Lynn's Heart Valve Journal

I'm looking for a cardiologist in Houston for a check up. I don't need to see a surgeon. There are about a million heart docs here! I had an AVR in 2012 in San Francisco

Hi All! I had an AVR in California 5 years ago..I have since moved to Houston and need to get an ultrasound to check it out. Can you refer me to cardiologists here?? I don't know anyone. Thanks!

I am 2 years post op for an Aortic Valve Replacement for a bicuspid valve. Healthy and well, no complications, nary a thought about it. In fact, the most difficult experience of my life is now completely forgettable. When I feel my heart pounding, for whatever reason, I remember. When I feel very very tired I remember. I have made my peace with my heart…I see the scar and I think, thats just me.

Today is a special day for me. One year ago this morning, in San Francisco, I had my Aortic Valve replaced. I will never forget the loving kindness shown to me by so many in my life and here on this website..Jim, Dan, Carol,Ernie and others, we all were t

Hi Everyone! A year ago I discovered I had aortic stenosis and was informed I needed to have OHS and an AVR. My life long good health could not save me from this. I found this website and joined a great group.We traveled the same road, kidding, cajoling, supporting one another as we rolled off the assembly line. Thankfully, we all ended up very well. It was Topic #1 for me for an entire year. The physical recovery was swifter than the psychological one but I can happily tell you days go by now without me thinking of some aspect of OHS.
I am a visual artist and recently made a 30 page graphic memoir of my year of living dangerously..30 pages of small paintings and words. It's a bit too personal to share the whole thing but I hope you will have a look in MY PHOTOS..I put up a few that will make you think and smile. To my classmates..well done! Lets not go to grad school! To those waiting or immediately post op, I send my love

Hellloo Everybody!

I thought I would drop in and say hi. Today is my 6 month post op day! Pretty amazing. All is well…I would say I am 100% recovered…I am running 4-5 miles/day, hiking up steep trails, drinking and partying again. It's like OHS never happened but of course it did…there are psychological hurdles to get over post op. I am jumping over the last few. I no longer think about it every day or let it influence me. I am taking better care of myself and have improved health. I have great respect for my surgery. I have lots of energy.
My scar is fine- it's almost invisible. I did have neck ache and crazy zings across my chest for a long time…they come from time to time. Thats about it. Sometimes, when I over do it ( like I did last weekend with a steep 8 mile hike) I get that "cardiac" exhaustion and have to rest immediately. My family and friends have all been wonderful.
Looking back, it was a difficult and lonely experience. I am glad to be back into life 100%. I am richer for for it but it was the hardest thing I have ever done.
My advice post op : work doing something you like, keep your family of relatives and friends close, and try to eat some healthy snacks along the way :)

The Magic day has arrived! I am 12 weeks post AVR and "healed"…No more physical restrictions of any kind. My cardiologist called me last week to say goodbye..I am on no meds (except baby aspirin) and have no medical appointments. He told me to have an echo in 3 years... Adios...
So..great..I love this day! My body is healed! I am back to everything with renewed energy and strength. I am feeling the extra blood..my skin has color, I can climb faster, I do not get tired. My sense of smell has increased 1000%…wish it had been my eyesight,
lol…it's scary ...I smell the gum people chew as they walk past me..so many bad smells actually..this super hero power is not very useful... Unless I apply for a job at the airport!
Here is my dilemma: my mind is not 100%. I experienced a personal loss with this AVR that I must incorporate. There is no " going back", "forgetting it ever happened" "picking up where I left off". If you cut your finger, in 3 days it has healed. You do not need to think about it. Your body self corrects. Similarly, if your chest is cracked for open heart surgery, in 3 months your body has healed. But what about your head? The rug was pulled out from under me..I have re-landed, but not in the same place as I took off. I am seeking new ground and with it a new sense of safety. I am very proud of my body..it really came through..I do not feel fragile..however I know I have a bit less sand in my hourglass…I know, in my muscles and tissues, that I am not on Earth forever. We all know that inherently but I know it intimately. OHS was a huge awakening for me. It has changed me for the better.
I am almost through processing the last bit. The hardest parts were the first 3 days in the hospital. The part I am finishing with remembering is when they wheeled me out of pre-op…goodbye family..I saw my name on the whiteboard as I rolled past…despite the drugs, I was so shocked..down the corridor, into the bright room. I was the only horizontal person there..it was about to happen and I felt something deep inside give way. That was my change.
Congratulations to everyone in my "class", especially my cardiac buddy Jim Jones; we went down the rabbit hole and found our way out!

