Eleanor's Journal

On July 14th, I celebrated the first full year of my new aortic valve. This summer is so much better than last year, as there was no pre-surgery anxiety, no hospital/icu/surgery, no recovery, and not yet cardiac rehab! Just regular exercise and gym with swimming, gardening and walking thrown into the mix. No problems after the first week post-surgery when I had to go back to the emergency room for a few hours so they could check out a numb left hand. Fortunately the hand woke up while I was there, so I know I have been very lucky to not have had issues and can celebrate a healthy heart. My cardiologist has released (back into the wild, he says!) for another year, then we will do some testing to make sure everything is staying on course. I hope all of you have good outcomes as well, and can celebrate many relaxed anniversaries. Eleanor

The weeks after surgery sure go by faster than those before. The waiting and anticipation makes the pre-surgery time seem lengthy, and I recall it as an anxious time. Oddly enough, once I had a date for the surgery and had decided on the valve type, I calmed down and was peaceful, actually ready for the surgery to hurry up and take place (and be over!). Now I realize that soon it will be seven months since I had my aortic valve replaced. I did not have much advance notice, as I had a normal valve which over years had become stenotic, and was “discovered” by a young physician’s assistant who asked me if I knew I had a heart murmur. I had been told that once before, but my GP didn’t seem concerned about it at the time. Well, fortunately this time she was, and she went to find him immediately to listen and he sent me to a cardiologist. I honestly believe he never heard the murmur, even then, but of course the cardiologist did and thus began the saga that all of you are familiar with from your own stories so far. I changed physicians, as well as cardiologist, before the surgery and have been as pleased with my new medical team, as I am with the surgeon who performed the surgery. I have always been an advocate of helping yourself, and selecting service providers carefully. Glad I changed, much better, much nicer feeling.
I have just “graduated” from cardiac rehab and am now entrusted to my own care, as the cardiologist doesn’t want to see me for six months and the surgeon “released” me on the last day in the hospital, although I did follow up with his PA by phone and once in person to round out the surgery. It will be a challenge to get myself to the gym three times a week. I should probably invest in home equipment as I do well on a recumbent bike and treadmill, but I have a really nice county gym less than five miles from my home, where I can use all kinds of equipment, including pool and spa.
The challenge is to get up, get out, and just do it. Life has returned to pretty much to what it was pre-surgery, I am driving, shopping, cleaning and cooking, walking the dog and playing with the cat, volunteering at our local elementary school and helping my adult daughter with her dance company, and keeping up with friends and former colleagues from work. I worked in international development in DC for thirty years and have many friends and memories of East Asia and the wonderful African continent. Now that I can travel, I headed to Florida to spend Christmas with my brother and his family. Since we did not have a vacation this summer, being The Summer of the Heart Surgery, my daughter came with me, as did Lucy the dog. We stayed in a condo on the beach and enjoyed walks on the beach and dips in the heated pool, and good family time. All without shortness of breath and being too tired to keep up.
Now we are already in February. No more worries about heart related matters, but I do check my heart rate – that was something I never had done before, now I do. I check my blood pressure too a few times a week, just to keep on track. Today I got back into the swimming pool for the first time since surgery and did all my walking in water, plus some exercises and swimming. I had avoided the pool since surgery in July, but it was great, no pain or aches. Tomorrow I will just walk on the treadmill and do the recumbent bike, after my volunteer work with the first graders. I am looking forward to warmer weather in the DC area, so that I can get back into my yard and garden, walk the dog more and enjoy the outside. Last spring, I wasn’t able to enjoy much, but now I have another, better chance. I wish all of you continued healing as well. Best wishes, Eleanor.

Twelve weeks after surgery, what a difference time makes. Twelve weeks finds me in the second week of cardiac rehab, going for 60 to 75 minutes three times a week. So far I am assigned just to walking laps around the gym, walking on the treadmill to warm up for 5 minutes, then a somewhat faster pace for another 15. Seems slow to me, but they are keeping an eye on our heart rates, which they don’t want going too high at the beginning. Then another 13 minutes on a recumbent bike, at level 1 then 2. Pretty easy stuff actually. Cool down is 5 laps walked slowly, then stretching, and blood pressure and heart rate checkout. I am frequently told to go sit down, to get my numbers lower before they allow me to leave. Fine with me, by then I am ready to sit down anywhere!

Oddly enough I am the only valve person in the gym, most are males with heart attacks and/or bypass operations. I am supposed to be walking for 30 minute stretches every other day, but I usually don’t have time, or don’t make time, as I get busy with life and forget about it. I do walk, doing laundry upstairs, taking the dog out downstairs, going grocery shopping then putting groceries away, and cleaning house. I am so glad to be able to do all of this, with no aches and pains, no being out of breath or having to rest. I do try to remember to sit down a couple of times a day, and think about putting my feet up. Hardly ever happens for I stay really busy.

