I'm sitting not far from "The Redcoats" in the prerequisite discharge wheel chair. I like to people watch. Today though I'm antsy, waiting to get our car to ...Read more
I'm sitting not far from "The Redcoats" in the prerequisite discharge wheel chair. I like to people watch. Today though I'm antsy, waiting to get our car to relax at our hotel - one more step toward home, seeing my child, and my pets! I miss everyone so much!
As for the valve REPAIR (Yay!), Dr. Najm did an excellent job (at least I have faith that he did. I was sound asleep!) š
It will be interesting to see how I feel over the next year. Heck, the next day!
A word to those pre-op that are fearful; I heard more anything Jesus said, "Do not be afraid". Try not to! If you have a good surgeon, you'll be fine!
Melissa Houser Lori - I'm surprised I didn't run into you there today, as I was at Cleveland Clinic from 11:30 am un ... Read more
Melissa Houser Lori - I'm surprised I didn't run into you there today, as I was at Cleveland Clinic from 11:30 am until almost 5 pm, most of it at the cardiology office. I was running all over the place there! Yes, I had to get help from "The Redcoats" several times today. I always get lost at Cleveland Clinic and on my way to and from there. Thank God for GPS, as I never would have found my way today. Glad to hear Dr. Najm was able to repair your tricuspid valve and that you are on your way home, 6 days later. I will be there with you in the post-op club 1 week from today. Enjoy your time at home. Prayers for quick healing!
All is well. For now! I have great support, awesome family and friends. And this amazing site. It didn't hurt as much as I thought! Hope this gives pre-op ppl ...Read more
All is well. For now! I have great support, awesome family and friends. And this amazing site. It didn't hurt as much as I thought! Hope this gives pre-op ppl some relief and post-op ppl thanks for all your thoughts and prayers ā¤
Phyllis Petersen Yay! I'm glad to see you on the other side and on the road to recovery. I'm also glad that the pain w ... Read more
Phyllis Petersen Yay! I'm glad to see you on the other side and on the road to recovery. I'm also glad that the pain wasn't too bad.
Well... I was sitting in the pre-op area, excited and scared, FINALLY having my tricuspid valve repaired! After my very FIRST surgery date of June 15, 2016 ...Read more
Well... I was sitting in the pre-op area, excited and scared, FINALLY having my tricuspid valve repaired! After my very FIRST surgery date of June 15, 2016 was put off, I was ready to get this over with! (After all, I had gotten my 'Brazilian' shave right there in the waiting bay! I didn't have to go to some unknown person at the mall, judging my body. I had some unfamiliar nurse who could care less what my body looked like do it!)
Nonetheless, I spied my extraordinary and affable surgeon from afar speaking on the phone. We made eye contact and we waved at each other, but I didn't have a good feeling. He continued to talk on the phone what seemed like forever before he gathered my family (my super sister, brother-in-lawā, and my rock, my wonderful husband). This didn't look good. He explained I had high aPPT levels (whaa?). I have Lupas anticoagulant (still: whaa?) In a nutshell, my blood has a high factor of clotting. They asked me about my surgeries - more than I can count on both hands - and no, never had any clotting problems. However, since the level was high, they had to call off the surgery (for a 2nd time! š¤¤) I saw some wonderful hemotalogical doctors (who I will plug in their names after I find their cards in my luggage!) One was a "fellow" -
even though she was a cute, pregnant lady (tryin' to keep it light here, folks!)
I am home now. In bed. I just received a call from a sweet, smart doctor who introduced herself as Christy (will plug in last name...) and she said I'm cleared for surgery. We have to make the 4 to 5 hour trip (again) on May 9th, surgery on May 10th!!! They are just taking extra procedures on how they take care of me to prevent blood clots.
I'm SO blessed that these wonderful doctors and nurses and surgeons at the Cleveland Clinic have found this issue and are taking procedures to keep me safe.
So, is 3rd time a charm?! May 10th, here we come!
Phyllis Petersen I hope you're right and 3rd times the charm. There's enough stress with having heart surgery without ... Read more
Phyllis Petersen I hope you're right and 3rd times the charm. There's enough stress with having heart surgery without them finding new things for you to stress over. All the best!
Well after 3 years and 4 trips to Cleveland Clinic, I have a surgery date. On May 4th, 2017 Dr Hani Najm will perform heart-valve surgery to repair or replace ...Read more
Well after 3 years and 4 trips to Cleveland Clinic, I have a surgery date. On May 4th, 2017 Dr Hani Najm will perform heart-valve surgery to repair or replace my regurgitating tri-cuspid valve. I've lost about 60 pounds (100+ pounds if you want to start from 2013). I feel better than I have in a long time. I hope this makes things better!! I have questions that maybe some of you can answer.
1- I've heard a little tighter bra (gals) with a zipper in the front helps heal the wound better and/or lessens the pain. Or possibly a heart halter. Last time they said heart halters were only used for patients operated on with more of a thoracic surgery.
2 - Also, my husband will be the only one waiting on me. I worry about him alone worrying about me. Any advice for the lonely spouse?
3 - I have chronic pain & I have been on painkillers for decades. I'm afraid they will not be able to manage my pain. This is a big concern. 11 years ago I woke up from a total knee replacement with HORRIFIC pain that could not be managed! Yet my last two surgeries (appendix & gall bladder) each time I was sent home. My pulse ox dropped to 60 and had to be rushed to the hospital. I need the right pain meds that will help ease my pain, but not kill me!
4 - I have osteoarthritis in both knees that inhibits my walking. Any advice on cardiac rehab?
5 - All my exercises since 2014 have been in the pool, 4 days a week. Anyone know how long it will take to get back in the water?
6 - It's about a 5 hour drive, any tips on the on the drive back post op?
I'm sure I knew SOME of these answers at my last OHS date that ended up not having. But I'm a little scared as this date was set so quick, my mind is a blur. Any help would be appreciated! ā”
I hope you all who've recently had surgeries are doing well. Those waiting for your date, I pray for a successful surgery and quick recovery!
Getting a little nervous,
Lori ā”
Vanessa Corwin Lori, I can answer the bra question. You'll need a front closing bra with no wires, like a sports bra ... Read more
Vanessa Corwin Lori, I can answer the bra question. You'll need a front closing bra with no wires, like a sports bra. They gave me a "surgical" bra at the hospital, maybe they will give you one, but it is kind of like a sports bra.
Catie B Sorry things are complicated, Lori. I hope folks will chime in with some answers for you. And I hope ... Read more
Catie B Sorry things are complicated, Lori. I hope folks will chime in with some answers for you. And I hope there will be a good way to control your pain.
Re: the pool: My instructions were no tub bath or immersing in water till the scab was completely gone and that was many weeks, in my case. I want to say, around 8.
Melissa Houser You may want to talk to anesthesia about pain management, as a lot of them also deal with chronic pai ... Read more
Melissa Houser You may want to talk to anesthesia about pain management, as a lot of them also deal with chronic pain management. I know Dr. Najm is highly experienced, so I expect the surgery itself will likely go as planned. However, the postoperative course in the hospital will likely be longer. Especially with you living so far away, I wouldn't expect to leave until you have some level of pain control. Fortunately, you will be at the Cleveland Clinic, so they have a highly experienced heart surgery team there. Will pray you have a great outcome from your surgery!
Tyline Scholle I was given a surgical bra while in the hospital that made a difference in the pain. The company is e ... Read more
Tyline Scholle I was given a surgical bra while in the hospital that made a difference in the pain. The company is elms surgical lp and their number is 1-800-635-7437. I continue to use the bra and ordered more. The bra help hold everything in place and lessens the discomfort.
