Steve's Journal

Betty Sullivan Sorge  I’m a retired nurse, but def NOT from Seattle altho I too had my surgery on Aug 31 at Cleveland Clinic sooooo we must have passed each other in the hall at some point!! How r u doing??? I’m doing pretty well, except developed pericarditis 2 weeks ago 😩😩😩- still HURTS when I cough. Otherwise feeling generally maybe 85% recovered! 7 weeks today!
Happy Anniversary!

Steve Fowler  Small world. I had a bout with a-flutter which I'm still working on by taking a beta blocker. I blame the medicine on making me tired. I'm hoping when I get off the medicine my stamina will start to build. Chest feels good. Glad you're doing well!

Leslie Bakos  God bless Steve...I am not sure I will even do surgery...I am on so many meds that...My quality of life is a 3-4 out of 10...At least you gave it a try...I have a huge hernia as well...which will affect me...A fib sucks..as it destroyed my life....Are you on a blood thinner.....

Barbara Wood  I found 6 weeks to be a real turning point, just as my surgeon told me it would be. The beta blockers slow your hb & can make you very tired. I was on metoprolol (a beta blocker) almost a year before surgery, it took me a month at least to adapt to the side effects - I was extremely fatigued at first. It does get better though as your body adapts. Hang in there, you will get stronger & you will feel better!

Rose Madura  You WILL feel stronger and better. OHS is a very invasive surgery and our bodies all react differently. Try to talk one day at a time. I promise you will feel better. I had a rough ride and it took me a while (with lots of hospital admissions) but I finally am starting to feel better. God bless you. Keep us posted.

Leslie Bakos  Hi Steve. I just had an abalation three weeks ago. It was weird. I was rasping a bit at night and I have a nice size umbilical hernia about 5cm or so. I went to a lung doc on the 2nd of August found out I have at least mild COPD. She told me to get a CT scan. A week later I was told I had an enlarged heart. She mentioned I should go to a cardiologist. I waited a day and try to book an appointment. It would be in October. So I went to my GP and she got me an appointment for the 19th August. I bought a blood pressure machine and saw that my blood pressure was kind of high a few days later it showed that I had bad afib 145. I went to a med center and they called an ambulance. I was tortured given 2 IVs and lots of meds nothing worked and I was shocked....I went back to sinus rhythm. Released next morning and told I had a good heart. Just in time for my first ever cardiologist appointment. I was back in afib and they did an echo and I have some pretty heavy mitral leakage and moderate tricuspid leakage and some calcification in my aorta. She mentioned would I be interested in an ABALATION. I was told to come back the following Tuesday and get a halter monitor. Well the same night back to the hospital again and shocked nothing worked so they kept me in did another echo and ask me if I wanted an ABALATION. I know they knew I was kind of screwed with these bad valves and they could not stop my afib with meds. I was going to have it Monday but went into Vfib. The doc freaked out. So they got the expert doc who handles ABALATION surgery to do it the next day. In the meantime I had a TEE no sedation...just shoved it down my throat. The doc was nice and felt no entry pain in the groin and I was semi sedated ...the procedure took about an hour an 10 minutes. I was released the next day on tons of meds as well. I am a zombie and depressed. Having a huge umbilcal hernia, COPD from radiation therapy not smoking is scary. I have seen my cardiologist since then and was shocked that I had ABALATION surgery so fast. And basically sat me down and told me that I will need to get open heart sooner or later...or basically have a short life. MAN within 3 weeks just finding out that I had an enlarged heart I have gone through so much. I am curious about my ABALATION as I am on meds...to see if it will take. I don't think I have any major AFIB but my pulse has creeped up to the 80s from the high 60s and low 70s. Blood pressure seems to be better diastolic seems high in the morning. I am taking Elquis and concor and diurectic. BUT STEVE ABALATION was nothing....I ate an hour after the procedure and just kept my leg still as could be for 6 hours. I had a bit of heartburn a few days later....Not sure if was the meds or the abalation. My big question is will ABALATION hurt of help me if I get my valves done....since AFIÍB could be a symptom of leaky valves. I would recommend breathing exercises. I need to learn them myself since I breathe wrong. I will take a yoga class to learn how to breathe. Man I really wish I would have taken care of my hernia years ago. So Steve...I needed to let loose a bit here. I am so depressed....night terrors... I live alone. I am in a foreign country...Hungary...I am American. I have no US insurance. In 5 weeks I went from having a "perfect" heart to facing multiple valve surgery with damaged lungs a huge hernia and a crooked spine. And I have lost a lot of weight....not sure why. GOD Bless you Steve...looks like you had some rough days and you are honest about them. I am not sure I can survive OHS. I am only 49....was an athlete. But man waking up not being able to breathe would scare the crap out of me and if they mess me up...I could not handle a second surgery. I admire you for working,,,,I can barely function on all my meds....