This week I started back with volunteer work, but have stayed out of the commute to DC. Last year I helped a first grade teacher as a volunteer one full day a week, but DC traffic is a bear, and the rush hour is actually several hours, from around 6am to 9am, then 4 to 7pm. The DC elementary school was beautiful, dating from the early 1900s, but the parking lot was accordingly tiny, and to get parking I had to be there at 7,30 then couldn’t get out until 3,30. I loved the school, the kids and the young teacher, but I hated commuting. As a retiree I had gotten spoiled, so I decided that this year I would do the same in a local school, just 5 mins. from my house, very spread out with a nice parking lot. I help a first grade teacher with newly arrived kids who do not speak English.

In DC, that group of kids was a mix of Asian and Latino kiddies, but in my area they are all from Spanish speaking countries. Poor little things, in the spirit of “immersion” they are dropped straight into whatever grade corresponds to their age. There is where my bilingualism comes in handy. Today, for example, the teacher asked me to sit on the floor with six of those who know almost zero English and help them learn the concept of counting by fives. Fortunately, I was able to sit on the floor! Several weeks ago I could not have done that. Getting up what not too awkward either so I am progressing, even with wonky knees. The joy today was explaining the concept of counting by fives, and watching one little boy’s face light up. He knew this in Spanish, but had been lost in English. He was so excited he just wanted to sit in my lap and count up to 100 by fives in Spanish. The teacher has said she wishes I could be there every day and not just two days a week, but I am hoping that the kids will need me less and less as they progress. Meantime, I feel that I am exercising my mind, and my soul, those days when I am not in cardiac rehab. Sure makes for a full week!

Now that I can drive anywhere I want, I pretty much reclaimed my life, all I am really missing is swimming, but I know to leave that alone for another couple of months, just thinking about it makes me nervous. When I finish the 36 sessions of rehab (7 down so far), then maybe I will be able to swim. I hope all of you who are post surgery are recovering well, too and those of you who are in the “waiting room” I sympathize with your impatience to get the show on the road. Honestly the anxiety of waiting was probably the hardest part for me. I hope your surgery day comes soon, and that it is smooth and successful, with a speedy recovery. Best wishes to all, Eleanor.

I wondered if I should post a journal entry or not, but I remember being such an avid reader of journals when I was first diagnosed, looking for anyone who might have the same diagnosis, and especially for those who had survived the surgery. Needless to say, I found many! This site was a welcome relief, showing me that valve problems, while not all that common in the general population, are captured by this website and populated by many, many people over the years who have gone through the same thing I was faced with. So, in the interest of providing the same kind of support I received, I will update my own journey.

Today is ten weeks from my aortic valve replacement surgery, something I never even knew I needed. It was a complete surprise to me that anything was wrong. I considered myself pretty healthy for age 68, never had a major illness or surgery. I had been told years ago, oddly enough by an allergist, that I should tell my PCP that I had a heart murmur. I did tell him, he listened, and said nothing. Big error on my part by not asking "what's up, Doc?" I assumed his silence meant "not a big deal". Today I assume that only meant that he heard nothing. He apparently still did not hear the murmur twenty years later, and he's not that old! Fortunately, his PA heard it right away and after asking me if I knew about, I asked her to call in the physician and tell him herself. She did, he listened, and sent me for an echocardiogram. I imagine all of you know the outcome as you may have travelled a similar path towards the next tests, the referral to a surgeon, etc.

Surgery was July 14th, went well and I came home the Friday after the Monday surgery. Today is week 10, and life is just about back to "normal", but better in so many ways.
While I did not know I had a valve problem, never had heard of aortic stenosis and wrote off emerging symptoms as aging or letting myself get out of shape after a long, cold winter spent at home instead of at the gym.

Now I know those were actually symptoms of the closing valve. After the surgery there is no more getting tired when I walk, no more shortness of breath going up stairs. No more mysterious evening "indigestion" in bed, no more twinges when I exercise too much.

Better still, ten weeks after the surgery there is no more fear. Since we all have active imaginations, we can imagine the worst possible things that could go wrong, and believe me I went right down the list imagining “what if?”. Things I had never even thought of I imagined when told I would need open heart surgery. I faced this fear and overcame it when they wheeled me out of the prep room and off to surgery. How amazing to wake up again and realize it is OVER, I survived, I am awake, I am alive. Able to give a wave and thumbs up even with the breathing tube in. No more worry about not making it to surgery in time to replace the valve, which had become a fear when I chose to wait for an appointment with the "perfect" surgeon for me. No more fretting about tissue vs. mechanical valve, or porcine vs. bovine. Done!