6 weeks today I had my aortic valve replaced at Kaiser SF by Dr. Melikian. I am lucky to have had a smooth recovery. At this point I am off meds, have no more doctor appointments, do not need cardiac rehab, am walking/slow jogging every day and feel well. I see more of the same in my future..good and bad days, mostly good. Thus, I feel the need to draw a line in the sand and say GAME OVER.
Thank you everyone for coming along with me on this journey. Every note, email, meal, card, flower, phone call, text you sent made my day a little easier. I know I have friends all over the world, in my neighborhood and many on this site I have never met but feel I know. Open heart surgery is not for sissys! It takes a huge amount of courage to march through this experience. My family was awesome...my son and daughters kept close to me...my husband Steve gave me security, love, comfort and humor when I needed it most. I have never felt so well cared for. I have been in soft cotton wool and it was lovely!
I need to look to the future now and put this behind me. It was a profound experience which I am slowly confronting. Right now, I feel a keen appreciation, for everything...every sunrise I see washes thru me, every word has meaning, every person I love I adore. I feel more of an appreciation for life than gratitude, but of course I am that as well.
I will continue to follow my HVS friends but I bid you adieu and thank you for the love and support!

I had my Post Op Echo. My cardiologist said " Its perfect. no leaks, your heart is strong". So, all this effort and this is the result. I am overwhelmed and underwhelmed at the same time!
This is the whole point of going thru open heart surgery…to get a strong heart. Now I have one.

I am also aware that I have a prosthetic keeping me alive…far more integral than an artificial arm or leg…I am glad to hear it is sewn in tight and does not leak around the edges…I am not sure how I feel about that yet.
I guess this is the end of Part One. Part Two ends when I am 100% recovered, sometime later this year. My 12 weeks are up Feb. 7th..then I can start to use my chest and arm muscles again. The total recovery seems to be about a year…gradual improvements…and then voila! I am so thankful for this website..I could never have done this on my own.

I was all set to feel great at week 4-5 but it never materialized. I was still feeling terrible- like I had been attacked by wild animals …then I was crazy busy with life events…struggling to keep pace and feeling my usual flat affect. I was seriously starting to miss my personality. I had sharp pain in my right chest that would stop me in my tracks. I battled to sit and chit chat for hours at dinner parties. I was totally unmoved by everything I heard or read. I was some sort of scarred up Stepford Wife!

Week 6 has turned me around! I met with my surgeon for my post op appointment…all is great..I am off all meds but baby aspirin..I don't need cardiac rehab since I am walking 4 miles a day so easily.."Go live your life and try to forget about this experience" he said.

I went to my old floor to give my nurses cards and gifts..so amazing to walk that space as a normal person..it looked totally different! I was lucky to find Aimee my primary nurse, whose calm, soft spoken gentle manner set the tone for my recovery. I was so hurt on Post Op Day 2 and 3 I could barely speak or move my head. When Aimee and I locked eyes again, I felt a flood of non verbal communication flow..a dam burst inside me..tears poured down my cheeks as I hugged and thanked her.
I know now that previously, all my vital life forces were 100% engaged in healing my controlled trauma. There was no energy left over for something as piddling as personality.
Physically, I have turned the corner and my life forces have returned to all of me…last night I slept on my side for the first time, in bed,for 6 hours! I was comfortable! Can you imagine?
To all in recovery, this is a marathon…you will hit the wall and break through on your own schedule. To those about to go, it does get better. Blessings All.

Today I did a 4 mile walk..it was wonderful to be out in the chilly sunshine breathing the clean December air and looking at the mountains. From time to time I completely forgot about events 4 weeks ago today...until my chest or back hurt a bit...but I let the thoughts come and go, I recognized what I was feeling and I resumed feeling great. Now I am crashed out in the recliner, but very happy!
I did not write a hospital summary because frankly, it was a really tough experience and I didn't think it would help anyone going in for the same thing- AVR. As I said before, I really battle with claustrophobia and the first 24 hours post op I could barely breathe. The feeling of heaviness, like an elephant is sitting on your chest was too real. I went breathe to breathe for a good 12 hours which seemed endless. It was not painful..it was just this heavy, heavy oppressive feeling. I think my response is not typical and most folks manage this period better than I did.
At 4 weeks, here is a list of easier/ harder discoveries that I hope will be helpful.

EASIER than Expected:
1. Sleeping on my back in a recliner. It's been wonderfully comfortable, secure, cozy. I am still sleeping in it!
2. General movement- I could do much more than I expected when I got home..shower, hair wash, dress, walk.
3. Putting my HEALTH first- I would ask myself ' is this good for me' and act accordingly. It still remains my main focus.
4. Pain management- take the meds
5. Family involvement- everyone has taken my vital signs, fetched things, helped me. Accepting a certain level of helplessness.
6. Cabin Fever- accept it!
7. Living clean and healthy..diet, exercise, sleep. I am very protective of my new tissue valve and will do everything possible to extend its life. I have great respect for my surgery.
8. Letting go of needless obligations. I have a soft heart to people and experiences but I have cut out the BS.
9. Expressing love and thanks to family, friends, website supporters. I could not have done this alone.

