Joseph's Journal

Update on progress, in the last few weeks I had my final post surgeon followup, handoff to cardiologist for monitoring, and just started rehab.
Surgeon reviewed my x-rays and was very happy with progress. Overall both valves sounded good. I hadn't realized that the mitral valve repair, also used a sewn in ring, but difference from the aortic valve, is the heart grows over the ring as it heals. I also had my staples removed (slight 35 stings) and have an official zipper scar! Interesting change from last time (glued incision), the overall scar was much less thick and bumpy (keloids), so although the staples leave a “zipper track”, the incision is much smoother. (Right after surgery the staple incision is much worse looking, with blood clots and inflammation). One other item of note, once home, I broke out in a severe rash and hives everywhere that had skin broken (incision, chest tubes, IV punctures etc). Nurses think it was either reaction to Dove soap or some residual detergent in my clothes. Hydrocortisone cream, Aleve oatmeal baby soap and Benadryl were recommend to help clear things up.
Cardiologist did some adjustments of meds and kept me on blood pressure medicine for an additional 90 days.
Sleep is still an issue, with waking up and having trouble falling back to sleep. 1-2 Short naps throughout the day are still the norm (at least until I am back to work). For new patients, a couple of things that I went through, that doctor said were normal. I continued to lose weight the first few weeks then started to put it back on. I also experienced low grade fever (1-1.5 deg on and off for several weeks).
Overall, energy is coming back, and very happy with results. (And mostly sticking to the recommended diet!)

Hospital Stay Part 2:  I was in a brand new hospital, which was designed to be much quieter for patients (definitely something I noticed over last stay).  I still recommend ear plugs and eye masks for anyone staying overnight, once you do fall asleep, noise and lights jar you awake too often.
I brought ebooks with me versus physical books as well as earbuds to listen to music on phone.  I found that I read and listened to music more than watched the TV in the room.  That is personal preference, but you want to have some choices to distract you post surgery.  Have a blanket handy.  I did notice both in and after leaving the hospital, that I would have cold and hot temp swings (most likely due to various meds), having the warm blanket during the cold periods helped a lot.
I cant say enough positives about the Penn Hospital staff.  I had a tag team of nurses, PTs, dietitians, as well as the covering physician and my surgeon (Dr. Lawrence) checking in and monitoring me.  All were not only knowledgable and professional but very friendly and would go out of their way to make the stay less clinical.  Dr. Lawrence did an incredible job on the double valve operation.  Not only replacing the aortic valve and setting me up for a future TAVR replacement, she was able to repair the mitral valve rather then replacing it.  (PS The catering team was especially accommodating with extra deserts when asked!)

Similarities and differences from my first surgery:
Post Surgery in ICU:  I woke from anesthesia approximately 12 hrs after going under.  Similar to last surgery, I woke for brief periods, but didn’t remember much, other than asking for something to drink.  The night in the ICU was uneventful but I felt less pain this time around, I drifted in and out throughout the night.  Once I was released from the ICU, they wanted me to stand up, and were surprised I was able to do so on my own.  I did feel more energy after this surgery, and i suspect it was due to my initial conditions going in, including struggling with day to day activities and breathing difficulties.  
Hospital Stay:  I felt more short bursts of energy overall this time during my stay in the hospital, and although pain was present, it was lower grade, but more constant. The various tubes and IVs were more uncomfortable this time around and one drainage tube in particular had difficulty staying tightly in.  
Another noticeable difference, was my short attention span and quick onset fatigue.  One potential cause was during surgery I had almost 20 lbs of fluids added to my body, that needed to come out.  I was on several meds to help this process.  I noted feeling brain fog and just generally being out of it during the removal time, and the staff adjusted to a slower rate and even added some fluids temporarily back in.

Heart Valve Replacement - Round 2
I recently had to go back in for replacement surgery of my Aortic valve.

