Lin's Journal

I will be at week 8 on Friday, July 14, 2017. I get badly winded very easy and there has been no improvement in 10 days or so. 13 steps to my bedroom and I am gasping for air with left chest discomfort, maybe some pericarditis. I was getting better and then it stalled. Has anyone else gone through this. I have a call in to my Intervention Cardiologist for some advice.

I will be at week 8 on Friday, July 14, 2017. I get badly winded very easy and there has been no improvement in 10 days or so. 13 steps to my bedroom and I am gasping for air with left chest discomfort, maybe some pericarditis. I was getting better and then it stalled. Has anyone else gone through this. I have a call in to my Intervention Cardiologist for some advice.

I believe things are improving but still some concerns. The severe pain I experienced with Pericarditis is gone, but a deep breath still causes heart pain. It is nothing compared to the heart attack like pain from before, but the pain does not seem to want to completely go away. I am not sure if this is a cause for concern or not. I am hoping it will just take more time to heal. I have stopped Colchisine and Ibuprofen as ordered by my surgeons office. I have a pretty acute pain just under my left shoulder blade and deep in, which hurts especially at night when I roll over in bed. Very painful and the cause of waking up often. I'm not sure why it hurts or if it is surgery related, but it sucks lol. Reaching, twisting or stretching can set it off. Other than that I feel pretty darn good when sitting not doing anything so that is great. But, I still struggle with catching my breath with any type of exertion. For instance, when I climb the 13 steps to my bedroom too fast, I am sitting on the end of my bed struggling to catch my breath. In fact during the struggle my heart hurts, and things seem to burn in there a little until I can recover. If my pace quickens walking 1.3 miles, my breath goes, and I have to stop and rest. This does not seemed to have improved in the last 2 weeks. If anything it seems worse. It has me a bit scared, but I tell myself that it is only week 7, and maybe, this problem will go away one day, like the severe pain went away one day. If anyone experiences this please fill me in!!! If I have seen no improvement by next week I am calling the surgeon. Thank you, Lin

Good News: My surgeon did an awesome job. No leak detected anymore. Sternum healing perfectly. Not so good news: He mentioned the word rest and 3 months a lot yesterday. Also, I still can not lift more than 10 pounds and use my arms in any torque like manner. For instance, no starting a lawn mower, no yard work, really no nothing. I'm pretty useless. Still a bunch of AFIB which he thinks will taper off as the atrium comes back down to normal size after years of this leak going on. I'm still having issues catching my breath which is basically because of set backs. I had muskuloskeletal intense pain on left side that I went from around June15th and has tapered off the last few days.. I could not walk the entire week, which set back endurance and fatigue level. It was rest, pain, and be still for 10 days. No sleep at all. Or I slept sitting in my bed with my head against my dresser for a few minutes at a time. The other MAJOR issue is the severe Pericarditus. He said 1 in 100 get this after surgery. In my case it is inflammation in the pericardium around my heart. Since I have had it once back in February he thought I might be prone. He said if it were an infection, I would be hospitalized and have a very high fever, so thank God it's not that. This can be debilitating heart attack like pain. Twist wrong from, being startled, and deep breath and bang, it's like getting stabbed and you are down for the count. It's solved by simple medications colchisine and ibuprofin and....wait for it...... rest, rest, rest. I never thought I'd get sick of rest. I think the turning point is just ahead, then it's rest, rest, rest. My problem will be wanting to become active to quick. I have guards Nancy (wife) and Emily daughter) telling me what not to do every day. They will keep me from doing too much. I did sleep six uninterrupted hours last night which is great. Today is day 40, Friday is 6 weeks and I feel today I will be turning a corner very soon.

I was hoping for a couple good sleeps but I started getting jabs of heart pain around 12:30 AM. I checked my pulse and it was only 45. I had been running on the high side. I did take a nice walk this afternoon and got the heart rate to 125. It slowly cane down to 62 and irregular by midnight. Any ideas anyone?

Since my June 23rd post, the severe pain through collar bone shoulder and neck has tapered down. No pain killers needed since Saturday the 24th. I can take a deep breath with a certain amount of discomfort and ache, but definitely not the severe shooting pain. I was able to sleep through the night for the first time last night (25th) and woke up with discomfort but not severe pain. It was wonderful. I took a 25 minute 1.2 mile walk today I felt so great. I was pretty worn down after that and had chest ache but nothing like what I had been going through. I still seem behind on catching my breath but I'm sure that will come. I have my first follow-up in Boston with my surgeon tomorrow, Tuesday, June 25th. I had hope to feel well enough to return to work by next week, but I'm no where near being able to do this. Looking forward to tomorrow,

I am 5 weeks today. Still having issues with moderate to severe pain in chest, collarbone area, shoulder and neck. It has not gotten any better with colchicine and Ibuprofin treatment. I thought it was swelling of pericardial sack, but now I'm not so sure. This started a week ago yesterday on Thursday, June 15th. See post below. Today almost seemed like I went backwards with ability to catch my breath. I am taking pain killers twice a day to deal with pain. I have an appointment this Tuesday, June 27. At this point I am stopping walking and laying low. I hope they figure this out and come up with a plan. Where I once was real positive, I am not so much anymore. Optimism is waning! Lin

After speaking by phone to my Cardiologist they have put me on cochicine twice a day. Sunday and Monday I have had slightly less pain in my shoulder and neck. I still can't take a deep breath without extreme pain. I guess I will give the colchicine a chance to work. But I hope they are right.

