Lori's Journal

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!) 😉 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!

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 ❤

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-law☆, 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! 🤤) 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!

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! ♡ 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 ♡

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! ♡♡♡

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. ♡

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!

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!"

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 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 ♡ 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!

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 ~ ♡

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! 🤗 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! 🤗

Well, my body has relegated me to the automatic wheelchair shopping cart 😥 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 & ♡Brina♡, 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! 🤗

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! ♡

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 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! 🤗

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. 😊

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/

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.

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! 😉