Barbara Laurie Hi Lori... so, looks like you're ready to take the plunge. ! My surgeon wrapped me, almost like a wid ... Read more
Barbara Laurie Hi Lori... so, looks like you're ready to take the plunge. ! My surgeon wrapped me, almost like a wide, Velcro belt around my ample chest. BUT he also did sew up my boobies close to my incision with a small tubing in the other direction to keep the weight off there so it wouldn't split open. Next..BRA?? Even after 10 weeks a bra felt utterly terrible. To me. Now I wear one, but find I love getting it off. So, keep in mind it's not a necessity š
Pain. Going in I've had a chronic pain issue since 1994. Anesthesia dept, pre op will talk to you about all of it. Tell them what works best over the years, what lasts the longest. They will work with that. They will ask YOU what has worked, what you're taking now, and go from there. That has worked well for me. Even when I thought it seemed dumb they asked me, but everyone's different and they need a jumping off point.
Cardiac rehab should accommodate your knee trouble. I'm not at all able to walk on my feet with a great deal of pain, you may need to bend your knee, say on a recumbent machine..if all of that is not going to work for you, you may have to trust your water exercise after you heal up for "cardiac rehab". If your bp and hr is all,good, why not? I walked for exercise today and miss very much that "Nu step" recumbent machine. My feet feel like to huge slabsš
If you do get to be driven home in your car, prep the car for a back seat ride home, sideways, feet up, tons of pillows. Like a side ways ambulance ride, you'll have to be ambulatory for them to release you, so you can take potty breaks. Side note: I was NOT ambulatory so I was transfered to my next hospital via ambulance, 5 hour trip, with a diuretic in me... I had it the whole way, since my only option was the horrible diaper they wrestled me in, it was so demoralizingš I got to the LTAC and begged for a bed panšI was fine, and learned to walk asap!!
Best Regards Lori.. God Bless and I pray all goes well for you hon. ššæš
Xoxoxo
Lisa Ferguson Hi Lori! I had my OHS one year ago on May 3rd so I am looking forward to celebrating and I know your ... Read more
Lisa Ferguson Hi Lori! I had my OHS one year ago on May 3rd so I am looking forward to celebrating and I know your surgery will go well! I'd love to give my two cents on all your questions!
Bra - I bought one on Amazon before my surgery that hooked up in front. It did make me more comfortable but since it's hard to lift arms after surgery, the primary criteria when buying one was how easy it was to get on and off.
Lonely Spouse - I think he will be quite busy in the first few weeks. At least mine was, even with my mom helping! There are nurse visits, medication to organize, prepping meals, helping with the bathroom and showers...the list is long! And with only one person managing the house, he might not have time to be lonely!
Pain - Of course everyone is different, and you have quite a history to reckon with, but I know my experience is similar to others on this forum who say the pain is not significant for long. The biggest pain for me was my back from ribs and tendons being stretched the wrong way during surgery. The sternum was not painful, but more itchy and sore. You will find out quickly that many muscles are connected to your chest and neck - I learned in a hurry what movements I could not do!
Drive - The limited movement would be my main concern about a long drive home. You won't be able to make many position adjustments yourself or get up from a reclining position on your own so you'll want to practice how to be comfortable before you take that drive and how your husband can help you in and out of the car.
Rehab - I did not start until my scar was ready for water so I would think you could get back in the pool for rehab after a couple of months. The goal of rehab is really to make you feel less fragile doing exercise and to monitor that the increase in your heart rate and blood pressure is safe with exercise. You will want that reassurance. I did not have symptoms before my surgery but I sure felt nervous about my heart after surgery! I needed the rehab to heal mentally more than physically if that makes sense.
I wish you all the best and will be thinking of you on the 4th! That's my birthday too :)
Lori Phillips Oh my goodness! So many great suggestions from sweet people. I'm at Cleveland Clinic. In hotel. Had c ... Read more
Lori Phillips Oh my goodness! So many great suggestions from sweet people. I'm at Cleveland Clinic. In hotel. Had cardiac cath today. Tomorrow tt anesthesiologist & Dr. 4th is surgery day. 𤤠Thinking of all of you post and pre! Thanks again for the great tips and concern. ā¤
Thoughts and prayers go out to all of you awaiting surgery and all of those healing. My open heart surgery for tricuspid valve regurgitation has been postponed ...Read more
Thoughts and prayers go out to all of you awaiting surgery and all of those healing. My open heart surgery for tricuspid valve regurgitation has been postponed twice, travelling to the Cleveland Clinic every 3-6 months to recheck my heart. My hometown surgeons wanted to cut right away (in 2015), but I saught a third opinion in surgeon Dr. Najm at the Cleveland Clinic. My next appointment is February 13, 2017. I hope to have clarification as my knee needs replaced and no surgeon will touch me without strict clearance. I've been doing my best to lose weight, exercise, and eat right. Since my last visit in September of 2016, I've lost 53 pounds! I hope that helps with OHS. I know it will help with the knee. ~ Be well everyone! My thoughts & prayers go out for all the newcomers as well as the seasoned site members. I pray all is going well for you. And also, thanks to Adam Pick who set this much needed site up! ā”ā”ā”
Barbara Laurie After my surgery I had to get my fingers done (see my journal) and it was under sedation, NOT anesthe ... Read more
Barbara Laurie After my surgery I had to get my fingers done (see my journal) and it was under sedation, NOT anesthesia being intubated. There was still a risk, but it had to be done. Hopefully they all will be able to work with you to do your knee the safest way possible. Bless you!ā¤š¦ā¤
Everyone.... thanks so much for the encouragement. I've tried to write to people, but it won't post. Has anyone had that problem. They ask you if your a robot ...Read more
Everyone.... thanks so much for the encouragement. I've tried to write to people, but it won't post. Has anyone had that problem. They ask you if your a robot you said no and hit post. And it doesn't post. Grrrr... I wanted to talk to each one of you. Let me know if any of you have had the same problem. Meanwhile, God bless you all... I pray to ease your anxiety if your date is coming near, I pray for successful outcomes for those in surgery, and for those post-surgery, I pray for an ease of your pain and a successful recovery. ā”
Emily Rowley I hear you Sister š I too come across the same fustrating problem, I find on full view/computer mo ... Read more
Emily Rowley I hear you Sister š I too come across the same fustrating problem, I find on full view/computer mode helps. I hope all is going well for you hun xx
Well, my 3rd opinion, the Cleveland Clinic, DID NOT want to surgically repair my valve, unlike Christ Hospital and UC Health, both in Cincinnati. I'm trusting ...Read more
Well, my 3rd opinion, the Cleveland Clinic, DID NOT want to surgically repair my valve, unlike Christ Hospital and UC Health, both in Cincinnati. I'm trusting them because 30 yrs running, they're the best heart hospital, also I really like the surgeon, Dr. Hani Najm. And lastly, who WANTS to be cracked open?! They think I have Ebstein's Anomaly, a congenital defect. They want to "watch it". My first revisit is almost here. September 12th. It's a 4-5 hour car ride. I may be up there having had surgery, or they may send me right back home. I don't know if you can tell from my latest picture, but I've lost weight. I am trying SO HARD but it comes of SO SLOW! I've upped my aqua exercises and classes to 4-5 days a week. We're also eating no packaged or processed food (except for the UC Health weight loss center's protein shake every other day). It's difficult and expensive, but I've lost 20 lbs!
I feel really ashamed because I haven't kept up with the patients here on the journal. I hope and pray you are all doing well... healing for those who've hado surgery... peace of mind for those 'in line' for surgery. I certainly know it can be an anxious, emotional rollercoaster ride. God Bless you all!
