Emilyrae's Guestbook

Hi Emilyrae - Had a couple of your notes on the Internet. I'm glad you are still going strong. I thought I'd let you know that I am still going too. Age is catching up wih me - at 83 life does not have as much energy as I would like, but I try to make the most of each day. Have a very happy Holiday season ..... Charlie Browne - Melbourne Australia

Hello again Emilyrae. Accidentaly found the old Heart Journal when looking through old files the other day, & I noted a 2012 message from you. I thought I might ask the question as to whether you were still with us, as we all have a timeline that we must adhere too. I have been pretty well since my surgery in October 2010. I have my good Days & bad Days like all Heart Patients, mainly caused by the aging process & the long term effects of drug use. Anyway I am glad to see you with a healthy report & a positive attitude towards your individual situation. Keep writing your blog & spreading the word to others, & mostly enjoy every day as it unfolds. At 78 I learn something new every day.

Charlie, of my, you remembered - you really are my angel - I do believe in angels. How are you doing? I have not been on here much anymore, shame on me, but life is so busy with 11 grandchild and 6 of them local and in swimming, travel ball, track little league ball, baseball camps and a basketball camp this week. so life is good. I did have a bad Dec-Feb though - some of my old symptoms returned fatique 2 naps a day, after doing my own research again, I went to pulmonary dr and RHC showed Pulmonary Atrial Hypertension - "Dr. Google" was very depressing however, rare, no cure, fatal - however GOD blessed me again and I was a responder to CCB - Norvasc which only 1% of the PAH patients are. I understand from my doctor that CCB usually wear off eventually - maybe 2/3 years - but right now I am feeling much like my old self - I have not been back to CCF yet as the local dr seems to know what he is doing but I think I will make a trip in the fall to see what they have up their sleeve for PH patients. When I think of everything I have had done to my heart - it has got to be special and blessed You have made my day and I consider this note from you another "God wink" that I am going to be ok. Now how are you doing - see you never know when you can be a blessing (God wink) for someone - we need to just follow our heart.

July 12 - Is that an Anniversary date ? For me - it is now nearly 4 Years - I take each day as it comes - Life is to be lived.. Charlie - Melbourne - Australia

Charlie, of yes, my \"Charlie Angel\" - it meant so much and I will always remember it being a turning point in finding peace about it. Bless you Charlie. Lee and Karen, please feel free to ask me any questions and I will be glad to answer as good as I can. We are all in this boat together and whatever help we can be to one another - well I know what it means - Charlie (above) especially was a blessing.

Hi Emilyrae, Thanks for posting one year after your surgery. It\'s very encouraging to see you richly living your life and being there for your family. From reading your journey and reading Karen\'s post below, I\'m wondering how I\'ll be after a year. I have severe mitral valve regurgitation with symptoms. My surgery date is Aug 13, 2012. Warm Regards, Lee Castro P.S. - I\'ll post a year after my surgery and I hope to continue for a long time.

Hi Emily- It\'s nice to hear from patients that have been in recovery for sometime. I had mitral valve repair on 5/25. I am still trying to rebuild my strength as going into this I had pneumonia and severe congestive heart failure. I go to cardiac rehab a couple of days a week and am back to work. The surgeon told me where I am a year out, next May, will be where I will be for the rest of my life. I think I need to ask more questions after reading your stats so I can understand more. Thanks- Karen Campo ps cute grandkids and pups

Hi Emilyrae - Great to know of your continued improvement with your Heart problems.., & glad my message prior to your surgery was of some comfort to you. I am doing Ok myself with similar problem. I had valve repair October 2010..... Your Australian friend Charlie -- crb636@gmail.com

Happy Thanksgiving Emilyrae! Sorry to take so long in getting back to you. I went to my local cardiologist recently after I got the Dr. notes from CC. My Dr. looked everything over and then went back and looked at my previous echoes. It was like a light went on....because I had a previous mitral valve repair in \'98 with a ring, Dr. M had to remove that old ring. Dr. M. told me he had replaced it with a smaller ring (I would guess because of what he had to work with after removing old scar tissue). My echo now shows some stenosis (which I never had) - a narrowing which has occured after my heart healed and formed new scar tissue. My Cardio said some people are very sensitive to pressure changes and this slight narrowing would/could cause a pressure change ...as in pulmonary hypertension. After starting the Lasix after I got home from CC, I almost passed out - dizziness, cold sweat, headache, nausea, very low heart rate and low blood pressure . The dosage was way too much for me (very sensitive to Lasix it seems) so my dosage has been reduced. My local Cardio is going to do a stress echo on 12/23 and will see what the pulmonary pressure is doing. I have noticed a lot of irregular beats since the cath and sometimes maybe a short run of afib. I was taken off warfarin more than a year ago so I hope things settle down so I don\'t have to go back on warfarin. Dr. M had done a mini maze procedure during my mitral valve repair so I haven\'t had any funny stuff like this for 1.5 years. CC had said if the Lasix wasn\'t doing the job another treatment would need to used. I am praying that the tricuspid leak doesn\'t get any worse from the pulmonary hypertension and that the pulmonary hypertension will be controlled with the Lasix. I need to get back to exercising - things have been so hectic and I have been so busy, I have neglected a continual daily routine - shame on me. It still comes down to every heart beat is in the Lord\'s hands and I am learning to rest in that... I hope you are doing well. Do you feel fully recovered? Blessings, Carla