The estimate for the bovine valve I had previously installed, was 12-15 yrs, and I was at the 14 yr mark. My EKG and stress tests showed some issues, starting a year ago, with expectation that valve would fail in “the near future”.
In December, I started having some more serious symptoms (breathing difficulty, losing weight, out of energy). Although the tests indicated that the valve had issues, I had a severe bronchial infection which masked the underlying seriousness of the valve failing. After clearing the infection, I went for additional tests, including a cardiac cathetreization test, which showed the replacement aortic valve had failed, as well as mitral valve issues. My cardiologist and surgeon agreed I needed immediate surgery, which was scheduled at the Hospital of the University of Pennsylvania.
My new surgeon (Dr. Kendal Lawrence) trained under and assisted my previous surgeon (Dr. Bavaria), and was highly recommended. Dr. Lawrence said I may actually need 2 valve replacements, but she would make that decision once she saw the condition of the mitral valve. She replaced the aortic valve with another bovine valve, and was able to repair the mitral valve successfully.

Was wondering if anyone had done the P90X Exercise Routine After having Valve Replacement. Some people at work are raving about the workout and was looking to try it. Appreciate any thoughts. Joe

Thought I would share how I celebrated hitting the 1 year mark, and feeling fully back to normal. I had a \'bucket\' list item to do bobsledding in Lake Placid for a number of years. When I was in the hospital last year, one of my buddies made me a deal, if I survived the surgery on the 1 year anniversary, he would take me to Lake Placid to try it. I had a blast! Weather was minus 10, but was able to do both Skeltor and Bob Sledding. Nothing like seeing how a new valve performs that riding a small sled down a 1 mile track at 60 mph!

I wanted to give everyone an update on my progress. I saw my Cardiologist and Surgeon recently for my 1 year checkup. Both thought everything looked great and that I was back to normal. Echo, X-Rays, and other images all showed heart was working normally with good refraction rate. My heart rate was good as was blood pressure. Overall the consensus was I was back to normal and could go off and do everything I used to, in fact was told to push myself a lot more exercising! The testing showed a tendency to quickly jump up in heart-rate when exerting myself, but this was offset by how quickly my heart-rate plateaued and dropped. Both the surgeon and cardiologist felt this was just my bodies way of adjusting to the valve and was not something to be concerned about. They also felt that this would lessen over time and with more intense exercise. The last year has been an incredible journey, and very glad to have the support of family, friends and the people I have met here. Thanks to Adam for putting this site together, and to the community for encouragement and tips before, during and post surgery. Joe

Saw my Cardiologist for checkup this week, and he was concerned about my heart rate being too high. He is going to monitor for a 24 hr period, and decide about how to handle it (increase the drug I am on, or switch to a new one). Unfortunately he curtailed increasing my activity level or starting rehab, until that is resolved. I also reduced my caffeine intake (mainly chocolate and ice tea) to see if that would help to reduce my number. On the plus side, he thought the heart sounded great, and ekg results looked good. It looks like some of my internal stitches (I didnt know I had any) are coming out thru the scar. The incision was glued on the outside, so not sure where these are coming from. I am checking with the hospital to see if this is normal or an issue. No pain associated with it, but looks a bit scary to see several threads poking out through my scar. Something that might help recent patients. I started doing some Tai Chi at home a few weeks after surgery, and found that seemed to ease some of the chest pain. It is very gentle movements, so no concerns about over excursion. Doctor said Yoga was not a good idea (yet), but Tai Chi sounded fine.

For My Fellow Patients, Followup on Calcium restrictions. My Doctor said that excess calcium in your system, could reduce the life of a tissue valve. It tends to build up on the valve leaflets faster than other areas. He was not concerned with food based calcium, since it absorbs quicker and since it is very hard to get large doses from food. The concern was on supplements, especially mega-doses. Not sure if this is something that would be different for women than men, but wanted to share the information. Joe

