Patti posted a note for Lori that says:
Here's one for you.
I finally slept through the night and awoke to find we had been robbed. We live in a safe neighborhood where most don't lock their doors. However I usually remind my husband to lock the door but was tired and couldn't stay up for overtime hockey. Awoke rested at 6am to find all electronics and cash gone. Police have been here all day doing fingerprints etc. fortunately no one hurt and stuff can be replaced tho information can not. I shall remember my first 8 hours of sleep!!
Lori Way Patti, it would take more than a small note here to get into everything that happened to me, and I don't think that I should do that on an open forum such as ... Read more
Lori Way Patti, it would take more than a small note here to get into everything that happened to me, and I don't think that I should do that on an open forum such as this. If you want to know anything more, please send an email address and I would be happy to correspond.
On June 13, 2014...
Patti posted a note for Lori that says:
Hi Lori
I had mitral valve repair at CC on Feb 20. Who was your surgeon? Like you I can't say I feel better than pre surgery. I mentioned this to my cardiologist who bluntly explained 1) this is very major surgery 2) like others I was over sensitive to every ache pain etc I.e., numbness in right chest 3) it takes 6 months to one year to feel normal and 4) unlike those who can now breathe those of us who had few symptoms are less impressed. It was just what I needed to hear. As an aside yesterday for the first time since surgery I felt like my old self only better. I cried and didn't want the day to end. Today was not quite as good but I reminded myself it can and will happen.
Hang in there.
My surgeon was Marc Gillinov. I can't say anything good about him and my whole experience at Cleveland Clinic was pretty much a nightmare. I don't ... Read more
My surgeon was Marc Gillinov. I can't say anything good about him and my whole experience at Cleveland Clinic was pretty much a nightmare. I don't know why he and the CC are so highly rated. If you would like to correspond more about this, let me know.
I also have the numbness/soreness in my right chest that you've mentioned. (When my husband asked my cardiologist at the CC about some of the appliances that had been put into my chest, he told my husband to "Google it.") Reaching and stretching has helped for me, and I found a site online that has some good advice. Here is the link: http://rehabilitateyourheart.wordpress.com/2012/09/10/building-chest-and-back-muscles-after-open-heart-surgery/
On February 24, 2014...
Aida posted a note for Lori that says:
Hi Lori,
My husband Steve had Mitral Valve Replacement on 01/31/2013 in Los Angeles, CA. It was quite a year to be honest. He is doing well but still struggles with fatigue.
As his caregiver, I learned a lot and wish I could have done things differently or been more informed. This is why I launched a new blog at www.heartcarematters.com. Here you will see our story, etc.
I hope your recovery is going well and if you ever have any questions please do not hesitate to contact us.
Lori Way Thank you for your message. I'm not sure if I had responded to this earlier or not. I am almost one year out now and I still have fatigue. I just signed up ... Read more
Lori Way Thank you for your message. I'm not sure if I had responded to this earlier or not. I am almost one year out now and I still have fatigue. I just signed up for your newsletter, so thanks for sending the link. I will be in touch if I have any questions.
On February 14, 2014...
Kevin Woodard posted a note for Lori that says:
Lori,
I am 38 and just had my Mitral Valve Repaired Dec 16, 2013 at Greenville Heart Institute after following my MVP for years. I was asymptomatic but my regurgitation had become severe! I was told by #3 different valve surgeons the same thing get it repaired soon instead of waiting and risk having to get it replaced. Mine was repaired robotically and everything went well for me as I am about 9 weeks post-op. I would recommend to everyone that has severe MVR to try and get it repaired sooner rather than later. Don't wait for symptoms to get worse. Repair's are typically better than a replacement. If your brother has MVP keep an eye on it and if it starts showing signs of increased regurgitation then he needs to see a surgeon right away. The sooner you catch it the better your odds for a minimally invasive procedure like I had. Feel free to pick my brain and definitely use this community to help answer the questions you might have. Hope this helps?
I was also fairly asymptomatic, aside from being tired and having the occasional chest pain. What really prompted me to get the surgery was watching ... Read more
I was also fairly asymptomatic, aside from being tired and having the occasional chest pain. What really prompted me to get the surgery was watching my mother die of the same thing. She was afraid to have it done, then eventually became too weak to be a candidate for surgery. My brother has not reached the stage of regurgitation yet, but I know that we need to be vigilant because of our family history.
I would have liked to have had the robotic surgery, and that was what I had been promised, but the surgeon changed his mind once I was on the table. I was very disappointed with the care that I received at my facility, which is also rated at the top in the nation.
On February 12, 2014...