Today, ten weeks later I am greatly improved from when I came home from the hospital four days after the surgery. Even then I walking, showering, going up and down stairs (very carefully), and beginning to settle back into my home life, but today there are no more arm limitations (well, not too many, my body tells me when I am over reaching), no more riding in the backseat like Miss Daisy, but able to drive, even park in downtown (not so great at that, but then I never was). No more bruises anywhere, at least attributable to surgery, any new bruises are self-inflicted. No more unknown medicines, no more Extra Strength Tylenol, no more Benedryl for sleep. Now if I take these medications, it is for the purpose intended not because of sternal pain or inability to sleep. No more recliner for sleeping (but I do miss it).

And after these ten weeks, no more thoughts about the surgery, no more wondering if everything that happens to me is somehow related to my heart. No, now it is actually is related to just being tired, or a backache, or wonky knees, or anything that I would have known about pre-surgery.

I have thought about really moving on and leaving the journaling, allowing new patients to come front and center and receive advice from more recent patients. But, I kinda like you people, and I believe that the overcoming of fear, finding information, preparing oneself and one’s family for this experience, is what this website offers. I wish all of us the best healing and progress and we go forward with renewed hearts and spirits. Eleanor.

There is so much difference between pre and post surgery, and even more between week 1 and now today at week 8. Here is how I was pre-surgery, after knowing about the stenosis and need for a valve replacement: scared, uncertain, short of breath, anxious, coughing, tired, bedtime "indigestion" (not really, but that's what it felt like), questioning, worrying, planning, sleepless, and did I say scared? So, if you are pre-surgery, and any of these symptoms sound familiar, know that you are not alone.

Week 1 post surgery - grateful, still worried (am I going to fall? Is that valve actually working? Why am I so tired?), yes still tired. But NO MORE: shortness of breath, no more phantom indigestion (actually incipient heart failure!), no more fear. Trusting myself and my doctors that I can do what I am supposed to do, and that I am indeed on the path to recovery. Loving the results of Lasix and the dropping pounds, hating the size of the potassium pills, can’t wait to take fewer meds, wondering what happened to my BP which has tanked (compliments of Metoprolol apparently, but “not to worry unless it drops on either end below 100/50” says the surgeon’s office). Trust! Loving seeing the home care nurse, just for reassurance. Loved less the blood test she gave me, but that saved me a trip in to the surgeon’s office, so I loved that. Trouble getting into bed and moving once there, so sleeping in the recliner. Have to focus on something else at bedtime, to not relive the hospital experience. Just telling myself “Been there, done that, no need for a re-run” and somehow that worked. Otherwise, I found myself again and again on the gurney saying “see you soon” to my family, or waking up in the ICU. So, I am reading summer novels, and listening to books on tape to sleep. Couldn’t get to sleep quickly, so the surgeon’s office “prescribed” regular strength Benedryl, just one tablet. Oddly enough, it works. Not just for allergies any more.

Week 2 and beyond - JOY, no more fear, no more trepidation ("if I fall, I think I might actually be able to get up now"), no more anxiety, getting stronger, can walk longer, sleep better (although not in my bed yet, still in the electric recliner), able to stay up until 11 and sleep 8 hours, yay! Fewer meds, and no more nausea with the end of Amiodorone. Down now to the Metoprolol and baby aspirin. Wow, I can make it all the way around the block and I am walking normally again. Appetite is back (that a good thing/bad thing, have to watch what I eat), and can cook now myself. Walking several times a day, just for about 10 minutes each little trip, to the mail box, or the end of the back yard with the dog. No naps during the day, but remembering to “rest twice a day for 20 mins. with your feet up” as per the release instructions. Able to shower standing up if I want to, but the shower bench is still so nice, to sit under warm water. No more nausea allows me to be interested in food again, to want to cook and shop, and hurray, I can do both. Can’t drive, and have to ride like Miss Daisy, and I can’t push the heavy grocery cart but I can manage the mini ones the store has purchased. Still can’t stoop down much, so slip on shoes are the order of the day, as are easy on shirts or tee shirts that I go into like a caterpillar since I cannot lift my arms over my head. Reminded of Susan Smith’s posting entitled “I miss my arms”. Me, too.

And now, at week 8 - released from surgeon, released from cardiologist for three months, signed up for cardiac rehab, up and down stairs all day without even thinking about it, walking wherever I want, can actually raise my arms over my head without fear, coughing and sneezing are no longer explosive events, no more bruises anywhere, can sleep in my bed, can be a front seat passenger again and drive myself, even on DC roads and highways. Cooking and cleaning (well, the respite was nice while it lasted), able to get on the floor with the dog and even pick her up (only 9 lbs, all would approve), able to talk as much as I want without being out of breath (yes, the Jackie O breathless is gone). Able to pull on and off tee shirts at will, and to stoop and pick up things off the ground as much as I wish. Able to go wherever I want, and visit friends, no longer house-bound.
What remains after 8 weeks - Gratefulness, healing, a new scar which sometimes feels tight (time to start putting something on it, I think), random twinges of nerve pain in the chest as nerves and muscles find their way back together, more walking and deep breathing to do, cardiac rehab to master, looking forward to getting back in the swimming pool in a few months, time to return the electric recliner and move on, able now to go wherever I want in the car, in the malls or small towns in my area, able to have the laptop actually on my lap and write journals and blogs and try to help others.
I wish all the good things for all of you, with less anxiety beforehand, little “eventfulness” during and after surgery, and the smoothest of healing for us all. Best wishes, Eleanor

I hope all are doing well, those recuperating, those celebrating already valve anniversaries, and especially those still in the "waiting room". At 37 days post surgery I feel great and had the first follow up visit with the cardiologist.

