Dan's Journal

6-Month Post-Surgery Update: After lying under knife 6 months ago, I’m not fully back to “normal” and am very annoyed about this and many other things. Two cardiologists tell me that, after six months, I must look elsewhere for answers. Both treat me kindly and both dismiss my various symptoms as: “outside their expertise.” Asymptomatic, I reluctantly elected surgery based on increasingly ominous echocardiograms & advise of 3 cardiologists & 2 surgeons. Surgery & immediate post-surgery went fine, described as “uneventful.” My worst surgical fears were not realized: These fears included: death, life-long paralysis, months of dependence on others, waking up during surgery, waking up with the breathing tube, torturous pain, surgical complications or various other problems involving, sex, excretion or losing my sense of humor. However, I do feel like surgery, while saving my life, changed & aged me, from 69 to about 75. My incision still pinches while driving or unscrewing a cap. My hair is significantly thinner, even balding in spots. I’ve lost 20 lbs that I think is a good outcome, but my wife and children think is too much. Mostly, I’m tired and irritated. Sure, I like to read, listen to music and watch TV/Movies, but I’m unproductive - doing things is a real struggle. Even after a rare 8 hours sleep, I wake up tired until I take medications (tramadol & cannabis). While still retaining the capacity to occasionally be a nice person, I’m meaner, angrier & more annoyed than ever. Despite regular boring exercise, I’m exhausted with everyday life. I’ve seen a $200 cardiac therapist (covered under health care), who told me I’m clinically depressed and recommends a $425/hr psychiatrist (only 20% covered) who told me that at my age “people start coming to terms with the world.” She wants me to stop taking tramadol, cannabis, and Xanax; she substitutes her prescriptions for Wellbutrin (for depression), Gabapentin (for fibromyalgia in legs) and Doxepin (for sleep). I cannot afford this doctor and her prescriptions help less than my current medications. So, I’m frustrated & wonder if this is still post-surgical blues or simply old-age depression or some other mental deterioration.

Tramadol withdrawal? Tramadol has become the drug of choice for post-surgical pain. It's an Opioid whose use has become widespread because it's supposedly non-addictive although it can be habit forming. I'm heading into my 14th post-surgery week & stopped taking it a week ago. I did keep taking it even though I wasn't feeling pain because I thought it helped me sleep. Knowing that I can't take it forever, I stopped. Since I stopped, I feel like I've relapsed several weeks. I'm tired all day, but I don't sleep well, Once I lie down, I feel uncomfortable and agitated. I sometimes nap during the day which I hate doing because I feel like my life is slipping away. I have little motivation other than rest even though I have been forcing myself to go to cardiac rehab 3 times/week. But I'm exhausted afterwards. I'm sure my family and friends are tired of my hearing how tired I am. My doctors say: "You are 3 months post-surgery and should be feeling normal or better than normal and your tiredness is not the result of tramadol withdrawal or metoprolol (which I'm still taking): you should see a therapist." But there's lots of anecdotal evidence online that relates to both 'tramadol withdrawal.' Have any OHS veterans or medical personnel have any experience or opinion about tramadol & any negative side efforts or withdrawal symptoms?

