John O'Neill posted a note for Jim that says:
Hi Jim
After an intense checkup at Mayo they have determined I have sleep apnea and feel that was the cause of the amerosis faugax. After two weeks on the c-pap machine I finally slept eight hours non stop. It has been tough getting used to it. Some nights I had to take it off after two to four hours. If I start sleeping all night long this will be fantastic. I am also hoping the ulcer may of been from the ameoderone and other nasty drugs to stop the a-fib right after surgery. I guess I am going to stay on the baby aspirin and hope no ulcers come back.
My sons father in law was told after his heart surgery that the snakes he sees are the begining of macular degeneration? I have not seen these. I ran the race last week end that I keeled over on 5 years ago. It was a 28:40 5k on an icy highway. I am looking foreword to running Virginia beach rock and roll half marathon with the other HVJ members in August.
John O'Neill posted a note for Jim that says:
Hi Jim
I brought up your journal after I searched amaurosis fugax. I see you went through your valve replacement during my harvest time when I don't get much web time.
In January of 2009 I collapsed after a 5k race at the age of 58. I had started running ten years earlier to lose 100 lbs. I am only three hours away from the Mayo Clinic so I went there to be diagnosed with a BAV 5.3cm aneurysm and needed a bypass. I got a sorin mechanical valve on April 27,2009,and am also on cumiden. I ran my first marathon thirteen months later(Grandmas in Duluth MN). I also got my own coagucheck machine and maintaining my INR in the proper range has worked well while allowing me to eat my green leafy vegetables. Life has been good up until the last four months, when I experienced amerosis fugax,once in the left and four months later in the right eye. They have done all of the tests both times with absolutely no reason for it? I am now going to have a nuclear stress test in a week or so. I have restarted the baby aspirin after discontinuing it 6 months after surgery when we discovered an ulcer in the colon. I was wondering if you have had any more episodes? I am now swimming 6.75 miles,running 16 miles and riding bike 40 miles a week.
Jim Davis John,
Thanks be to God I have not had any more episodes of the amaurosis since December of 2011. I will occasionally get what I refer to as "snakes" in my ... Read more
Jim Davis John,
Thanks be to God I have not had any more episodes of the amaurosis since December of 2011. I will occasionally get what I refer to as "snakes" in my visual fields. These are basically zig zag lines that usually start in the center of my visual field and then progress outward. They are not total monocular blindness like the amaurosis. However, even this has been less and less frequent as time goes by. What made my amaurosis go away was adding an 81 mg aspirin to my regimen along with the coumadin. I also monitor my INR weekly and keep between 2.5 and 3.0. The snakes are physiologically the same process, just on a smaller scale. And as I said this has become less and less frequent as time goes along. Temporally, I would suspect that your amaurosis is related to your discontinuation of the aspirin. That's the doctor in me as well as the patient that was essentially cured by the 81 mg aspirin. I would discuss with your doctor at home.
Jim D
On June 21, 2012...
Just thought I would check in and see how you have been doing. I can't believe it's almost been a year. I have been great, and hope that all has been well for you and your family.
Hi Jim--it's great to hear you are doing well. I'm Jim Smith's wife (he's scheduled for surgery March 13--we're leaving Saturday for New York.
Thanks so much for letting us know about St. John of God--it's good to know heart patients have a patron--I will definitely be asking for his intercession!
Hi Jim, I'm glad you kept your posts
Going as I wouldn't have found you. I'm scheduled for mitral valve replacement at CC 3/15. ( I live in Maine). Also planning 2 weeks away from home.
I read your journals and am feeling many of
The same things you went through. You mentioned your Saint was St. Jude. Love it! I will check out mine. But, this is intersting: I subscribe to The Daily Word- via my phone. I looked up my "word" and faith message on 3/15. Wasn't I pleased to see SUCCESS. God is walking with us even when we're not so sure. (as I've
Had many not-so-sure moments lately)
In short, thank you for posting and God Bless you. Stephanie Cole
Jim
thanks for responding to my e-mail.
