Good morning everyone! I typed this up already once but didn't seem to go through so I'm going to try again and hopefully it isn't duplicated. It's been quite some time since I've been on here as I had my mitral valve regurgitation fixed back in September 2013 where they repaired my own valve and put on an annuloplasty ring. I have just recently been diagnosed with moderate stenosis of that same mitral valve which I find to be odd. Has anyone else experienced this? Apparently this is a congenital issue. My sister has also just been diagnosed with SCAD at 56 years old. I'm wondering if this is all tied together. Any help / insight is appreciated! Thank you!
My daughter's beautiful wedding in July! Me and my hubby being introduced!
1 Year Anniversary...already!
Journal posted on September 24, 2014
It really doesn't seem like a year has passed since my open heart surgery! I'm still doing great. Working out at the gym pretty regularly and power walking a couple of times a week. My daughter's wedding in July was beautiful! It was such a perfect day! I attached a pic of me and my hubby being introduced.
I'm taking Verapamil again. I had gotten off of it a few months ago (at my request) since, as many of you know....I hate taking meds! I had started to feel the heart palpitations kicking in again so my cardiologist and I decided that I'd go back on them for a while longer. Other than that, no complaints!
I am really grateful for my family who have been there for me and have walked alongside of me through this whole ordeal. Thanks also to friends, coworkers and all of you HVJers! Thank you Adam Pick for this site! It's been such a great resource and place to come for support and camaraderie!
Best wishes to all of you getting close to your surgery and those early on in recovery!
I think a celebratory dinner tonight is in order!! Anyone wanna come? lol :-)
Been quite a while since I've written here, but since I just made it past the 6 month mark, I decided to write a little update.
Good news! I haven't had any hard, irregular, or fast heart beats in quite some time now. Had my last follow up with the "rhythm doctor" at BWH, Dr. Roy John, this past Friday, who told me I didn't need to come back (yay!) unless I had a set back. So it seems we got the extra pathway to shut down without having to go in and do an ablation after all. So relieved as I didn't want any more tinkering with the heart unless I really needed it. My blood pressure is great, heart rate is great. We did, however, decide to keep me on the calcium blocker Verapamil since it's keeping my heart rate and blood pressure down as well as the added benefit of helping my Reynaud's and monthly migraines. I was switched to this from the Metoprolol since it made my Reynaud's so much worse. The Verapamil works by opening up the blood vessels so the heart doesn't have to work so hard and in turn helped the migraines and Reynaud's. No bad side effects, so even though I hate meds, I'll stick with them for now.
Also, I'm back to working out at the gym most weekdays including adding weights back in to my workout just this past week. I've been sore the past couple of days because of the weights, but it's a good sore! I'm just happy to be fully recovered and back to my normal routine!
Been busy doing a lot of wedding planning as my daughter's wedding is this July. Those workouts will whip me into shape for looking fabulous that day!
For those of you in the early days just after heart valve surgery to those who are still anticipating it....keep your chins up, it does get better! I feel great and I'm sure you will too!! Best wishes!
or SVT for short. That's what they've decided on at this point but they did say I was a difficult case and wasn't as cut and dry as they usually are. I guess I may or may not have had it prior to my MVR and could have been triggered by the trauma to my heart during surgery. The rhythm doctor, Dr. John at BWH, has me on metropopol 150mg extended release per day. So far, so good. My heart rate has been around 70-80, so much, much better than hovering around the hundred mark as it was before and tons better than the 150's as it was when I was having those abnormal rates/rhythms/palpitations.
I received a call today that they are shipping out a heart monitor to me. According to Dr. John I'll wear it for 21 days and then we'll go over the results at the end of January. Hopefully all will go well, my heart will be completely healed from the surgery, and he can taper me off of the meds (I hate taking meds!). So all is well for now. Thanks for all the well wishes and prayers! You all are the best! Here's wishing everyone a healthy, happy Thanksgiving!!