Clare Auten Congrats on the 20 pounds! That is fabulous. I am hopeful that your follow up in September will go w ... Read more
Clare Auten Congrats on the 20 pounds! That is fabulous. I am hopeful that your follow up in September will go well.
Bridget Sawmiller Congratulations on the 20 pound loss!! I lost 35 going into my surgery on August 4th and I am so grat ... Read more
Bridget Sawmiller Congratulations on the 20 pound loss!! I lost 35 going into my surgery on August 4th and I am so grateful that I had the foresight to make sure that was a priority. I was in great shape going into surgery which I think is a really good reason why I am bouncing back so well. Keep up the great work, the weight loss can only help! Continued prayers for you!
Ed Miskovic Thanks for sharing. You are wise to prepare yourself by changing your eating habits before surgery. P ... Read more
Ed Miskovic Thanks for sharing. You are wise to prepare yourself by changing your eating habits before surgery. Probably, this is just a reminder that progress goals sometimes work better than outcome goals. Eating right not weight loss is a reachable goal. Weight loss seems to be an outcome that will be the result of proper eating. Good job!
David C One of the things I LOVE about CC was that before surgery you meet with a Cardiologist one more time ... Read more
David C One of the things I LOVE about CC was that before surgery you meet with a Cardiologist one more time to make sure that you do or do not need surgery, and they make no bones about sending someone home. From what I understand the surgeons appreciate it as well. They don't want to just operate to operate. I think the check and balance is reassuring. Best of luck with this wait and observe period, and getting healthy. Before I knew I had a heart problem, I had spent the previous year changing my diet and working out. I'd lost over 40lbs. While I was annoyed to be "healthy" only to have to have heart surgery, I am positive that being in good shape helped me both through the surgery and with recovery.
I just heard an audio sermon of a young, 24 year old, preaching his second sermon.
"I do not identify myself by my diseases or disabilities. In Christ I am ...Read more
I just heard an audio sermon of a young, 24 year old, preaching his second sermon.
"I do not identify myself by my diseases or disabilities. In Christ I am identified!"
Emily Rowley Beautiful saying and words to live by šš¼
Barbara Laurie Lori, surely best thing I've heard today, thanks for sharing! I also wanted to offer you my understan ... Read more
Barbara Laurie Lori, surely best thing I've heard today, thanks for sharing! I also wanted to offer you my understanding of EA. I've lived with it my whole life and I have really felt for you and your story. So similar to my own. I'm here if you need anything.. God a Bless, ā¤ļøšā¤ļø
Lori Phillips Emily, thx4 all your advice. And Barbara, thank you so much the EA familiarity and condolences. We we ... Read more
Lori Phillips Emily, thx4 all your advice. And Barbara, thank you so much the EA familiarity and condolences. We were stuck from the get-go w/that sucker, huh! They just found it by accident at age 48 for me.
Well, I'm home. Actually got back last week. But I've been a little shell-shocked with the adjustment. I'm SO glad I don't need surgery - at least not now. ...Read more
Well, I'm home. Actually got back last week. But I've been a little shell-shocked with the adjustment. I'm SO glad I don't need surgery - at least not now. I'll go back to Cleveland in 3 months and see what my heart looks like then. For now, I start back my 'gym' membership. I put it on hold till October preparation for the surgery, but they're letting me come back 1st of July. I try to make the 3 days a week aqua arthritis class. My plan is to continue that and try HARDER to lose weight! Wow! I never was overweight until I got sick (not heart sick...chronic excruciating pelvic pain) Then I packed on the pounds. Now I'm 100 lbs lighter, but still need to lose 60 more pounds. I wonder if I can do more aggressive exercise? Like their elliptical machines and weight lifting. I'm not sure how long I'll be able to do it! Lol! 4 minutes at first maybe. ~ I want to thank all of you for answering. You gals and guys are great! Heart-felt, informative, concerned. This site continues to be an amazement! Thank you!
First - for some reason, I have been unable to post to your individual sites to reply to each of you. So hopefully this will post. - Thank you! Thank you! Thank ...Read more
First - for some reason, I have been unable to post to your individual sites to reply to each of you. So hopefully this will post. - Thank you! Thank you! Thank you! You all have given me great information and encouragement! ~
The Cleveland Clinic's cardiologist and surgeon believe it's best to monitor my tricuspid. I was able to follow-up and talk to my surgeon, Dr. Hani Najm on the phone to clarify things. He really could not tell me a number for how large my heart is. He did not have a number. I had a heart cath. in May with my hometown 2015 along with a TEE also in May of 2015. In hindsight, Dr. Najm the surgeon said to my question, that yes, it would have been nice to have, a new heart cath. and TEE, and by their doctors. He said my regurgitation is 3.5 out of 4 (4 being bad). He mentioned that the tricuspid valve is a frustrating, fickle, and 'forgotten' valve. It's difficult to know how beneficial such an operation would be, in my condition. He could not, in good conscience, operate on me at this point and say he has improved my life. I had good pulminary function, no fluid around my heart, no water retention or history of water retention, nor distended belly. Due to my myriad of symptoms, it would be beneficial seeing another specialst at the Cleveland Clinic, but it would not be under this benefit. The cardiologist, Dr. Razavi, was such a sweet man. He has over 50 years experience, many of them with pediatric patients. Looking through the tests, and an examination of me, he concluded that I have a rare congenital heart disease called Ebstein Anomaly. The treatment plan would be to monitor me close as an out patient. In 3 months, if all tests look the same, I'll return in six, and so on. He will probably operate at some point. I have to say, I'm very impressed with the Doctors Najm and Razavi, our liason at Cleveland Clinic, Mrs. Brina Byrd, Kathy our, liason at Accolade, the Cleveland cliniic nursing staff, and the Cleveland Clinic campus itself was impressive. Thank you, community buddies on the heart-valve site for guidance, information, and encouragement! Thank you to my Sissy who made "Lori's Blessing Book" with family and friends putting their support, encouragement, and especially your prayers and love on paper. The book my sister and other family members compiled was so awesome it kept me going through the rough times. I took it with me everywhere! It had memories, thoughts, prayers, poems, scriptures, stickers, doodles, drawings (Sister with the curly hair ā” I with my pony-tail flippin' straight up) good wishes from dozens of people, friends that I hadn't seen in years! ...for my surgery that I didn't have but might someday. Eeeek! Thanks everyone! Love Infinity P.S. - I get to keep swimming! Sammie... I'm comin' for ya!
Petey Bello Lori thanks for the update! I'm glad your surgeons did a thorough evaluation & made the right decisio ... Read more
Petey Bello Lori thanks for the update! I'm glad your surgeons did a thorough evaluation & made the right decisions. You have been on an emotional roller coaster. Glad you do not have to go into surgery at this point! You have a lot of positive support from your family, friends & doctors. You will need it as you continue your heart journey. Prayers are with you!
