Joseph's Heart Valve Journal

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 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!