I finally got a room at BWH last night and am so relieved. Did a lot of waiting around today for the "rhythm doc" to visit me. He must be a popular guy as he didn't get to see me until late afternoon. He did a few tests and feels that the calcium blocker my local ER put me on is not working as well as he'd like so I'm off of that and am trying a beta blocker now to see how I respond to it. He also wants to get a better view of my heart rhythms by slowing my heart rate way down and then to also let it go back up into an abnormal fast rhythm while I'm hooked up to an EKG. Should be fun! I really haven't slept well all week so I'm hoping tonight will be different :) Good news is they took out the IV in place of oral meds so after disconnecting the EKG, temporarily, I was able to shower! It's the little things!!
I had been doing so well! Had an echo and got the ok from cardiologist to not have to follow up again until next February! He told me all looked fantastic. Even got the go ahead to go back to the gym, lift weights and pretty much do what I had been before surgery. I was so excited and relieved but hadn't actually started to yet. Then I started having a lot of heart palpitations and abnormal rhythms for the last 4 evenings, so I ended up going into the local hospital's ER last night (after discussing with my cardiologist) for them to do EKG and they ended up keeping me overnight. As soon as they got me wired up, one of the "episodes" started. Perfect timing for them to be able to capture it on the EKG machine. It came and went and shortly after another started. This one, however, did not go away on its own but instead the ER doc gave me Cardizem in an IV drip. It reduced my heart rate a little bit at a time increasing the med a couple of times to get them to stay below 100 BPM. ER doc believes I have Atrial Ectopic Tachycardia and that I will most likely need an ablation to fix it (through cardiac cath?). He contacted Brigham and Women's to send me there via ambulance. No beds available so they admitted me while waiting for one. That was at 3am this morning and I'm still waiting. I called my cardiologist first thing this morning. He, based on info I passed on to him, does not believe it's as serious as I was led to believe here and he thinks it could be controlled with oral meds. It's 8pm now so it seems I'll be here another night as still no beds @ BWH. I'm stable and comfortable but am antsy for definitive answers. I'll keep you all posted. Best wishes and prayers to all in recovery, those in presurgery wait mode, and especially to Rachel across the pond.
I've been quiet because I've been putting a lot of effort and time into my Bermuda cruise packing and planning. I didn't want to overdo it so I would just do a little at a time and listen to my body, resting when needed. Then we were off for the week without internet (was kind of nice actually), We just got back this afternoon and had a great, relaxing time! I've been getting better day by day, but is still a much slower progress than in the first week or two. I've just started to sleep without being propped up and can even sleep on my sides for short periods with a little pillow help. My blood pressure and heart rate has been great! I think this last week on the cruise really helped me relax and rest since they do everything for you! Back to work tomorrow as it'll be 6 weeks post op this upcoming Tuesday. People were really surprised on the cruise that I had open heart surgery just 5 weeks before. Having the mini thoracotomy made it easy to hide the scars and therefore to also forget about it for a while. I did get inpatient with the elevators a couple of times and took the stairs for a couple too many levels and realized it pretty quickly getting out of breath and having to slow waaay down. I had been feeling so good, I would simply forget that I was recovering from such a serious surgery! So the family started getting after me and reminding me to stick to the elevators unless it's just one deck up. I love them! They've been so great! I didn't do any measured walking per se, but there is a lot of walking on the ship from one end to the other, and walked the beautiful beaches, so I think I did ok on that front anyway.
I added a couple of pics from the cruise including one from our on board Halloween costume party. We had a blast! My hubby looks just like Howie, doesn't he?
Best wishes to all and kick some open heart surgery butt!!
I had my post op cardiologist appt this past Wednesday and was told that since my heart rate was not over 100 anymore (with any consistency) and since my blood pressure has been on the low side (not too low) that they would not be putting me on beta blockers after all. YAY! I've been checking both a couple of times a day and my heart rate has been in the 80's to 90's only going over 100 after a good long brisk walk. Blood pressure has been really good (100/75 average) as well.