I had open heart surgery 3 months ago and Iam getting ready to go back to work, I feel good but I get very tired after using the stairs and sometime I have palpitations and my BP is a little high. I don't know if I should ask for more time or if this is a normal feeling.
Jim Davis Marina,
I was off of work for six weeks. I was fortunate not to have to take disability. I had enough accrued sick time to take my six weeks and then get back to work.
Jim
On January 19, 2012...
Jim
That is wonderful news.
We all could not have made it this far without our support of loved ones.
GOD BLESS
JOHN MADONNA
LAS VEGAS NV
Jim, thanks so much for sharing. You are truly blessed. I have heard many people say how all of this changes you, with a different focus on life, etc. At this point, since I am still waiting for my Feb 2 surgery, I only have an inkling of what that must be like. But I suspect I too will changed in more ways than just having my heart fixed. Your post was great! All the best, - Mitch Friedman
Dang it Jim!!!! You made me cry...you sentimental ole fool!
I lost my husband Eddie to prostate cancer 2 years ago, he was only 57. The fact that I will not have him here to go through my surgery with me is, I think, the hardest part of this. I have known for years that it would eventually be time to get fixed and I just prayed that it would just let me take care of him.
You are so fortunate to have your wife and she is one lucky lady to have a husband who is telling at least everyone on HVJ how much she is loved and appreciated.
I think maybe this surgery experience is like none other. I used to think what people refer to as "bypass" surgery for blockages was scarey...but I think this valve stuff is scarrier! Maybe it makes us more sensitive to the things and people that really matter. Don't sweat the small stuff takes on a whole new meaning.
Anyway...just wanted to let you know how sweet your post was. I still have to wait until March 13th for my valve replacement and maybe aorta repair. I will go from SC to your great state of Ohio to the Cleveland Clinic, so think about me and if you pray, please send one up for me.
Jim Davis Linda,
I will be thinking of you and praying for you. I do not know how anyone gets through this with little faith. Take care and God Bless you on your journey.
Jim
On December 17, 2011...
Jim, just checking in to see how you are doing. I hope the vision issues are getting better. I was so happy to read that you are feeling well and strong. Continued blessings sent your way as you recover.
Just checking in brother. I am sorry you are having some vision glitches. I am glad you can sneeze again, I too loved it the first time I could sneeze without my chest feeling like it would blow apart lol. I have grown so accustom to my valves subtle ticking that seems strange to me if I don't hear it.
All in all, it's a wonderful life my friend (pardon the Christmas pun lol)
Glad your doing well brother. I think the vision disturbances we experience we have are optical migraines. I also get these episodes a couple times a month. Monday I am finally going to see my eye doctor. I will keep you posted on any findings. Keep me posted on your progress as well. Keep the faith!
Hi Jim, Glad you're doing so well. I have had the same type of visual disturbances on numerous occasions. I have also read that quite a few other people have also had them. Mine also lasted a few seconds - like 10 seconds then completely disappeared. No numbness or tingling. At first they happened 3-4 times a month, then less frequently. Recently (after 7 months) I rarely get them. My CCF cardiologist said he often sees patients with a history of migraine start getting migraine and/or migraine syndrome after heart surgery. I do have a history of migraines and have had one since my surgery. Hope this helps. Ruth Howell
I am 12 weeks out this week from AVR and Root replacement, sounds like I got a similar St.Judes value as you. Since having the op I have had similar visual disurbances which as you mention move with the eye, INR in range and no other symtoms to point ti migraine etc. would be very intrested to hear of any possible causes.
My father, who had bypas surgery about 7 years ago still has those "white lights" pass through his eyes. I personally have moments of dizziness or lack of balance for a second....I eat the same foods all the time and my INR fluctuates from 3.3 to yesterday 1.9......it is frustrating..
