Today is the Feast Day of Saint John of God, the Patron of Heart Patients. I always remember Saint John of God in my Prayers and I will remember all of you as well, as I always do. God Bless each and every one of you on your journey.
Call me a sentimental old fool. I saved every text message that my wife sent to me while I was in the hospital for 2 weeks in Cleveland. Many of those were while she was gone back to Cincinnati to care for our girls. The memories came flooding back. Memories not of the pain, loneliness, fear, and uncertainty; but more memories of the deep love that we shared during that period and continue to share. Reading those messages brought a tear to my eye even today. I don't think that I will ever be able to delete those messages. I don't know how I would have made it without her. I'm glad I didn't have to figure that out. I am one lucky man, on so many levels.
Four months out tomorrow. I would say that I feel about 95% back to my old self now. God Bless each and every one you as you continue on your journey.
First some good news...I went to the ophthalmologist and got a totally clean ocular bill of health. My eyes are totally normal. However, he diagnosed with amaurosis fugax. That is transient monocular blindness. A TIA by any other name would not smell as sweet. My vision always completely returns to normal. So what seems to be happening is a small plug of aggregated platelets that embolize from my graft or valve and travel into the small arterioles in my eye. I go blind in that eye for 5-10 seconds and then my vision clears. He suggested that I add 81 mg aspirin to my regimen of meds. Since adding the baby aspirin, I have had no further problems. Hopefully as my after market cardiac parts endothelialize, this problem will go away. Otherwise, I feel great. I can cough and sneeze at will now. I am running and playing tennis again and will soon begin training for my first marathon in 3 years. Life is very good. Things do get better. For all of those out there who wonder about the "ticking" noise, now it is almost comforting. It is a normal noise that I have come to understand and welcome. It doesn't bother me or my wife at all. Thanks Adam, I will "keep on tickin' "
As I said yesterday, I am now 9 weeks out from my composite St. Jude Mechanical Valve and aortic conduit. I am doing great. With only very minor snafu. On 4 separate occasions now since my surgery I have had strange vision disturbances in my left eye. It seems like someone starts with a can of bright almost brilliant white spray paint and paints my entire left visual field. I have no pain, no headache, no associated numbness or tingling. It lasts about 10 seconds and goes away quickly and completely. I also notice that it seems to move with the movement of my eye after some vision is restored. It first happened on post op day #1. I thought I was having a stroke. It happened again in the hospital and then once fairly soon after I got home. It happened again yesterday. It seems like scotomata (those bright lights preceding a migraine or seizure). I do take coumadin, my INR is within range. I was just wondering if anyone else had similar problems.
My fourth full week back to work started today. It is hard to believe that tomorrow will be nine weeks since my AVR and Aortic graft. I feel very good and getting better weekly. I am running again and generally feel very strong. I had my first weekend of being on call complete with two night calls. I am a blessed man indeed.
I have a big week. I had an ECHO today, I turn 40 on Friday, then back to work on Monday. I am ready. I am still a little bit apprehensive about work, but I think that mentally I am ready and I am as physically ready as possible. I now realize why people stop posting. You have to get back to your life. I have seen many go before me and don't hear much from them now. I suppose that I too will fall into the "has been" category. I am truly blessed. My wife was and is always right by my side. My faith is strong and was put to the test at times, prayer was my main companion and solace at times. I look forward to the future with my eyes wide open. I was given a second chance. I suppose that this will be my final post. I will keep all of you in my prayers. God Bless
Today marks four weeks since surgery. Walking at least five miles per day. I feell really well right now. I still have some pain around my incision, not too bad. My feet remain a little numb, but that also seems to be slowly improving. I bought a home INR monitor and it came yesterday. My palpitations have improved dramatically. I am still taking naproxen twice daily for some mild pericardial inflammation. I actually feel like I might be able to go back to work on time on 10/31. If I have learned anything about recovery, it is to expect bumps here and there. You simply have to roll with the punches. My "ticking" is less and less noticeable. Not ready to swing a tennis racket right now. Not ready to run again. Dr Miller thinks it might be December before I can comfortably run (my apologies to Pink Floyd) or play tennis. Oh well. I seem to be stronger each day. My thoughts and prayers are with each of you as you prepare for surgery or recover from surgery. Life does go on, things do get better...I promise.