HARDER than expected:
1. Simple moves like twisting a med cap off, bending down, opening the fridge, all these things really hurt my chest.
2. Sleeping in bed- the lack of structure hurt..I would automatically roll onto my side and wake up in pain.
3. The lack of independence...the whole driving Miss Daisy thing was old on day one. I actually drove yesterday a bit to the shop and it felt GREAT! I have not driven in one month...who knew how hard that would be!
4. Feeling fragile ...I was worried and paranoid the first 2 weeks post op that something bad would happen. It did not.
5. Flashbacks- I still struggle with the mechanics of what was done to me..my heart stopped for hours, my lungs were deflated like 2 wet balloons, my chest was filled with iced saline and my heart was electrically zapped back to life. Wow. I am still cold, I remember waking up in ICU thinking I was in a snowy blizzard- the sheets were mounds of snow I tried to push off me.
6. Constipation- those pain meds are serious- whatever you need to go, double it!
7. Re- Starting my life. Something so essential has changed..I cannot just go back to how it was...I don't know how this will manifest itself yet.
8. The Concept of Recovery- it's so slow. I have never felt 'unwell' for 4 solid weeks before...I am tired of it now but still have 2 months to go! I have learned to become very patient.
9. Walking up inclines, small hills- I get SOB- it's frustrating. How will I ever trail run again?
All in all, I believe I am where I should be at week 4 and will carry on.

Thanksgiving weekend is always a busy time....lots of catching up with folks, going out, eating and drinking and hiking and going on beach walks...it goes on and on. This one is no different..today we had lunch in Sausalito, a nice walk by the water, then went to the movies. I was fine with it all.. Very surprised actually. I don't have serious pain anymore...but I can feel missed connections in my chest....still doing sternal precautions but have more energy and stamina .
Every now and then, in the midst of conversations, my mind says ' my heart stopped' and I get a bit freaked out. I am having some psychological flashbacks now that I am not worried about my physical being moment to moment. But it's more of the same for me...a slow, steady progress. I walked for an hour the other day and was feeling it by the time I got back home. I miss running and exercising. I look forward to cardiac rehab and a return to movement. I just sort of gaze up at the trails as if its Mt. Everest ! I cannot imagine when I will be able to run them again.
Things will slow down for a few weeks now. Next week it will be one month post op so I am expecting great things.

Lots of love to all the HVS community!

It will be 3 weeks post op on Thanksgiving Day- you all know what I will be thankful for! I had my first post op check up today- everything is great! He took me off most of the meds, said I have no restrictions except for the sternal ones and sent me on my way! I will have a post op echo in a few weeks time. I suddenly feel so much stronger and better!
I am walking 30 min.2x a day...could do more....taking percocet 1-2x a day, tapering off . My chest is sore...the nerve endings are looking to reconnect...chest tube site sore. I have no real back or shoulder pain..that resolved with 24/7 heat application. My appetite is slowly returning, altho I have no urge to cook. Our friends brought over an amazing Osso buco last evening that was the best thing I have had in 3 weeks.
All in all I feel I am on the mend and can see the light at the end of the tunnel. There was no avoiding this- on a scale of how bad my valve was of 1-10 mine was an eight. I think I was wise to have it replaced before I became symptomatic and my heart injured. I think it made my recovery easier. It was an extremely difficult and painful few days post op but now that is over. You can withstand anything if its just a few days. At the moment,everything's wonderful !
Blessings to those going in soon and my fellow recoveries.

I know very well from reading the journals here that recovery is seldom, if ever, linear . I have had my first experience of that now:
Yesterday I felt great. I went on 3 walks, a friend came for a few hours, the visiting nurse came as well. Then suddenly I felt exhausted and so took a nap at 3:30. Imwoke up at 6 pm very hot and achy all over...just that dreadful " I feel terrible feeling". My temp was almost 101, increased BP and HR 105. We called the thoracic surgeon on call...he told me to take Tylenol and see what the situation was at 10 pm. If my temp was not below 100 or if I did not feel better he wanted me to come in to the hospital.Luckliy my temp,went down and I could stay home. Taking it easy today..that was such a schock!