At my 3-month Surgery Anniversary, I’m frustrated that I don’t feel good or “normal” all the time. I was told repeatedly by surgeons/cardiologists "full recovery takes 2 & 1/2 to 3 months." Two weeks ago, I thought my recovery turned a corner, but that feeling got altered this week when I tried to do something new: go to Family Event (a cousin’s 50th Anniversary Party = hour drive), then go on “Vacation” to Michigan (from Chicago - hour & half drive). Motivation for family event involved my desire to demonstrate to distant & uncaring family members that I survived and thrived after AVR/OHS. But, on the morning of the Event, I felt sick - a combination of eye infection & social repulsion. After much internal debate, I decided not to go to family event. Then, a physical/mental meltdown (my first in 2 weeks) prevented leaving for the short trip, which was partly a celebration of our 14th wedding & my 3-month surgery anniversary as well as a getaway for my wife who’s been a strong & empathetic helpmate during my recovery. Like a frightened child, I went to bed & repeatedly imagined the car crashing through the Chicago Skyway guardrails among many other dangerous mishaps. In short, I felt unsafe leaving. After spending 3 months recovering here, I was afraid to leave my familiar area. I slept away most of the day. Feeling better the next day, we departed & got there without incident. Annoyingly, the drive itself exhausted me. One day, I reluctantly & tiredly pushed myself to do vacation-type activities. The next day, I felt good enough to play quasi-tennis. I hate that almost every step back to normality is fraught with anxiety and that doing lame actions and activities -- like pulling open a stuck door with both arms -- feels momentous: "Wow, nothing ripped open!" Even turning the steering wheel of a car still tugs on the sternum. I know now: full recovery takes much longer than 3 months. Frustration is inevitable.

I’m 11 weeks from surgery and feeling more “normal” than ever. Next week I’m off Coumadin. I still go to cardiac rehab 3 days/week, but I ride my bike daily, go mini-swimming, and play quasi-tennis. I’ve become slightly more sociable, slightly less annoyed & slightly more motivated. I do still feel a tug at my sternum at times, but actual pain is gone. At night, as I listen to my heart beat, anxiety sometimes kicks back in: how long will this cow-tissue-valve last? But overall, I’m doing pretty well, about 75% back to pre-surgical “norms.” It’s been a long somewhat unpleasant journey. My problem: I was asymptomatic before surgery: no pain, no breathlessness, & no extreme fatigue, so my recovery means I don’t feel any improvement from my pre-surgical condition. Yes, my life has been saved by surgery, but it’s an abstraction not a felt-improvement. Worse, my pre-surgical, non-heart problem -- fibromyalgia in my legs -- has not been fixed by surgery. My heart is strong, but my legs are weak. On the one hand, surgery was not expected to fix my legs, but - on the other hand: since fibromyalgia is a medical mystery, I hoped that surgery might mysteriously fix it. It didn’t. Anyway, I need to find a fibromyalgia forum. As a heart-valve-surgery survivor, my turning point arrived at 11 weeks post-surgery.

Relapsing today into pile of worn-out flesh, I want to go out and do things but can't find the drive. So, I sit in my chair reading a horror novel and vegetating. Sometimes it feels like the surgery not only removed my bad valve, but also my inner energy. I feel tired and despondent. (Note to pre-surgery patients: I tend to journal when I'm not feeling good: it's therapeutic). Almost 10 weeks from surgery and, though the complete mental/physical meltdowns have ceased, I'm still experiencing days where I'm very tired and overcome with malaise. Taking the long view, from surgery till now, I've certainly been improving physically but it's been very uneven and inconsistent. Some days I feel like I'm 70% recovered, other days - like today - it's down to 40%. Things annoy me easily. When people call, I try to be upbeat, but when I get off the phone I realize I haven't received any sympathy for what I've been through now that I'm "recovered." If I spend too much of the conversation on my "condition," I sense their excruciating boredom. Unfairly, I blame their insensitivity. Further, to the naked eye, I look like a semi-normal 68-year-old. My shirt covers my tell-tale incision and, except when my legs cause me to limp (fibromyalgia), I appear normal. While it's sometimes nice to hear, "you look the same," people don't understand that I don't feel the same. The experience of surgery changed me physically for the better, but mentally I'm not so sure. I was asymptomatic before surgery - playing tennis and swimming and working; now post-surgery I'm symptomatic - not playing tennis or swimming and having little desire to work. Yes, today is frustrating.

My mental state is recovering much slower than physical almost 8 weeks from surgery. I've been doing Cardiac Rehab for 2 weeks, still taking metoprolol, coumadin, and tramdol. (My pain isn't significant and I probably could stop tramadol, but I think it helps me sleep. While no longer experiencing fatigue meltdowns, I'm feeling bored with everything I used to enjoy and annoyed with everyone who happens to be around me. It takes all of my energy to answer normal questions without being sarcastic or mean. I can't stand hearing the phone ring because I might have to talk to someone. The people at cardiac rehab get on my nerves. I can't stand the site of my incision or any reminders of surgery. I'm wondering when you OHS veterans started using anti-scar cream like Mederma and when you started more active things like bike-riding, swimming or tennis?