So my cardiologist scheduled an echo-cardiogram for 11/9 and a follow up with him the following week to go over the results. If all that goes well, I won't need to see him again for quite some time (once or twice a year?). It was funny because I waited an hour in the exam room (well that part wasn't funny) so apparently he was rushed and behind schedule and must not have reviewed my file very extensively before coming in as he was intently looking at the center of my chest for the incision! He seemed confused since you couldn't really see my scar under my right breast. He was pretty impressed with the job Dr. Byrne did! I was given the ok to start driving (yipee!) but just around town for short errands. No driving into major traffic areas yet (like Rte. 95 into Providence with all the road rage drivers haha).
Haven't had any pain or real discomfort so still no pain killers and not even Tylenol or ibuprofen for a couple of days now. Still can't really sleep on my side or flat on my back yet. My heart just does flip flops and feels uncomfortable, so sleeping with some pillows propped up a bit and getting 8 hours good quality sleep. Works wonders for the recovery!
I walked for 3 miles on Thursday in under an hour! At first my chest felt tight and I felt like I wasn't getting enough air and got really nervous, but I carefully pushed through and it actually got better and better as I went along! I stopped at 3 miles, but probably could have kept going and still felt really good when I got home. Not tired or needing to nap or rest at all. The real check though was that I still felt good the next day so took another 1.5 mile walk stopping early only because my "chauffeurs" were to take me to my work for a visit to say hello to everyone. It was great to see (and hug!) everyone!
Based on my own experiences, I would suggest that if you can get to one of the top heart valve clinics listed on this site and have a top cardiac surgeon do your procedure minimally invasive (mine was a mini right thoracotomy for mitral valve repair) that seems to be, in my opinion, the best outcome as far as pain, complications and recovery time. The first doctor I spoke to said it had to be a full sternotomy as they "don't do this type of repair as minimally invasive". Glad I got a second opinion and did my research!
I'm off for a nice walk on this chilly, sunny, fall day and then more planning/packing for my cruise leaving next weekend! I am so grateful to God, my doctors, nurses, family, friends for this second chance at a healthy second half of my life! Whoohoo!
2-1/2 weeks post op:
I had a couple of follow up appts this week. Tuesday I visited with my PCP and got a really good report from her. She was so happy with the way things turned out that she gave me a big hug. I also had a follow up scheduled with Dr. Byrne Thursday. Unfortunately, he ended up being called in for emergency surgery so I did not get to see him, but instead met with one of his team. It was quite the long wait since they ended up being so backlogged. I first had a chest xray which did show some pleural effusion in my right lung. She didn't seem too concerned about it but did mention how high my heart rate was. It's been over a hundred for the past few days (most likely from stress at home). My blood pressure was also on the high side 148/98 but since it is usually perfect or even a bit low, I figured it was from some recent personal stress and from waiting in the waiting room for almost 2 hours with no one telling me that my surgeon had even left for an emergency. Now I've been touting BWH as being so great, but I was speaking about the medical care (surgeons, nurses, etc.). The office staff is ok but I have had some issues with them even before this. Because of the high heart rate, I was told to try to get in to see my cardiologist as soon as possible and to monitor my heart rate/blood pressure daily in the meantime. My husband went out and bought me a battery operated cuff/machine at CVS. Blood pressure is back to normal, but the heart rate is consistently over 100. My appt. with the cardiologist isn't until Wednesday but the surgeon's office said if it doesn't go down I may be put on beta blockers as the high heart rate can raise the failure rate during the first year after mitral valve repair (which is 10%). After the first year, I'm told, I'll be over the hump and can expect great long term results. So I'm taking it slow this weekend and doing a lot of deep breathing exercises to try to help keep the heart rate down. Still have the big lump where the cardiac cath went in. May be a hematoma but my PCP actually seemed to think it was scar tissue. Still just taking ibuprofen here and there, but my breast numbness is starting to wear off a bit so I do feel a bit more soreness and pulling on the surgical site. I've been able to walk for long periods without getting short of breath but I still get short of breath sometimes when I go up too many stairs. There's still some soreness when I breathe in deeply (actually a bit worse than just a few days ago). Most likely from the pleural effusion as I only feel it on that side.That's my update for now. I'll write again if something new comes up, or if not, it'll be just a weekly update some time next week. I hope everyone is doing well and enjoying the fall weather! Tomorrow is my daughter's 24th birthday so the girls are coming over for pumpkin martinis and to watch one of her all time favorite movies "Young Frankenstein". Looking forward to it!