It feels like many more than that! Everything is ticking along, I have no complaints. Each day is different so I do not make any plans...some days I am just really tired and others I have more energy but I am trying to,keep,with a routine. I add time to my walks and so,far so good. I have cut down on pain med to one or two a day and use Tylenol,instead with good results. I still don't have much of an appetitie despite all the amazing food around here! Our friends have provided such good meals...ginger and squash soup, leek and bacon soup, sweet potatoe soup, lasagna, fig salads, pasta, Thai curry, chicken soup, plus tea cakes....amazing! Cards and flowers and little gifts...it has made us feel grateful and taken care of. Thank you so much!
Steve has gone back to work so it's me and the pug for a few hours everyday... Every afternoon a friend comes over and the visiting nurse comes 2x a week. I am very impressed by Kaisers out patient care. I see my cardio for the first post op visit on Monday.

I had a very difficult time in the ICU and now that I am not taking much pain med that zonks me out at night, I am having some nightmares about it. Somewhat alarming for Steve! I hope they will run their course and be done with.

I slept in bed last night without any problem. It was nice but I still love my recliner...I have it all tricked out and am not ready to give it up yet! My two best toys are the recliner and my long handle boar bristle shower brush.
My incision looks good...I think the plastic is starting to come off....I don't mess with it at all!
Mentally I feel stronger...spend hours reading....flat emotionally still....really looking forward to next tuesday
When my darling daughter comes home for
Thanksgiving break. We have
Thanksgiving every year with my oldest friend..my ex roommate from Boston and her family...it's quite a big, loud group and one of my,most favorite holidays...all the kids make an effort to be there plus all the others. It's really a great day and this year especially poignant for me.

Good luck to the new batch heading into surgery this week and to the newly dones. It's great when it's over!

Hi,
I am 11 days post op and into the swing of recovery. Everything is going very smoothly- meds, vitals, visiting nurse, support. The pug could be better and stop snoring so much but you can't have everything!

It has been much easier than I anticipated:
I could shower and wash my hair from my first day home. I am very stable on my feet. My incision is 4 inches and healing well with zero interference. My recliner is fantastic..I started out in bed last night but it was so loose and uncontrollable I was moving around way too much. I am a certified side sleeper but have not had any problem sleeping on my back. The infinite positions of the recliner make it so comfortable. I know my sternum is flat and healing all night so as weird as it is sleep in a chair, here I will be.

My face and hair seemed very dry post op- I think those drugs are strong- so a good night cream and hair conditioner is handy. There seemed to be remnants Of adhesive on me that needed to be taken off too. There is nothing like that hot shower everyday. I have a stool chair in there if I need it but have not sat down. Having the shower on a wand has been great for my back. So,relaxing.

Keep,on top,of your diet- those pain pills just stop everything so do whatever works for you . I came home at the same weight I was on the day of surgery and have lost about 7 more pounds. I am still on lasix and have night sweats, so I still must have excess fluid.
I am eating veggies, chicken soup, eggs, smoothies . Food is not quite appealing but I have no bloat or other manly side effects I am happy to say! I do not sound like a farm animal either!

I walk 3x a day, slowly increasing the distance. It's pathetic but you have to,start somewhere- I find myself just exhausted on these walks...and I hope to be running again in 3 months! My lungs automatically expand and i take deeper breaths and stand up straighter so I guess it's all true about the magic power of walks! The spirometer is really tiresome and a necessary evil- I get up to 2500 max...my family all had a go at it and blew it off the charts which was incrediably annoying and they are now banned from it.
The pain has decreased every day...I take Tylenol during the day and one Percocet every 6 or 12 hours. I am not fussed about it.

The whole bra issue is redundant. I had bought several sports ones that were not too tight but never wore them in the hospital. I don't have too...the incision is between breasts and higher up. So ladies, don't worry over this. When I go out I wear one. My incision is ok under a shirt or scarf...it is more painful on the right side, as a deep soft tissue injury would feel. My right shoulder is still stiff from the table positioning but getting better...I use a hot water bottle and/ or heating pad.

Emotionally I am still pretty flat. I think that's normal,too...the body cannot heal if emotions are upset. When I think back I think, yes, this process has been very refined but the word "doable" does not come to my mind. There were some really painful periods of time and restraint . Don't even mention chest tubes- they need to do away with those!
My surgeon sent me pics of my excised valve that he took in the OR at my request. It's very sobering to see ...it looks completely non functioning and unhealthy.

I am surprised to have become an extreme cardiac case overnight...but they saved my life for sure.

I hope these tips help the next lot going in...to my peers, be well and happy healing!

Nine Days Post Op- out for lunch

I am not feeling so hot tonight. It comes on so quickly....my heart rate goes up a bit...I cough a few times...I just feel like i have been run over. Not feeling faint thank goodness. Maybe I should feed the unicorn more often....but I am not feeling pain....had a great, gentle back and foot massage which put me to,sleep but I woke up ill. So many things to worry about in these early days. My family is being great and there are lots of lovely bunches of flowers all about the house. I spent some time thinking about those first 2 days....not really ready to deal.

