support site as well. There are communi ... Read more

Daneen Douglas "You might want to try Mended Hearts. I am a member of that support site as well. There are communities for many types of heart conditions. I hope that helps!"

Else Reed Thanks, Daneen!

Else Reedposted an update

1411 days ago

Ginny Turner, Holly Wale, Deena Z and 2 others reacted to this

It has been a year since my robotic mitral valve repair surgery by dr Gillinov. Ran a 5 K in honor of this anniversary. Received great test results today. (Stress, ...Read more

It has been a year since my robotic mitral valve repair surgery by dr Gillinov. Ran a 5 K in honor of this anniversary. Received great test results today. (Stress, echo, blood). So thankful, so blessed.

Ginny Turner Congratulations, Else! What a wonderful update. As another Dr. Gillinov mitral valve patient from 3 m ... Read more

Ginny Turner Congratulations, Else! What a wonderful update. As another Dr. Gillinov mitral valve patient from 3 months ago, it's so encouraging to hear of your great success. I, too, feel so thankful and blessed.

Kristine Schroeder I’m having robotic mitral valve surgery in July....not Cleveland Clinic, but in Tampa. Really love ... Read more

Kristine Schroeder I’m having robotic mitral valve surgery in July....not Cleveland Clinic, but in Tampa. Really love the surgeon. Congratulations. I love being encouraged by these updates!

Rose Madura Wow! What a great report! Thanks for letting us know and keep up the good work!

Else Reed Thanks, Rose!!

Phyllis Petersen Congratulations! I'm glad to see you are still doing so well.

Else Reed Thanks, Phyllis!

Else Reedposted a journal

1495 days ago

Holly Wale, Rose Madura reacted to this

Doing a 5 K with jogging/walking in 43 minutes. My personal record! I was born with a leaky heart valve and was never able to do any sustained jogging or endurance ...Read more

Doing a 5 K with jogging/walking in 43 minutes. My personal record! I was born with a leaky heart valve and was never able to do any sustained jogging or endurance exercise until my valve repair. Working toward running a 5K. The progress is slow, but steady! So blessed, so thankful for the Cleveland Clinic and dr Gillinov’s robotic master repair on my mitral valve! It will be a year in May. I hope to run a 5K before that! I am so excited…can you tell?!

Phyllis Petersen Excellent! You go girl!

Else Reedposted an update

1673 days ago

Numbness around a scar. How long will it last? I had robotic mitral valve repair may 3rd ‘21. I have lots of little scars on my right side. The area of numbness ...Read more

Numbness around a scar. How long will it last? I had robotic mitral valve repair may 3rd ‘21. I have lots of little scars on my right side. The area of numbness is in between all the scars and around it. Anything you can do to help to get the feeling back sooner? And another scar- related question: any creams help with fading? Thanks!!

Susan Lynn Else - I wish I had better news for you, but I had a right side, minimally-invasive mitral valve repa ... Read more

Susan Lynn Else - I wish I had better news for you, but I had a right side, minimally-invasive mitral valve repair and the numbness, and pins and needles, can last for more than a year. As the nerves regenerate, you'll get all kinds of sensations - I don't know of a way to shorter the process, either. I stopped noticing it after awhile - it was a small price to pay for the decrease in pain after surgery. Hang in there! Better days are ahead.

Susan Lynn Else - I wish I had better news for you, but I had a right side, minimally-invasive mitral valve repa ... Read more

Else Reed Thanks for the info, Susan. I don’t have pins and needles yet. Good to know that might be next. De ... Read more

Else Reed Thanks for the info, Susan. I don’t have pins and needles yet. Good to know that might be next. Definitely a small price to pay :)

Thomas Moorer I joined this group to learn the same thing. My surger was May 7, 2021 and I still have profound numb ... Read more

Thomas Moorer I joined this group to learn the same thing. My surger was May 7, 2021 and I still have profound numbness under my ar. I sometimes feel like I am pulling tape off my skin, like straining a stitch. It's more of an annoyance. So, you're not alone!

Else Reedposted an update

1691 days ago

Adam Pick, Phyllis Petersen reacted to this

Is robotic mitral valve surgery “open heart surgery”? The term is confusing, because it is “open heart”, but not “open chest”.....

Phyllis Petersen I've wondered about that too!