Happy Monday everyone!
Tomorrow marks my two week post surgery date so I wanted to share my experiences for this last week. I've had some ups and downs, but mostly ups. There have been a few times that I was feeling so well that I overdid it, just as others here have done. When this happens I end up having a down day feeling unusually tired, so I rest up and start again the following day trying to keep in mind that I should take it a bit more slowly so as not to have a repeat performance. I'm still only experiencing some tenderness at the surgery site where, surprisingly, most of the dermabond is still in tact. Still a lot of bruising on my right side under my armpit and have some tightness on that side of my chest where they cut through my muscle. My right breast is still almost completely numb. My left groin area still has a 2x4" hematoma where the cardiac cath was done. I've been wearing yoga pants as they don't rub or are too tight on that area. Sleeping pretty well but do occasionally experience my heart rate increasing and just an uncomfortable feeling when sleeping on either side instead of on my back. Not sure what causes this so if anyone out there knows, please share :-) Every day has gotten better, but the progress has certainly slowed down a bit. It'll be a while before I am back to where I was, but I'm getting closer every day. This week will be filled with follow up doctor appts, (cardiologist, PCP and surgeon) including another trip up to Boston, so we'll see how all that traveling around goes. I've done some short trips with my daughter for lunch and a grocery store run, but am usually pretty wiped out afterwards. I hope everyone is doing well and some of this info helps calm some presurgery nerves. Now I'm off to do more precruise planning! 3 weeks til my Bermuda trip! Can't wait!!
Can't believe just one week ago I was in the OR having open heart surgery! I've had some personal victories to share. Yesterday I took two 1/2 mi walks and felt pretty ok afterwards. A little bit tired and some chest tightness but all in all it was good and the beautiful weather gave me a good mental boost. I also reduced the OTC meds to only taking them once in the am and once in the pm. Was able to sleep in a mostly lying down position and even shifting to my sides (both) at times without too much discomfort. This morning I made my pre-surgery weight so all that extra water weight is finally gone! Yesterday was filled with making my post-surgery doctor appointments with the surgeon, cardiologist and my PCP. Now I can start the countdown to my cruise to Bermuda later this month! Thanks everyone for the prayers and well wishes and best wishes to all who are getting close or who are still recovering!!
Was sprung this morning from BWH. Have to say the drive back was uncomfortable. Not much traffic since it was 11am on a Saturday but the bumpy roads and aggressive drivers (an ambulance drifted into our lane and my husband had to land on the horn!) made me stressed out and feel car sick. It was great to see my family and the dogs. Took a couple walks around the corner with my husband by my side, had some cal zone (tired of bland hospital food) and my girls went out to get stuff to make root beer floats. They remind me of my mom who loved them too yum! Took a couple of trips upstairs too. Still on just rotation every 3 hours of Tylenol and Motrin and it's done the job so I stay away from the oxycodone. I've seen and heard about many people getting phantom pain where the oxycodone made them think they had pain even when they didn't and made it hard to get off them. Don't get me wrong they have their place but I wanted off asap and since the OTC approach is working...well if it ain't broke don't fix it! That's what works for me. Everyone is different. Was told that I'll have a visiting nurse come by starting tomorrow to take vitals and check my incisions. I didn't realize that I'd need one but they know best! Been a long day, it's 10pm here so I should get to bed, my OWN bed yay!! Best wishes everyone!