Deb, I did not experience any of these symptoms once I was home. I was not however on amiodorone, I was on metropolol and will continue to be on it - my dr says it is a good overall drug for the heart - I am off the blood thinners - I continue to be tired and don\'t know if it is the metropotol (50 mg twice a day) - in cardiac rehab and that going good - but wish I was not quite as tired - old energy not back yet - but I will give it time then will start looking. VCould be my pulmonary presssure not down yet, but I can\'t get any help or answers on here and it anyone know what their pulmonary pressure is and if it has decreased.

Hi Emilyrae, Deb Ziegler here.....you signed my guest book a few weeks back, and I want to say thanks for all the support. I read your journal after your surgery, and we had very similar experiences in the hospital with A-fib and irregular heart rates. Did you experience any of that after you got home and got off the medicines? I\'m a little concerned that once I\'m off the amiodorone and metropolol that the irregular heart beats will come back. Just wondering if all went well for you as you recovered. Sounds like you are doing well now, and I\'m really happy for you. God Bless and Godspeed.

Hi Emilyrae, I am going back to CCF to get checked out and have a heart cath. I have an appointment for October 19th, then a cath on October 20. Who did you see when you went back recently. Anxious to get some answers and feel most comfortable at CCF. Hope you are healing well! Carla

Emilyrae, I too was running around without a bra for the longest time, but actually it caused me some sternum pain. I think you love the Ahhhhh Bra. As for the pulmonary pressure. You\'re right. I keep all my records and I\'m sure it is on my operative notes. Unfortunately, I am reluctant to read it again as it upsets me terribly and I always find another thing to worry about. I am not normally a person to put things out of my mind, but in my case (right now) it is best if I can manage to do this. I think all of us compulsive types focus on every little thing and worry ourselves crazy. If the docs at CCF thought there was anything to worry about I am sure they would have explained it to you. I have been told that it can take quite a while for the heart to go back to normal. So try to be patient and not fixate on this issue. Easy for me to say. smile. At least your valve is no longer leaking and things won\'t get worse. Hold onto that thought. Ruth Howell

Just checking Emilyrae to see if you went to CCF yet. The result of my 2nd echo was still the same as the first. That VQ scan they did was to see if there were any blot clots in the lungs which was negative. PTL I am hoping you might get some insight on pulmonary hypertension from CCF. I am not at ease about having a heart cath locally but it may be what I will have to do. My cardiologist wanted me to have it by the end of September. Looking forward to any tidbits I can glean from others...and always trusting the sovereign Lord with this heart He made. I hope you are continuing to recover without any problems. Blessings! Carla

Hi Emilyrae, your journal title of pulmonary hypertension caught my attention. My mitral valve repair was 4-15-10 at CCF with Dr. M. He also did a mini maze procedure. It was the 2nd mitral valve repair for me - the 1st was Feb. of 98 at CCF. I had an echo done last August, about 4 months after my repair and my pulmonary pressure was 38. August 1st of this year I had another echo, this time it was 53. I have also noticed shortness of breath when climbing stairs and also when trying to carry anything. My local cardiologist is bewildered and says it just doesn\'t make sense that it should increase after surgery. He re-did the echo and also did a VQ scan and chest x-ray to check for blood clots and now wants to do a heart cath. I really don \'t want to have the cath done locally but Cleveland is a long drive for a cath. :( I keep wondering and researching to see if something from the surgery can cause the problem. Please let me know what you find out at your appt. Your surgery is so recent I hope that everything resolves itself soon. Praying for good results for you! Carla (S. FL)