HAPPY THANKSGIVING
JOHN MADONNA
Hi Jim,
Early in 2009, I began experiencing temporary "episodes" of vision impairment (blindness) in my right eye. This was shortly after a doubling of my workload and work related stresses. They were short (only a few seconds) at first but increased to close to 45 minutes on the last one. To make a long story short, a clinic doctor determined I had high blood pressure and suspected something called Amaurosis Fugax (google it) and gave me a referral for a Doppler ultrasound on my carotid arteries. They were all clear (no blockages) and my episodes of transient monocular blindness went away with high blood pressure medication (micardis). She then referred me to a cardiologist who said they were probably caused by some other blockage or clot (no follow up). I already knew I had a bicuspid aortic valve since birth. A year later (April 27th, 2010) I had a heart attack and a year after that (May 10th, 2011) the Bentall procedure and AVR with a tissue (horse) valve. In hindsight, I should have pushed my cardiologist to find out what caused those incidents of temporary blindness and not let him shrug them off as some other blockage. Push the issue with your medical professionals until you are satisfied with their diagnosis and treatment... Eric B.
Hi Jim. I have had the same problem with my eyes. However, it has gone away for the most part. The only problem I have now is a battle with gout. I have had four occurrences since my surgery. Glad to hear you are doing well. Jon Farmer
Hi Jim,
You are doing so well. I can't match your recovery rate. Well done! We do share the same very humbling experience of being given a new chance at life. It really is quite amazing. Best wishes and Happy Birthday
regards
Rosemary Sutherland
Hi Dr.Jim,You will have ALOT!!! TO BE THANKFUL FOR ON T.G.DAY.You really feel differently after going through what we have(mine 9 years ago).Blessed holidays to you and your family.ENJOY EACH OTHER!!!! Keep tickin.....
That is fantastic....I am now going on 3 months and two weeks.....I plan on going back to work next week....We get a second chance at life now we have to do something better with our opportunity...JOHN MADONNA
Don't fall in the work trap!!!! I started slowly back to work four weeks post op, kept exercising like crazy and before I knew it I was back to 10-11 hour days and exercise went bye bye.
40 is one of those milestone birthdays. It is good to see that you are continuing to progress. maybe when people "go silent" it is a sign that they are fully reinvolved in their original lives. This is good news in a way.
I also wander if I'll do the same at some point, probably. But this journaling has been a great help to me.
Take care Doc.If you get tired,rest awhile.Then go back to what you were doing.Everyday,gets better and better.Now you understand what we were saying.....WE ARE ALL VERY THANKFUL TO GOD AND FAMILY.Because you feel stronger now,you don't think back on the down times.Keep tickin and Happy Birthday!!!!! I say my surgery anniversary is my 2nd Birthday.
Wow, Jim, your progress is fantastic. I had my ECHO last week, operation on valve a success but heart weaker than expected. I am going to see my cardiologist Nov 22, hopefully he will clear me to be able to work at that time. I know the feeling about the apprehension of returning to work.
It is amazing how we go from diagnosis, to surgery, to ICU the initial recovery....IT BLOWS MY MIND WHAT HAS OCCURRED IN MY LIFE OVER THE PAST 5 MONTHS.....GOD BLESS YOU......JOHN MADONNA
I am really glad to know that you are doing better every day. We all need to know that it doesn't matter where ever we are on this train, we will all reach the station at the other end togrther. All my best to you and your family.
P.S. Thank you so much for signing my guestbook too.
Hi Dr. Davis, So glad to see you great progress. You remain in my daily prayers. Myself and the rest of " Your ICU Crew" @ Fort Thomas was so thrilled to see you in person to know you are OK. Please let us know when you are going to be back with us so we can welcome your return with the class you deserve. God bless you ! Sandy Boguszewski
My prayers have been with you. Seems like you have had a strong speedy recovery. I walk about a mile a day. Its been slightly over two months since my surgery. I still have incision soreness, especially for the sneezes that always come in threees! I can hear my "ticking" constantly, especially when I spend some quiet time , it seems louder. My second day after surgery my Doctor told me as long as you hear the ticking..you are alive... Sounds like you are doing great
GOD BLESS
JOHN MADONNA
I have been thinking of you often these past 4 weeks. Been praying daily for the success of the procedure and a smooth recovery. I understand through Dr. Flora you had a couple of post-op challenges but in reading your most recent postings, see you are hurdling those challenges. We miss you and look forward to your return.
