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Good Morning!!
It is now 11+ weeks post surgery. I am over half way through cardio rehab and one week into wearing the heart monitor sent by the rhythm cardiologist.
Things are happening, very subtle things. It is no longer the drama of immediate post surgery. I have not been writing because of that. The thought process led me to post because the focus of this blog was/is to walk someone through what it is like to go through the pulmonary heart valve replacement. That includes 11 + weeks out.
Last week I had a 20 second melt down while mourning the people I never met with the same valve that needed replacing and never received the proper diagnosis to treat it. It is frustrating to realize a diagnosis is all that stands between living and dieing. The doctors I have had conversations with outside of cardiology do not know the symptoms of pulmonary heart valve failure. Two of my prior cardiologists missed the diagnosis. It is so fixable. It is so missed by those who should be the first line of discovery.
Cardio rehab is an interesting melting pot of people recovering from more forms of cardiac trauma than I knew existed. It is interesting to listen to how each person got to the program. No two stories are alike.
Cardio rehab has me discovering what it is like to use muscles that have been dormant because my heart was not able to support activity. My one advantage is the yoga: balance, strength and muscles. The major challenge I am having with cadio rehab is skeletal below my waist. The worst of it is between my toes and ball of foot and shin (shin splints). Today I will go to a local running shoe store to see if there is a cross training / walking shoe that will help me through the rebuilding of these muscle groups. On the positive side, years of non use means the wear and tear expected on someone of my age is not there.
Cardio rehab is an hour of monitored execise. 35 minutes split between 2 pieces of cardio equipment. These are tread mill with elevation changes, stationary bike, recumbant bike with handles and a stair climber. This is followed with stretching, free weights and cool down. All is documented via electrodes and a portable heart monitor.
The heart monitor arrived last week I have been wearing it 24 / 7 for a week. I will have to wear it until September 10. It is to verify if I have any atrial fibulation, now that I have been off Amiodorone for a while. So far the only time the monitor has gone off I have had an electrode malfunction.
There are 3 kinds of electrodes. Two kinds came with the monitor. The kind I was started out with slips off when I exercise. It is supposed to be good to use for up to 3 days. That is not happening if I am to continue cardio exercise. The other kind 'red dot' is for active people. It sticks really well.
The location of one of the electrodes is on the left side of my chest on the lowest rib. This is also new skin based on last year's radiation. The 'red dot' electrode is too sticky for this area. It became raw.
So.. a telephone call to the monitor people to ask if I could change the location of the electrode while my skin healed. (They will also be sending me a supply of hypo-alergetic electrodes.) I was told dropping the electrode location an inch below my rib was fine. I did that and the monitor went off every time I stood up or sat down because I wear the monitor clipped to my waistband, right over the recently dropped electrode. This was discovered at work and the only back up electrodes I had with me were the 'red dot's.
The plan is to wear the blue electrodes, replace when they slip off and only use the waist clip during the day. At night I will sleep with the monitor on the lariete around my neck and the monitor semi immobilized with a snug tank top.
The new electrodes just arrived. Now I have to figure out a new plan. 'Will let you know how this goes.
Friday July 15, 2011:
The company nurse responded to my email to return to work. I have to be checked out by the company doctor. He is not available until Tuesday afternoon, next week. That puts me returning to work on the following day. They also want a list of the medicines I am taking. That has been sent via email.
I saw my cardiology rhythm doctor on Wednesday. Great news. I went into the appointment with the intention of coming out of the appointment with a plan for reducing/eliminating Amiodorone from my morning Rx list. There were a number of options presented by the doctor. I chose the option to stop taking it immediately. It is to de-tox from my system over the next month. A heart monitor will be sent via mail to wear for the subsequent 30 days with a followup appointment in mid September to determine if the elimination is to be permament.
Amiodorone is used to over-ride atrial fibulation. This is a common side effect of the surgery I had. The doctor said for ~70% of the people who have this after surgery it goes away. I hope I am one of the 70%.