Had follow up with My Surgeon this week, as well as some chest x-rays and echocardiogram. Heart Looks really good, Heart has returned to normal size, and blood flow out of the heart is back to normal.  Valve looks good and is pumping nicely. Lungs are Clear and Ribs are healing nicely. Pain/Stiffness is expected to last a few more months but mainly when doing movement. Fatigue is normal, but was told this will gradually diminish as I start to be more active. I am on a limited exercise program starting in May, including running, biking but no heavy lifting or twisting (racket sports etc) till at least Sept. The surgeon wants me to stay on heart blood pressure reducing medicine (Lisonprol) for at least a year / possibly life (we Are DISCUSSING THIS), as well as reduce my Diastolic Pressure to 60 and Resting Heart Rate to 60 (Again we Are discussing this, I have never been that low on Blood Pressure). Currently I am in the low 80s for both Only diet restriction is calcium supplements, This Includes Rolaids so have to find another way to deal with Acid Ingestion! The Calcium restriction and Blood Pressure/Heart Rate Goals are designed to help maximize the life of the new valve. Overall Positive visit! (the day after my visit, I slipped on the Kitchen floor and landed on my Chest, Not a Pleasant Experience and hopefully no long term damage)

I met with my GP and Cardiologist in the last few days. Both said I am healing nicely. I mentioned how I still get fatigued very easily, and don\\\'t sleep well. Neither was concerned about this, and told me it is not just the healing from the operation, but side effect of some of the medication I am on (primarily the blood pressure reducers). Both seemed to think I would start to notice a big difference once I went off the medication. I talked to the Cardiologist about joining a rehab program. He thought it was a great idea, so need to find one near my home. Was told I wont be able to start till after surgeon gives me the go ahead, which will be one of first questions when I see him. Friday was hit with severe nausea and throwing up. Not sure the cause, doctor said it could be reaction to the medicine over time or just a stomach flu. I did find something that worked for me while going thru it. TV and reading weren\\\'t distracting me enough, and trying to sleep seemed to focus more on the pain/sickness. I decided to immerse myself in time consuming project that didn\\\'t require a lot of thought. I had quite a few digital pictures to edit/organize, so spent several hours catching up. This worked, it didn\'t cure me, but while focused on the project my brain seem to ignore how I felt. Managed to do two 30 mins walks on Sat (including one at the mall), but that and several hours of visitors caught up with me Sunday. Pretty much just sat in my chair all day Sunday! Tip for other patients: I discovered that pressing on my upper chest/rib area with several fingers, seemed to make coughing a lot easier. It works better for me then the pillow method, and seems to stop almost all movement. If anyone wants to try it, the points are roughly 2 inches below the collar bone, inline with your cheeks. Good for coughing and somewhat for hiccups (although nothing seems to help with sneezing pain).

Went off Oxycotin on Sunday. Found this to be a mixed blessing, I don\'t miss the brief bouts of nausea or of the chills that usually accompanied it during the first 20-30 mins. On the other hand, it did help me to sleep, and the pain (more of a low grade constant pressure on my collar bone/upper chest area) did increase when going off the drugs. I was given a transition to Tylenol 3 to help with the pain, but gave that up after a trying it for a day or so. I found it didn\'t really diminish the pain, and it made me feel kind of spacey. Like walking around in slight fog. Since going off the pain killers I have found sleeping very difficult. Day time is not as bad, and walking and doing the breathing exercises, seem to either diminish the pain or distract me from it. I also discovered several new ways to experience pain, things that I took totally for granted. Last week it was hiccups. I didn\'t realize that something that minor could hurt that much. It felt like things were moving that had never moved before. Late the other night, was watching a sitcom, and let out a laugh. This was huge mistake, at least without having my heart pillow handy. Whoever said \'Laughter is the Best Medicine\", never had open heart surgery. Some other things that cause immediate reaction in ribs/chest are Yawning and sneezing. I learned to keep the heart pillow handy at all times, and recommend it to future patients. You never know what might cause you to need it. (PS, Not sure why, but Yawning with the pillow, actually feels good after a few breaths. Maybe it opens the lungs more? Just don\'t try without the pillow!) On final note, I think I am developing severe case of chair butt. I didn\'t know your butt could get sore from sitting (and considering I used to do office work on computers I did a lot of sitting!). Sitting and sleeping in recliner seems to have that effect after a week and a half. I did try a nap in the bed today, about an hr, sleeping on my side. This worked well, shoulders were a bit sore, and I rotated from left shoulder to right shoulder half way thru. Weird dreams, including being on gurney on way to operating table and being banged in doorway while being carried and falling off gurney. Either flashback to surgery while knocked out or my shoulders were talking to me in dreams.