Five weeks from surgery, but experiencing daily physical/mental meltdowns. By most measures my recovery is going well: normal BP, oxygen, INR, minimal pain and the start of cardiac rehab in a few days. But every day around 5 PM I experience extreme exhaustion both physically and mentally. All I want to do is go to bed. But it's only 5 or 6 PM. I force myself to stay up till at least 10. I sleep off and on for 7 or 8 hours, but experience the same meltdown. Today, I slept almost all day off and on and had to force myself out of bed. A doctor said it might be a side effect of metoprolol, but wanted me to tough it out. I'm really confused. I seem to be getting weaker not stronger. Is it possible that it's an effect of Metoprolol?

I hate to whine, but the more good news I get about my physical recovery the less good I seem to feel. Yesterday, a 5 hour trip to hospital for chest x ray and other tests and meetings with doctors and nurses resulted in a positive evaluation of my condition. Almost 4 weeks post-surgery, I'm controlling mild pain with tramadol. I was told I could start driving next week and start cardiac rehab the week after. Physically, I'm good, mentally I'm not. Tired, depressed, irritable, bored, unmotivated and anti-sociable describe my state. The thought of interacting with a stranger over cardiac rehab for 12 weeks is daunting. It takes all my will power to get out of bed. Yesterday, my cardiologist took me off beta blockers and, as I am writing this, he called to say he wants me back on beta blockers because of my mildly enlarged aorta - a problem I didn't think I had. I realize no one can really help me and that it's all about my attitude, but just venting a little maybe helps.

Surgical Experience “Like getting hit with a cruise missile” is one way to describe Open Heart Surgery. I’ve never been hit by a cruise missile, but I’ve just had my aortic valve replaced with cow tissue via mini-sternotomy. I like the melodramatic description because it implies I’ve survived a traumatic impact. It also counters the notion - promoted by the ignorant - that OHS is routine & often voiced to those facing surgery as support which it isn’t. “Routine” implies unvarying, habitual or unimaginative so doesn’t apply to OHS. Dr. Patrick McCarthy performed my isolated AOVR at Northwestern Memorial in Chicago on May 18. Two weeks out and, so far, I’m not experiencing any complications and have started minimal physical therapy. I’m 68. I’m not religious and generally pessimistic. But I was able to put positive faith in my surgical team and small support group through meditation, music & the encouragement of many people on this amazing site. I had been facing inevitable surgery for 2 years so had plenty of time to be both terrorized and to get used to the idea. I kept calm with a combination of working, music, meditation, Xanax & marijuana as well as the positive support of my wife and two children. The night before surgery we watched the movie “Rocky.” Yes, it’s kind of sappy, but I wanted something nostalgic and uplifting. Besides, I’m Italian and like the idea of “The Italian Stallion.” My surgery started at 7 AM, ended at 9:30 AM. I spent two days in ICU, 3 more days in a hospital room. All wires, drainage tubes, & IVs out by end of ICU stay. My greatest fear involved waking up on the breathing tube and being kept on it for days. It didn’t happen. The intubation tube was removed 20 minutes after surgery. Like many other OHS people, I don’t remember the tube or the removal process and didn’t have a sore throat afterwards. I did wake up in pain, but had set my mind set to tell nurses that it rated a 10 no matter what. I wanted all the pain relief possible. For me, the waiting wasn’t the hardest part, the surgery was. The first night in ICU was definitely unpleasant but not unbearably torturous. My wife stayed for a long time rubbing my feet for comfort. The ICU nurse was attentive and empathetic. Falling in and out of consciousness all day and night, while getting poked and monitored, I listened to meditation audio on my iPod as well as music from playlists I created for the hospital -- some ambient electronic, some 1960s pop music from my youth. My biggest post-surgical reaction surprised me. I had almost non-stop hiccups from May 18 until 10 days later. These were mildly painful and very irritating. I even hiccupped in my sleep. At first doctors thought they would go away by themselves, then they gave me a drug that didn’t work. But Thorazine, a powerful anti-psychotic & hiccup remover, did the trick. I’m now almost three weeks out from surgery. I’m taking a beta-blocker, Coumadin, a little Tramadol, and an over-the-counter stool softener called Peri-Colace. Food I used to like tastes terrible, but my appetite is OK & my bowels are moving (yea!). Though every experienced OHS person talks about the post-surgery exhaustion, I didn’t really believe it till now. Aside from tiredness, I’ve had bouts of nausea, malaise, and anti-sociability (except for those very closest to me who really stepped up). My shirts - rubbing against my incision - hurt. I’m trying to listen to my body and accept its dictates - go slow, be patient, but keep pushing.