Amiodorone has side effects that warrant a size 14 font - 3 page explanation of side effects. Lliver damage, heart damage, eye damage, skin discoloration into the blue/grey spectrum. It is a drug used when NEEDED and stopped ASAP.
I am now physically beyond where I have been for a long time. It is amazing what I can do. Yesterday I did a triple event in the afternoon after a full day. Cardiac rehab., where I went beyond the limit of Wednesday. I am now mid-aim for cardiac rate..... Rehab. was immediately followed by yoga in a nearby town. This was the first time since before the surgery. I have to go carefully while my breast bone is healing. Everything else is where I left it. In fact.... my core muscles and breathing are stronger than before. (Could it be that spiro-blah-blah-blah-ometer?) Then on to the church league softball game.
The photo is a dry run for a cooking contest in late September. Red and green can come across as Christmas-y. I think it works.
My recipe has been chosen as a finalist. The theme is 'add cranberries, add zing'. I put together the display for the contest on a day there were no cranberries in the house. The photo will be printed off so I have something to go by on the day of the contest. A red fork will be used for consistency in the competition.
The crackers were made from whole wheat tortillas cut with cookie cutters and toasted in a dry fry pan. I'm thinking cranberries frozen in ice cubes, floating in a cup of 7-up. The recipe is to be guarded until after the competition.
The plan is to post a follow-up to the September medical checks.
Updated 9/25/11
The cooking contest came and went on Friday September 23. I actually placed!!! 3rd place earned a $50 savings bond donated by the local bank and a sauce pan donated by the local distributor.
Here is the recipe:
15 oz can of white beans rinsed and drained
4.5 -5oz can of tuna in olive oil.... DO NOT DRAIN
1 1/2 C chopped celery
1/2 C dried cranberries
1/2 C chopped onion (Medium)
1/8 t black pepper
1/4 - 1/2 t salt
juice of 1 lemon
Toss all ingredients together and serve immediately, or refrigerate until ready to serve. Best eaten the same day made.
Monday July 11, 2011:
Above is my loom set up with the castle backwards. The castle holds the 4 harnesses and the levers for raising and lowering them. My loom dismantles for easy threading and flat storage. Now I have to reach over the castle to raise and lower the harnesses.
My cousin sent me a link to a UW auction site that sells excess supplies as their classes change. I bid on a floor loom that got too expensive to justify. Just as well. I am having trouble setting up the table loom correctly. The site is: https://mds.bussvc.wisc.edu:443/swap/search.aspNow for good news. Today was the appointment with the surgeon. He has released me to return to work on Monday July 18.
I have spent the rest of today setting up the next 3 weeks of cardiac rehab to correspond with my work hours and setting up my work hours to correspond with the cardiac rehab. Did I mention my surgeon wants me to complete to program? It will require that I begin work half an hour early to leave half an hour early on the three days a week I have rehab.
Cardiac rehab is making my muscles ache. I am gimping around. Today, after rehab the weather had turned to drenching rain. I rinsed the sweat off on my way to the car as I passed people going into the building with their umbrellas.
The surgeon told me I would be able to return to full upper body strength sooner if I focused on increasing free weights to 10# at cardiac rehab. That would develop the support muscles to the collar bone and get me back to complete yoga sooner. Let's see how that goes in the remaining 3 weeks of cardiac rehab from the 3# weights I am using.
The doctor kept repeating 'perfect, perfect, perfect' as he read down the list of stats on the medical report.
I reduced my aspirin by half today and then let my surgeon's nurse know. I have a few bruises that I don't remember getting. That is a sign that I am over-medicated with blood thinner. Been there before.
Don't expect any more postings for this topic. I told the doctor I hoped never to see him again, after I told him he did good work.
Friday July 1, 2011:
It is one month from the pulmonary heart valve replacement surgery, today.
Monday was the first day of cardiac rehab. It meets 3 times a week. Yesterday was the third class.
I was hesitant to push my physical limits based on last Friday. They constantly monitor my heart rate and stream it immediately to monitors placed throughout the exercise area. It took me a while to figure out which posting was mine of the half dozen people in the class. It looks so normal compared to what I've seen in the past.
