Charlie posted a note for Emilyrae that says:
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.
Emilyrae posted a note for Emilyrae that says:
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.
Charlie Browne posted a note for Emilyrae that says:
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.
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.
P.S. - I'll post a year after my surgery and I hope to continue for a long time.
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.
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 -- firstname.lastname@example.org
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?
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.
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.
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!
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.
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
You were wondering how others were feeling 3 weeks post-op. my surgery was three weeks tomorrow. I am still on pain medications, still taking it slow, making sure to continue to keep moving, however only slowly. I can go with my husband on some errands, but am pretty much sticking to staying around home. I am playing it better safe than sorry! I haven't had any days that are really bad because I did too much, so I think it's better to take it easier then to do too much and take a step back in recovery. My nurses keep telling me to take it easy and my husband is making sure to watch I don't do too much. It's hard to be patient, but recovery is coming slowly! Hang in there! I'm using this time to catch up on reading and a lot of praying. I can understand it's hard sometimes to think of things going wrong.....I try to pray instead. There are so many things to monitor. My doc says re; arrythmias, etc that the heart takes at least 1 month to stabilize those, so I think it's normal that you are having some rhythmn disturbances! Hang in there! God is soo good!
You know I'm continuing to pray for you. Trust God with this. Believing Him is the easy party; it's the trusting that's a little harder - much harder. Get in the Good Book when you feel feel pvc's, etc and allow God to calm you down. Remember Psalms - we've been there before many years ago. Go back if need be. Love you & trust God to continue taking care of you, MaryAnn
I pray when you receive this you are home and feeling stronger. You are such a fighter, I had no doubt you would come through this with flying colors. I also knew we have a loving God who would take care of you. May you continue to get stronger everyday. God Bless!
Hi emilyrae, I just missed you. I was. admitted today and you're going home tomorrow. Sounds like your perrsistence paid off-....your walking really improved. When you get home you'll have more fun walking.. my son in law is from norfolk...he loves iit there, goes bacck yearly. To visit. Keep up the good work and you're gonna be as good as new and keep in touch. Your journaling has definitely helped me by knowing what too exepect. God bless you. Shirley howertion
God is soooo good! So glad you're on this leg of your journey. Will be praying about the plane ride home & being able to walk ever so often. Will pray for strength because I think you're going to need it tomorrow. At least you have something to look forward to. Call when you get rested up some. Love you, M.A.Hunter
Emilyrae - Glad you are out of hospital and at the Guesthouse. Hope you are able to continue walking a bit more each day and hope all went well today and you are cleared to fly. I'm sure you can't wait to get back into familar surroundings and your own home. We will definitely see you at the airport Saturday. Love, Pam
Emilyrae, Thank you for letting me be a part of this amazing adventure!!! You sure galvanized my local Church and Cursillo. I have already thanked them for their efforts to pray for your surgery and full recovery. Hope to see you next year. We will be attending a USNA 5th Company party in Va Beach in May of next year. I would like to spend a few days in Nags Head to show Rene the place and we also want to meet with a friend in Sandbridge. She was married to Radm Arlington Campbell (Now deceased). He was the Submarine Group Commander when I was in Charleston. She is a wonderful person and very much into Bible study, etc (name is Bonnie).
Thank you, Bill, for calling this evening and updating me on everything. Sounds like you are being a great patient advocate and morale booster to Emilyrae. Both of those roles are so important! Am very glad to hear how well you are progressing, Emilyrae. I know how much you must be looking forward to coming home and being back in your own house again. I hope you'll find that lifter/recliner comfy. How many times do you have to walk a circuit in your home to equal a "lap" out there? Maybe I can help you walk around the neighborhood when you're ready... and it cools down some! Let me know what I can do to help. Deb H.