I had never had a cardiologist, didn't know I needed one! When my primary care physician's assistant (yep, her not the MD himself) heard a heart murmur in December of last year, the PCP sent me for an echocardiogram "to rule out anything". Well it certainly did not rule out anything, but did rule in severe aortic stenosis! He gave me an order for an echo and sent me to Cardiologist No. 1. Since I thought I was merely going for a test, I didn't care where I went, and didn't plan to need a longer term relationship with No. 1. Wrong, again!

To make a long story short, I visited No. 1 for a total of 4 times in a very short period of time, for the Echo, a stress test, referral for a cardiac cath, then referral to a surgeon. I had known of this cardiologist for a long time, as many years ago when he was young doctor, he had treated my mother. Now older, and the director of the cardiac practice, he was a bit scattered, absent minded, and kept asking me how old I am. Having told him we are the same age, I thought he could remember that. We decided I really could do better than that, so we researched cardiologists in our area, which is full of them, as we are a suburb of Washington, DC. I found a good one, and met him just before the surgery, so he could have a before and after experience of my heart/valves/etc.

Yesterday was the second visit to him, the first after surgery. Here's some interesting things he told, that apply to my case, but might also have broader implications for others, I don't know.

He told me Metroprolol (aka Lopressor) is a common drug used after heart surgery. It controls BP as well as heart rate. He said that the first weeks after surgery, it is important to give the heart time to heal itself, and this drug does that. For the first few weeks it is important to check on BP and heart rate, and perhaps to cut back the dosis, but not stop the drug.

In my case, the first weeks my BP was really low, often getting to the "call in if your BP get this low" rate of 100/50. But with more activity, more eating and consuming liquids, the BP came back up. Now its 120/80 with the same dose, which is 25 mg. administered in two doses of 12.5 each morning and evening. My BP in his office was 130/70 and heart rate of 60 (I've always had a slow heart rate).

He told me the general practice is to keep up the Metoprolol for 3 months, to give the heart ample time to heal. After that, to maintain BP, I may go back on the medicine I took prior to surgery (Norvasc 5mg), or not, depending on how my natural BP is at that time.

He told me to not be concerned that the before and the after EKG look a bit different, that today's T-waves is the "new normal" and reflects a heart that has had the pericardium opened, and has been moved around a bit. Nothing to be concerned about, just to know that the heart "remembers" being moved a bit, and is adjusting back to a normal state.

The cardiologist gave me the choice of going to cardiac rehab or doing it on my own. He thought I could do it on my own, I know better! So, I go back to him in 2 weeks for a stress test, after which time he will order cardiac rehab. In the meantime, I am to keep up the 30 min. walks once or twice a day, and keep moving around the house doing normal daily activities. Still no driving, vacuuming or mowing the grass, which I actually enjoy doing. No going to the gym for other than treadmill, no swimming. I hadn't planned on it actually.

So for now just the Metroprolol, an 81 mg. aspirin, and the Lipitor he put me on after the cardiac cath and carotid Doppler revealed minimal plaque in two arteries. Oh, also the thyroid med. I have taken since my thyroid took early retirement years ago.

Compared to the multitude of medicines I had in the hospital and upon release, this is a blessing. He checked my surgeon's report, the release documents from the hospital, along with all the vitals, EKG, etc. and sent me on my way.

So, I feel more secure, and informed. I wish the very same for all of you.

Eleanor

I almost missed this, but would love for everyone to take a look at a posting by the son of a 90+ year old couple who recently underwent AVR (together) at Cleveland Clinic. It is posted under "Raymond and Mazie Huggins" and here is a link to the Cleveland TV story:

http://fox8.com/2014/08/13/soulmate-surgery-couple-married-70-years-undergoes-procedure-together/

Check it out, and "take heart" all.
Eleanor

It seems like time is flying, it is already 30 days since surgery on July 14th for replacement of my aortic valve. The months before surgery was very different, days creeping by, with me staying busy with preparations, and a bit of nerves. So what is different now?

4 weeks after surgery, I am back to being independent. I can shower, dress myself, wash my hair and the dishes, but not at the same time! I can walk around the neighborhood without getting out of breath, I can go up and down stairs without that ole SOB (shortness of breath).