Richard Munson Yes, they open your heart. How they get to your heart is the difference. Conventional split down the ... Read more

Richard Munson Yes, they open your heart. How they get to your heart is the difference. Conventional split down the middle, minimal invasive right side thru ribs, way smaller incision , robotic even less incision but thru ribs also and surgeon sits at a computer instead of by you. My laymans explanation i think that is correct.

Marie Myers Richard is right. It is all open heart surgery, just through different incisions.

Joseph Heinzmann When I was talking with my cardiologist about rehab and progress he said, "You just had open heart su ... Read more

Joseph Heinzmann When I was talking with my cardiologist about rehab and progress he said, "You just had open heart surgery ..." So I guess it is?

Richard Munson My surgeon told me that once they get inside, the actual heart end of it is pretty much the same whet ... Read more

Richard Munson My surgeon told me that once they get inside, the actual heart end of it is pretty much the same whether sternum or ribs.

Adam Pick Else, Given your fantastic question, I think you might enjoy this new video I just filmed with Dr. Ch ... Read more

Adam Pick Else, Given your fantastic question, I think you might enjoy this new video I just filmed with Dr. Chikwe all about robotic mitral valve repair surgery. In the video, Dr. Chikwe specifically answers your question. https://www.youtube.com/watch?v=sNBglVf8oio

Surgeon Insights: Robotic Mitral Valve Repair Surgery with Dr. Joanna Chikwe

https://www.youtube.com/watch?v=sNBglVf8oio

https://www.Heart-Valve-Surgery.com - Patients with mitral regurgitation, also known as a leaking heart valve, have many options for treatment. As a result,...

Richard Munson What a great interview. Thanks adam. Now if they could find a way around the heart, lung machine, and ... Read more

Richard Munson What a great interview. Thanks adam. Now if they could find a way around the heart, lung machine, and no doubt they will, it will be even less pain free. Every pre op mitral valve patient should see this.

Joseph Heinzmann Outstanding interview and what an engaging surgeon!

Phyllis Petersen Excellent interview. I wanted robotic right from the start and was thrilled to be able to travel to C ... Read more

Phyllis Petersen Excellent interview. I wanted robotic right from the start and was thrilled to be able to travel to Cleveland Clinic for my surgery. After, I was surprised to hear reasons from others for not doing it. This video really lays out the facts. I can add a couple from a patients point of view: I was driving short distances one month after surgery. My rehab could be more intense, because I didn't have to worry about the sternum issues. I was, however, never able to show my smiling scar, and almost 5 years from surgery, it's almost invisible.

Else Reed Thanks for answering my question with a great interview, Adam!

Else Reedposted an update

1747 days ago

Lynn Loudermilk, Shannon Gray, Phyllis Petersen and 2 others reacted to this

Can’t wait for my echo this Friday!! I had robotic mitral valve repair a month ago, and when they did an echo in the hospital, I wasn’t really with it. ...Read more

Can’t wait for my echo this Friday!! I had robotic mitral valve repair a month ago, and when they did an echo in the hospital, I wasn’t really with it. After looking at a leaky valve for 20 years, I want to see my new and improved ❤️ Hoping to get cleared for cardiac rehab also.

Ellen Cooper Else I hope the echo goes well and thanks for your story. I am having same surgery with Marc Gillino ... Read more

Ellen Cooper Else I hope the echo goes well and thanks for your story. I am having same surgery with Marc Gillinov 2 weeks from today. Looks like 2.5 weeks post-op you were still pretty tired. How are you feeling now? Let me know what I can expect. And so glad youre doing well.

Else Reed Thanks. Ellen! I can’t believe how excited I am for an echo lol. You asked about being tired. I am ... Read more

Else Reed Thanks. Ellen! I can’t believe how excited I am for an echo lol. You asked about being tired. I am now a month post op. I am doing great, but have to listen to my body. I was a symptomatic, so I am trying to be patient. If you would like, you can email me with questions. Ereed2@ Rochester.rr.com

Lynn Loudermilk I have an echo in July with my cadriologist. If all goes well I wont' have to see him for a year!

Cameron Peek I had an echo on my last day in hospital and cried alot. It was so amazing to see my beautiful new re ... Read more

Cameron Peek I had an echo on my last day in hospital and cried alot. It was so amazing to see my beautiful new repaired valve.