I run out of pain killers tomorrow. Doctor does not want to renew my prescription. Not sure why they seem to keep pushing me off them, hopefully wont be too bad. I was able to get a Tylenol prescription to tide me over while I recover. Nurse seemed to think 5 days after coming home was plenty of time to adjust! Pain is less, but more distributed (my butt was actually sore this morning!) Also started feeling ribs move on thur, which is very very weird feeling. Not sure when they stop moving, but cant say it \'feels right\'. Today had my first real test of the new and improved heart. My assistant (girlfriend) accidentally let the dog out, who chased the mailman. Being the only other one home (and dealing with a scared to death mailman), I actually ran down the steps, chased the dog, grabbed and dragged her back in by the collar. Heart performed well, although ribs and chest are screaming at me. I think adrenaline actually was good for me, Other pain seemed diminished, so may have to try this again - NOT!!!!!!

Some short answers to Frank and Penny Frank, they did glue my incision. The Glue, seems less noticable than zipper stitches, not sure if scarring is less, but looks like it at moment. Plus I hate having stitches removed, so highly recommend it. I was a bit scared when the glue came off while gently washing the incision (and trust me I am very light handed in rubbing the incision). About 1/4 inch popped off, no bleeding though, and nurses werent worried about it, so may be \'normal\'. Last Minute Advice Penny had asked for some last minute tips or things I/We didnt expect. Here are some brief thoughts Family felt they weren\'t quite prepared on how I would look coming out of surgery. Surgery was successful, but due to cooling of body and trauma, I had grayish appearance to my skin. Catering: This is somewhat subjective, nurses felt I was very undemanding, family thought I was very demanding. Best advice I can give, is you will be in lot of pain, limited movement and drugged state, ask the family to understand this. Whether it is asking for drink of water, or handing you the remote that you cant stretch for, ask them just to tolerate for a bit. Not discussing if you should rest instead of watch TV, or whether you need the glass of water. You really are weak and things you take for granted wont come easy. I found trying to put a robe on and getting arm behind me difficult. My family was good about this, but still tell me I was \'tough\' to deal with! Things I wasn\'t prepared for: Thirst after surgery: I expected this, but with tube left in almost 18 hrs after surgery in throat, I felt my throat was cracking permanently. It took me about 8 hrs of begging the nurse to get piece of ice! What they will do, and I would ask for this in advance, is put lip balm on cracked lips, and some sort of medical germ killer on sponge (kind of like scope or listerine), which they rub on teeth and gums. Although it wasn\'t the same as water, it did help things feel better. ASK THEM TO DO THIS AS OFTEN AS THEY CAN. Noise:, despite ear plugs and warnings about beeping and noise in hospital, there is a lot of distracting sounds. GET GOOD EARPLUGS, and wear them whenever you are trying to sleep, or the noise reducing headphones with your iPod. It makes a big difference. Lights: Bring a eye mask. I didnt, but the hospital prefers to leave lights on in your room, and when they pop in, turn them on. Even the spillover lights from the hallway were bright. I think this would help to reduce that jerking from drowsy to outright awake feeling. Boredom: especially when no one is visiting. I had books, and TV as well as ipod, but found I couldn\'t focus long on reading. I think I have become too used to Tivo for TV so finding something on I wanted to watch was a challenge. For me the savior was ipod (music, med, books on tape etc), as well as when my family (finally) brought my smart phone. I could handle short text messages to friends, check email etc. (Note, things like this also serve as distraction to pain or uncomfort of tubes etc). Lack of Sleep: There are constant interruptions to your sleep, while they check your insulin (hated the finger blood pricks), IV tubes, blood samples, heart rate etc. The first few nights it was hourly interruptions. I put my foot down on thur and asked if the nurses could at least coordinate their visits and do several things at once. Managed almost a 2 hr stretch of sleep that night! You wont be able to stop the interruptions, but ask if they can coordinate a bit more. (Note this also applies to daytime, when I found it amusing as they had me trying to do PT/OT, take blood samples, take xray, feed me, etc all at same time. There I wanted a bit more staggering of things! Hope this helps!