I sincerely believe that if you visualize and believe that you'll recover quickly it really helps. I tried to wash up with soap and face cloth, brush my teeth and hair (dry shampoo spray works great), put on nice jammies from home that brighten you up (button up front with a large pocket/loose comfortable bottoms) and wear my own slippers, as early as I possibly could, even if I needed help (which I did the first day or two) really helped me.
Go in with empty colon! Do not do what I did and have a big family dinner of pasta and cheesecake and a root beer float for a snack! Well still do it, just not the night before :) What is in your colon when you go in, stays in there for several days!
Bring your tablet or cell phone and keep in touch with friends and family. Don't bother with a blow dryer or shampoo, you don't get to the point of being able to be fully immersed in water until it's time to leave anyway. I haven't been able to until possibly tonight because of one incision still not healed enough but I'm leaving tomorrow anyway. If I think of more I'll post another time but want to take the opportunity to thank Dr. Byrne and his BWH team, Elena the anesthesiologist, the admission staff, Jody my ICU nurse, the many other nurses and PCAs with a special shout out to the nurse I had the most Caity who was phenomenal and her sidekick Kelsey the PCA, you all here, Adam Pick, my friends at Brown Univ. and on Facebook, old childhood friends, neighbors, but most of all would like to thank my wonderful family!! I am truly blessed! Good night and best wishes to all!!
Not much new here. I slept pretty well again only getting up to reshift myself to get comfortable or use the facilities. On that note, they won't let me leave today after all, since I haven't moved my bowels yet and need to practice going up and down the stairs. Had the discharge class yesterday going over things like not sitting in front seat of a car with airbags if you had a sternotomy but can in my case with a mini thorocatomy and shoulder belts are OK in either situation. Went over tips on how much weight to lift - no more than 10 lbs for three months, no driving for 3-4 weeks, and be on top of abnormal weight gain such as 2 or more lbs in one day that can't be contributed to excess salt or that doesn't go away the next day or two or 5 lbs in one week. They also went over meal choices however my cardiologist specifically told me I have no food restrictions since my valve was just a bad one I was born with. I do have to watch the salt intake now while in the hospital due to all the extra swelling water weight from the surgery. My nurse just came by to take me for a walk. Will post again soon. :)
Got a decent sleep last night 4 hrs straight then 4 more with one interruption. Felt great! Dr. stopped in when making rounds and said I may even go home tomorrow. I'm not counting on it but it would be nice. Had the chest tubes and catheter removed then a chest xray. No pain meds since early this morning just Tylenol. Ever since they took out the chest tubes my pain is much, much less significant. I hope it doesn't backfire and I don't sleep tonight though! I do have to put in a correction from my last journal post for any of you presurgery that they did at some point remove my naval piercing and I didn't get it back. It was expensive and I wouldn't have worn it had the surgeon not told me specifically that it would be fine. Maybe I'll just get a new one that has a heart on it :) Thanks for all the support! I couldn't have done it without you!
Went for a quick walk today and got on top of the pain. Chest tube and catheter come out tomorrow. Was moved out of ICU. Dr. Byrne said it went almost perfectly. Feels like someone stuck a knife in my heart....gee I wonder why! Back hurts on that side too. Had to get insulin for the first time in my life as they say this can happen temporarily after major surgery. One thing I didn't bring that thankfully my husband had was ChapStick. Having the breathing tube and only getting fluid via the IV, made for dry mouth and chapped lips! BWH is state of the art and everyone here is absolutely fantastic! I had a nurse all to myself today! They don't do the spirometer but just ask you to cough and deep breathe once an hour. Thanks for all the prayers and well wishes....they worked!! Best wishes to Deb tomorrow, you are in my prayers. You'll do fine! Couple of tidbits of random info, acrylic nails without polish are fine and belly piercing did not need to be removed. I'll check back in tomorrow. Hopefully I'll get some sleep although they say they come in to do vitals every two hours...guess not much sleep for me again. I posted a pic of me n my kids during their visit.