Lynn Loudermilk I haven't had an echo since before surgery

Deena Z Lynn, they check out your heart via ultra sound after surgery. You were probably out, as I was. I d ... Read more

Deena Z Lynn, they check out your heart via ultra sound after surgery. You were probably out, as I was. I didn't have an echo like Cameron on my last day and she and I went to the same hospital for the same two valves for repair. So, no one size fits all.

Else Reed My echo went great. Of course they can’t say much until I see my cardiologist in 2 weeks, but I did ... Read more

Else Reed My echo went great. Of course they can’t say much until I see my cardiologist in 2 weeks, but I didn’t see any back flow. 💕

Amy K Great news, Else!

Else Reedposted a journal

1751 days ago

Dylan Kempers, Cameron Peek, Phyllis Petersen reacted to this

4 weeks post op. Slept great last night! I have no trouble falling asleep, but constantly wake up around 2 or 3 AM. Then, can’t fall asleep again. The trick? ...Read more

4 weeks post op. Slept great last night! I have no trouble falling asleep, but constantly wake up around 2 or 3 AM. Then, can’t fall asleep again. The trick? Take Melatonin 3 or 6 mg when you wake up at 2 or 3, and not when you go to bed. A game changer for me!!

Cameron Peek Wow that is a good idea. Only one week but already know sleep is going to be a challenge. I have had ... Read more

Cameron Peek Wow that is a good idea. Only one week but already know sleep is going to be a challenge. I have had insomnia for many years prior to surgery. My husband says this recovery sleep is like a new born feeding schedule.

Else Reed Your husband is right. Getting sleep after such a long surgery is hard. Guess it is a common side-eff ... Read more

Else Reed Your husband is right. Getting sleep after such a long surgery is hard. Guess it is a common side-effect.

Else Reedposted an update

1758 days ago

I had robotic mitral valve repair 2 1/2 weeks ago. I am still feeling very tired and sleep only about 3 hours. Is it normal to be so sleep deprived? Any tips? ...Read more

I had robotic mitral valve repair 2 1/2 weeks ago. I am still feeling very tired and sleep only about 3 hours. Is it normal to be so sleep deprived? Any tips?

Dylan Kempers Else, I had MV repair a month ago. Both the tiredness and sleep deprivation might be related to the m ... Read more

Dylan Kempers Else, I had MV repair a month ago. Both the tiredness and sleep deprivation might be related to the medicines you are taking. Have you checked the side effects? Gabapentin made me tired. When I stopped taking it, I regained my energy. For insomnia, try a meditation app, such as Calm or Headspace. They come with meditations to sleep.

Else Reed Thanks, Dylan. I only take Tylenol before bed. I’ll check out the meditation apps you mention tonig ... Read more

Else Reed Thanks, Dylan. I only take Tylenol before bed. I’ll check out the meditation apps you mention tonight. I have to do something, because I am pooped.

Phyllis Petersen I used the guided meditation I downloaded from CC's website before and after. I still use them occasi ... Read more

Phyllis Petersen I used the guided meditation I downloaded from CC's website before and after. I still use them occasionally when I can't sleep.

Else Reedposted a journal

1759 days ago

Rose Madura, Shannon Gray, Amy K and 2 others reacted to this

I was born with mitral regurgitation. However, in the early days, it was recognized as an “extra healthy heart, pumping hard.” So, that’s how I lived ...Read more

I was born with mitral regurgitation. However, in the early days, it was recognized as an “extra healthy heart, pumping hard.” So, that’s how I lived my life, until 2020. My doctor ordered an echo, and that was it. No “extra healthy heart” but severe mitral regurgitation. No symptoms, but was never able to do endurance sports. After raising 3 kids, figured it was finally time for me to get this surgery off my list. May 3, 2021. Cleveland clinic, dr Gillinov. I am blessed. What amazing doctors, nurses and staff. I am so grateful to all off them. Of course dr Gillinov, my Croatian anesthesiologist (he programmed great dreams during surgery!) and many nurses. So far, My body felt better before surgery, but my heart is running noticeably smoother. I get my heart rate up, and my heart is not jumping out of my chest. Totally amazing feeling!! ❤️

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