What can't I do? No driving yet, even though I am off pain meds, still limited by "sternal precautions". No cardiac rehab, but coming soon, I hope. No reaching way above my head to the top shelves - I quickly lower my arms and find a step stool or a willing "reacher" to get what I need. Still not sleeping flat in my bed, but loving the electric recliner. Odd, since I could never sleep on long airplane trips, even reclined in business or first class on business trips to Asia and Africa, but have no trouble in the recliner.

It seems odd that our hearts can be exposed, manipulated, repaired and sewn up again, and we can recover quickly and without too much pain. The incision and sternum have never hurt at all, the pain came from chest tubes, probably touching a nerve on their way out of my chest, and the dismal failure of the narcotic pain meds in the ICU which only made me nauseous but didn't move the pain. A miserable 26 hours, but still only one day out of a lifetime, a small price to pay, and highly unlikely that any of you will experience this.

Funny how they pump fluid into us while we are in surgery, and how quickly the scale goes up to reflect this new water weight. Then, how quickly Lasix moves it out and we regain our bodies, and swollen ankles become normal again. The human body is truly amazing, as is the human spirit and the will to survive and thrive. I wish this for all of us.

30 days and only one Tylenol at bedtime, and if I can't sleep one Benedryl. Simple things, less scary that the meds in the hospital, before and after surgery.

What would I do differently? I would make sure to schedule appointments with the cardiologist and the primary care physician 2 or 3 weeks after the date of the surgery. The surgeon, or mine at least, releases you very quickly. No, you are not going to enjoy a long-term relationship with this wonderful being who held your heart in his hand. Sorry, but he is going to be on to the next patient, and will be happy with your progress and release you, in my case after 2 weeks. Hands you back over to your cardiologist and PC physician. Good to have these appointments lined up beforehand, or you may have to wait a bit, like me.

Make sure you have your pre-surgery meds on hand as well, as you may be told to "go back to your regular meds", if you took anything non-heart related, as I did for thyroid.

Eat well, but humor yourself a bit too. You may not have too much of an appetite initially, so have soups and easy things on hand. I had a childhood renaissance, with grilled cheese and tomato soup, tea and toast at odd hours, and plain cookies and milk (to combat the queasiness of bedtime meds).

Enjoy your time off, or your downtime, and take it easy, your body is healing itself. You will get more and more energy, but remember to sit down (I rarely do, but try to remember to sit and read or write or watch TV or something). I don't take naps, but then I never did, but resting is good.

If I have other insights of what it is like on the road to recuperation, I'll add more later on.

Good wishes to all of you.

Eleanor

I forgot to preface my information with the fact that you may or may not have the same experience. Some will be slower, many will be faster than me. We are all in the race, and the goal is to complete the race (the healing) at our own pace.

Many members have talked about walking miles by now, immediately being able to sleep in their own bed, and easy success with the dreaded spirometer, which I cannot get up to 2,000 no matter what. We all started at a different place with a different physical make up.

So many of the things I experienced, you may not. You may be able to use your arms sooner than me, who could not even reach out straight to pick up something in week one, and by week two can get things off shelves, and stoop a bit to even get something off the floor. Its not pretty, either bent kneed or with my back straight and my butt sticking out.

Your doctor may say no to the ginger ale that became my best friend (for the nausea), or to the small coke cans which became a treat, or even to the puerile milk and cookies which I "took" when I had to take meds on an empty stomach.

Think about what you like, and what you think you could tolerate. You will find you have a wonderfully creative mind as well. Who knew my feet and toes could pick up a sock, or that I could slide things across the carpet with a foot?

I believe we all can do this. I have no more shortness of breath or "indigestion" at night making me sit up in med. I have chest tightness, but not much pain. I'm down to about 2-3 single Tylenol Extra (500 mg each) spread throughout the day/night. And for sleep my surgeon's office didn't prescribe Ambien, but one Benadryl. Isn't it amazing that these common day things get us through open heart surgery? Not in the hospital or the first week, but in what is now Week 3, I am so happy to be among OTC meds which I tolerate better than narcotics.

If you tolerate the meds, use them. Didn't work for me, to the amazement of the medical team, but will probably work for you. I am the one who gets car sick, can't ride the rides at the Fair, and is quick to develop nausea anyway. You probably are not that.

I would classify what is going on with my chest as tightness rather than pain. Although with certain unorthodox moves, it feels like a bear claw has reached around my side. If I behave, the bear retreats.

May you encounter no or few and scardey bears too.

Eleanor

Every one of us is different, with different at home support systems and daily activity. I am a very independent 68 year old, but blessed with a daughter who choose to move home (she lives only 15 miles away) to be with me the first few weeks post=surgery, and a very close nephew, also on site in the evenings. But, nonetheless, there are things that I would like to do for myself. I can think of things that patients pre-surgery might want to do to prepare their home and their bodies for the first week(s) home. Maybe this will help someone who is looking ahead, kinda bored and wondering what they can do to help themselves.