Whoa! Way to go Emilyrae! 16 laps! I don't know how far that is - it would be a mile at UCLA so I'm sure it's substantial. Keep up the walking and you'll be all mended right quick. It is amazing how quickly the body responds when you give it the proper messages. -- DVB
Thanks for taking the time to sign my guestbook. i'm feeling pretty good. I had my surgery on July 7th at Boston Childrens. It was a great experience considering what I thought. They really treated me like a star with all the doctors and nurses. Those first few days are tough as you would know. I am taking the lazix potassium and aspirin for the moment. I do nap for a little bit. Been out of work since like July 4th. Hopefully getting back soon although maybe too soon. Hope all is well Jbaer I'm on facebook and twitter also
So glad the surgery is over and that your valve could be repaired instead of replaced. Sounds like all is going well even though it's not as FAST as you would like. Be patient! So glad Bill is there to take care of you. Sorry I am so late in responding to your journal. I was at the beach the 14th thru the 17th. My thoughts and prayers have been with you and I will continue the prayers for you and Bill. I love you!
It's tuesday morning again & was going to class which led me to thinking about you & so I read about your progress. We know that with your persistance & faith all will be well. We are praying for your recovery and fast return to Va Beach. Miss you at church. Sunday there was hardly anyone I knew, Joyce actually walked down the aisle with some help.So both of you are protected by Divine Love.
Love Tina & John
I understand some of your experiences with pain, finding an advocate and recording things! The nurses are now asking us what we have recorded in our book as they don't have it in the chart! I am praying for you, hang in there. Trust in the lord, he will direct your paths! I know it's hard to not get anxious about the things we need to do!
Emilyrae, I am so glad to hear you are doing better each day. Our God is so good! I have been on vacation and then when I returned to work last week, I did not get my e-mails. They were hung up in lala land! Received them today, so I got your e-mail on your journal. I will pray for that you get stronger each day and Bill as he takes care of you. God bless! Edna
Hi to all, Thanks for all the updates. We agree with you Bill ; everyone in the hospital needs someone to look after their welfare and care in detail.Thank GOD your there.But the good news is Emilyrae is on the mend.Prayers are still being said for both of you .Hang in there better days are to come. Love Peggy and Emery
Catching up on your journal and guestbook comments to see how you are doing. So, Stacyrae says you're ready to "Sizzle" and be back to your old self. I see you have a reputation of being some tough Lady. I thought about what someone at the UNM Hospital Cardiac Rehab put up where they put fun or motivational sayings on a white board last week. I captured it with my camera so I could share it wtih others. This seems to be an appropriate time to share. It says "One can choose to go back to toward safety or forward toward growth. Growth must me chosen again and again; fear must be overcome again and again." ...A. H. Maslow
That's my momma! "I am woman, hear me ROAR!!!" Needed just a little more than our usual 24 hours for that bottom bounce this time, but now you're ready to "sizzle with zeal and enthusiasm!" We love you!!! Stacyrae and all the boys
Emilyrae, I am glad to see that old fighting spirit back in control. Do those extra breaths and laps and get home to us sooner. We are thankful for the Lord's watchcare over you and continue to pray for a swift recovery. Love you, Cherry
This is the formula for the elixir that helped Emilyrae in 1984. Maybe, this is no longer a good option but it was fine then:
Braised Soy Sauce Beef
1 C water
3 slices of ginger root
1/4C soy sauce
1/4C rice wine
3 points of a star anise
2 pounds of boneless beef chuck cut into 2 inch cubes and pat dry.
1 tablespoon Peanut oil (or oil of choice)
1. Flatten the scallions and ginger root with the flat side of a cleaver and mix in a bowl with the water, soy sauce and rice wine (dry sherry is a good substitute).
2. Heat a wok or heavy skillet over high heat until it is very hot.
3. Add the oil.
4. Add one half the meat and stir fry it for 3 minutes or until it is browned.
5. Stir fry the remaining meat in the same manner, add the browned meat and soy sauce mixture and simmer covered for 1.5 hours or until the meat is tender.
6. Remove and discard the ginger root , star anise and scallions.
7. Reduce the sauce by about a half over high heat to about 3/4 C
8. Serve the beef hot with rice as a main course.
Dear Emilyrae, Just got back from my camping trip to N.H. with my daughters, was so happy to see your surgery had gone well and that things are progressing in the right direction. I admire your strength and all my prayers have been with you while I was out of cell phone service area and no computer. It is wonderful to be able to catch up and I hope each day finds you on the uphill to getting home. Much love, Cindi B
We just praise God for what he did this morning. I'm so glad that he took over after prayers were offered up and got things going in right direction. We'll continue to pray and know I'm here when you need me. Love ya MAH