The difference a few days made in healing. I am muscle sore. That has been rare in the last few years. More often than not I would be fatigued the next day and spend most of the day reserving energy. This is new, and I think I like it.
Saturday June 25, 2011:
I have been pushing to see where my physical boundaries are with the new valve. Yesterday I found my limitations. Whoa, did I find my limitations!!
Yesterday morning I decided to cut out a set of scrubs for Cassie. A simple top and pants.
The cutting went well so I decided I felt well enough to weed / thin out a flower bed. It is an unruly mixture of day lilies, tansy, bishop's weed, wild sunflowers and Japanese lanterns. Last Fall I added half a dozen chrysanthemums to the front of the bed for end of season color. My goal was to give the chrysanthemums some breathing room.
Out came the tarp and nitral gloves and kitchen knife. I sat on the tarp as I pulled and cut out the plants growing out of place for over an hour. The discards were tossed onto the lawn where this week's mowing will turn them into mulch for the lawn.
The photo above of the weeds and flower bed was taken this morning from the top porch.
I drove to the store to buy a blade for the rotary cutter. Cassie came along because she wanted a piece of fabric to coordinate with a scrub top she is making. She suggested the JoAnn fabric store as we had been to the Hancock fabric store for the scrub top fabric.
This was an opportunity to remind me why I do not normally shop at this company's stores. They are designed as a maze with bottle necks wherever someone decided to give you an opportunity to see one more item the store is hawking. I always feel clostrophobic in their stores.
A trip to the bank ended my excursions for the day.
Dishes were done.
The VNA showed up and I was released from their care. She was amazed as my remarkable progress.
I was looking forward to sitting in the bleachers at the church league softball game at 6:15. (after a short nap)
I woke up from the nap in what can only be described as a 3 year old who needed another nap. Tearful, fatiqued to the point of ending up on the kitchen floor with my legs elevated against the kitchen sink. This is a yoga inversion that takes the stress off the heart. I stayed that way for a quite a while until I was rested enough to sit up, drink some water and eat some soup. Then I made my way on hands and knees to the living room where I rested sitting on the floor and finally onto the sofa.
Larry was a deer in the headlights during this. He came home from a 10 hour work day expecting to play softball. Neither of us made it to the game.
I forget I am still healing. My heart reminded me in no uncertain terms that I need to slow down a bit. Cardiac rehab begins on Monday. I will have to be intentional about slowing down.
This morning I slept in and then went to the Beliot road weight watchers weigh in to keep me up to date. It is the last time because the plan is to return to the site at work after the 4th of July shutdown.
Thursday June 23, 2011:
Yesterday was the first follow up appointment with my cardiologist. It included an echo cardiogram to establish a baseline post surgery. He orchestrated the test in person and examined the results from in the room and a distant location.
I like to check out what is happening on the monitor off and on during the testing. One of the views of the echo cardiogram shows color coded blood going through the valve. Past views were red on both sides of the valve. The view of yesterday showed red on one side of the valve.
My heart no longer sounds like me. It was sureal when I listened during the echo cardiogram in process. No whoosh, whoosh, swish. I cannot describe it because it did not sound right.
I was surprised by my nervousness during this. It seems the never ending medical issues of the past year are catching up with me when I least expect it. I was bracing myself for something along the line of, "Where did that come from?" There were no surprises.
My heart and lungs and stomach were listened to the old fashioned way. Ankles were checked for swelling The incision site was pressed to determine any tenderness or swelling. He found one spot.
I described the sensation of the incision as that of shoe laces holding together a shoe.
The job of a PA (Physician's Assistant) needs to be clarified to establish the importance of her participation in my medical care. You may think nurse with Rx writing privileges. The reality is so much more. She makes sure all the details are taken care of so the doctor can focus on his expertise. She understands everything the doctor does and has the ability to relate this to me (the patient). She also has skills to set up the details of a solution to the medical challenge when a direction of treatment has been determined.
Think Ginger Rogers to Fred Astair. He led and she did it backwards in high heels. My strongest advocate going through this medical process was/is the PA.