Saw my cardiologist today. ECG was okay. Coumadin is within range. Walking more, now up to 6 miles per day. Dr Miller wants another ECHO. He is confused about my my resting heart rate being 30 bpm higher despite the same dose of beta blockers. I am a little confused as well. All in all things seem to be progressing well. I think I am off caffeine for good. I haven't had bad palpitations since staying off caffeine. Oh well, I think Starbucks stock will go down like a $2 tire when I stop going!
This one is probably on me. I had a rough night of palpitations until I finally fell asleep around 1 am. Anyone who knows me knows that I am a coffee snob. I made some French Press coffee (Anniversary Blend from Starbucks) and drank two diet Mountain Dews yesterday. I wonder why I had all those palpitations yesterday?? Hmmm. That one might take Scooby and the gang to figure out. Feel better already this am. Gonna take a caffeine break today and see how that works out. Otherwise, still getting my walks in and feeling better. My feet are still pretty numb, not swollen, just numb. If that would go away, I would almost feel pretty dang normal.
I walked 5 miles total yesterday. 3 miles in the morning and another 2 miles in the afternoon. I kinda paid for it too, my feet were a little swollen and tingly last night. Had to wear some sandals. All in all, I seem to be doing pretty well.
I certainly do not want anyone to misinterpret my journals. I have been very blessed. I am recovering nicely and doing everything in my power to get better. I had a very eventful post operative course with the HIT and all, but still consider myself to be very blessed. My wife is an angel (we've been over this I know). She was always right there with me even though she can hardly stand the sight of blood. I don't know how she did it sometimes.
What I would like to impart is patience. Something that I am woefully deficient of. I was mentally prepared for pain, limited mobility, and the surgery. You can't mentally prepare yourself for complications. When I developed HIT, I almost became angry, maybe even incensed. I was tired of being poked, prodded and new IV's started. Most of all I was tired of being a hostage. Which is exactly what I felt like. Dr. Svensson was the best. After my run in with the cardiologist, he came back on a Friday night, two weeks ago tonight, to re-assure me. He told me that he had a patient in his office two months ago with almost my exact dimensions of valve and aorta. He wanted to put off surgery. Unfortunately, he dissected and died before he could be repaired. He also told me that 12% or 1 out of 8 aneurysms has ruptured at a dimension smaller than mine. I know that I made the right decision. All the prayer and thought I gave this has to be right.
I guess in the end, I would counsel my colleagues to TRY to be patient. Hopefully, your recovery in the hospital will be smoother than mine and you will not spend 14 days in the hospital. Hopefully I soaked up some of the bad post operative luck for a few of you and you will recover smoothly. I am a blessed man with a beautiful family and wonderful friends. I will never be able to thank each of you enough. I know that at times, I must have sounded vulnerable and perhaps pathetic. My thoughts I posted were genuine. I am not one to let my deepest emotions be heard and expressed. However, I felt like my emotions needed to be heard. If only perhaps serve as a guidepost for someone else along this journey. God Bless and always remember the Prayer of the Journey to Emmaus..."Stay with us for it is evening and the day is almost over..." Even at the depths of despair, God is always with us. I have absolutely no doubt about that. I have no idea how those with no faith can get through something like this. God is with those as well. Take care and God Bless each and every one of you.
Feel pretty good today. Went to the coumadin clinic, still low at 1.8. Another shot of fonduparinux. Thank Goodness for good insurance. Continue same dose coumadin for now. Took a nice walk this afternoon with my daughter up and down lots of hills near my home. Feeling stronger each day. Actually able to sleep in my own bed last night and have not needed to sleep in the recliner as yet. It is wonderful to sleep with my beautiful bride again. Noticing the ticking less and less now, as I am "Cogsworth" according to my daughters. For those of you who don't know, Cogsworth is the little clock character from Beauty and the Beast who is constantly ticking. To those awaiting surgery, I wish you God Speed and Good Luck. It is nice to be on the "other side" so to speak. Now to let the healing begin, my chest, my heart, and my poor veins. It was nice to go the coumadin clinic because, it is where I practice. So I was able to see my friends and colleagues again. Wonderful people. For me, my life has changed, but not completely. I am still the same man that I was. I am very different about my wife, family, career. I now have reshuffled my priorities a bit. My family is truly my source of power and inspiration. Each day gets a little better, a little stronger, a little easier.