God Bless :)
Barbara Laurie God Bless Lori, so glad you got to get some answers. Yes, EA is rare, but so are you! And, thank God ... Read more
Barbara Laurie God Bless Lori, so glad you got to get some answers. Yes, EA is rare, but so are you! And, thank God there are pediactric surgeons who have experience with it. So glad you get to go back to your water, and the joy it brings youā¤ļøšā¤ļø
Wanda Mroz Glad to hear you have some answers finally! If surgery happens in the future we will all be here roo ... Read more
Wanda Mroz Glad to hear you have some answers finally! If surgery happens in the future we will all be here rooting for you!š
Lori Phillips Thank you Petey! Yes! I'm fortunate to have top-notch doctors, and such a supportive network of frien ... Read more
Lori Phillips Thank you Petey! Yes! I'm fortunate to have top-notch doctors, and such a supportive network of friends and family! ~ Barbara, Yes! Both the cardiologist and the surgeon were heavily involved in pediatric heart patients and heart surgery. They really know their stuff! yes I am so happy to be back home and to start my water therapy with my pool pals so much! Wanda, yes, I've been blessed with so much love. I'll post some pictures of my "blessing book" my sister started. It's kind of like the movie "The Sister-hood of the Traveling Pants". My sister formatted this homemade book, but blank pages went out everywhere. She mailed it to childhood friends I hadn't seen in years, out of state reatives. She had a little station at her house for people to come and sit with blank pages, markers and stickers where friends and family would come to write inspirational quotes messages, drawings quote scripture, had sleeves with family pictures with extra sleeves to put post-op pics in of my nurses, doctors ,daughter was a 'secret courier' taking blanks pages to friends & family! All to make this one of a kind book, with which I took everywhere! It was the the 2nd of two gifts she gave me that night in the ER that could NEVER be dupicated! I'll let my sister tell you THAT story!
Emily Rowley You are in great hands with a highly specialised team who have thought this out thoroughly. I wish yo ... Read more
Emily Rowley You are in great hands with a highly specialised team who have thought this out thoroughly. I wish you all the best in life, I hope to conitue to hear from you and keep us updated. I look forward to your posts, your messages are lovely Lori š
They recommended no surgery, but to monitor me. First at a 3 month span. Then 6 months, etc. I love the cardiologist and the surgeon. They are amazing and ...Read more
They recommended no surgery, but to monitor me. First at a 3 month span. Then 6 months, etc. I love the cardiologist and the surgeon. They are amazing and I am sure they know their stuff. I cried in my wheelchair with elation that I did not have to go through such a surgery. But it kind of hit me when I got back to my hotel. I came broken and I'm going home broken. Everyone, especially those who've had the surgery, kept saying, "You'll be a new person! You won't believe how much better you're going to feel!" So, I love not having surgery, but, I was sick when I came and I'm going home sick. I am really in a bit of emotional turmoil. The surgeon said that my pulminary test was good. And I don't retain water. He said he cannot tell me that the operation will make a difference in the quality of my life at this point. They'll watch it and if the tests get worse as I come back up in intervals, they will do they may do surgery. He said it's a timing issue. I'm 49. Also the cardiologist said I may have Epstein Anomaly a congenital defect in the heart. There's no way of knowing this. But it really doesn't matter. The tricuspid valve is the "forgotten" valve. It's debated among surgeons whether to go in at all on tricuspids. Paraphrasing, "They leak. So what. You're not in heart failure." So PLEASE ANYONE If you have any thoughts, please help. I'm on a FREE RIDE as a benefit from my husband's employer. If I am not allowed to make a follow up time with him, I don't know if they'll let us stay here. Please don't mention any of this to Facebook or if your a guest of mine don't comment on social media until I figure this out! Waiting for any responses ~ ā”
Clare Auten Lori, I don't really have any advice but will continue to pray for you.
I do think the Epstein Anoma ... Read more
Clare Auten Lori, I don't really have any advice but will continue to pray for you.
I do think the Epstein Anomaly is what Barb and Nicola have (if I remember correctly)
Emily Rowley Ah Wilhelm Ebstein, which is where your septal & posterior leaflets of the tricuspid valve are displa ... Read more
Emily Rowley Ah Wilhelm Ebstein, which is where your septal & posterior leaflets of the tricuspid valve are displaced down lower of the right ventricle of your heart. Can they remodel the leaflets? Does it cause any problems such as enlarged heart chamber from leakage & how much leakage do you have? I think they should have looked at this earlier and told you, you have travelled all that way hun! I would be asking them more questions. I am thinking of you, let us know how you get on xx
Rita Savelis A surgeon who doesn't operate unless it's necessary (especially for major surgery) is a good surgeon. ... Read more
Rita Savelis A surgeon who doesn't operate unless it's necessary (especially for major surgery) is a good surgeon. I understand all the hopes you had going to this appt ("to feel like a new person"). The emotional roller coaster ride is difficult. Speaking from post surgery (a year ago) I say, if you don't need surgery and you're not in heart failure, this is a good thing.
Lori Phillips Thank you ladies so far! My hotel has not good wifi and data won't come on Emily Rowley. I tried to p ... Read more
Lori Phillips Thank you ladies so far! My hotel has not good wifi and data won't come on Emily Rowley. I tried to post a note to you. It wouldn't let me. I hope you see this: what test shows how much it's leaking. And do they assign it a number system? Same question for heart size...what test and is it number scale. I thought I saw something in Adam Pick book. Can't reach you by YOUR post. Don't know why. Rita Savelas yes thank you! But want to get all info I can while I have access to Cleveland Clinic. Clare Auten thanks. Prayers are so appreciated. Keep any more info coming. Might have to check out of hotel! Eek! Homeless in Cleveland!
Sameer Khan Don't worry, they know what is better for you. So don't be sad.
Emily Rowley Hey Lori, I know how bad wifi is out and about. In my Hospital I had free wifi which never worked pro ... Read more
Emily Rowley Hey Lori, I know how bad wifi is out and about. In my Hospital I had free wifi which never worked properly. Yes this has reached me āŗ
In different places they may use different techniques of measuring the leakage. The echo will show them if there is any leakage (when you see the colour flow representing blood flow on the screen) and how much (as well the technicians will provide measurements for the Heart Specialist). Sometimes TEE gives a better, more accurate view of the heart and valves. For mild leakage around 1-10% they will leave and just monitor with echos. Moderate-Servere Leakage they will most likely Operate esp if experiencing symptoms, however they take your health condition into consideration. Some Surgeons prefer to operate on people with heart conditions but without symptoms. They like to get to it before the chambers enlarge (echo+CT Scan can show this and any excess fluid around sack of the heart) and leads to heart failure. Do you also have a hole in your heart? With your heart abnormality, they might not be able to replace the valve but rather a repair+reconstruction might work better, being congenital it is abit more difficult. Your Specialist will know what's best for you and your health in the long run and whether or not surgery will benefit you. It is best not to rush this and into things, you are always entiled to a second (or how ever many you like) opinion from Doctors. Mine surgery was post-poned 3 times (which was abit of a pain) but best thing even my main Surgeon agreed said "otherwise would have went in to open you up, got a surprise, unsure, needed to close you up then open again later date". I can look that up in Adam's book for you āŗ Take care hun, this must be a scary and emotional time for you, hang in there and let our prayers reach you (and hopefully these messages) xox
Emily Rowley In Stenosis they use gradients for measurements, but with your condition I believe it's the opposite~ ... Read more
Emily Rowley In Stenosis they use gradients for measurements, but with your condition I believe it's the opposite~regurgitation, in USA measured in ml for volume of back flow of blood. Mild= <30ml Moderate= 30-59ml Severe= >60ml. I can send a photo of pages in Adam's book by email if you like?
Emily Rowley Whatever your heart specialist team decide, things will work out well for you and they have your best ... Read more
Emily Rowley Whatever your heart specialist team decide, things will work out well for you and they have your best interests at heart. Keep faith, this is important honey. And check in with your team esp if unsure. I here to help in any way I can, although I am not a Doctor āŗ Goodnight Sweetie and I shall talk tomorrow xx
Linda Lloyd Chiming in here as well. Just got back from my cardiologist, and heās referring me to the Mayo Clin ... Read more
Linda Lloyd Chiming in here as well. Just got back from my cardiologist, and heās referring me to the Mayo Clinic, for my deteriorating Ebsteinās Anomaly, so maybe I can help with some numbers. The numbers that prompted this referral are my NT-PROBNB (blood testā436); Echo and Cardiac MRI Findings (R Atrium Severely dilated, R Ventricle Moderately dilated, Right Ventricular Ejection Fraction 45 %, Tricuspid regurgitation, moderate 17%). Weāll see what the Mayo Clinic says about the āwhenā for surgery (my situation is even more complicatedāIāll need 2 valves replaced; and already had ohs 13 years ago for another problem). Anyway, hope this gives another perspective? Just take good care, trust that this is the best decision, and like Emily says, keep the faith. And let me know if thereās anything else I can add about EA that might help.
