Mary's Heart Valve Journal

I am alive.

Just spent a week in twelve rehearsals to sing Bach's b minor Mass last night. Last year I struggled to walk a hallway, gasping for breath. Praise to God I have a functioning aortic valve !

"You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
Cause your story's far from over
And your journey's just begun"
.....................................................

This is part of a song that touched me. You can hear it all on YouTube.

Skipping up the stairs to the choir loft this morning, it hit me what a resurrection I have had since last Easter. Nine months out from my surgery last June, no pounding heart. shortness of breath or dizziness. Miraculous. I am grateful beyond words.

Happy Easter, may we all experience a miraculous return to health.

Did you hear this from the surgeons? There is a new video on mental health on this site that has a surgeon saying this. How many of us were healed in six weeks? My incision was healed. Not my sternum, not my lungs, not my heart rhythm, not my ribs, not my stamina. My be twenty-something athletes heal in six weeks.

I am eight months out and still healing. Hopeful and determined, but still healing. And hearing "you'll be healed in six weeks" makes me shake my head in wonder (what are they thinking) and disbelief now.

Routine blood tests showed a abnormal TSH level, so now I am waiting for tests to determine the exact problem. I am noticing a feeling of my heart pounding, and EKG shows bigeminy, a pattern of alternating regular and premature ventricular beats, not unusual for this condition. Saturday I had to sit down on a curb when walking out to my car from a restaurant because of shortness of breath. It felt similar to my pre-surgery time, and I wanted to weep.

My acupuncturist is confident that she can help me with this, so I am going to be seeing her weekly. Her assessment is that I am still depleted from the surgery.

Of course I am doing a lot of research, and have found that there is a positive correlation between radioactive scans, as well as Amioderone, in triggering the condition. I had innumerable X-rays, cardiac cath, several CT scans and as well as Amioderone in the course of my treatment. Add that to age and a family history. Bam!

This feels like another big blow, so I am doing my best to keep my chin up and trust in the Divine Healer. He brought me through an aortic valve replacement in June, He will bring me through this. Last weekend I was able to sing the Mozart Requiem with our chorale and orchestra, which was thrilling. And I am so fortunate to have supportive family and friends, including all of you. I am grateful for this site.

Grateful to see this day. "What shall I give Him? I'll give Him my (mended) heart". May your days be merry and bright.

For six months I have had pain at the bottom of my rib cage, radiating to the armpit. Finally, I started PT, and the pain is abating.. I am thrilled!

The physical therapist says that the muscles and cartilage have contracted together in most of my right rib cage as a result of lengthy pain, guarding, and inactivity from a pleural effusion and pleural rub, after having large chest tubes under the breast gor drainage after the surgery. The pleural effusion - fluid between the lung and the lung sac was present in the hospital. The rub developed later.

If you are having cotinuing pain, other than the surgical site, which I have seen often on this site, I would encourage PT evaluation from a skilled therapist. My therapist is helping a long term problem that I had been told might be permanent, finally resolve. Praise God

Six Months
Grateful to be celebrating this holiday season after my AVR this summer. I graduated from rehab, reached five Mets: 4 MPH with a grade on a treadmill. I reccomend rehab highly. I am generally feeling very well cardiac-wise, have healed well except for an ongoing problem with significant pain in my ribs that was caused by the two large chest tubes under the right breast. After seeing seven different doctors who seemed to agree that I had nerve damage, a physical therapist last week told me that the ribs are misaligned and immobile, and started treatment. I am hopeful that she can help me. If I did not have the pain from this, there would be little lasting recuperation left, other than fatigue.

I was puzzled by a finding of severe tricuspid regurgitation from an echo done by my local cardiologist's office. And I have a loud murmur. My surgeon's office said to gather up all of my records since the surgery and send them for the surgeon to review.

Despite those issues , I am grateful to be alive, and hopeful for the future. The aortic valve replacement saved my life, plain and simple. So I get to celebrate Christmas with my family. I thank God my husband and family, Dr. Svensson and the folks at Cleveland Clinic.

Five Months post AVR today. I am still recuperating. From reading this site, it appears that one's age and health status have a huge impact on the rate of recovery, not surprisingly. I am coming up on the end of cardiac rehab, and have progressed admirably., I can do 3 m.p.h. on the treadmill with a grade. My problems with cardiac arrythmia have abated, medications are titrated properly and I feel pretty well.

However, my right chest is very painful from the armpit to the bottom of the ribs. Doctors have decided that there was nerve damage from the large chest tubes placed during surgery. I am using big Lidocaine patches daily. Whether tbis condition will heal remains to be seen. I am hopeful that it will.

That said, am grateful to be alive, and for all the help that I have received to come to this point. Sending prayers for courage and healing to you all. Blessings, heart brothers and sisters.

At four and a half months out from an AVR with a mini-sternotomy, I discovered from a CAT scan of my lungs that my sternum has not yet fused. I understand that this is not uncommon, especially for someone with osteopenia, and that complete fusion can take a year. The sternum is tender and bumping up in one place, probably between two of the seven wires.The effect is that I am back to being restricted to lifting no more than ten pounds. This recuperation is a long winding journey. that said, I am grateful to God to be alive.