Lori.sobrero posted a note for Lori that says:
Hi Lori, about the nightly interruptions while in the hospital. I was in for 15 days because my warfarin levels were slow to reach therapeutic levels. The only time the nurses WEREN'T in my room was 12-4am. FOUR ours was all I could ever sleep which I thought was terrible. I had problems trying to sleep anyway because my mechanical was ticking like a time bomb. It probably took me 3 years before I stopped hearing it, so suffice it to say I am quite the insomniac. I sleep in spurts and usually awake between 1-3am. Anyway, I just wanted you to know that I only had 4 hours each day at the hospital where no one was in my room.
Lori Way Thanks for sharing your comments as well. You would think that with the advancements made in medicine that it would be common knowledge that the patient needs ... Read more
Lori Way Thanks for sharing your comments as well. You would think that with the advancements made in medicine that it would be common knowledge that the patient needs rest after surgery, but apparently that aspect of care is overlooked. My lack of sleep is just the tip of the iceberg of my complaints with the hospital that I chose, and they are tops in the nation. I would hate to see what the patients at second-rate hospitals are experiencing.
On February 12, 2014...
Lori Sobrero posted a note for Lori that says:
Hi Lori, I'm a Lori as well and had my mitral valve replaced in January 2010 because I have MVP severe mitral regurgitation. I was 51 at the time and I chose to have a mechanical valve because I didn't want to have to go through another OHS in 10-15 years. I'm doing very well. I have become a Womenheart champion and Support Network Coordinator and so I would suggest you go to Womenheart.org and see if there is someone in your area that might be having meetings. It's a great way to meet people who have had a similar procedure. You can also sign up for their online support community as well. MVP is very common. I hope you continue to do well. Take good care!
Lori Way Thanks for the tip about Womenheart.org, Lori. I will check it out.
On February 11, 2014...
Sherry Musgrove posted a note for Lori that says:
Lori
Thomas is doing extraordinarily well. He doesn't start cardiac rehab for several weeks yet, but he is making great strides on his own. Yesterday he completely weened himself off the nightly pain meds, so he is dealing with a little more pain than usual, but he says it is manageable.
We owe a lot of the credit to the U of M CVC They were absolutely fantastic. We are now adoring fans, with tee shirts and a hoodie to prove it! :-)
I just posted on Thomas' Journal an entry entitled "It Takes a Village" which briefly addresses the care we received at U of M. And I hope to post more details as the weeks progress.
Lori Way I was reading over your blog a little bit last night and I saw your post about having nightly interruptions. I encountered that as well, and I am still having ... Read more
Lori Way I was reading over your blog a little bit last night and I saw your post about having nightly interruptions. I encountered that as well, and I am still having insomnia. I am waking up at 4 a.m., which is when the nursing staff got me out of bed every night to weigh me. I have no idea why it was so imperative to weigh me at 4 a.m. as opposed to 6 a.m. or 7 a.m. There are studies that show that these interruptions are very detrimental to health, and yet it seems that those who undergo cardiac surgery are subjected to this on a regular basis.
On February 10, 2014...
Sherry Musgrove posted a note for Lori that says:
Lori
My husband, Thomas just had MVR on January 24 at University of Michigan. I have been Journaling for quite some time and am happy to share with you. (search for Tom Musgrove Unfortunately, we will probably not meet in the flesh as you say because we live in California.
Lori Way Thank you, Sherry. How is Thomas doing now? What was your experience like at U of M?
On February 10, 2014...
Debbie Cross posted a note for Lori that says:
Lori, are you doing well? I lost my father(65) in 2006 after Mitral valve surgery,and my grandfather a few years prior.Not sure when I will have mine repaired but I like to hear of success stories!
Nice to hear from you. There are so many things to consider when you are preparing for this sort of surgery. This site has a lot of great information, ... Read more
Nice to hear from you. There are so many things to consider when you are preparing for this sort of surgery. This site has a lot of great information, and I think that Adam's book is really excellent. Although my experience was slightly different from his, I found myself nodding in agreement many times when reading it and wishing that I had found it before my operation.
This Thursday will mark 8 weeks, post-op. The burst of energy that everyone told me would happen hasn't happened yet, but I can tell you that I was able to go 5 miles on the exercise bike tonight. My sternum is still sore, and I am not attempting any heavy lifting or push-ups at this point, but I feel much stronger than when I came home from the hospital.
If I can answer any questions for you, please let me know.
Uploading your photo!
I finally slept through the night and awoke to find we had been robbed. We live in a safe neighborhood where most don't lock their doors. However I usually remind my husband to lock the door but was tired and couldn't stay up for overtime hockey. Awoke rested at 6am to find all electronics and cash gone. Police have been here all day doing fingerprints etc. fortunately no one hurt and stuff can be replaced tho information can not. I shall remember my first 8 hours of sleep!!