That said: Guess what the PA gave to me at yesterday's appointment? Something I did not think I would see. I was given photos of the original valve in various forms of deconstruction. This was very exciting. The PA explained what each photo was and I tried to remember as much as possible what she said. I took a digital photo of the photos and posted them below.
The top photo is the valve in it's entirety. I am not sure if it was still attached to my heart at that point.
The next photo is the valve laid out. The tiny dark nubs are the flaps that could not hold back the blood. I was taken by the cleaness of the valve.
The last photo is the valve in pieces. Note the scale is metric. For a conversion consider 2.54 CM is equal to 1". 5.08 CM is equal to 2". 7.62 CM is equal to 3".
So, you got through the visuals.
There were other things determined and changed at this appointment. I have lost 16# since my February appointment. This pleased all. Weight watchers does work.
I asked about reduction of dose of the Rx with the nastiest side effects. That dose will be reduced from twice daily to once a day July 1.
Two OTC meds were added bringing my morning total to 8. It seems like a lot until it is broken down for the purpose of training my heart to function 'normally' over time.
1- controls atrial fibulation: this will be reduced to once a day. My goal is to be free of this by 4 months out from the surgery.
2- establishes a strong heart beat. This is to help the right atrium shrink after decades of working harder than it needed to causing it to expand to the point that lead to the surgery. This should go away in about a year.
3- beta blocker was something I began in 2007 to reduce extra beats. I am not sure why it is still part of the mix, but when I was not taking it in the hospital my heart noticed. I will push to have this go away after the first two are gone.
4- Anti-cancer drug. This will go away in 4 1/2 years.
5- two baby aspirin. SOP for anyone with cardiac problems. It is better than Warfarin.
6- multivitamin. My gynecologist recommended I take a multivitamin prior to surgery 2 1/2 years ago. He said it would help healing. He was right. I have been told I heal well.
7- New introduction today 'triple strength fish oil'. There are jelly beans smaller than this pill. It is promoted by cardiologists... I think because it is an anti-oxidant.
8- New introduction today CoEnzyme Q10 400 mg . Think horehound throat loszenge in size. I forgot why this was added to the list. I do know that a buy one / get one free promotion for #7 and #8 was $60 for two months. The insurance nurse suggested usin Needymed.org as a resource for less expensive OTC drugs.
My first time driving since May 31 was to the craft class at church last night. I stopped at a Target to buy the OTC drugs recommended. Target did not have what I needed so I drove to Walgreens. This was in addition to the stop at the local fabric store on the way back from the doctor's appointment earlier in the day. This was a lot more activity than the day before, yet no fallout from it. I am not more tired due to the extra activity.
Maybe today I will do the farmers' market with a luggage tote to collect my purchases.
How am I to keep track of my 'exercise' when I am not doing a formal program on the days I am active? Did I walk 15 minutes yesterday. Yes, I did in Target and at least 30 minutes in the fabric store. Did I do light calestetics? Yes, when I hand washed and put away dishes, folded laundry, straighten out the sofa and picked bolts of fabric off the floor I knocked off the table at the fabric store.
I do not do organized exercise well. Yoga works because it is social. I do not understand why walking for the sake of walking is such a desired thing to do. Yep, and I live with two distance runners. I love them. I do not understand them.
Tuesday June 21, 2011:
I was up just one time during the night.
The weight has not budged since yesterday.
The surgery was on June 1. It is the 3 week mark.
I walked 2 Xs yesterday for 10 - 12 minutes. This morning I've already walked 15 minutes. It was harder to walk the 10 minutes on Sunday than the 15 minutes this morning. Normal is happening.
The vein rawness in my right arm is slowly going away.
I put the TEDs back on because I saw a slight swelling in my right leg. My best guess is the swelling is a reaction to the walking program in progress. I will try to go without in a few days and see what happens.
Tomorrow is the first follow up appointment with my cardiologist. I look forward to new information and direction. 'When can I start weaning off the nasty heart meds?', is top of my list.
Good Morning!!