I feel like an INR hostage. My INR actually went down last night to 1.4. I almost feel like laughing. My family is still here and making this much easier. Down to labs just once daily. CAPITALLY FRUSTRATED. I can't even begin to describe my frustration. I don't want to seem ungrateful for my very good fortune. Surgery went great. I had a mechanical AVR, wasn't counting on that. But I'm okay with that. Coumadin is tea leaves and chicken bones. No rhyme or reason at all.
If I knew then what I know now, I would have stayed home for this. I am at the end of my rope. INR today 1.5. At least my family is here. But for how long? At this rate I could be here several more days. I simply can't bear that thought. I have considered requesting a transfer back home to a Cincinnati hospital. My visit to CCF has not been a completely pleasant experience. On POD#2, I essentially had a cardiologist ask me why I had this done. Are you serious?? Even if you thought that, why would you ask a 39 year old man, who felt great before his surgery, that question. As a physician, even if you felt that way, keep that to yourself.
Despair is slowly coming on me. Waiting on my INR to come up. I know all the right answers, that the hospital is he best place for me. Blah, blah, blah. As a patient in the hospital, you are absolutely helpless. You are at the whimsy of others all day. The loneliness is crushing. Despite being lonely, you don't really want any company, because you're rotten to be around. REALLY STRUGGLING. Prior to my surgery, I felt great. I knew an AVR was possible but seemed very unlikely. Guess what, new valve. Oh okay, no HUGE big deal. I can handle that. Oh really, now I have HIT. Are you freaking kidding me! I feel I am adrift in a raft in the middle of the ocean with no land in sight. My family is coming up to see me for the weekend. Hopefully they won't leave without me.
You never imagine that what may delay your discharge are silly things. This journey is like a fun house. Except it's no fun. At least Missy and my girls will be back tomorrow. They promised they wouldn't leave Cleveland without me!!!
Despair is a form of idolatry, which is a sin. Thank goodness I am a sinful person anyway. Feeling pretty good. Only taking Tylenol for pain. Incision looks good. Hopefully home soon. I have developed a right bundle branch block since surgery. I have heard from people who have actually had to have pacemakers after this surgery. I cannot begin to tell you all how much I appreciate all your thoughts and prayers. It is indeed humbling. My love and best wishes to all. Wow I don't know how I rated the "Patient spotlight". I am humbled again Adam.
My wife and I decided to have my surgery done at Cleveland Clinic. About 300 miles from our home. Today is day 9 in the hospital. Sent my wife home yesterday to try to resume family life. A few post operative snags will likely keep me here through the weekend. Missy is going to bring the girls up this weekend and I can't wait to see them. I simply cannot bear (?sp) the thought of them leaving Cleveland without me. Going to a center like Cleveland Clinic is a blessing. Knowing then what I know now, I might have stayed closer to home. I have received top rate care please don't misinterpret (minus a few hiccups here and there). But I really miss my family and friends. I still really have no end in site. Maybe Sunday??? Starting to get a little down. I suppose that simply making it through my surgery should be reason enough for thanksgiving, and it is. My faith has not been shaken as yet, only stirred a little.
Missy went home today to be with the girls. I am still in Cleveland trying to stay sane. My chest has minimal pain. I only took four Tylenol yesterday and two were for a headache. Blood is now thin on bivalrudin. Hopefully now to resume coumadin tonight. I want to go home so bad I can taste it. If I have to stay here much longer I may go see Lloyd down in the Overlook lounge for a drink. (you fans of Stephen King or The Shining will appreciate that I hope)
Another thing to always keep in mind about recovery is to expect the unexpected. Today I was diagnosed with heparin induce thrombocytopenia. Heparin is off and I am n bivalrudin. My coumarin has to be reversed and I have to be fully anticoagulated with coumarin again. Maybe another week in the hospital. Just trying to stay positive and be strong. Missy is going home tomorrow tomorrow to be with the girls. Will keep everyone posted
Wow. Went to percocetville last night. Don't ever want to go back there. Lost a whole day. Also, I was always very proud of my veins. They are gone. Really tired of getting poked on! INR still poking along at 1.6. Feeling better on Tylenol now and will try to avoid percocet for the future. Possibility that I might have heparin induced thrombocytopenia. What next. Just about ready to jump the fence
Up and walking today. Several laps around the step down. Percocet is a friend of mine right now. Still having some pain but it's manageable. Missy got some rest last night. Have to have my "graduation pictures" according to Dr Svensson. A repeat echo and CT scan before I go home. Waiting on my INR to come up as well. A patient of mine reminded me once upon a time to "not let a sneeze sneak io on you!"