-Practice sitting down and standing up without using your arms or hands. The best way is to cross your arms across your chest. Back yourself right up to a chair and ease yourself down. Just use your legs. Then get up, the same way. You will need to rely on leg and core body strength as your arms could be MIA after surgery. After 15 days I can kinda/sorta use my elbows but no pushing with hands or expecting your arms to help. You may try and in your case you may succeed. I try and it hurts my chest, so I back off.

-If you have to negotiate stairs, you may need a "spotter" for the first week, especially if you are on pain meds. In the hospital they taught me to negotiate one step at the time, to face the handrail and hold it lightly (since arms are a problem, you can hold your elbows at your side so as to not engage your chest muscles). Then slowly, one step at the time. I did this for the first week, now I can pretty much go up or down, slowly, carefully, and joyfully without the shortness of breath of pre-surgery.

-You might want to download things onto your I=pod or laptop. I downloaded a couple of audio books, which are great at putting me to sleep, and several relaxation/meditation tapes. The Cleveland Clinic as a free download on their website, and of course I-tunes has a wealth of relaxing music.

-I love to read so I had several new books awaiting me at home, Couldn't have read much in the hospital, too much activity and the meds made me nauseous and tired, so the audiobooks and music helped. Now, I'm back to reading except at bedtime.

-Walk through your house with your elbows at your sides, and think about how you would conduct your daily activities in this fashion. It might mean:
-put your favorite glass, mug, plate, one serving of silverware, etc. where you can reach it. You might be able to reach the first shelf, I was not the first week, but can go up on tiptoe and reach the second shelf at 16 days.
-think about how you are going to bathe yourself, and make sure you are safe. Can you get into your shower and out again safely? You may need to rent from a medical supply store, a shower seat. You may also need to check out the height of your toilet, if it is too low for you with your arms crossed in front of you. Also check the location of the toilet paper. Sorrry, but to reach behind you it helps if you cross the other arm in front of your chest. Think of always protecting your chest, and you'll be a champ.
-Watch out if you go outside for uneven pavement or ground, you don't want to fall. For the first week home, I did my walking around the house. Pretty boring, but I left the TV on and just watched the clock in the kitchen with each circle, until I had done 5, then 6, then 7 minutes each day. Now I can walk about 10-15 mins slowly around my cul de sac.
-Practice getting into and out of bed with your arms crossed your chest, using leg and core strength. Maybe you will be stronger than me and it won't be an issue. The first week or so, I could not do this, and really enjoyed the electric recliner I rented from a medical supply store. Others have bought the same, even from a thrift store. What you want is comfort and help getting into a good snooze position. I am still sleeping in mine, since being flat on my back is painful, as it pulls your chest a bit, and on my side it is still too hard to maneuver easily without using my hands (which also pulls your chest muscles). You may not be such a wimp, I am.
-The next time you shower, practice washing your hair by lowering your head to your hands without raising your arms very much. Doing it this way, I could wash my hair even on day 4 post surgery. Still doing it this way even thought I have been cleared to raise my arms a bit more. Just more comfortable lowering my head, and using the shower bench. Bed, Bath and Beyond have some cute ones, or your can rent the real shower chair.
-Some hospitals give out "heart pillows" but what I found even more helpful was a small, flat pillow. Actually the nurse at the hospital gave me one since I found the heart pillow a bit too plump. You are going to love having this handy, you might want to locate one beforehand and practice sitting down and getting up holding it in front of your chest.
-You might not like coughing without the pillow, I sure don't and I had my first sneeze today, which even with the pillow felt like rockets going off inside. I survived!
-Think about what you like to eat and drink, and have this hand, or for someone to get for you. You may not feel your usual appetite, so treat yourself kindly to whatever you wish. With the nausea from the meds, I took to Popsicles for those days, and small "meals" of soup and crackers, PB&J sandwiches, or whatever I felt like. Now at day 16 I am eating normally and even cooking (again, don't' think of lifting heavy casseroles, or stooping to pull out heavy roasters). But cooking meats, pasta, salads, etc. I can do again. Unless you have someone coming in to help, put what you think you might use, even one frying pan, close at hand.
-And if you can't eat? Maybe you can test out Ensure beforehand, or find another kind of diet supplement or replacement that you can tolerate. In the hospital I could eat a little of whatever I ordered, but they did have me try a chocolate Ensure one evening.
-Opening some doors can be a challenge. If your refrigerator door is really heavy, you might want to practice opening it now with your elbows at your waist, and using both hands, held at the lower part. I still open ours this way. Our door to the deck is hard to close. I open it the same way and use my knee to close it tightly, even now.
-Practice getting into a car. You should be in the backseat, so I hope it is a sedan. You want to avoid being in the passenger's seat and subject to an airbag going off. Practice getting in the backseat, holding a small pillow across your chest. Just like sitting in chair, back up to it until you feel it, ease down, watch your head, and lift your feet in. Have the driver buckle the seat belt over you and your pillow.
-If you live alone, I recommend at least a week in a rehab center. Once you are home you are going to be homebound for a while, so Medicare pays for a visiting nurse and a physical therapist. Say yes to both.
-Find out now what services your neighborhood offers for those who live alone, maybe a visiting home assistant, volunteer drivers for your follow up meetings with your doctors, volunteers who might run errands for homebound patients (pick up meds, bring in a few groceries). I would call Social Services of your county to see what is available.