Hello, everyone! This is Lauren (Carol's daughter) posting on Mom's behalf. I just got the call from Dad a few minutes ago that the surgery went well. Her mitral valve has been repaired and she has been moved to the ICU. I'll be headed up to Boston shortly to visit her, so once she's awake and alert, either she or I will further update you all! Thank you all so much for your thoughts and prayers, we all appreciate it (especially Mom).
Made it into Boston without any major traffic issues. My husband works in this area all the time and knows the back roads. Only took an hour this time! Got admitted to Brigham and Women's, had a few last minute tests then the cardiac cath. They tried to go through my right wrist as is the latest way to do it and works 90% of the time but my veins are small and did not cooperate so through the groin they went. I was pretty much asleep but not in a deep sleep. I don't remember a thing. Everything came out perfectly so no worries there. Since I had MRSA about 4 years ago (my son's a plumber and got it from a hospital), the nurses have to take all these extra precautions. Maybe that's why I got a nice big private room with a view from up here on the 8th floor! :) I wonder if they'll even want to eat these cookies I made now....hmmmm I may need to eat them all myself! Ron has a nice couch/bed and his own TV. Not bad but let's see how his bad back handles it tonight. Nurses and staff are great! So organized. Its a smooth running operation. Everyone's really helpful and pleasant. Tomorrow's the big day so I might as well get settled in for a long day today and try to rest.
Finished up at work getting as caught up as I could and taking care of some things ahead of time for while I'm out. I've never been away from my job for more than a week's vacation in the 13 years I've been there. It was really strange. I'm glad it's over! I was getting really stressed out about it. My brother Doug came for dinner last night. Always great to see him and catch up. Today I made 2 lasagnas and yet another batch of cookies for the nurses! My family keeps eating them all! I guess that's a compliment though. This time it was cheesecake peanut butter cup. I'll have to hide some :) Got packing, more baking cookies, pay a few bills, watch the Patriots game, big dinner with the whole extended family, then shower and shave. Must be on the road by 6am Monday for a 7:30am arrival at BWH!
Had my follow up with my cardiologist Dr. Williams who told me the CTA scan was perfect with no other issues to worry about. Phew! He explained that the extra hard thumping of my heart that he could feel was most likely due to my being slender. Now I can put that worry to bed! :)
Also spoke with BWH to go over pre-admission info. I still have to call Friday afternoon to find out a definite time to be there on Monday, but the nurse said the preliminary time at this point is 6am. Guess I won't have to worry about traffic into Boston at that hour!!
They also confirmed that my husband can stay overnight even when I'm in ICU. Wondering where he sleeps though since I don't think I technically have a room yet at that point. They assured me they could accommodate him. He's got a bad back so I hope it's not going to make him be in pain too.
Been having a lot of chest tightness and shortness of breath lately so it's helping to realize that I do need this, especially since I really didn't notice symptoms before the diagnosis. Still working out but backed down on weights and intensity. Both Dr. Williams and my surgeon Dr. Byrne say I have just had a bad gene passed down (a weak mitral valve gene?) and that once it starts to go it can progress quickly. One of the good things about it is that it's not due to bad diet or lack of exercise so no need for major lifestyle change and I should recover quickly and feel better than ever. So now I just want it to be here and get 'er done so I can move on and feel better. I am in the homestretch!! Bring it on!
Almost 2 hours of traffic to get in to Brigham and Women's this morning! Good thing we knew better and left early. Had just 5 mins to spare! Lauren drove me in and Renee came along for support. They are special girls.
Met with Dr. Byrne for the first time. A little more on the serious side than Dr. Cohn but we had a few laughs too. He had a good way of showing us the issue with my floppy valve and how he'd tighten it up by using the exam curtain as an analogy and the door jamb example for the annuloplasty ring. It was quite helpful and I appreciated him putting it in plain terms for us. He took his time answering all of our questions until we felt satisfied with the answers. I was very comfortable with him and now that I've met him I am more comfortable with the surgery.
Still going with mitral valve repair via 3" incision under right breast. 4 hour approx. surgery with about one week in hospital and 4-6 weeks total recovery.