Will post more later.
What a past few days. POD3 and I took my first long walk down the hall. Walked all the way down the hall to the nursing station and back. I've had marathons not been so fulfilling. I cannot begin to express how I am so truly blessed to have so many good friends. I love you all very much. Missy is the greatest, but I already knew that. Feeling better each day.
God Bless each of you. My love and thanks to you all.
We are on the way out of ICU. Jim had a very restful night, chest tube is coming out and his mood is good. The Dr said that everything looks great, his heart is doing very well!! It's ticking like it should! Our kids are already making jokes about his "new parts" calling him Clogsworth from Beauty and the Beast. You have to have a sense of humor about it all!
We have made progress! They took out 2 of his chest tubes, which helped with the pain. He was then able to stand up and transfer to a chair. Dizzy but that will get better. After adjusting to a chair, he clicked on the tv to History Channel and had a purple Popsicle. Oh by the way, he said "that was the best damn Popsicle I have ever had". We are at at stand still for now, but I am so proud of Jim for getting this far. He is a real trooper, he is being such a good patient & listening to everything the Drs and Nurses are telling him. I am napping in the lounge now, so I will head back soon to see how my hubby is doing!! I will update soon!! Thanks for all the encouraging words from those who have already been through this.
Jim had a rough night last night, first night post op. Pain was pretty bad and dealing with hiccups and nausea. The surgeon said everything is going well and some of the chest tubes will be taken out today. We think some of his pain is do to the tubes.
Looking like we might spend another night in the ICU. That's ok, I want Jim to get as much TLC as possible!
People are super nice and very helpful in educating me on what is going on. Thanks, also, to Jims buddy Tony Samaha for texting me and keeping me on track! Things will get better , just need time to heal!
Finally Jim got his breathing tube out and pain is under control. The staff ,doctors and everyone at CC are amazing! Jim looked at me and said "honey , I think I'm gonna be ok". Life is good....
Something pretty cool happened, well Jim loves to read about the "Saint of the Day". It so happens that the Saint on Jims birthday (October 28th) is Saint Jude. The name of the heart valve that they used on him is called Saint Jude Compost Valve Graph. A Priest told me it was a wink from God. Life is good!!!
Well, good news is, surgery is over and he is resting in ICU for now. On the side of ,not as good news, they not only had to replace is Aortia , but his valve was replaced too with a St Jude Composite valve graph. I guess his valve was a train wreck. He won't be thrilled with having to get a new valve, but the surgeon said , not in these words, that the aortia would not have been able to work with the old valve. Looks like blood thinners for life but that's ok, it could be worse!! Soon Jim will be writing his own journal entries... Updates to come soon!!
I'm Jims wife , Missy, adding a journal entry to my husbands story. Today is surgery day. I've been told this will be the easiest day for him, not feeling anything , just anxiety before he gets some meds . He went in around 7:00am and now we wait.
As we waited for Jim to be taken back, we noticed that we were defiantly the minority in the waiting room. Until a young lady approached Jim ( about 40 ish). They both joked about how young they both were and exchanged well wishes to one another.
Jims was finally taken back and then we were allowed to join him for a brief 2-3 minutes. As I looked around the room, I noticed a lot of hair on the floor, oh my they shaved him bald!! Not sure as to where (besides chest) but will find out soon enough!! He was ok, but needed some reassuring that it's all about getting those drugs started! I know he is not doubting his decision but yikes the pain of healing is starting to weight on his mind.
I will keep in touch! Keep positive thoughts and prayers coming!