Diane Capece Hi Lori. I know exactly how you feel. The same thing happened to me in Cleveland. I sent all my recor ... Read more
Diane Capece Hi Lori. I know exactly how you feel. The same thing happened to me in Cleveland. I sent all my records and was called with an appointment for surgery in October. Went day before surgery and had all my pre adm testing done, saw the surgeon and had my time set for surgery the next morning at 5:30. At 10 pm that evening I spoke to the cardiologist and was told my surgery was cancelled because she felt I should just wait and be monitored unless I became symptomatic. The next day we were on our way back to PA and at the time it seemed great. However, in March this year I became very symptomatic and spoke to the cardiologist in Cleveland. After some further studies back home I decided to make an appointment with a surgeon in NY. Have an appt. this month. I know exactly how you feel and I have alot of mixed feelings. I wish you well and hope things work out for you. I will keep you in my prayers and I will also let you know how I make out. I am very anxious and yet wish it was all over.
Barbara Laurie Lori. I know you're upset, but please. Take it as a good sign that surgeons at this renowned clinic d ... Read more
Barbara Laurie Lori. I know you're upset, but please. Take it as a good sign that surgeons at this renowned clinic did not think you needed surgery at 49 yrs old. When surgeon agree you need surgery, they are not joking, when they say not yet, it's the real deal. I know you're scared about a regurgitating tricuspid valve, but they aren't trying to be callous, LOTS of people live with it because the right side of the heart is the receiving side, while the left (think mitral valve) is the blood sending side.
Echo cardio grams can be subjective, so, if you got sent for surgery, and now the surgeons disagree, have you had an MRI? That can be more decisive. But, truly, Lori. You're not broken. You're wonderful, loveable Lori with a regurgitating tricuspid valve. I was born with Epsteins Anomaly, It took me regurgitating at well over 60%, WITH multiple quality of life dings (like shortness of breath, bad chest pain, no more stairs...) for the surgeon to say, now's the time. I had no swelling, and other signs of heart failure. I saw my Cardiologst every 6 months. I was 54 yrs old.
Please, please, you really can do well with a leaking tricuspid, I and Nicola (here) are proof of that, I turned 55 before I awoke from my surgery. OHS Is still very serious, I'm glad you have a reprieve to go home. Write anytime if you need help adjusting to just feeling normal again. BTW a catheter could diagnose Ebsteins and personally, I'd want to know. Maybe your Cardiologst would be able to talk to you more about how you're feeling. I've had the same Dr for 25 yrs, and he saves over an hour for me every visit. God Bless Lori. ā¤ļøā¤ļøā¤ļø
Emily Rowley Linda and Barbara (yes you are right, the Mitral Valve passes oxygen rich blood out to the body such ... Read more
Emily Rowley Linda and Barbara (yes you are right, the Mitral Valve passes oxygen rich blood out to the body such as the brain) defiantly have more experience with this, having this particular condition themselves they are a great help with beautiful soul just like yourself š keep humble, I know this must be a scary and confusing time for you and your family at this moment but you are strong and have our support here. Surgery is a big jump and not to be jumped into lightly.
Wow! Life can throw you for a loop! I am an INPATIENT at the most wonderful hospital, the Cleveland Clinic! I had planned to arrive Sunday on an air-conditioned ...Read more
Wow! Life can throw you for a loop! I am an INPATIENT at the most wonderful hospital, the Cleveland Clinic! I had planned to arrive Sunday on an air-conditioned plane, poppin' peanuts and listening to some Springsteen! Then check into a sweet hotel, arrive at the Cleveland Clinic, packed, with my legs shaved, and my hair done up real nice!
For the last four days, I had felt crappy. I had breen running around for 'Last minute shopping' and I'm disabled.. I don't run! So I think I wore myself out. But I was experiencing flu-like symptoms, but worse, and with a heavy heart and tingeling arms. Friday morning I knew I had to go to my local E.R. just to get checked out. (Shout out to Fort Hamilton Hospital) who did an excellent job! š¤ I thought they'd check my heart, say it was anxiety, and pump me full of saline. Now, my sister and my daughter were running around getting ready for a big "Going Away" party to the Cleveland Clinic. SO many of my sweet, caring friends and family were coming. Some people I hadn't seen since high school! And all my pool gals! They're the best. So naturally, I come up with a plan to convince my husband I was better. He went to work because I knew this was the last day he could get his last minute work done without anxiety. I didn't want to worry my daughter or take her away from work, and my sister was getting the party ready, where which I'd wear my new sandals with bohemian jangles! I didn't want anyone in my family to know I was going to the E.R. Just wanted a quick all clear and to score some hyraditing I.V. saline or glucose! I nonchalantly called or texted five friends. They were going to birthday dinners, having a day off to relax, packing for a trip. I couldn't ask any of them to drop their plans! Last option 911. As I was telling the 911 operator my symptoms, in walks my daughter. She caught me! She said I looked like a deer caught in the headlights! I felt like a kid sneaking a cookie from the proverbial cookie jar! She took me to the E.R. As soon as the word "heart" came out of my mouth, all hands were on deck. I STILL thought I'd be coming home. I had no idea they would eventually call another ambulance service to drive me the six, OH YES, six hours of a bumpy ambulance ride to Cleveland Clinic! Here I am with a migraine and nausea; with hairy legs and my hair CERTAINLY is not done up pretty. I'm a hot mess! But a hot mess in Cleveland! The Clin renowned for hearts! Best laid plans.... can't be can't be counted on! š¤
Elaine Cutri Sounds like an adventure getting there, but you're in the right place now at the right time! I hope t ... Read more
Elaine Cutri Sounds like an adventure getting there, but you're in the right place now at the right time! I hope they take great care of you, they did for me last year. Best wishes. Keep us posted.
Clare Auten I don't know of anyone who will care that your legs are hairy, but you. Take care. Hope all goes well ... Read more
Clare Auten I don't know of anyone who will care that your legs are hairy, but you. Take care. Hope all goes well.
Barbara Laurie Oh, Lori!! I get ya friend! I get that axiom so personally!! But seriously, a care flight would have ... Read more
Barbara Laurie Oh, Lori!! I get ya friend! I get that axiom so personally!! But seriously, a care flight would have been more humane in my mind than the 6hr ambulance ride! My 4.5 hour ambulance trip was so painful, I wouldn't wish it on my worst enemy! š So glad your in the good hands of Cleveland clinic, and being a hot mess of hairy legs is no biggy š I STILL don't care about my hair, nails or ,dear Lord, my now bushy browsš¬ You are a fun lady with a great outlook. Stay strong and we will be here waiting for your next post!! Best Regards & prayers. ā¤ļøšā¤ļø
Clare Auten Barbara, maybe Dave needs to start doing hair lessons for the husbands.... ;)
Kate Watson You are right about that, we can plan it all perfectly but it often turns out way differently than ex ... Read more
Kate Watson You are right about that, we can plan it all perfectly but it often turns out way differently than expected. Sorry it didn't go as planned but good thing you made it to Cleveland Clinic! You need to have that party when you get back home to celebrate your successful surgery!