It's a bit of a free for all at home....everyone is wearing a new hat. I over extended and my sternum got very, very sore. The visiting nurse arrived and gave me hell. So now, I walk around with the pillow so I do not use my arms. I turned into some kind of nazi homemaker issuing orders. My oldest friend came over to take care of me...we were nurses and roommates in Boston back in the day. She spent the night and helped settle me in. She swears she read up,on cardiac surgery- she was a labour and delivery room nurse! The new digital thermometer stumped her but she sorted it out.

I feel pretty good, considering. I can move without any problem, shower, dress. The pug is behaving in a beastly manner so I cannot do anything about that. There is a big learning curve here...I have to go SLOW and it has already used up all my patience. That's my biggest problem. So, I am staying out of the running of the household...I can't walk around demanding things be done my way, sadly. I have adopted a new attitude.
I have incisional pain and deep sternal pain, the right side worse than the left. My right shoulder remains very sore. I have a mini incision- about 3.5/4.0 inches that I think is pretty ghastly but everyone says its small and looks great so.....it can only improve.
I am taking 2 percocets every four hours altho during the day I sometimes take one. Just depends on how it feels at that moment. Two really relax me....I ride off to sleep on my white unicorn to meet up with old pop stars and card sharks. I do like not being a post op. patient for a few hours.
I feel a bit stronger mentally and have started reading again. I do not feel any obvious pump brain interference. I do feel a wash of calmness and peace that had previously eluded me and that's very healthy. I do not have a tremendous feeling of relief or gratitude yet but am sure it will kick in any day now.

I am not up for visitors quite yet- I don't feel like talking to anyone. The idea is exhausting. Maybe next week.

I hope all my fellow travelers are making their way down this road with success. Those coming up- it's a whole new ball game post op! Lots of love to you all.

Without any fan fare or trumpets blowing or much notice, I was released for time served this morning and am home sweet home. I had a long hot shower, washed my hair and am now propped up in my bed with pillows. Ice water, a gorgeous orange tree just outside and the humming pool makes for a picture of serenity. I feel so relieved this whole drama is done with.
I had a very unremarkable post op...I have a small case of pericarditis but everything else is fine. I have no complaints. The doctors and nurses were dazzling and competent. They all spoke in a soft voice and always said "yes".
The hospital sort of turns on you by day 4. All that waking up, sticking you for labs, weighing you at midnight. It's no place to recover. Last night I dreamt that Tina Turner was my nurse and she would not stop singing and doing the side step.I found myself wondering when she got into nursing. I am
taking Percocet for pain every 4-6 hours and I will stay on this for a few more days then drop down to one.
I have some nerve damage to my right shoulder from the table position that is really sore but my left arm is great. I am up 3 lbs. from my pre- op weight and on lasix. They put me a little bit of insulin post op- they said the body is in shock and recovery goes better if they control the glucose so they kept it in the 90's. I was afraid I became a diabetic by mistake! But no, off it now and glucose normal again.
Zero appetite.
A great feeling of peace and calm I have not felt in months. I am very comfortable moving about and will take a page from Aubrey's book and increase slowly.
They took some pictures of my valve at my request..I have not received them yet but am curious to see what all the fuss was about.
Thank you all for hanging in there with me. Dan, don't stress.. You will go thru the paces and be fine. It really helps to be a runner..I surprised everyone with my agility post op. Made things easier. I was up the night of the op.
Off to sleep now.

Hi eyeryone, I am back. It feels like I have been gone a very long time. I am in a cardiac step down unit now- such lovely calm people work here! I will go home in a few days. Nothing out of the ordinary to report, everything is very routine.Steve and Matt have been taking turns sleeping over which as been a huge help. I still feel pretty wiped out, will write later

Another day of slow and steady. Lynn has no more tubes and wires and was feeling better and a bit more mobile. She went for a longer walk with the PT today, and had told me before the op that she is motivated to walk a lot.

Not much better to report actually.

Best wishes to our fellow travelers,
Steve

was plodding along. Lynn moved from the ICU to a surgery ward in the morning. Now she has only the chest tube. Took a few short walks today including an unauthorised unaccompanied one, but still pretty drowsy and sore and not easily amused. The supply of percosets helps a bit. Were me, I'd be yelling my head off. Just in the nick of time, our great friend and accomplished sailor Ravi arrived bearing dim sum and finest Monkey Shoulder to ease the helper's pain.