Last night I slept off and on for 16 hours. (Is Christmas here yet?) This helped the various things that were bothering me, especially constant hiccups. I got myself up to walk around the house, use spirometer, shave and shower - exciting! My current support team - wife and son - have been great though bored to tears I'm sure. Hope all of you had fun holiday.

I've already posted on this without hearing from anyone that experienced something similar: Surgery on May 18, Tubes out by May 21, Home by May 23. But I've experienced almost continuous hiccups. Theories include that they were caused by breathing tube, but that was out 20 min after surgery and I feel no irritation or soreness. I've tried a variety of home remedies. Occasionally the hiccup results in my gasping for air. I even do it in my sleep. I'm taking tramadol (50mg/4 hours) and have little pain. A nurse doing INR testing in my house, said to call her tomorrow if situation hasn't improved. Any similar experiences or any solutions out there? All else going well enough.

AVR with mini-sternotomy completed on May 18, home on May 23. I will not say that waiting is the hardest part, but a lot of my deepest fear were not realized. First night was the worst, of course, then things got better. Will provide more details another time. As I mentioned, I have constant hiccups. There is slight pain with this, but I would say overall my pain has been reduced to 2 on scale of 10. I'm taking tramodol every hours. I'm not nauseous. Have a strange pain above my right eye that bothers me. My support team of three has been great: patient and nurturing. I'm very grateful to my heart brother and sisters for their support, encouragement and information. Love to all and best of luck to those moving towards surgery and those on the other side.

I just got a call from the surgeon's nurse practitioner confirming that my surgery is set for Monday May 18 7 AM. I'm glad it didn't get moved and that it'll happen first thing. I asked if the surgeon Dr. McCarthy would talk to me before the surgery and she said no, his team would. I realize that he's a great surgeon, but I expected to see him and thank him or get some encouragement. I guess it's so routine that he doesn't have time to speak to me, but I feel weird about it. Anyway, the day approaches and I can't wait to get it done. Thanks to all of my heart brothers and sisters that shared your feelings and experiences.

I'm a week out from OHS/AVR. My mindset is mostly calm determination, cautious optimism, mild anxiety, and then occasionally abject terror. Thanks to lots of suggestions from OHS veterans on this site, I feel like I'm as prepared as possible. I'm now thinking of what to do on the night before surgery. I do wonder if any of you did anything special on the day/night before surgery. Did you have close family there? Did you have friends? Did you have a party? Or was it a somber occasion? Did you try to make it as "normal" as possible?

I had pre-surgery meeting with my surgeon's nurse practitioner and a member of the anesthesiologist team. They patiently answered my questions. For the most part, this was reassuring (except for the 1% possibilities of things going wrong.) One thing I found odd: the surgeon would not speak face-to-face to my waiting family after the surgery, rather he would phone from the operating room. He would see me/them while I was in ICU. I found this odd. I've been to several surgeries and it seems like its a tradition for the surgeon to reassure the family face-to-face right after surgery. Obviously this doesn't impact his surgical skills, but it seems like an unusual practice. Am I wrong?