Petey Bello Wow what a ride Lori. But glad you are safe & getting check out at your hospital of choice. It could ... Read more
Petey Bello Wow what a ride Lori. But glad you are safe & getting check out at your hospital of choice. It could have been much worse if you lived further away. Good luck to you as you head into surgery! God Bless!
Bob Fessler Wow what a story!! I hope your husband was clued in and made the trip too! Good luck on your surger ... Read more
Bob Fessler Wow what a story!! I hope your husband was clued in and made the trip too! Good luck on your surgery and let us know how you are doing in recovery.
Emily Rowley Whoa how come they transferred you, do you need the surgery sooner? Haha I know that feeling like a k ... Read more
Emily Rowley Whoa how come they transferred you, do you need the surgery sooner? Haha I know that feeling like a kid... 6 hour bumpy drive doesn't sound good. From all the good reports about Cleveland, I'm sure they will look after you and they will give you supplies and shave you āŗ When I had a heart scare before my Op, I was in ER hoping they would not transfer me to my Heart Hospital earlier unprepared-thank God they didn't, said best thing to do pre-op is avoid Hospitals to minimize infections. Take care hun xx
Wanda Mroz Oh my gosh! What a story worthy of a novel! Best of luck to you dear.... You'll be in my thoughts ... Read more
Wanda Mroz Oh my gosh! What a story worthy of a novel! Best of luck to you dear.... You'll be in my thoughts and prayers. Hugs.š
Pat Bijas Holy Cow, what a ride! Best of luck to you!
Peggy Whitecotton Bless your heart, what a trip! Be praying for you!
Nicola Laker Barbara I'm with you on that ...my hair, nails, feet and legs more hairy than my dog isn't a pretty s ... Read more
Nicola Laker Barbara I'm with you on that ...my hair, nails, feet and legs more hairy than my dog isn't a pretty sight but I haven't the energy or time to worry about these things.
Just need to concentrate on getting better and walking. Still struggling with the stairs so when I can manage on my own, I know that I will be able to be left on my own and I'm well on my way through recovery š xx
Barbara Laurie Nicola šš So true! And hang in there my type A buddy, be kind to your newly assaulted heart!! S ... Read more
Barbara Laurie Nicola šš So true! And hang in there my type A buddy, be kind to your newly assaulted heart!! Slow and steadyā¤ļø
Nicola Laker My house is a bit if a Ness by Vince is doing his best. Lucky for me he is an excellent cook.
I took ... Read more
Nicola Laker My house is a bit if a Ness by Vince is doing his best. Lucky for me he is an excellent cook.
I took loads of things into hospital and never used any if it. They supplied all the washing stuff I needed and to be honest I wax do tired that I never even bothered reading. I did get vince to bring in sone nice sandwiches though š x
Well, my body has relegated me to the automatic wheelchair shopping cart š„ Last minute items that I've been advised: boxer shorts (for the back side of those ...Read more
Well, my body has relegated me to the automatic wheelchair shopping cart š„ Last minute items that I've been advised: boxer shorts (for the back side of those 'Oh-so-pleasant' hospital gowns!), a comfortable coming home outfit which includes a large, cotton, V-neck t-shirt so my incision won't be hurting from a more fitting t-shirt, labels with my friends' and family's happy going away wishes which I'll stick to my already half-filled, spiral notebook so I can at least eye those good wishes and prayers from my bed, and I needed new luggage. Thanks everyone in the heart-valve community,
including Adam Pick, Cleveland Clinic Nurses & ā”Brinaā”, and those who sought me out on Facebook for your helpful tips, advice, and serious questions to ask my doctors and surgeon. Keep the inspiration coming! My surgery isn't till the sixteenth! š¤
Debbie Bentley Mine is Monday and I'm all packed and ready . I can't believe this is Fixing to happen
Emily Rowley Good idea for the boxer shorts, although after surgery I could barely manage standing up to brush my ... Read more
Emily Rowley Good idea for the boxer shorts, although after surgery I could barely manage standing up to brush my teeth so the Nurses placed two gowns on me, one for the front and one for the back-they showed alot of respect for me and my body, I'm sure they will do this for you too I find esp the older Nurses. Cotton shirt is excellent, I wear them everywhere even rehab hehe š (a bra surgical/front opening be a good option too+pads for menstrulating women although the Hospital should supply these). You sound very prepared, good work āŗ What day is your pre-op testing? Look forward to hearing your updates āŗ
My liason DID SAY I would not have time to talk to the surgeon because "that's just the way it's done." She said they have people coming from all over the world ...Read more
My liason DID SAY I would not have time to talk to the surgeon because "that's just the way it's done." She said they have people coming from all over the world and there's just no time. She is a very nice lady, but I didn't feel comfortable with this. But YAY! I got a package in the mail with lots of info and my itinerary. I have six tests one day with a cardiologist. Three another day with the last test showing my surgeon on there the DAY BEFORE my surgery. So I feel pretty confident that I'll talk to him. Or the cardiologist the first day. And that's good because I have a long list of questions to ask. (I've high-lighted the most important ones!) Thank you all for answering my questions! ā”
Elaine Cutri That's the same packet I received. Are they arranging for a car to pick you up from the airport? Gett ... Read more
Elaine Cutri That's the same packet I received. Are they arranging for a car to pick you up from the airport? Getting all the tests done in one day and getting the results is amazing. I was very pleased how everything went before surgery. I hope you get to meet the surgeon at least the day before. I was very pleased with Dr Roselli. He did a fabulous job for me, one year ago last May. See my story for more info. Best wishes!
Lori Phillips Elaine Cutri - Just about! 6 in one day, then the next day is blank, then 3 on the next day. Then the ... Read more
Lori Phillips Elaine Cutri - Just about! 6 in one day, then the next day is blank, then 3 on the next day. Then the day after that, surgery. Did they admit you the day before surgery? Or did you just come the morning of?
My surgeon is new to Cleveland Clinic but they've reassured me (and I've looked it up) Dr. Najm. He's done over 5,000 heart surgeries!
Thank you!
Wondering about Franklin today. Our neighborhood flooded! I'll post a pic! My chronic pelvic pain and arthritis in my knees had me barely able to get to the ...Read more
Wondering about Franklin today. Our neighborhood flooded! I'll post a pic! My chronic pelvic pain and arthritis in my knees had me barely able to get to the bathroom!
I saw my daughter today. Was able to hug her. I massaged my hubby's aching back. Those last two things made me happy.