All pre operative visits done. Waiting to hear about when the surgery will be. Either report at 5:15 am or 10 am. Made reservations at a great looking steak place. Life is good. My wife is right beside me resting. No doubt getting ready for her big week too. Sometimes I forget how tough this is for her. It's easy for me to break up sometimes. She has to hold it together. She really is the best thing that ever happened to me. I sure don't deserve her. This will be my last post. Missy will keep the site updated. Take care and God Bless each one of you.
Made it to Cleveland last night. Getting ready to head over for some pre-op testing and Dr visits. Surgery in the morning. Missy will keep everyone updated while I am in surgery. It's been a long time in the making. God's Will and any luck, I'll be back up and running soon!
Today is my last day of work until Halloween. Time to get a few last minute things today at the office. A good friend of mine who is a chaplain at one of the hospitals where I round is coming over to my home tonight to have a Mass and Annointing for me. That's pretty special for me and my family. Shelby (my older daughter) has a play this weekend that she has been involved in all summer. Then on Sunday, Missy and I will be heading to Cleveland. Pre-op visits all day on Monday and then surgery on Tuesday. I want to wish everyone well, God Speed and Good Luck. To all who have gone before me, thank you for all the inspiration and example of how to get through this little brief chapter of our life. To all who are just getting underway on their journey, take these kind and inspiring words to heart from these journals. To those facing surgery soon, I will be praying for your speedy recovery.
Down to less than 2 weeks til my big day. I have been on the site for > six months and I have seen folks come and go and then there is me. I have listened intently and read many posts as folks go through various stages of their journey. I will be thankful to set this little chapter of my life to my rudder. My family is amazing, my beautiful wife especially. She is the most amazing person. I have no idea what I have done to deserve such a wonderful wife. I am indeed richly blessed. Everyone take care, God Bless and I will pray for you as I would ask you to pray for strength for me and my family.
The eventuality of surgery is upon me I guess. Sometimes I wonder if I am doing the right thing. My aneurysm is 5.1 cm. My valve is bicuspid but does not leak nor is it stenotic. Some of my friends (doctors) ask "why the rush to get this fixed?" Never good to even consider second guessing yourself at this time. I feel great now, I guess that somehow I may not feel as great after I get my new plumbing. Doctors are supposed to know everything, baloney! Doctors think we know everything...
I had my angiogram done on Friday. Mailed out the films on disc to my surgeon along with my letter from my dentist. Not much left to do except for the trip to Disney next month. Hopefully my surgery and recovery will be as uneventful as my angiogram.
I have my cardiac angio tomorrow. Hopefully that is the last of the prep that I will have prior to surgery in September. Still has not quite sunk in just yet I don't think. My family is great and a a wonderful support. Just when I wonder what God is trying to teach me about patience and trusting his will, my AC goes out during the hottest week of the year (no AC for past 5 days). Patience is indeed a virtue. Maybe I should be more thankful for what I have than longing for what I don't.
I met today with an oral surgeon. He looked over my panorex of my teeth and carefully inspected my mouth and gums. Then he told me that he would not recommend extraction of my wisdom teeth. He said that they have bone over them and that there is no "pocketing" and my chances of having problems was minimal. He would not take them out. That was a bit of good news. And now...Heart Cath on 7/22, Disney in August with my ladies, and then aortic root repair in September. Giddy up...
Went to the dentist today. Teeth are in great shape except for the impacted wisdom teeth. My dentist didn't think they HAD to come out. But being on the safe side, I think I will arrange to have them extracted. I am not looking to that, but just another layer of the maze.
I just realized today that I have 4, count them 4 freaking impacted wisdom teeth. Very aptly named I might add. In my case, maybe they should be called dumb ass teeth. I have known about them for almost 25 years. I have no problems, no pain, no infections, or anything. But boy howdy, prosthetic valve endocarditis would absolutely be a real stinker. I guess that I may have to have these dog gone things cut out after all. Just one more goofed up layer to an ever increasingly frustrating mess. I guess its a good thing I don't have surgery scheduled until September.
I had a long day of testing at Clevelad Clinic today. Met with Dr Svensson. My aortic root is 5.1cm and needs to be repaired. My aortic valve is bicuspid, but is neither regurgitant nor stenotic. Dr Svensson thinks he can replace the root and leave the valve alone. He thinks there is a 10% chance of having to repair or replace the valve. He thinks that my valve will last as long as a tissue valve at the very least and may not need replacing for many years to come. All in all not too bad news
My wife and I are headed to Cleveland Clinic tomorrow afternoon. Will finish up a light office schedule tomorrow and start the short drive to Cleveland. I am quite glad that I live pretty close, only about a 4 hour drive.