My closest relatives (wife, son & daughter) and very closest friends know about my upcoming surgery. But I wonder how widely to spread that information. Part of me is so self-absorbed and withdrawn that I want to keep things on a need-to-know basis with others; yet, part of me is so attention-craving that I want to tell anyone that I've ever met. I realize the answer is somewhere in between. I wonder if you OHS-veterans could share your approach.

Two weeks out from surgery. I'm mostly maintaining a level head, thinking about loose ends, and acting/feeling "normal." But I'm also freaking out between extremes: over-confident, strong, and wildly positive to fearful, weak and negative; guilty about the impact my OHS is having on loved ones, then resentful that they're not doing/caring enough. I feel like my situation deserves center-stage, but then I want to withdraw from everything. As say, overall, I'm doing OK and will now go out for a bike ride on a pleasant day.

My surgery is 3 weeks away. I'm scared, but I revised my list of stuff my small support group is bringing to hospital for me to possibly use during hospital stay. I made this list from things mentioned on this site, Adam's book, and my own additions. I'm overdoing it so I have options. I've never had surgery. Any other suggestions? Afrin Nose spray - for stuffy nose Digital entertainment device (s) with (noise-blocking headphones) and charger. Books or digital reader Cell phone and charger Note paper and pen Picture of Loved Ones Pill-box week of pills Pillow (for a touch of home) Robe and/or something loose fitting for under hospital gown Toiletries (including wet wipes) Sound Machine (battery op sound generator to block machine noise with "ocean" or "Rain."

Tom Fitzmorris provided this list of post-op pain relief in descending order of potency. I wonder if any OHS veterans have additions to this list or feedback on these options which I assume all come in the form of pills: 1. phentenol (more powerful than morphine) 2. morphine (used rarely; see phentenol) 3. ocycodone (has tylonol in it) 4. tramedol 5. something similar to demerol 6. tylenol

Lately, I've felt some anger toward my more distant family and friends. My immediate family - wife and 2 children - have been great: patient, thoughtful & preparing for my hospital stay and recovery. But I have felt annoyed at my much older brother and his five children (all in their 50s) and some of my friends. They've known surgery is on the horizon for me (now 4 weeks away), but only one (not my brother) has called to just find out how I'm doing. To me, they seem either insensitive to my fragile, pre-surgery state or simply viewing my surgery as so routine that they need not bother themselves. I guess we're just not that close. I find myself negatively categorizing my family and friends as to whether they've called or not, creating a kind of hierarchy - from best to useless. I'm not talking about joining me for a big pity party, but rather just a call to say "how are you doing?" Adam Pick, in his book, encourages surgery patients to tell people directly how they can be supportive; but, I don't think it's up to me to solicit support directly or indirectly. On the other hand, I'm trying to avoid any negative feelings so my annoyed attitude toward them feels wrong. I'm sure they care, but some just aren't showing it.

I am definitely confused about the so-called "Miami method" of minimally invasive AVR. This seems like an alternative to OHS, yet I was told that alternatives to OHS were only recommended for patients in poor health & were too frail for OHS. Any comments on the so-called "Miami Method" as an alternative to OHS?

On a beautiful spring day yesterday, I played tennis with Maureen for the first time since last year. With valve replacement in 5 weeks, I still don't think I have symptoms. I don't notice any change from a year ago. Yet, my echocardiogram & MRI numbers/images have convinced 2 cardiologists and 2 surgeons that the time to do this is now. I accept it. I've taken the leap of faith & scheduled it. I'm compulsively preparing for it. But I can't get rid of the undercurrent of doubt that the numbers are wrong, that I'm an exception, and, that after the discomfort of surgery and recovery, I'm not going to feel any better and maybe I'll be worse. It's hard to get rid of the knot in my stomach that means I'm not fully invested in the process.