Hi Dr. Davis, I am so happy you are starting to feel better and recovering. We miss you here in Medical Affairs at St. E. You have a beautiful family. Get well and we will see you soon. God Bless Crystal
PS--I cannot even walk 5 miles a day much less run that....so you are doing much better than I am as a healthy person.
Sounds like a good checkup and you'll be back to your old self before you know. Poor Starbucks, they will miss you dearly! Tell the family I say hi and again glad all is well.
Shaunda
Keep your chin up. I had a number of post op complications as well. Blood Draws, blood cultures (hurt like hell). I got sent for a CT scan and the nurse strapped my arm down to the slab and pulled it out to the side to put an IV in for the die and I literally had a flash back to the Operating Room right before anesthetic. The nurse thought I was going to freak and said I had tears in my eyes.
It all leads to the same place - recovery and a return to your life with a greater appreciation for what you have and where you are. I made the right choice and so did you. It WILL get better.
Since my surgery,about 9 years ago......I have not had CAFFEINATED coffee,until about 2 years ago.NOW,I drink 1 cup, 2-3 times a week. NO CAFFEINATED SODAS!!!! You'll feel the difference when you over do the Coffee.I had not had caffeine before surgery,because of palpitations.BE GOOD TO YOUR HEART, DOC. Ricky
It has been two months since my surgery......I love coffee, but I am down to maybe one cup a week and also caffeine free sodas only..some things just seem to linger my right hip is still fairly numb and my right hand is easily 10 degrees cooler than the rest of my body...
I still hear my valve ticking so I am still alive..
Hi Jim,
I'm glad to hear you continue to do well. Yeah . . . caffeine is not good after heart surgery. smile. Thanks for your reply about HIT. I asked because I've had a lot of abnormal blood work since being home and I was given platlets while in ICU, but since I was unconscious, I'm not sure what went on and my husband says my platlets were low and that's about all he knows. Thankfully, my most recent bloodwork shows I am no longer anemic and shows improvement in all other areas. Having experienced so many serious problems I feel like a total minority when I read all the good heart valve journals and I just keep wondering why . . . why. I do intend to have a one on one discussion with my surgeon when I go to Cleveland in November. I have many questions I need answered and while in the hospital I wasn't really thinking clearly enough to ask them.
Keep up the good work and do try to keep your spirits up. It really helps. I know, easier said than done. But I can assure you - it DOES get better in spite of the glitches and detours. My best to you. Ruth Howell
Glad to hear you are back home with family and exercising... my husband heads up to the Cleveland Clinic to have his aortic root replaced and his bicuspid valve either repaired or replaced. He is 40 years old and is an active biker, runner, etc. We live in Nashville and I am wondering if your family could recommend a hotel where I should stay during the week of Bill's surgery/recovery. Our thoughts and prayers are with you for continued recovery. Sincerely, Amy McAllister
Jim Davis Amy,
My wife stayed at the Intercontinental Hotel, which is actually joined to the Clinic building. It's a little pricey but VERY convenient. There is a walkway ... Read more
Jim Davis Amy,
My wife stayed at the Intercontinental Hotel, which is actually joined to the Clinic building. It's a little pricey but VERY convenient. There is a walkway to the Hospital from that Hotel. There is the Wyndham as well as the Hampton. These are further away, but there are shuttles available. There is also the GuestHouse which is quite close and a little cheaper than the Intercontinental. Make sure that wherever you stay that you tell them that your loved one will be an inpatient at Cleveland Clinic!
Jim D
On October 8, 2011...