Rose Madura  I had aflutter and I had a cardioversion during my 2nd surgery. The 2nd case of aflutter, I converted out with IV drip of Amiidrone. That was early July. No further issues with Aflutter.

Janice Smith  Didn't have any pain after my heart cath., but we are all different!! Thinking of you tomorrow. I had my AVR at CC also., September 9, 2014.

Steve Farthing  My forearm turned black for 2 weeks. They had to abandon using it for the cath and went to the femoral artery instead.

Catie B  Steve, it's a huge deal. It absolutely is. I was anxious beyond words, just terrified. And to me, that anxiety ahead of the surgery was one of the worst parts.

Like you, I went across country to Cleveland. I tried to reassure myself with the thought that I was in the best hands possible and that whatever happened to me, this would not be their first rodeo and they'd be prepared to take care of me. It is a fact that you're on board with one of the best surgeons in the world. That doesn't diminish the fear that this is your heart they are working on. Gratefully, these surgeries truly have become safer and safer, especially in centers of excellence like Cleveland.

I just wanted to say, I hear you loud and clear. And to validate that OHS is one of the most stressful experiences on the planet. Best, best, best to you for surgery and recovery!

Civita Fahey  I remember the feeling Steve.. I wanted to say " how do you know that?? its not you having this major surgery! But, they are trying to help and remember that your family and loved ones are as scared as you if not more.. But, from one who has had it and made it through you will be fine, if not better. Best of luck.

Melissa Alfred  oh I've been in your shoes this past April. everyone was saying the same thing and I was so frustrated bc no one knew what I was going through I just cut off from everyone eventually bc it made me sick hearing about their stupid crap in their lives like her husband didn't do this or they hate the weather lately, oh well i'm having open heart surgery, shut up. but they're just trying to help with a situation they know nothing about. I freaked out until the morning of, it's totally normal. You take care of you, do what you need to do to get through these next few days xo

Sandra Noetzel  You are definitly not alone Steve. My Date is Aug 24 and I keep getting the same "you'll be just fine". I believe most people don't really know what to say. I am a mess of tears and fears. Hard to focus and concentrate on anything. I wish you the best outcome with your surgery.

Rose Madura  I remember those comments as well. But people are just trying to encourage. And I'm sure you will be fine. These surgeries are done every day -successfully. Yes, I had setbacks but got through them.

Marie Myers  I know what you are saying. People would tell me "you will be fine"... I KNEW I would be fine, but I sure did not want to go through this whole thing anyway! People are trying to be supportive and positive; I know that is true. But like Civita said , your family and friends are scared, too. We are at best, just human... Best wishes in your journey, and take some Xanax if you need it, especially to sleep.. Trust me, I am a nurse.....

  I can totally relate to this Steve. The latest comment was "You've got this!" ... well yes, the choice to NOT get this is not good, lol!. But that same person shut down right away. I do believe people mean well but of course they are scared and are probably thinking "Gosh! This could be me." Hence the comments that sound minimizing. We WILL get through this and be even stronger. Wishing you all the best.

  It's a HUGE deal!!! And those people have no idea. I met my cardiothoracic surgeon for the first time last week. And I love him and feel we are a good fit and he will do everything he can to give me a long life. But, he explained the procedure start to finish and i have been having dreams every night. I was so happy, now nothing but fear and anxiety. Even though I am probably looking at February or March for surgery. I feel like there is a dark cloud following me everywhere. Nobody understands unless they have been through it. It's unlike any other surgery.

Rita Savelis  "You'll be fine" is the worst thing anyone can say, but many do say it. They brush away all that you are experiencing right now. They don't acknowledge the difficulty of your experience. But I think many do not know what to say or how to portray compassion. You are experiencing something big, something singular. Recovery can be long. One emerges a different person. There is a before and after. Your experience is your own. I'm sorry you have to go through this. I was never helped by those (even on this site) who gloss over the reality of this hard experience. I was never afraid of surgery but of recovery which takes longer and where I would play a part. That said, almost everything is out of your control. Bu you move forward, one day, one moment at a time and things get better. One day you look back and realise, like me, that 2 years have gone by and you're okay.
Take care.

Bob Gillespie  Every single one of us facing this gets the same response from people. They just don't know what to say. As my Niece (an author) put it, "I don't appreciate the greeting card answers that are marshmallow filled with a side of bubble and sunshine!"

Artie Hall  Some people would say stuff like, "nowadays, its just like changing a tire". While there may be some truth to that statement, when it's YOUR tire, it is definitely cause for alarm, anxiousness, fear, etc. This is the most vastly invasive surgery a person can have. What s more comforting than these types remarks are real life experiences from folks like us that have gone through it, the good, the bad, and the ugly so to speak. Knowing what lies ahead was a good way for me personally to process going into my own surgery.