Even though I'm getting a bovine heart valve, I'm told that I will be on blood thinner - Wayfarin - for 2 - 3 months. Is that a normal precaution with a tissue valve? I've read that if you're on blood thinner, you need a home INR Tester. Do you experienced OHS patients agree? Any recommendations?

My lengthy wait before surgery (more than a month) gives me too much time to think/worry about problematic details of OHS. I'm wondering if anyone cancelled surgery when it got close and why. I realize that having a cold/being sick is a deal-breaker for surgery because that could lead to agonizing post-surgery coughing and sneezing, right? But I'm susceptible to my nose being stuffed without cold symptoms. i wake up every morning imagining that I'm waking up on a ventilator and concerned that I won't be able to breathe if my nose is stuffed. Am I over-thinking this? Is this a reason to cancel surgery?

How long after OHS did you need help? My surgery is still a month off but I'm trying to prepare for post-OHS. Reading Adam Pick's book, he says he needed help for 2 weeks. Many people on this site seem to have a lot of family and friend supporters. I don't have that many. I'm concerned about being dependent on 2 people for 2 weeks 24/7 and driving them absolutely crazy. I know everyone is different, but how long will I be helpless after coming home from OHS?

With my surgery still over a month away, I keep finding things to worry about. I'm deaf in my left ear and worried that I will be lying on my right side and not be able to hear nurses trying to get my attention to remove the ventilator. I know this is unlikely, but did anyone who is hard of hearing, have any problems in ICU?

I over-medicated myself to do the MRI so now I'm groggy. In addition I didn’t eat for a day and 1/2, didn’t drink for a day. I took a .25 Xanax in the morning, then 1.5 more a half hour before the procedure. They stuck me with an IV to deliver dye into my system. Some MRI machines look like narrow tunnels, while others are more spacious or wider. Previously I was inside one where my arms couldn’t move. This one was a little wider so I could scratch my nose or face. The tech, Randy, gave me a panic-bulb which I immediately tested to his annoyance. Unlike my previous time, the music system was working. It was nice having music to help pass the time and muffle the noise of the MRI machine, but the station played a lot of lame Top 40 rather than British Invasion/Beatles (that I requested) so it was kind of boring but better than emptiness. The tech talks quite a bit telling me to hold my breath then let it go. But sometimes he let me go too long holding my breath. He also failed to inform me of how long there was to go in the process which took a little more than an hour in the noisy tube. I had to keep asking him. My wife Maureen was in the room with me rubbing my feet and making her presence known so that was a huge help. The male tech was business-like and nice, but just wanted to get on with the process rather than discuss it. He also said my wife couldn’t take a picture of me in the machine after we were done. The only scary moment occurred when I dosed off and then woke up and opened my eyes and saw I was encased in a white tube. It was momentarily startling. But I quickly came to my senses before panicking. For those that haven't done it: The MRI machine is a large, cylindrical, tube-shaped machine. Your knees to your feet are exposed but the tube extends to the top of your head. The very noisy machine creates a strong magnetic field around your enclosed body and knocks the hydrogen atoms' out of their natural alignment. As the nuclei realign, they send out radio signals. A computer receives these signals, analyzes and converts them into 2D images of the heart’s structure. This image appears on a viewing monitor.

I wonder if any pre-surgical people have availed themselves of Northwestern's Behavioral Medicine Service? I think it's supposed to provide pre and post surgery psychological support. Any experience with this?

Being claustrophobic, I dreaded last year's MRI and put it off. It wasn't as bad as I imagined and helped confirm my diagnose which I was in denial about. While I'm not looking forward to it this time, I'm less anxious about it. I spent some of today looking at various stories about PumpHead which of course added to my fears a little bit. On the positive side, I made some hospital playlists for my ipod. I've been a music freak for over 50 years. My playlists include quiet ambient music by Eno (Music for Airports, Discreet Music, etc), meditation/self-hypnosis tracks, and nostalgic music from my youth. I read somewhere that getting healthy can be helped by putting yourself into a youthful frame of mind when you were actually healthy. I don't know if there's been any research into this, but I gravitate toward anything that helps me thinking positively.