We drove across the Golden Gate Bridge at 6am this morning and by 8.30 Lynn was wheeled off in pharmaceutically enhanced spirits to get a new aortic valve. The main event started about 10.15am and by 12.30 we were summoned to the ICU. That's how quick this was, after all the waiting. Her doc says the procedure went well and all is good so far. Lynn woke up during the early afternoon, and was quite impatient about getting rid of all the mouth tubes. They took those out as soon as she passed the breathe-on-your-own test. Lynn was very keen to know where she was, and somewhat grateful that it so obviously wasn't heaven. Now it's pretty much as we were prepared for: feels pressure on her chest, some nausea, very thirsty and only allowed ice chips, discomfort but no pain, etc. Not fun, but they expect to have her walking tomorrow and into a normal ward. There we are then. End of Part 1.

My Best Wishes to all of you doing this thing (or having it done to you, I should say). The doctors and nurses are great and tremendously competent; you'll be in excellent hands and you are not alone.

Cheers, Steve

The long awaited day's Eve is NOW! I am signing off…Steve will take over…I will still read this site as I don't mind admitting I am currently addicted to it's good vibes but I think I must focus and hone the zone and not get involved in writing.

Thank you everyone following me. Please light a candle in your house for me for a few hours tomorrow morning and send me a wish on the breeze.I brought a special candle back from Notre Dame that my family will light:)

There is a mountain of stuff in the corner of the bedroom that needs sorting.I have to pack now. I'll go for a last trail run too. It will be an ordinary day..I will zip around in my little car with the top down in the warm California sunshine. I will go to the post office to send a package to my darling girl, the farmers market, starbucks, and the hair salon. I will spend some quality time with the pug, have a low key dinner (steamed veggies) with the family. If I have time I will make my famous French Onion Soup ( a dash of Pernod at the end gives it a great kick). Then I will do the hibalclens shower thing and get under the covers. I will try not to think that tomorrow will not be an ordinary day like today. Because tomorrow I am doing something different- I am going to saddle up my unicorn in the predawn darkness and go meet my barbarians, whose snorting horses and clinking armor I hear outside my gate. I am going bolt straight towards them and kick some aortic butt. Piece of Cake.

Hullo, I am Lynn's husband, Steve.

Lynn asked me to introduce myself before she goes in because I'll be posting news for a few days until she wrestles her ipad back from me. So, finally we have just 3 days to go before V-day (or lift-off, as L calls it). It's been a slow 5 months since the day we got that strange news about what has to be done. We are now very well informed about stuff I'd never heard about before, and that by itself is very empowering.

I must say, this site has been a tremendous source of information, inspiration and camaraderie for us. I picture a column of heart valve patients walking many side-by-side towards their appointments at a sort of involuntary craft workshop, making friends with the ones nearest them and exchanging some humorous banter, and listening to advice from the ones who already finished the session. Then coming out afterwards and encouraging each other, and sharing their own experiences with the people behind them in the line. None of you expected to go through this, and all are dealing with it so bravely. It has been so hugely helpful to Lynn and me to be around this group. No one is alone. Thank you!

To the folks who are about to have have their procedures, good luck, you have our very best wishes for a speedy and comfortable recovery. And to the ones who are now recuperating, and some who already back in the pink of good health, and getting fit again, thank you for the information and good stories you shared. Every bit of it is useful and encouraging.

And now it's nearly our turn .....

Talk to you soon

Steve

Steve

Three more full days until my aortic valve replacement happens in SF early thursday morning, Nov. 7th, 2013. It is with pleasure that I write these words. The past 5 months have been nothing less than a prison sentence and I feel now I am about to be released, about to be freed. In preparation, I am hanging with my awesome family doing normal things with just a little bit more appreciation and concentration with the result that I feel calm and happy and willing.
Yesterday Steve and I went out to West Marin, our fav place, and my gods smiled with me all the way - from my haunts in Pt. Reyes, out along Tomales Bay thru Inverness, to Abbots Lagoon and finally the blue- grey misty Pacific Ocean in all it's power and loud glory. We took home a dozen fresh oysters to savor the experience. We should have bought 2 dozen they were so good!
My fatigue has gone- I am still not sleeping but I am not feeling tired anymore. I sleep in hour blocks and awake quickly with good recall of the short story that just played or remember only one or two details- nice dreams all. It's ironic that I gained an extra hour last night. The endless night became one hour more endless.
I have been losing weight as I go by happenstance...a few days ago I was walking around the house and my rings dropped off my fingers and pinged off the floor...my feet are swimming in my boots..I feel like Tom Hanks in BIG...very amusing.
It's been a very long haul to this point. When I consider how it started, how uninformed, frightened, shocked, and angry I felt to how at ease I feel now, I know my own spirit has won out.
Early on in this process, I had a chat with a zen abbot from the New England Medical Center in Ma. When I told him I didn't think I would die, he cocked his eyebrow and rocked back on his heels and said " But you might". It freaked me out for days.Today, I know I might die and it does not freak me out. I still do not think I will, but one cannot ignore that fact, it must be addressed and thought through. Its good to be zen and accept all possible outcomes without fear or judgement. This event has put my mind under a microscope and I have looked and learned.