If for some reason he went in and felt it needed replacing instead of repair he says the bovine valve is what he would use. Very slim chance that would be the case though.
He didn't seem to know why Dr. Williams my cardiologist, would have wanted me to have that CTA scan and was going to call him to discuss. Guess I'll find out more at my appt next Wednesday with Dr. Williams. Dr. Byrne did confirm that I'm still having the cardiac cath as is his preference as my surgeon. So much for getting out of that test!
Long day but good and productive. I'm able to put some fears to rest and feel a bit better about the surgery. Oh and he ok'd my cruise for 5 weeks post surgery and actually thought it was a great idea!
Tomorrow will be a busy day! I'm meeting with my cardiac surgeon Dr. John G. Byrne and I'm also having a bunch of my pre-op tests including the newly added CTA scan that my cardiologist recommended I have. Does this test take the place of the cardiac cath? I thought I read that somewhere. Lauren and Renee (my girls :) are escorting me into Boston. What a gift they are! I'm looking forward to getting it all over with and meeting with Dr. Byrne for the first time. I've got a list of questions for him. Wish me luck! I'll let you all know how I made out. Oh and if any of you fellow HVJr's have suggestions for questions to ask the surgeon....I'm all ears!
Follow up: My cardiologist's office called first thing this morning to let me know that the doctor was going to appeal the insurance co.'s decision to not cover the CT scan. Less than an hour later she called back to say they were able to get it approved! Have to say Dr. David Williams has a great team there! So professional and caring!
Apparently my insurance company does not want to cover this new CT scan that my cardiologist wanted me to have because they don't feel it's necessary prior to mitral valve repair. It's scheduled for just a day and a half from now and now I have to wait for the doctor to try to argue the point as to why it should be covered. A little frustrating and stressful when you get so close. I'm only 2 weeks away today from being admitted to Brigham and Women's Hospital, so it's kinda stressing me out. Anyone else have this experience?
So since I went straight to Brigham and Womens cardiac surgeon Dr. Larry Cohn, I needed to get a referral from them for a cardiologist because I didn't have one. I had my appointment with him yesterday his name is Dr David Williams and he is out of Brigham and Women's Hospital Boston, but his office is closer to me in Foxboro at the Patriots Stadium.He wants to add an additional test. I've been scheduled for a CT scan next week has anyone else come across this? Something to do with the way my hearts pounding at the top of my chest in my throat area and underneath along the bottom of my rib cage. It kind of threw me for a loop because I didn't realize there might be something else wrong. Anyone else have any experience with this? If anyone knows what this might be about, would you let me know please? Thank you, you guys are the best!
Just sitting here thinking how blessed I am to have such wonderful , loving people in my family and for this community here of thoughtful, giving people who share their experiences in the hopes of helping others going through the same. God is good and you all are exceptional! If you are reading this and are new to this forum I encourage you to join in. It is helpful.....and it is healing. Thanks everyone!
I'm just having kind of a down day today. I'm just about 3 weeks out from my surgery date and things are just starting to really sink in. I mean I'm sure I'll be fine, but I just sometimes start thinking the worst. Normally I'm such a upbeat, glass-is-half-full type of person but every once in awhile it just catches up with me and I just start to worry about it. I've been extremely busy at work not only because I'm getting ready to be out for 4 to 6 weeks but fiscal year end was June 30th and we also started a brand new financial system as of July 1st. So it's been really stressful. Good side of that is that it keeps me busy and my mind focused on my work but the bad side is that it's just overwhelming and stressful at times. I told my husband that I'd like to do not only a living will but a regular will as well since I don't have one. Has anyone else prepared in this way? I kind of think knowing it's done will help me feel more secure. Make sense?
So now that the plans are set and lots of research on the subject has been done, I've had time for it to sink in a bit and I honestly don't know how to feel about my upcoming surgery. I'm getting mixed messages. On one hand we're talking HEART surgery after all, but I am often hearing attitudes as if it's no big deal. Not so much here on heart-valve-surgery.com but from friends, neighbors and the cardiologist who first gave me the news. Some say it's really quite common and others say these surgeries are done all the time. So I go from being really emotional and concerned to being really blasé about it. I'm not sure how to feel about it. Anyone else have this flip-flop of emotions?