You know, it hit my kinda funny. I noticed that on my correspondence from Cleveland, all my testing is listed as "pre-op". It's one thing for me to say that, but when you see it in writing from the hospital, it's just a little creepy. I feel like a mariner about to sail at night, when you can't see. You can't see if storms are approaching, you can just see the water just off your bow. I guess that you have to trust your instincts. For me, that instinct is prayer and reflection on God. In keeping with my maritime reference, I remember the story of Peter seeing Jesus on the Sea of Gallilee. Jesus told Peter to come out on the water and walk. Peter did just fine until he started looking around at the water and the churning sea and he began to sink. Until Jesus reached out his hand to save him and pull him back from the depths. Sometimes I feel like the one with little faith. Updates hopefully on Friday after my testing.
Thanks for listening
I finally broke down and talked to my mother about what's going on. Remember, the same mom who I said couldn't handle this news with all that is going on in her life right now. Remember...
Well she took it very well and was actually upset that I was keeping things from her. She thinks that it is very smart to go to Cleveland and find out the right plan. So much for what I know.
Last night, I had to hold my 7 year old little girl as she cried herself to sleep asking me if I was going to die. She also wanted to know if the doctors were going to hurt me. I had to explain to her that they were trying to help daddy get better and live for a long time. I think that was the most unpleasant conversation that I have ever had with anyone in my life. When I told her that I was going to see the best heart doctors in the world, her remark was, "Daddy, I thought YOU were the best doctor in the world." I had to explain to her that I was not a heart doctor...LOL
Anyway, still looking forward to pushing this along. My lovely wife and I are taking the girls to Disney in August. I hope that I can wait that long. I may be in therapy by then. Still praying, still praying for patience, still praying for the wisdom to know what to tell my little girls.
Looks like I will be pointing the old 4 wheel drive wagon toward Cleveland. I have a full day of Dr. visits, scans, echo, pulmonary testing, etc on May 25 and 26. I suppose that I will have a plan in place after my visits. I am actually excited and a little nauseated at the same time. I know I have a wonderful family and support system. I feel a little sad that I simply refuse to tell my mom. She is struggling with breast cancer and on chemo and certainly has her own crosses to bear right now. Please don't get me wrong, I suppose that she needs to know. However, my mother WILL NOT take this well at all. She seems to think that my aortic root will never worsen and she doesn't quite understand the ramifications of what happens if she's wrong. What doesn't help either is that my family is dysfunctional to say the very least. My parents are divorced, a very bitter divorce indeed. I am somewhat estranged from my only sister who has completely alienated my mother. My dad is the only reasonably well wrapped person in my family. My wife is the best, her parents are great, and all my friends are the greatest. The hardest part of all of this may the drama when I tell everyone the final plan. Maybe they won't miss me while I am in the hospital. Nah...
I heard from Cleveland today. Scheduling should be calling me soon. Evidently I need pulmonary function test, a repeat ECHO, CT scan, and a Holter monitor. Then I get to meet Dr Svensson to discuss timing of the surgery. I guess at some level I am relieved to start this process.
Let me be the first to say that doctors make LOUSY patients. I just returned home from a great 7 mile run, 70 degrees, brisk early spring air. I feel as strong as an ox. I never felt bad until I started taking beta blockers for my dilated root. Not to mention the fact that I really feel better and I am healthier than at any point in my life.
What a time to have to contemplate having open heart surgery. I guess I could understand if I felt bad. I have a whole new perspective on health care. Now I think I know what my patients must feel like when I tell them to take their anti-hypertensives or watch their diet or their blood sugar more closely. They don't feel bad...why should they listen to the doctor.
On a lighter note...A good friend of mine is a cardiologist (not mine). When I told him I was going to go to Cleveland to talk to the surgeons about my case, I told him I was afraid that they would tell me I need to have surgery. His simple response..."if you don't want a haircut, don't go to the barber."
Thanks for listening.
I received my copy of Adam's book today in the mail. Can't wait to dig in.