Yesterday a nurse from the hospital visited me to see how I was doing. She did a checkup and interview to see how I was progressing. Status: Overall Good the chest wound is healing nicely, I was concerned about the glue coming open at the top of the incision, but nurse said it was ok, since wound was healing already. Heart rate and blood pressure all good. No sound of murmur and heart sounded strong. My right lung was not fully inflated (left was ok), so was told to increase the number of breathing exercises on the spirometer and to be more diligent with coughing. Overall she thought I was recovering nicely. I did get lecture on not pushing myself too hard. And (Mom reported Me) for lifting my laptop. Overall feel pretty good, didn\'t sleep well last night, and had some brief sharp pains in heart area during the night. Doctor and nurse felt this was nothing to worry about it.

I have had some questions asking how I picked my surgeon. The process I used was combination of recommendations from experts (gp, cardio), patients I knew who had heart surgery, as well as my own research into Drs/Hospitals. My Own Research focused on 2 areas, Ratings of the Surgeon as well as looking into alternatives to full blown chest open heart surgery. A number of hospitals and surgeons were focusing on procedures for minimal invasive Catheter valve replacement. Unfortunately the procedure is still in study and I am not a candidate for the study, so my focus shifted to qualifications of the surgeons and my connection to them. I interviewed with several, who were all well qualified. When I went to the Univ of Pa, I felt very relaxed with both the surgeon and the hospital. Even though they were large, and handle a high volume of patients, they were very well organized and the individuals I met were all very friendly and helpful. I met with Dr. Bavaria, head of the Dept. I had a very good feeling about him from the first meeting. He seemed to anticipate my questions, and didnt just treat this as operation for today, but how can we make it last. We even discussed going with the tissue valve replacement, so in the future it would be easier to do a Catheter type replacement. I think I was hooked, when he stated, \"I Consider it a Personal Failure, if I cant repair the valve and have to replace it. \" Joe

Glad to be out of hospital. It is much more relaxing and quiet at home, and just feel more comfortable. Sleeping as much as 4 hrs at once, although it is not a deep sleep. Learning quickly, to stick to the various prescription program time frames, especially the pain killers. Recovery seems to in starts and stops. I have energy at times, but lose it quickly. I seem to have appetite in the morning, but not much throughout the day. Some questions that maybe others have found/seen: I am sleeping in reclining chair while I recover. Waking seems to bring tightness in my chest. I found sleeping in chair upright reduces this, but have some slight swelling in feet, whereas reclining slightly reverses this. I alternate the positions but nothing seems to be best overall. Was wondering if anyone else had seen this?

I am at home, recovering at parents house. This week has been interesting, incredible, painful, exciting, different, pretty much every adjective/adverb you can think of. Lots of thoughts/feelings going on at moment. Very little sleep during week, but will try to get online to share more as I am able. Consensus from doctors is everything is well, what I feel is normal (they seem to think it was good when I said something hurt - again doctors and Engineers think differently). I want to thank everyone here for thoughts and support and especially thank my ghost writer (Dad). Joe

I was released from the hospital today. The ride to my parents house was a little tiring. Now i will begin phase 2: 4 to 6 weeks of slowly getting back to normal.

I did double therapy today, which caused a slight relapse. They alternated on and off with pain killers. Tomorrow they review the numbers and then decide on the discharge date.

They removed the remaining wires and tubes today. Some body and arm movements are still painful. I was told that if my test and monitor numbers are good tomorrow - and if I promise to be on my best behavior at home; that I might be discharged on Saturday.

They took the drainage tube out of the heart and stitched up the opening. As I continue to adapt my breathing to the new heart rhythm, my medications (especially the pain killers) are being adjusted. Sleeping is now in 1 hour increments. I have hot and cold sweats and am experiencing a slight fever. These are all normal and expected reactions. The only hookups remaining are the pacemaker wires and IV\'s.