Hi! I was wondering which is better; to repair or replace a valve. I haven't seen too many people who have or had tricuspid regurgitation. That's the boat I'm ...Read more
Hi! I was wondering which is better; to repair or replace a valve. I haven't seen too many people who have or had tricuspid regurgitation. That's the boat I'm in. What are the pro's & con's? Also the same question for human (do they still do pig valves?) or mechanical valve and do you even get a say? Any help would be greatly appreciated! š¤
Barbara Laurie Hi Lori, all depends on the condition of the rest of your heart. Repair is always favored first if po ... Read more
Barbara Laurie Hi Lori, all depends on the condition of the rest of your heart. Repair is always favored first if possible, but if that can't be done replace is the next step. I asked about mechanical and I was told surgeons never use them in the tricuspid. So, after my repair was not successful I received a pig valve (cow is too big) But, attempting a repair if possible is better because it's your own flesh. My circumstances were complicated by a rare congenital defect that caused me a great deal of struggle, but , as I said... RARE āŗļø And with the pig valve I'll be able to sniff out truffles š
Best regards Lori, talk all this over with your surgeon, he's eager to make you informed, prepared and at ease.ā¤ļø
Emily Rowley I have had my valves repaired twice. They prepared me for a possible replacement and a mechanical val ... Read more
Emily Rowley I have had my valves repaired twice. They prepared me for a possible replacement and a mechanical valve as due to the anatomy of my heart I couldn't choose a tissue valve. Sometimes they don't know if a repair is possible until they go in to operate. These days Surgeons try to preserve as much of your own heart as they can. As for different types of valves, it depends your Surgeon, with tissue valves mine uses pig valves. š· Speaking with your Surgeon, they should advise you on what they think is best for you and your heart especially as it's your Tricuspid valve, very specialised. You definitely do/should get a say and the decision ultimately yours. A good question to ask is how long will each procedure last, I was first told I should've got 30 years out of my first repair but only less than 5, now they say each year I get is a bonus but it won't last forever, but that's because my less than one in a million hearts which makes it complex. However I have faith in medical advances and my Surgical Team š I wish you all the best, I look forward to hearing which way chosen and how it goes for you xx
Rita Savelis A surgeon will typically try to repair a valve. If that's not possible, it will be replaced. I had my ... Read more
Rita Savelis A surgeon will typically try to repair a valve. If that's not possible, it will be replaced. I had my tricuspid repaired but two other valves replaced (aortic and mitral). With that many valves in play, mechanical for the two replacements was the best/safest option for my specific condition.
Lori Phillips Barbara, Emily, and Rita... Thank you for great answers and great questions to ask my surgeon. The on ... Read more
Lori Phillips Barbara, Emily, and Rita... Thank you for great answers and great questions to ask my surgeon. The only weird thing about this is they say I won't have a chance to talk to my surgeon. Many doctors and several friends told me the hospital where I had all my tests and diagnosis is not the best in heart specialization. I also added to the equation that my husband has a benefit where if you or your spouse needs heart surgery, they will fly you to Cleveland Clinic, have your surgery and care there all expenses paid. Wow! I was thinking of going to Cleveland Clinic anyway, this was just a lot of icing on the cake. But, the liason said people fly in all over the world to have heart surgery there and they just don't have the time to talk to you. She said I'll probably see him as I'm drifting off to lala land. (my paraphrasing). Then, once I clear post-op recovery (about 8 days), I'll fly home and my home cardiologist (along with my insurance) will kick in. I don't like the idea of not talking to my surgeon beforehand, but she says that's how it's done. š¤ Any thoughts?
Rita Savelis Well, sometimes surgeons don't have a lot of time. They are specialised in maximising their surgery t ... Read more
Rita Savelis Well, sometimes surgeons don't have a lot of time. They are specialised in maximising their surgery time, as they should be, being in that it is what they do best.... BUT, I would think, however, that there is an assistant surgeon, a regular cardiologist, a liaison person, a specialised cardiac nurse or someone who then gives pre-surgery explanations to patients.... The Cleveland Clinic sounds like it is riding on its reputation in surgery. I am sure that whoever does surgery on you there will do the right thing, but not having someone to discuss surgery with is not right. Ultimately it's easy for the famous Cleveland clinic because they won't even have to deal with you as a follow-up patient.... leaving that to your home cardiologist.
You definitely do have a say in what kind of valve you want, although surgeons/doctors will give recommendations. You are free to make a decision that goes against your surgeon's recommendations. Sometimes the agreement will be that your surgeon will try to do one thing, but keep the option to do what is needed (maybe not your first option/wish) when they open you up.
I had my surgery at Cleveland Clinic in 2014 with Dr. Gillinov and he met with me before surgery so my question is have they changed the procedure or is this a physician preference. I am a little surprised to hear they physician would not meet with you. The process is very structured, you would meet with a cardiologist and a surgeon based on my experience. You will also have a nurse and anesthesia consult. The surgeon checks on you after surgery.
Emily Rowley You're welcome āŗ What, they should allow you to see your Surgeon. I would not allow to be operated ... Read more
Emily Rowley You're welcome āŗ What, they should allow you to see your Surgeon. I would not allow to be operated on by a Surgeon who I can't see or feel comfortable with. Having a Surgeon who you can talk to and there every step of the way makes a big difference!
Bridget Sawmiller I am having my surgery at the Cleveland Clinic on August 4th and I did meet with my surgeon when we w ... Read more
Bridget Sawmiller I am having my surgery at the Cleveland Clinic on August 4th and I did meet with my surgeon when we went down there on May 12th. I was very impressed and that is why I choose the Cleveland Clinic.
I got one little thing accomplished today. I bought a journal for my surgery. Kind of an all-purpose journal from flight numbers to questions to ask, to take ...Read more
I got one little thing accomplished today. I bought a journal for my surgery. Kind of an all-purpose journal from flight numbers to questions to ask, to take to the hospital, to keep notes (like the article said). I've kept a journal since I was able to form sentences. Over the years, I've become sucked in by the intriguing, beautiful journals you can find at whatever bookstores are left (or online). But most of them are bulky or not practical for travel. So I got a regular old mead steno pad. Good size. Wire bound so you can write in compact or constrained places (like a hospital bed or an airplane.) But this weekend, with a family cook-out for memorial day, I had an idea. I got some avery labels. I'm going to ask my family to take a sticker and write something on it for my Journal. My sister, all through my various hospital stays, has left me little drawings with inspiring words. I'd wake up to find her drawings (me always with a pony tail; I'm the younger sis) and positive message. They always made me smile, laugh, or cry (a GOOD cry). Her sticker, I'm sure, will go front and center on my notebook. I can think of no journal that would be more beautiful than the words of my family. I KNOW looking at that 68 cent, 'ordinary' notebook that, no matter how much pain I'm in, will make me smile. š
Emily Rowley That is an excellent idea. I too have a pad size journal for my heart surgery and display folders for ... Read more
Emily Rowley That is an excellent idea. I too have a pad size journal for my heart surgery and display folders for my important paperwork for it and I always take an art journal to draw/write poems along the way āŗ You will have so many lovely journal pages from your family and friends to look back on and will give you a smile š I also posted alot on here...
Petey Bello Thats a great idea Lori! It will bring you comfort in the hospital!
Lori Phillips Thanks! It will also remind me of home... another reason to do what the doctors and nurses say to get ... Read more
Lori Phillips Thanks! It will also remind me of home... another reason to do what the doctors and nurses say to get out of the hospital and back to my family! š
The article that led me to this cool community had some good tips. An interesting one that sounds clever; bring a basket of candy for your nurses! They'll look ...Read more
The article that led me to this cool community had some good tips. An interesting one that sounds clever; bring a basket of candy for your nurses! They'll look forward to coming to your room and it's a nice lil' thank you for their hard work and attention! Here's the link to the article of 25 tips for heart surgery patients. >>>>
http://www.heart-valve-surgery.com/heart-surgery-blog/2014/03/27/25-tips-for-women/
Every so often, I receive a patient email that makes me think, "Holy Moly! I need to share this with our community!" The email below from Christine Wagner tr
Sophia Ridley This article is a fantastic insight for preparation. And yes, I did give my nurses a big box of choco ... Read more
Sophia Ridley This article is a fantastic insight for preparation. And yes, I did give my nurses a big box of chocolates on admission!
Duane Beeman I spent $300 on gift certificates at the liquor store for my ICU nurses. I think that's the only rea ... Read more
Duane Beeman I spent $300 on gift certificates at the liquor store for my ICU nurses. I think that's the only reason they kept me alive.