Wow, I have written a lot. Hope this is helpful to those pre-bies out there. Best wishes to all of you, in whatever stage of recovery you are.

Eleanor

My surgery was on July 14th, at 11am. I have been home now for 11 days, and finally feel like typing. I have been really busy resting, breathing deeply including with the draft incentive spirometer, and moving around the house.

I will not repeat what our friend Richard Culpepper wrote, but read his journal for a clear and comprehensive account of his own experience. What he says is so true about individual differences. Each of us can expect a good outcome, wherever we are so long as we are in the hands of an experienced heart surgeon and a hospital accustomed to valve replacements.

However, each of our experiences will be different, just as we are different people with different heath concerns and reactions. What others have experienced, for good or for not so good, will probably not apply to you. I think of it as all of us getting on a bus and going together to a state or county fair. When we get back on the bus together to go home, we will all have had different experiences. Some will have raced around the fairgrounds, some will have strolled and stopped at each booth. Some will have ridden every ride, others just watched. Some will have eaten the fair food and found it great, others not so much. When we compare notes, we can agree we all went to the fair, and it turned out fine. But, what we experienced may differ.

In my case, I get dizzy easily, carsick, seasick, etc. So of course the pain meds made the nauseous. Medicine for nausea worked, a bit, but the pain meds not so much. As soon as I could leave them behind and get on Extra Strength Tylenol, I was so much better.

I can honestly say the surgery itself was not as scary or as bad as I had imagined. I really trusted the surgeon and the hospital, and they came through. The drainage tubes actually bothered me more than the incision. Such a relief to have them removed, and no it did not hurt me when they took them out. Odd, huh?

Breathing tube was also a non issue, I vaguely recall the ICU nurse saying we are going to take this out on 1, 2 and out. Didn't hurt, even when she asked me to cough afterwards. Throat was dry, speech a little breathless, but otherwise fine.

I have not written because my arms tired easily and a "laptop" is heavy. Desk top would have been fine. The first week home I was more dependent upon help, so do arrange to have someone with you, or a recovery center located, to help you shower, dress, get into and out of bed. Week two you are more independent, but if your insurance covers an extra week, with physical therapy, that would be great for some people, but probably punishment for others (remember my fairground analogy).

I have a visiting nurse who comes twice a week, just to check on the incision and drainage holes, temp, blood pressure and oxygen, and heart rate. Three visits so far, but honestly I don't see much need for more than many a close-out visit. But again, if you live alone, you will benefit for these visits, as well as in=home physical therapy. Medicare covers all of this, but I turned down the PT since I have daughter and nephew at home with me, to walk around the block or the back yard, and stairs at home to maneuver, with great care.

My advice is to "take heart". This is major surgery but for experienced surgeons, it is just another day at the office. My surgeon does two a day, at 7 and 11, two or three days a week. Other days he's in the office talking to pre-surgery patients, and catching up on the latest in heart valve news. I wish for you all a similar person who you trust.

Good luck to all the "pres" and good healing to all the "posts" surgery members. More to come later (read also Susan Smith's post "I miss my arms" and you will understand why not too much at one time).

Best wishes, Eleanor

The family is in town, the small overnight bag is packed, meds are being taken on countdown, and I can't wait. Things to know/remember about getting ready for surgery, at least at the hospital I am going to, which is the Inova Heart and Vascular Institute, Fairfax, Virginia:

-At the pre-op meeting before surgery, which here they do a week or several days at least before surgery, you will have an interview to go over what to expect. They will also take blood and cross type your blood, very important. To make sure there is no mistake, they put a red bracelet on you, which they tell you cannot be removed until check in, or they will have to do the whole process over again. Do not lose this (as though you could, it is "bolted" on with a plastic tab.

-Since they write the date on this bracelet, I was afraid of getting it wet, dirty, torn in the daily living, so I've been wearing a tennis sweat band over it. Looks kinda weird, but so does walking around with a hospital bracelet on.


-Pre-surgery, this hospital or my surgeon prescribes Amiodorone, to regulate the heart beat. So, morning/noon/night, that needs to be taken.

-This hospital/surgeon (he is the head of the cardiac program, so basically it is him), prescribes Bactrim, a nasal ointment that we have read from other in the community is kinda nasty tasting. Q-tips in each nostril, the night before and the morning of. To keep us germfree.

-Special soap to use after regular soap, for a nighttime shower. No bubble bath tonight a shower after a shower. Then early tomorrow morning, the same drill. Must think we are really germy.