Surgeon picked, check! Date scheduled, check, now what?
Journal posted on July 22, 2013
Now I guess I do more research, of course! I just ordered Adam's book in paperback as I prefer book in hand to scrolling on a computer screen. Besides, I am on a computer all day at work as it is!
So where to start.
Well there's the scheduling for the time frame that I'll be having the surgery and the recovery period afterward. I spoke to my supervisor today and gave her the dates and the likely estimate of time to expect that I'll be out and we even spoke about the possibility of me working a bit from home, if/when I feel up to it. So, I could use some guidance here from anyone out there who was in a similar situation. How much time should I really expect to be out of work? I know what the research tells me (4-6 weeks), but what about you folks who actually had this same procedure done and who is similar in age and fitness level?
And...I have a cruise scheduled for 5-1/2 weeks post-op. I had figured that it could be a good last week being out of work and relaxing. Now I'm wondering if it's too far out and that I might actually be ready to go back to work before the cruise. See, I had already put in for my vacation time for this and it's been booked for months and is all paid for so I had thought I could roll the cruise into the end of the recovery period and use that vacation time toward it. I'll lose some of the money paid in if I cancel now, so I definitely don't want to do that. Plus, I've been really looking forward to that time away with the family and I thought it would be something to look forward to after the surgery.
The drive up to Boston was a bit nerve-wracking. Not only because of the morning traffic, but honestly I was nervous to meet with Dr. Cohn. After reading all of the information on the net about him and watching a few of the videos Adam has of him, he seemed, well, out of reach. I mean, look him up and see what I mean!
I didn't wait long for my appt. at all and he was one of the most down to earth doctors I have ever met! He was easy to talk to and viola! he and I were on the same page, unlike the aforementioned cardiologist I had met with for my initial consultation.
We agreed, why wait for my heart to start to have damage to it if we know that the valve will need to be repaired. No way around the surgery. It will need to be done and most likely within the next 6 months or so according to Dr. Cohn. So we decided to just go ahead and book the surgery when it's convenient for my family, my work and myself, and not wait for an emergency situation.
Surgery is scheduled for September 24, 2013 with the chief of cardiac surgery, Dr. John G. Byrne as Dr. Cohn is no longer performing the surgery himself. He recommended his colleague and I completely trust him. He did promise my husband that he'd oversee my case though.
It's to be done minimally invasively with a 2-4 inch incision under my left breast to repair the mitral valve with my own tissue and an annuloplasty ring.
What do you mean there's something wrong with my heart?!?
Journal posted on July 22, 2013
When Dr. Trull called me with the echocardiogram results, I was sitting in one of my regular lunch spots here in downtown Providence enjoying a salad (I work at Brown, a local University). I tried to take all of what she said in as she went on explaining what my "condition" was called and what it meant going forward, but my head was reeling and I was having a hard time wrapping it around the fact that I actually had something serious wrong with me. I expected to not hear anything back regarding my results which would have meant I was completely fine. You know, no news is good news. Guess not! So, I jotted a few notes down and proceeded to start my research.
If you knew me, you would know that I research everything! After a few phone calls to my family members explaining as much as I could about MVR (which admittedly was not much), I went on to do a lot more research and found this site.
Since then I had a visit with the cardiologist who read my echo results. I even brought most of the family along. Husband Ron, daughter Lauren, and her partner Renee, who just so happens to be an RN, all came for support and to help me sort through all of this (which I highly recommend). I won't mention the cardiologist's name here as I did not like him at all. He seemed hurried, and said things in contrary to what I had learned doing all that research.
The family and I agreed that a second opinion was in order. So I decided to go to one of the best, Dr. Lawrence Cohn out of Brigham and Women's in nearby Boston.