I think only people in the same situation can understand the difficulties in the preparation for open heart surgery and thus I would like to thank you all, everyone who has sent me a note of encouragement or love or advice these past 5 months. It has really meant the world to me and helped me so much. I send the same love back to you all.

We spent 5 hours doing the pre-op admitting stuff..all is well... it's a go for lift off next thursday. It was all very impressive and the people were lovely..I feel completely safe.
Then we went to the DeYoung Museum in Golden Gate Park and saw the most wonderful David Hockney exhibit I could ever imagine. Seeing those colors just changed my whole mood. I am energized and and happy! I miss painting!
I am calm and settled...I am getting into a zen frame of mind...eliminating outside noise and distractions. In the home stretch now...if only the Red Sox would win the series I would have a perfect life.

I feel some subtle changes, a shifting from my mind to the world around me, something more physical than just this idea I have been nursing for months. I feel like the mooring has been cut. I have been out here, alone in my lifeboat, but tethered to some rock. I got pretty comfortable actually but now the boat is rocking and I am standing up waving my arms. My voice sounds funny..too loud, too soft, too bright. I had my last social outing last night to a friends house for dinner...the wind was howling in the Berkeley Hills, the fire place so warm.. Nice people, food, and wine. I heard my own voice talking and thought " what am I saying and why do I sound so cheerful?" I am not cheerful. I am not happy.

I am flexible and elastic. I am healthy and fit. I am on a high protein, no gluten, no dairy diet. I drink tons of green smoothies. No alcohol for ages. I have never looked better. I would never live this way normally either! But it gives me a measure of control..I dread how intimate this experience will be. My heart is a secret and dark place..it should never have a spotlight on it, unless I am the one holding the torch.

So I have been yielding to my heart's debut.The word yield is perfect- I am in my boat and have raised my white flag. I say yes, ok, I will go onstage. Yes to everything. I will give it all up, be so weak I cannot stand to brush my teeth. This is whats required. This is how it works. This is what I am doing.

Here is a little poem from late last night when I was thinking about Lou Reed.

I never knew how hard it would be to wait;
For a miracle un-prayed for,
grateful and repelled.

Very soon
These sleepless nights
will seem a gift
Of strength, of ease, of choice.

Somethings coming I hear it now
It's walking in the snow
Well lets go;
Lets make our perfect day and walk on the wild side.

The Pug

Our Girl

Our Big Kids

Two weeks from today and the surgery will be over! This waiting is driving me crazy! I find I am now thinking that the hospital part will go by in a blur and will be somewhat "easy" and the real hard part starts post op day #1. I really enjoy helping people and really do not enjoy being helped!! I am wildly independent; if I do get ill with flu, I like to disappear and take care of myself, so I really cannot imagine how this is going to go. Plus I think I am the only one who can get it right! Oh, have I mentioned I am something of a control freak?Haha..I think I will being learning a lot very soon!

I am in a calm, confident and peaceful place these days. My awesome family has cocooned me in love. My husband supports me in a multi dimensional way; my son is sweet and smiling and always helpful. He is sticking around post op to help me out :); our 20 year old daughter is at university but her sensitive intelligence and fragile beauty warms my soul; our Buddha child is steadfast. She is 25 and was born with Downs. I never use the word syndrome because that sounds like an illness. Downs is an identity. She is pure serenity and love and the touchstone for all of us.She will help me recover in spirit.
Even our naughty pug is behaving better, if thats possible!
So, I am not afraid..I am anxious..more like stage fright than fear. I just want to show to begin now!

I am feeling very cheerful today but I thinks it's more a result of the beautiful weather than anything else. I am making my way to the front of the line, three weeks to go. Three weeks and it will be over with. Amen to that!
I've been busy getting everything organized..carpets cleaned, dog to the vet, misc. house projects. I got a great deal off Craig's List for a zero gravity recliner which I plan to use for a few months and then donate to a local nursing home. It does all that infinite position stuff but is hideously ugly..black vinyl...so I have covered it in new sheepskins and now it looks and feels better. I also picked up a few pieces from Relax the Back that creates a zero gravity position in bed...we'll see if that works...sleeping in a recliner for weeks sounds like the worse long haul flight ever! In the 1980's I used to fly often from NYC to South Africa; it being the time of sanctions we had to go around the bulge..over 30 hours door to door. I should have had my valve replaced on one of those flights..I would barely have noticed!
I am ready for this uncomfortable experience..I wish it were sooner actually, I won't be any more ready than I am right now. I have my pre- admit. appt. on Oct. 30th.
I am having a few small dinners and lunches with friends..they have really stepped up to the plate...it's scary to see how many people plan on coming to help post-op! More than I ever see in real life! Thats so true though...people are innately good...they will do the right thing if given the chance. Here is a little poem I wrote a few days ago...I was sitting at a cafe table at the Farmers Market while my husband was waiting on line for our coffees and I watched with amusement as the woman behind him started flirting and hitting on him! Life is the chaos principal in action!