I am self diagnosing here but I think I have inflamed pericardia. A touch of pericarditus. I had a bout with this after a February 2017 Ablation. I have most of the symptoms listed below. The following is from the WEB. "What are the symptoms of pericarditis? The following are the most common signs of pericarditis. However, each person may experience symptoms differently. Symptoms may include: Chest pain that: Can especially be felt behind the breastbone, and sometimes beneath the clavicle (collarbone), neck, and left shoulder. Is a sharp, piercing pain over the center or left side of the chest that gets worse if the person takes a deep breath and usually gets better if the person sits up or leans forward. Feels a lot like a heart attack. Fever Weakness and tiredness Coughing Trouble breathing Pain when swallowing Palpitations (irregular heartbeats) The symptoms of pericarditis may resemble other conditions or medical problems. See a health care provider for a diagnosis." The last time they had me take Cochisine ( a gout medication), and high doses of Ibuprofin. The warfarin nurse said to a avoid ibuprofen, but this pain is too much. Lin

I need advice. I am now 4 weeks post surgery. I am still waking up abruptly screaming from left chest pain every morning ( 4 to 6 AM). I scream my wife's name I guess and she panics until I get into a position that doesn't hurt. Today I developed severe waves of pain that now goes through my shoulder and straight up my neck near my collar bone. It almost seems tied in to integestion and acid reflux episodes. Is this possible? But as I sit here in pain at 2:28 AM on Saturday, my neck throbs. I worry about a clot in my caratid artery. I still have left chest pain that shoots to my back behind my shoulder blade feeling like a badly pulled muscle in my back. I thought in 4 to 6 weeks I'd be returning to normal. I have been walking but other than that taking it easy. What stinks is I have only 50 hours of paid time left. I was hoping to start work by July 3rd, but I am a Food Service Manager at a hospital. Very hands on and busy. I can't possibly go back feeling like this. All I get told is, yes, this could happen, and everyone heals at their own pace. Man am I getting sick of hearing that. Help!! Lin

I will be three weeks post op on Friday, Jun 9, 2017. Th AFIB I was having has mostly gone away, although I still have palpitations from time to time. I am looking for any advice on reducing my sternum and chest related pain. I am a side to side sleeper. I am waking up four or five times during a four to five hour sleep, screaming in pain, as I have used my arms to roll myself over. Consequently, I get up for the day at 4 or 5 AM in 6 to 7 range of pain, and get started with a 5 mg. oxycodone. I feel like I'm setting myself back and I'm afraid to go to bed. Does anyone have advice on how to keep yourself from moving all night and hurting yourself? Thank you.

I apologize for not checking in. I had Open Heart surgery on Friday, May 19,2017 and Mass General Hospital in Boston. Dr. Melnitchouk put in a physio ring, repaired 5 "chords" to to the Mitral Valve and "amputated" and appendage. He also performed another Ablation. By all accounts they told us things went great. I was discharged on Wednesday, May 24th. The very next day, Thursday, May 25th, my heart was racing at 140's to 150's. Also it was irregular. Metropolol was increased. By Monday, May 28th, the heart rate came down to the 80's. This was short lived. As of today, Thursday, June 1st, I had a debilitating AFIB attack and as of now 12:06 AM I am still in AFIB and in the 120's for heart rate. I new this was a possibility, yet it is still very disheartening. Can someone speak to whether the AFIB and increased heart rates will ever stop?

Hello. I am 59 years old, 60 in October. Two years ago I was told I had a heart murmur but not to worry about it. So I didn't. At pre surgery for a knee replacement in September of 2016, they noticed it again. After an Echo-cardiogram, they decided that it was not a bad enough leak to postpone the surgery, but they kept me in a cardio unit. Well in October of 2017 I had a scare. I almost passed out walking to my car, and my heart began racing and beating irregularly. To make a long story short, it turned out to be a very bad AFIB attack. These attacks kept coming an would last from 1 hour to up to 24 hours and they would really incapacitate me at times. Wearing a Zio Patch for two weeks determined that I was going into AIB all the time every day. In the middle of February I got a Cardiac Ablation done, but right before I went in, they asked me if they could do a Transesophageal Echocardiogram (TEE) to get a better look at the valve leak. I said sure. That evening the Dr. came up and showed us the leak and said that it was a very severe Mitral Valve leak, much worse than anticipated. Because of the nature of the blood flow it was hard to determine that this leak was as bad as it was. Three different cardiologists told me not to worry about it. I had all the Cardiac stuff done at my local hospital but after this discovery I have been going to Massachusetts General Hospital in Boston. I am scheduled for Open Heart to repair or possibly replaced Mitral Valve, although my surgeon is fairly sure it can be repaired. Surgery date is Wednesday, May 17, 2017. If he determines he can not repair it once inside my chest, I have chosen to go with a Pig valve vs. a mechanical valve. The waiting has been the worst part. From discovery until surgery will have been 3 months. I have been very symptomatic with not being able to catch my breath or exert myself. Looking back, I had trouble catching my breath for a year anyway, but I chalked it up to being out of shape, as my knee was so bad I could not workout effectively. January through March my symptoms became real bad real fast. Now, I get out of breath getting dressed some mornings. I need a rest after climbing steps to my bedroom. I also had a bout of pericarditis to go along with everything else, all the while trying to continue to work. Just getting through some days has been very tough as I am a Food service Manager in my local hospital. The job requires being on your feet for 7 or 8 hours a day and much exertion. After first reading about and u tubing the surgery and recovery, I was very anxious and scared. At this point, I just want to get this done and over with, although I still do have a high level of anxiety as the date gets loser. Reading other peoples positive recoveries is encouraging and calming. I have not been myself for 7 months now. I am looking forward to being normal again.