They started me on small meal portions today. I walked a little, but did experience some dizziness and pain. They made some adjustments to my medications and pain killers. The Doctor will visit later today to see if the heart tubes can be removed. I was told that this will cause some pain and I will feel some exhaustion. Once I\\\'m disconnected I will need to relax and learn to breathe correctly in conjunction with my new heart valve.

This afternoon I was transferred to a regular room. I felt a lot better, thanks to the removal of the breathing tube. Even though my throat was sore I was able to eat some saltine crackers. I still have the drainage tubes in my chest, insulin IV drip, pacemaker wires, carotid artery IV, and various IVs in arms. The chest tubes might be removed tomorrow. The heart has the feeling of wearing a very tight belt around my chest. Sleeping is very erratic, and comes in 20 minute cat naps. I just took my first walk. There was a little pain, but it felt good to move around.

They took me off the ventilator this morning. I\\\'m now able to talk and move about in a limited capacity.The Doctor confirmed that there was significant tissue damage to the aortic valve and an enlarged heart. Unfortunately it was not repairable and required a replacement. They were able to use a 27 mm tissue replacement. I am thankful to the entire medical staff of the U of P for their very professional and dedicated service.I hope to be moved a regular room today or tomorrow.

Registered at U of P hospital at 6:00 AM. Admitted to pre opt at 7:00 AM. Surgery started at 8:27 AM. Nurses kept my family updated hourly. At 1:30 PM the surgeon gave my family the full report. 2 of the 3 leafs of my Aortic valve were severely damaged, so the entire valve had to be replaced. A 27 mm Bovine valve was successfully placed in the heart. Dr. B said this valve would be good for 15 years and any future operations would be the minimally invasive type. I started to gradually awaken in the Surgical Intensive Care Unit at 7:00 PM and found out that I would be on a breathing ventilator until the major sedation has subsided. If there are no complications by 1:00 PM tomorrow, I will be transferred to a regular recovery room.

Up in 4 hrs to head off for surgery. Everything is a go, started my fast, and Winter weather didnt delay anything. Spent tonight, having one last meal, kinda felt like bear going into hibernation, stocking up on fat reserves. Late lunch, meatball sandwich, followed by early dinner with family. Nice Italian meal to help hold me over. Spent evening watching Superbowl. (Griswald Vacation was favorite commercial!) So far, no real anxiety about operation, just ready to get it over with and move on with life. Not sure when I will be adding to this, but thanks to all for the well wishes. Look forward to chatting with everyone later!

This was another tough choice, probably even tougher then where to get surgery, what type of valve to chose - Mechanical or Tissue. Both had Advantages and Disadvantages. I loved the durability of the Mechanical Valve, possibly lasting the rest of my life, but was not thrilled with taking blood thinner every day for the rest of my life. (Being a guy, I think there was also a coolness factor with a titanium valve, kind of like being the $6million dollar Bionic Man!) The tissue valve, eliminated the need for blood thinners, but also had shorter life. Also a bit weird to think about a Pig or Cow Tissue replacing existing heart valve. I was not excited by either choice, not wanting to take the blood thinner for 40+ years or have a 2nd valve replacement in as short as 8 years. In the end, I chose the Tissue Replacement. This is a personal choice and, for me, the diet monitoring, periodic blood testing, consistent eating times (Doesn\\\'t happen in NYC), and restrictions on activities - (anything with a helmet, including mountain biking) not being recommended with the mechanical valve/blood thinner, were the deciding factors.

Looking forward to the upcoming Surgery. 2 days! Had my pre-admission test today (which seemed to consist of just confirming my blood type). Time has flown by. Everything packed for stay with family and only glitch on horizon is the Blizzard blowing thru this weekend. Symptoms: Besides the standard chest pain, and easily out of breath (climbing NYC Subway Stairs are easily my favorite), I have been getting other unexpected symptoms. Weight gain is probably the most annoying, not sure if this because of lack of exercise or just one of the fun things to go along with poor blood flow from heart. Some other fun finds: falling asleep at odd times, (particularly after eating), getting nauseous, acid reflux, frequent headaches etc. Thanks to all for your support! Hoping to be back online in No Time!