Julie's Guestbook

Hi Julie. I'm 42 and was a marathon runner right up to my mitral valve repair surgery in November. I was told I should have a very fast recovery. Instead I suffered from some of the same stuff you did, lots of breathing problems, possible pericarditis, high inflammation from blood test, a flare up that gave me AFIB. Nowadays I can't run at all for fear of another inflammation flareup. I get a pain in my upper chest/throat area that seems to come on when my heart rate goes much above resting. Check out my journal for more detail. I was referred to you by Jo Beckett who seems to have similar problems too. Would love to know how you're doing now. Can you still not exercise much? What meds are you still on? I still don't feel I've been properly diagnosed. I keep getting told generic stuff about recoveries taking 6 months to a year. Yet these horrible breathing sensations are not a normal recovery, are they? The only relief I've found so far has been ibuprofen. I was on that colchicine drug for a brief time, then for some reason taken off it. I'm seeing a different doctor now and hoping for better help.

Hi Julie, I am 18months post op (complex mitral valve repair) and following this I too experienced throat tightness, some breathlessness, dizziness etc. the throat tightness comes an goes. The dizziness was due way to low BP a side effect of my BETA blockers and ACE inhibitors - I was on really low doses but did not tolerate them well. When with coupled with Rehab exercise I was just driving them lower and exacerbating the problem. I picked up a BP cuff from Lidl's of all places and tracked my resting BP and heart rate daily on an iPad app. This was really useful when having discussions with my cardiologist and GP and clearly showed the effects of the meds as I weaned off them.

Hi Julie, thanks so much for posting. I have so many questions but won't bombard you all at once. I didn't have that experience with my chest drains although they did take them out quite early. I do remember however having pain and problems with my right lung 3 days post op. This is where I believe the inflammation started, I think it was damaged during the op and I had to have it drained of bloody fluid week 3, this was the beginning if the Dresslers. I keep getting told by the Drs that this is rare and they can't believe it happened to me as I was so fit. Like you, I definitely felt better before surgery. On Facebook are you Julie McGovern Voyzey? Can only see 2 Julie voyzeys and the other lives in the States. There are many Joanne Becketts on Facebook so I would need to send you a message for you to find me. Otherwise, my email is jobeckett1@gmail.com. Would love to ask you more about your treatments, what you do when you get a flare, if you gave been back on steroids after the first time and if you have symptom free periods between flares and for how long. Sorry for all the questions but I feel so excited to have found someone who knows what I am talking about! (Even though I am sorry that we have to go through this). Don't know about you but nobody even suggested this was a possibility before surgery. Best regards

Hi Julie, I should have mentioned that you won't find my story, I found this website quite late after surgery so haven't posted, probably should have. I have mitral valve surgery a repair. I was great immediately after surgery, went home day 4 post op was walking a hour by week 2then developed a pleural effusion by week 3, the start of the inflammation. Week 4 I went into an abnormal fast heart rythm, and just felt generally unwell. Was released from hospital to have the fast rythm return a week later and then The day after the left shoulder pain started, had an echo and there was a small amount of fluid around the pericardium. They put me on ibuprofen and colchine which brought my markers down quickly and stayed down for 3 weeks but then I had another flare as I don't think they had me on enough ibuprofen. Anyway, that is when they started prednisone and have now added back colchicine. I am 49 years of age and from Australia (my husband is English and we have many friends there). Has anyone mentioned the possibility of longer term constrictive pericarditis to you Julie? Would be great to stay I touch. I can send my email address is that is easier or post in here whatever works for you. It is hard to find people who have had to make the journey with pericarditis post surgery. Best, Jo

Hi Julie, thanks so much for taking the time to respond, I don't think it is possible to understand how awful pericarditis is unless you have had it. I am currently on steroids and they have added colchine during the taper down off steroids, so based on what you have said I am on the right treatment. I have started on a plant based diet, essentially vegan which I have read will help reduce inflammation in the body generally and taken six months more off work. I think you are so right about stress. You didn't mention anything about constrictive pericarditis so that is a good thing. Thanks again Julie.

Hi Julie, how did your pericarditis run it's course? I notice you haven't posted for some time but would be so interested to know as if am suffering same 3 months post op. Thanks for any information,

Julie, Are you sure you have pericarditis? You\'ve been on medicine and steroids and nothing has helped. A doctor hasn\'t told me this but I convinced that all of my chest pains are from nerves.

Hi Julie- I saw your note on my guestbook and decided to check out your journal. It sounds as if your diagnosis came as quickly and suprising as mine. I hope you are feeling better now as by the sounds of this you have had quite the ride... Karen

Hi Julie, I have never heard of this so I looked it up at the Mayo Clinic. Google this and go under Mayo Clinic, Maybe this will help. Good luck Hope it gets better. For the long haul Linda H

Julie, when I was having chest and shoulder pains like you are having the doctors first would say that it\'s periocarditis. None of the tests they did showed any inflamation fluid but some doctors would still say it is periocarditis. Other ones would just say that they have no clue what it is because my heart looks, sounds and is functioning great. No doctor has told me this but I think these pains are nerves either growing or healing. The reason I think it is nerves is because when I get the chest pains I also experience the following.... 1. Increased PVC\'s prior to pain episode 2. Chest/back/shoulder pain on the left side. 3. Profuse sweating at night. I will wake up completely soaking wet like I just jumped out of the swimming pool. But I\'m not hot. 4. Increased sensitivity and numbness in my right nipple because the nerves that go to the nipple go between the 4th and 5th rib....The same place where the incision is made. I think these nerve pains are more associated with minimally invasive surgery than the full open sternum. But again these are just my thoughts. But sometimes you can feel what\'s going on with your body better than a doctor can guess what\'s going on. I just stopped going to the doctor about it. One because they say nothing is wrong, and two because I can\'t costs me $600 everytime I go there.