Eddie Patton Bought a bunch of indivually wrapped chocolates and truffles from the Godiva store and made a thank y ... Read more
Eddie Patton Bought a bunch of indivually wrapped chocolates and truffles from the Godiva store and made a thank you poster for my room. I got excellent care:)!!
Emily Rowley Truffles wow they are expensive š° I also gave my Pastoral Care Team and my Surgeon a special pray ... Read more
Emily Rowley Truffles wow they are expensive š° I also gave my Pastoral Care Team and my Surgeon a special prayer angel as my way of thanking them. It's hard to thank someone for giving you life again, I couldn't thank all those people including this lovely community enough, however what I do with my life is my gift in return āŗ
Eddie Patton Amen. I could never repay the doctors that fixed me and the angels that took care of me when I was a ... Read more
Eddie Patton Amen. I could never repay the doctors that fixed me and the angels that took care of me when I was at my most vulnerable. All super heros in my eyes.
Shannon Sullivan I just printed this off in preparation for my turn. I am a scrapbooker so I plan to have some homema ... Read more
Shannon Sullivan I just printed this off in preparation for my turn. I am a scrapbooker so I plan to have some homemade blank card sets to give as little thank yous. Maybe some tim hortons gift cards...as I am in Canada.
Petey Bello I gave my surgeon & his team a big box of candy!
Lori Phillips Wow! That tip is definitely on my list of things to bring to the hospital!
Emily Rowley I wish I could meet all the Surgeons and Staff who operated on me I would love to thank them in perso ... Read more
Emily Rowley I wish I could meet all the Surgeons and Staff who operated on me I would love to thank them in person. My suggestion is finding something that is meaningful to both of you and adding a personal touch. I read and think it's in Adam's Video that there will always be a bond between Surgeon and Patient. I wonder how people feel about this. Anyway sorry for overtaking this post...
Emily Rowley I found this website that sells products for surgery, may be helpful.
Emily Rowley Sorry to bombard your wall, here is a surgery gown 100% cotton you might like for Post-Surgery instea ... Read more
Emily Rowley Sorry to bombard your wall, here is a surgery gown 100% cotton you might like for Post-Surgery instead of Hospital Gown.
https://m.curediva.com/surgery/divas-surgery-must-haves/lola-gown.html
Well, I had an appointment with a popular chain of denistry offices to get that out of the way. I printed out their forms and filled them out ahead of time. ...Read more
Well, I had an appointment with a popular chain of denistry offices to get that out of the way. I printed out their forms and filled them out ahead of time. We encountered a train. It took us time to back track and go a different way. I walked in 9 minutes late. The receptionist said they couldn't see me because, according to HER watch I was 12 minutes late. She said "2 minutes past the cut-off" I said, "Do you mean to tell me if I had been here TWO minutes earlier, you would have seen me?" She said yes! I told her I would not need their services and to give me back my already prepared paperwork (which would have taken 10 minutes there anyway if I had not done it already at home!
I did accomplish obtaining a post op home cardiologist. I also took my last aqua therapy class with my pool pals. I'm going to desperately miss my friends and that healing pool.
Robert Osmachenko Good for you! You are the Chairman of your board which is you.
Lori Phillips Ha Ha! Thanks. I don't usually "push back", but hey I've gotta take care of myself. For the best; I'v ... Read more
Lori Phillips Ha Ha! Thanks. I don't usually "push back", but hey I've gotta take care of myself. For the best; I've heard bad things about them!
Christine Oliva Lori good for you. Your spirit will come in handy while you recover. I love my doctors dearly but the ... Read more
Christine Oliva Lori good for you. Your spirit will come in handy while you recover. I love my doctors dearly but there were a few times I had to say "Excuse me but......". I am a diabetic so I had to ask some questions about my diabetic care. My former brother-n-law is a doctor and I remember him telling me never be passive about your health. Respectful yes, passive no. Good luck with your surgery and keep on smiling. You can do it!
Emily Rowley What she spoke to you rude and not willing to assist you. Is this the Hospital you are staying at?
Lori Phillips Emily Rowley : No... Thank goodness they don't have anything to do with the hospital I'm going to!
Emily Rowley Few that is a relief but still not okay to treat you that way. Besides trains (esp here) never arrive ... Read more
Emily Rowley Few that is a relief but still not okay to treat you that way. Besides trains (esp here) never arrive on time+traffic is slow and having a heart condition is hard enough-I felt it walking before hand, how is your breathing and symptoms going? Are they a Hospital? Looking forward to hearing updates from you, feel free ask me any questions I'm here āŗ
Lori Phillips Thanks Emily! I have tons of questions! Maybe I'll ask one a day! I didn't have any symptoms at first ... Read more
Lori Phillips Thanks Emily! I have tons of questions! Maybe I'll ask one a day! I didn't have any symptoms at first. I'm already disabled and my ability to walk is limited. But it's become worse, and now I have shortness of breath at the least bit of exertion. Extreme fatigue. I have other symptoms for which a dozen or so doctors could not arrive at a diagnosis other than chronic pain syndrome. So I'm hoping that some of these symptoms were heart related and will dissipate after recovery. They found out about my heart problem by mistake after reading a sonogram of my abdomen. They caught a heart problem instead. I'm very fortunate that it was found at all!
Emily Rowley Yay I am happy to answer them and if I don't know I'm sure there is always someone on here who will ā ... Read more
Emily Rowley Yay I am happy to answer them and if I don't know I'm sure there is always someone on here who will āŗ I don't mind if you ask me all at once or a day. I know I too had so many questions pre-op so I kept a journal and take it to my appointments (but sometimes felt rushed so I didn't get them answered my my medical team). I also have an email address too āŗ
I'm am sorry to hear that, it seems unfair now you need to go through more š¢ It sounds to me like your condition is at the severe stage-that's how I was leading up to my surgery and found out it was severe.
What other symptoms do you experience hun? When did you start to notice your symptoms worsening, was that the purpose of your ultrasound? If you don't mind me asking, I understand it is a private matter and may feel uncomfortable.
Wow that is fortunate! Glad they found your condition. Were you born with your heart condition? My original Cardiologist said "There may be something wrong but how about we wait 3-6 months" I spoke up and said no I want a second opinion with top specialist, lucky I did my Surgeon said if I waited that long I would've needed a Heart Transplant and would've not made it to the end of this year if no surgery. Cardiologist thought my iron levels might be down (they were good) causing my fatigue. So having the right people who can help and looking out for your health is important.
After surgery your symptoms will recede and feel better (it will take time) esp the shortness of breathe & fatigue.
Today, I'm trying to find a reasonably priced dentist. They require a statement from my dentist saying I have no type of dental infection. I have to admit, ...Read more
Today, I'm trying to find a reasonably priced dentist. They require a statement from my dentist saying I have no type of dental infection. I have to admit, I am one of those people who are..... hmmmm... well the sound and feel of drilling just is not my cup of tea, to put it mildly. I know that's irresponsible but that's where I'm at now. The least expensive one I've found so far is $161.00. I'm off to find a gentler, less expensive dentist! š
Jean Raber Right there with you. Thanks for the reminder to stop being a wuss and get in for a dental check.
Lori Phillips Jean Raber Ha ha! Yes... if we can with stand heart surgery, a dentist visit should be the least of ... Read more
Lori Phillips Jean Raber Ha ha! Yes... if we can with stand heart surgery, a dentist visit should be the least of our fears! š
Jean Raber I don't know. Having a wisdom tooth dug out was THE worst pain I ever had, including having a baby. I ... Read more
Jean Raber I don't know. Having a wisdom tooth dug out was THE worst pain I ever had, including having a baby. I have refused to let them do my other one. My mother said she had very little pain after her OHS for AVR. I've developed quite a neurosis about dentists ...