Hi Doc.,Glad to see you blog and being happier.Walking 5 miles......is WHEW!!!!!! Amazing.Take care,Ricky
Jim, Glad you're home and doing better. As a doctor, can you please explain what HIT is - exactly and what causes it? Having had enormous complications and being in the hospital at CCF for four weeks, I can relate to how you felt. Only difference was I was unconscious for the first nine days. Best of luck to you. Ruth Howell, Maine
Jim Davis HIT is Heparin Induced Thrombocytopenia. This is an allergic reaction to un-fractionated (garden variety) heparin. Your body creates antibodies which cause ... Read more
Jim Davis HIT is Heparin Induced Thrombocytopenia. This is an allergic reaction to un-fractionated (garden variety) heparin. Your body creates antibodies which cause your platelets to drop significantly. It is a very thrombogenic (clot friendly) state. Not a good thing for a new valve. The treatment is stopping heparin and using other blood thinners.
For me much more a nuisance than anything. The biggest issue for me is perhaps not being able to use regular heparin in the future. You know Ruth, I followed your blog intently while you were in Cleveland. I prayed for your recovery and it sounds like you might be much better. This blog is filled with those whose recoveries and courses were uneventful. I think stories like ours need to be told.
Jim
On October 8, 2011...
hello jim i am so glad u are doing better and i hope all the pain and suffering will be behind u soon and u can get back to your normal friendly self...we all at st.elizabeth ft.thomas are thinking about u and miss seeing your friendly smile!!!! carla brownfield
You are doing a lot of walking..THATS GREAT
One of my chanes now is in my prayers I pray for the person who is occupying my bed in ICU and all the others in ICU.
Just wait till week 8 or 9 after surgery...the progress one makes is remarkable.. this was the first week I actuallu felt like going back to work was a viable and achievable option.
GOD BLESS YOU
JOHN MADONNA
Great post today. I can't thank you enough for your willingness to share your experiences. It's been hugely helpful to me as I try to figure out the best path to follow. I sincerely hope you will continue with your postings.
Hi Jim,
Hope your coumadin is at a better level and you are enjoying to be with your family.
I have a bicuspid aortic valve with severe stenosis but still asymptomatic and aneurysm of the ascending aorta 4.6.
I feel like I need to make a decision to have surgery before the end of the year but I'm afraid f the many things that can go wrong during and post-surgery. Reading your story make sme think more than twice in having it doen now or waiting. I'm a NP here in Boston but when I decide I plan to have surgery at CCF, actually with Dr.Svensson. I'd love to hear your opinion, would you have had surgery knowing what you know now? Or would you have waited until sx developed? I'd appreciate any comments/advice/ suggestion. Maria
Jim Davis Maria,
I am very glad about my surgery, now that I am on the back side of it so to speak. What happened to me is an outlier. I am glad that surgery is over ... Read more
Jim Davis Maria,
I am very glad about my surgery, now that I am on the back side of it so to speak. What happened to me is an outlier. I am glad that surgery is over and behind me. Dr. Svensson is the best. He came back to my room on several occasions when he didn't have to. The problem with an "asymptomatic aneurysm" is that your presenting symptoms could be catastrophic. I struggled with my decision for many months, but I am glad that I made the decision that I did. Take Care and God Bless, you will make the right decision. Feel free of message me anytime.
Jim D
On October 7, 2011...
Hi Jim, how are you doing at home. It seems that you had a problem with Coumadin and that you are high metabolizer requiring high dose. have you considered home monitoring . It can be a life changer.
wishing you the best.
Uploading your photo!
After an intense checkup at Mayo they have determined I have sleep apnea and feel that was the cause of the amerosis faugax. After two weeks on the c-pap machine I finally slept eight hours non stop. It has been tough getting used to it. Some nights I had to take it off after two to four hours. If I start sleeping all night long this will be fantastic. I am also hoping the ulcer may of been from the ameoderone and other nasty drugs to stop the a-fib right after surgery. I guess I am going to stay on the baby aspirin and hope no ulcers come back.
My sons father in law was told after his heart surgery that the snakes he sees are the begining of macular degeneration? I have not seen these. I ran the race last week end that I keeled over on 5 years ago. It was a 28:40 5k on an icy highway. I am looking foreword to running Virginia beach rock and roll half marathon with the other HVJ members in August.