I am packing for a trip
I am not taking any clothes... because..
There will be no weather to consider.
No night or day either.
The place I'm going too is on no one's map...not even my own ...the distance not measured in miles but by liquid mil liters.
I'm calm as I wait; I'll be back soon
Things will look different but my guides will be here.
Almost impossibly difficult this, but not.

Venice Sept. 2013

Nov. 5th and 7th will be ordinary days for most people; Halloween is over and its too early to prepare for Thanksgiving. Life will just go on. For myself and a fellow OHS patient, these 2 days will be life changing, scary, catastrophic, and the end of who we have been up to now. Yes, I am grateful to get my bicuspid valve replaced of course. But I am sorry to know my ramparts will be breached so to speak..my core no longer intact..the battleground could not possibly occur in a worse place!
Such a pity so much harm must come my way in the name of the fix.
That said, it's time for the warm and fuzzy feelings to say adieu. This event feels like nothing less than preparing for a great battle..I see the dust on my horizon..they are coming and I am going out to meet them.
Some events in life are difficult and you can muddle through them in a haphazard way. This event is not like that- it calls for a clear head and nerves of steel. That is how I feel now. No more weeping - it's action time..I am busy setting everything up and getting my ducks in a row. I am doing wills, medical directives, house busting, and support line up for me and my family.
I think about my "silent" hour with mystery. That is my projected pump time. It's a neither here nor there place. I think about what will happen while I am away...the whales swimming in deep blue water, jet contrails slowly crossing over Lucas Valley, children playing outside, dogs panting, coffee making.. I imagine myself on the nether shore, looking at the surf, waiting to be called back. My gods will be with me. They will bring me back, of that I have no doubt.
Who else is having surgery in November? We are a brave group and so well informed by participating in this website. I am so so grateful to Adam Pick for providing this forum..I know the recovery is different for everyone and has complications. How can it not, actually? I know what most of those complications are, what will be hard and not so hard but mostly I know this experience is manageable. I know all that from this website alone. I continue to wish everyone here well in their journey. Thank you for all your support..it means so much!

One month from today and all the waiting will be over! I am very nervous of course, but I am looking forward to Nov. 7th and the end of this anguishing waiting period.

I have to believe I am symptomatic at some level with severe Aortic stenosis, even if I cannot pinpoint it. I get short of breath going up steep inclines, more than my fellow hikers. I think I must have really adapted and also that the change to severe status is new. In any event, I know the magic these surgeons are capable of and I have confidence in them.
I feel myself closing down now..hyper sensitive to anything violent, even halloween decorations! I hand pick my company. I am working to build back up my psychic strength which as been depleted by the long wait. I am being more physical. I will be ready on the day, for sure.
I would not be able to have come this far without this site and all my cyber friends, whom I follow and cheer on! I have learned so much good advice and have such a clear picture of the process. Thank you all so much!

I have now met with my surgeon, Dr Melikian of Kaiser SF, and have had my date confirmed for an AVR on November 7, 2013. I am almost laughing as I write this...I am so relieved to finally have a date for this event.

Since I found out about my failing heart in May I have been consumed by it...it has put a serious dent in my otherwise witty repartee..it has been a dark anticipation breathing with my every breath, waking me at night, jolting me from day dreams. Four months later I was feeling so enervated ...the conversations I felt obliged to have with my husband and children gutted me...never, ever have I experienced such a deep sorrow.

I feel very comfortable with Dr. Melikian and the staff at Kaiser. I feel like I will survive and I hope no one will ever look at me again and start talking about sudden death.

Six weeks and it will be over. I am grateful I will have had 5 months time to prepare..it has been an interesting experience, with many associated benefits...but it has been too long. Too long to dwell on what might not work out.

I am so grateful for the love from my family, for my husband who took me to Paris and Venice to cheer me up, for friends who have come to my side..this is the stuff of life, for me this day was always coming, this is what makes my time in this life real, this chance of losing it.

Blessings to all who will go before me and to my cyber friends Ernie, Cindy, Higgy, Natalie, Joe, and Aubrey who have been so generous to share their recovery stories so that the rest of us will know what to expect. You are all such awesome people.