Hi Emilyrae, I am into my 7th week after surgery, and I am having a lot of stiffness and pain in my incision. I had to stop therapy last week as I ended up in the hospital with a problem in the fluid I have developed around my heart. That has now slowed my recovery yet again. I am home now and feeling better, but still have to have a visit with my cardiologist before I can go back to therapy. He is 2 hours away, so its not a quick drive. I think they pain and stiffness is normal, but it sure is a nuisance. I still have to take tylenol every 4 hours to get the pain to go away. Good luck with your recovery, just wanted to let you know you are not alone. Inge Colby

Hi, just got back from a week at the beach, shortened from one week to 5 days because of Irene - but it was nice just the same. Have to catch up on your progress etc., hope all is well, sounds like you still are having moments, hope everything goes in a positive direction. I will correspond again soon. Happy Labor \"Day\" Weekend to you and Bill. fondly, Cindi

Hi Emilyrae, Haven\'t much been by HVJ for a while. Glad you are doing well. I remembered you were gonna a run event of some sort with one or more of your kids...so just wanted to remind you in case you didn\'t commit by signing up...there\'s ofen what they call run/walk fun runs, depending what you are up to. I can tell you I\'m struggling with hills and distance, but won\'t quit. Since the valve job on Mar 11th have now done 3 sprint tri\'s, three 5 K runs and a coulpe weeks ago a 1/2 Marathon (there was some walking)...and the exciting one coming up is in nearly two weeks I\'ll probably embarrass my self when my 4 daughters come to do a 1/2 Marathon with me...wow...now, to do a run with all the kids is gonna be exciting....you gotta do your\'s, too. Barry on the Mtn in NM

I just got back from cardiologist today and am 7 weeks post op tomorrow. he pulled me from rehab for another two weeks, then said once in rehab, will be only allowed on the walking track, no treadmill or bike for the first two weeks. He said those of us who have had multiple surgery are a couple weeks behind. He also said to not work for 3-4 months, but this is NORMAL, so don\'t be discouraged and if you have to pull out of rehab for a couple weeks, I say go for it if it is causing you shortness of breath and chest pain. Hang in there, your body has been through a lot!

I just started rehab as well and am experiencing a little shortness of breath and chest tightness. have had absolutely no chestpain other than my sternum or shortness of breath since my surgery...so am concerned, however my doc says the pain is probably from chest wall pain...showing my heart is still healing and especially since I\'ve had more than one surgery, he said pain starting around the 6 week mark is somewhat normal. Apprently it\'s just the heart adjusting...wondering if that\'s what\'s happening with you..I do know my cardiologist said that people with multiple heart surgeries shouldn\'t start rehab as soon as everyone else so maybe you are getting pushed a little hard? It seems like the \'norm\" doesn\'t apply to those of us with more than one heart surgery and we just need to listen to our body. I\'ll be thinkng/praying for you. God is our healer :) roxanne dropko fellow hvj

Hi Emilyrae, It\'s been 4 months since my surgery - which was very complicated. I am now in cardiac rehab. and have been crying like a baby because afterwards I am so sore, achy and tired. I have pain down my sternum, behind my collar bone, on the right side of my chest and in my upper back. My surgeon and cardiologist at Cleveland Clinic say this is normal. I do some stretching several times a day at home, take a hot shower and use a heating pad for a while at night - which seems to help a little. Good luck and feel better. Ruth Howell

Hello there, I am also 3 weeks after surgery, and I can tell you that every morning I wake up with a very stiff chest. I think that is very normal and will probably take quite some time to go away. I am not really concerned about it, as it gets better when I have been up for a while. I was also having very irregular and fast heart beats, but my local doctor adjusted one of my heart medications and it seems to have gotten much better. Hang in there, this all takes time. I will be starting cardiac rehab in about a week and I think that will make all the difference. Sincerely Inge Colby.

Haven\'t been home, Emilyrae, couldn\'t check my computer. I am happy to hear you are home with \"your favorite nurse\". I have you in my prayers daily, and hope you continue to heal, everybody has different rates to their recovery. You will do wonderfully I think because you have such a great support group. With love, Cindi

Hi Emilyrae....Glad to see recovery is progressing well for you. I haven\'t been visiting the HVJ so much, like others, as time gets further and further past the valve job, but as my head was being intimidated by long runs that are part of our training and I\'m thinking about the Half Marathon a week from Sunday, fully intimidated, but not afraid to go for it...does that make sense??...I thought about you and hope you don\'t forget the promise you made to your kid(s) about doing an event with them. Keep moving and walking as you can...and I suppose 4 to 6 wks out, or so, be sure to get into a (good/proactive)cardiac rehab program. keep moving, walking and doing whatever activity you can tolerate...and nail down the event you will do with your kid(s), and get registered for it so you can make your plan for it and have it as a goal. ....Barry on the mtn in NM