-Another thing I'm told to do is to put clean sheets on the bed tonight, and clean pajamas, to not mess up my double shower cleanliness.

-Not even a sip of water after midnight, except for the last Amiodarone pill with a tiny sip. No gum or breath mints, nada, zip, zilch.

-My surgery time was delayed, so instead of being at the hospital at 5am, I'm to be there at 9 for an 11 am surgery time. Am to call the hospital before leaving home, to make sure the surgeon is not running late from the first surgery (an emergency surgery). Better for the family accompanying me, for it will be a long day at any rate.

-No magic sleeping potion prescribed for me, "just get a good night's sleep" they say. Really???

So, preparations are made, I've done my part. Tomorrow the surgeon will do his part, then hand it back over to me to do the work of healing, and taking care of myself.

Now with symptoms, and knowing what each one of them means, I am more than ready. No, it is not "getting older" when I am fatigued. It is not "lack of exercising" when I am out of breath after one flight of stairs, and no, it is not indigestion when I have pressure on my chest when I first lie down at night. It is aortic stenosis with all its manifestations. And it will kill me if I ignore it. I will not, I am taking care of it.

I will write to you soon, all take care of yourself, stay ready and heal well.

Eleanor

I have not had a long time to think about this surgery. My family doctor finally heard the murmur in December, and started the round of consultations and tests which will culminate in surgery on July 14th.

Being a compulsive researcher, I immediately jumped into reading about murmurs, stenosis, AVR, etc. Along the way I have learned a few lessons that might help others as they embark on the same journey.

-Listen to your body. You know yourself better than anyone else. Pay attention to what is going on with your body. It is seems serious, don't wait, get to a doctor or even a hospital, don't wait for symptoms to magically disappear. Example: I was increasingly short of breath walking longer distances and climbing stairs, and I noticed this but said nothing.

-Don't try to guess what is wrong, or play doctor to yourself. Example: It was way too easy to justify the shortness of breath, fatigue, and then a cough, as just being me getting older (I am 68), or needing to get back in the gym to exercise more. Wrong answer!

-When your doctor is not hearing you, try again, and again, or find another doctor. Examples: my GP never heard a murmur. Long ago (maybe 20 years) an allergist told me I had a murmur, I mentioned it to the GP months later in a normal checkup, he listened (and now I know he heard nothing), said nothing and moved on. I should have asked "so what's up", but I thought his silence meant it was no big deal. Wrong again! 2nd example: I had never had a cardiologist, didn't know I needed one. The GP referred me for a echocardiogram, to a near by cardiologist. He did the echo, the stress test, and his practice did the cardiac catherization. But, the cardiologist and I never really clicked. He has a large practice, four offices to run, and I was just one more patient, whose name he had to ask in a span of ten minutes. Lesson learned, when you are not "clicking" with any specialist, find another one. Now knowing what I have, I set out to research cardiologists, and believe me in the Washington, DC area, there are many. I was looking for one with great reputation and reviews, very engaged in cardiology (and not side interests as Cardiologist No. 1), and a great bedside manner. I found him!

-Once you know what is coming (surgery), if you have time, get your ducks in a row. Example: these "ducks" include your general overall health, making sure your shots are up to date, your meds are adjusted, and yes your teeth ready to pass inspection, for to have surgery you cannot have lingering dental infections, loose teeth, etc. So, get with the program! Since I didn't have much time, I was on a circuit of getting things done. What gave me a bit more time was waiting for the surgeon of my choice, who had a booked up schedule. Don't delay!

-When you are still confused, ask again, seek another appointment. Example: I was driving myself, and my family, crazy with questions I had forgotten to ask the surgeon, even though I had a (long!) list. I was particularly concerned about the type of tissue valve he would recommend. So I emailed him, and he saw me again, for as long as I wished, answering all kinds of questions. Don't be afraid to ask. Just think, you would not buy a new car without reading about it and grilling the salesman. You are "buying" something much more valuable than a car.

-Read all you can, but be careful, too, about taking personal opinions (like mine!) as word of law. You can really freak yourself out with TMI. Example: Adam's book is a great start, as is this website, and the other book about Coping with Heart Surgery and Bypassing Depression. You may or may not want to get into the details of the surgery itself, the types of valves and other minutia. For myself, I have stopped, after talking again with the surgeon and seeing how much more knowledgeable he is than myself. Trust the experts.

I am sure there are more lessons learned and to be learned. Stay tuned and stay well.

Eleanor

I did not know I had an issue with my valve until very recently, so it has come quickly, moving me through the various specialists and procedures which I imagine all or most of you are familiar with!

Hospital and surgeon selected, tissue valve selected, bag packed and family and friends on board, so thank you for all the helpful information I have read over the last month as each of you documented your successful journey.

Continue in healing and health, and wish me luck on July 14th!

Eleanor