Marie Myers  I think walking is great. Anything that strengthens your legs and overall stamina really helps. Bike riding is another good one...

Wiliam Height  Order a 4 liter Spirometer or ask for one in one of your pre-op meetings. Two things will be required of you rather quickly post-op: getting you on your feet and moving and breathing deeply on your own. For me, I didn't want to be Intubated long so I did a lot of deep breathing excercises and was off the ventilator breathing on my own 90 minutes after surgery.

  I think all good ideas. I like the spirometer idea. I think I will do that as well. My cardiologist recommended light cardio. Walking, stationary bike (slow, only a few minutes) to strengthen heart.

Gerald Poulton  My surgery is on Aug 9th, I am aesymtomatic so maybe it is easier fir me, I am walking and doing a lot of deap breathing, today I walked for over 2 hours which is about 8 miles fir me. With my deap breathing exercises I also expell the air in a long slow exhale, trying to take a minute or longer to empty my lungs. I think anything that helps your legs and lungs is good.

Darlene Smith  Work those legs and core!!! I made sure I could get in and out of my recliner without using my hands or arms as my surgeon did not want me using my arms at all except for balance.

Marie Myers  That is one of the harder tasks. Getting in and out of bed/chairs without pulling, pushing, or lifting yourself with your arms. You want that sternum to heal ASAP nice and tight...

Gerald Poulton  One more that I did recently, ordered a heppa air filter that wouod do 3200 sq feet., , moved furniture in my bedroom and dusted, vacumed and washed the carpet, dusted and vacuumed the rest of the house, dust can make me sneeze and I certainly dont want to do that after my operation. The unit also has an ionization mode that cleans the air.

Laura Jacobs  Hi Steve, The hardest part for me is the muscular aches in my upper back and shoulders. It feels a little like pulled muscles. I expected it to be much worse than it turned out to be. Three weeks past surgery and the improvement is remarkable. I will say that I found these aches a great deal less painful than I the pain I experienced when I broke the bones in my wrist a few years ago. In that case I had to have surgery and they put in a plate and screws to stabilize the bones. That pain was targeted and sharp and lasted for months. Personally, I am able to cope with aching muscles much better than I can deal with throbbing pain like I experienced with the wrist. I also had some vein inflammation in my arms which I also found more difficult than the muscle aches. We are all different in our tolerances though.

Martha Dean  I know everyone is different, but for me (I'm currently 4.5 weeks post OHS) when they say every day after, you improve by leaps and bounds, it's true. Especially those days still in the hospital. I came home with pain meds and continued to use them for about two weeks. I wouldn't say my ribs are sore. It doesn't hurt to breathe. For me it's the incisions. They get stiff and sore but very tolerable. I am still taking daily naps. I am not doing any driving, housework or cooking. I see my surgeon this week for the first follow up. Hoping to be cleared for driving. I started cardiac rehab 3 weeks after surgery. Was amazed to find out what I could do without additional pain. Again, everyone is different but so far this is my story. Good luck to you!!

Marie Myers  Agree with Laura. Very little chest pain, but lots of shoulder and upper back muscle pain.. I rarely took narcotic pain Meds, even in the hospital. I would have payed anything for a back rub...

Barbara Wood  I had a full sternotomy, about 8" long & had no real pain from it.I had a kind of prickly, irritated feeling in the area around the upper part of the scar- I hated for anything ( clothes) to touch it & lived in v neck tees for about 4 weeks, then that went away. So for me, no pain- I didn't need any pain meds after I came home. I had no back or shoulder pain- my surgeon positioned arms at the sides rather than overhead- I actually asked about the positioning beforehand, I wanted to avoid the shoulder pain. So, skin irritation rather than pain for me.

Rita Savelis  I had no pain from my sternotomy. This is what my anasthesiologist told me it would be like. The sternum is not like your ribs. I've never had another surgery with so little pain from the cut itself. I used no pain meds (except for morphine when I woke up in ICU).
Others talk about muscle pain, but I guess it depends on what kind of position you lie in during surgery.
OHS was an ordeal, but not painful. Hard to describe. This surgery involved intense discomfort and exhaustion, and recovery was very long. I had days and weeks where I felt the same, not like I was improving - just in the same place. Sleeping is hard, moving around is hard....And I had an awareness of my sternum, a sort of pulling feeling. Not painful, just uncomfortable. It's hard to describe. What's intense for your body is that your heart is cut into and so goes through trauma, that you don't feel as pain, but that affects so many other organs and hormones. You need time for your heart itself to heal and to get your strength back.

Darlene Smith  Steve, I was essentially pain free in my sternum after 5 days. I took no pain killers after I left the hospital. My ribs were not sore at all that I could tell. I know everyone is different. Hopefully you will be one of the folks who doesn't have a lot of pain. It seems to vary greatly patient to patient.