Seventeen Weeks: Up and Down

Seventeen weeks out from my aortic valve replacement, I remain in recuperation mode, the landscape just keeps on changing. The good news is that I have completed 24 sessions of cardiac rehab, and have progressed well. One of the workers there told me that most people do not go as far as I have already. The cardiac arrhythmia has almost disappeared, thanks in large part to my acupuncturist. And I am back to many of my regular activities, and on good days can log three miles on my Fitbit.

But, I haven’t posted for a while because I have been struggling…. The challenging news (you say challenging instead of bad), is that I continue to have significant pain in my right ribs. I visited a pulmonologist yesterday, after having been told by several medical professionals that the pain was from pleuritis, (inflammation of the lining of the lung), and persistent pleural effusion. He said that my lungs are fine, but that I probably have damaged nerves from the chest tubes, and that the pain may be chronic. oh, and by the way he hears a heart murmur. Oh my.

And the CAT scan revealed that there is some incomplete fusing of my sternum. About an inch of the bone is actually starting to bump out slightly.

The other challenge is finding the balance for the medication. Last week I was having severe cardiac-like symptoms: shortness of breath, dizziness, extreme fatigue, etc. My GP immediately said that it was the Coreg, and reduced it by half to 6.25 mg. Addititonally she changed the Cozaar to a small dose of Norvasc. Now I need to see if these meds are adequate to keep blood pressure in check. After having had life-long low blood pressure until I had surgery, this is brand new territory.

So, here we are. My cardiologist told me after the surgery that I would be recuperated in four months. Well, reality check. Four months? Not so much. But I am alive, my beloved husband is always there for me, I do have medical care and there are so many other blessings to count. Thanks for listening.

Today I have a birthday. In May, in the midst of severe aortic regurgitation and heart failure from a bicuspid valve, I only had a fifty percent chance of being alive right now. Three a half months after an AVR I feel better than I have in years. Praise God for a second chance!!!

For anyone who has finished phase two cardiac rehab, do you know the MET level that you finished at?

I was told yesterday that my center only takes people to 4 METS. The time that I was in cardiac rehab before, I finished at 8. I see four as just barely functioning, not rehabilitated.

At three months out, despite ongoing problems with a pleural effusion, pleuriris and ongoing PVC's, I did so well on my stress test yesterday. Yahoo! The faster and higher it went, the less arrythmia I had, and breathing was no problem. I finishef at 10.1 mets. The PA wrote a report to Cardiac Rehab to step up my intensity. I am thrilled.

Three months ago yesterday, I had an aortic valve replacement at Cleveland Clinic. My recuperation has been steady, but not without complications and I felt that adding acupuncture might give me a boost. It is doing just that.

I have had four weekly treatments so far, and I am taking almost no pain medication now. Before it was two or three times a day.

Three months out, I am still struggling with PVC'S and I still have a pleural effusion in my right lung. I also have pleuritis in that lung which makes my ribs on the whole right side painful.

As you may know , Traditional Chinese Medicine works in a very different way than Western, acupuncture unblocks energy pathways and tonifies the body.

My GP is aware of my treatments. After months of waiting for my lung to clear, I am willing to give this a chance. So far I am seeing some good results. I wish I had started sooner.

Researchers say lower is healthier systolic under 120.

Http://mobile.nytimes.com/2015/09/12/health/blood-pressure-study.html

Twelve weeks post aortic valve replacement today. I was up a ladder to the garage roof with the tree trimmers this morning. Yahoo!

I am so grateful to you all for posting your experiences. I had read several times that one has one's good days and one's bad days. My experience up until last week was a somewhat rough start after surgery with afib, low blood pressure and an infection in the chest tube site. After the hospital though, my recovery has been slow and admirably steady, and I did not think that I was going to have any more difficulty.

Until last week. My cardiologist ordered a chest X ray because I was having pain in the ribs. The result is that I still have a pleural effusion from the surgery, and now have pleuritis and bronchitis. Last week was a wash. I am on an inhaler, Flonase, Claritin, antibiotics and have prescription cough medicine. I missed four sessions of rehab. Rats!

The good news is that the bronchitis is clearing up, and the pleuritis is not so bad. I will return to rehab tomorrow. Having never had lung problems like this I am in new territory. I know that fluid in the lung can be removed with a thorocentesis procedure (inserting a needle to draw it out). But I also know that the procedure is not without risk. And we live in a place with sketchy medical care.

I started seeing an acupuncturist, maybe she can help to get the fluid to resorb.

And I see my new new GP today, (that's another whole story). We will see what she has to say.

In the meantime, it is cool enough to use the hedge trimmer on the out of control hedges, and I think that I am well enough to manage it. Hallelujah.

Anyone else having trouble loading photos?

Does anyone else hear this? I must have been very pale before the AVR.

Ten weeks out, and I can manage six hour days of activity. Sometimes I feel like the bottom drops out after six, and then I rest.

Still having pain in the right lung, so will have a chest X ray next week. I had a pleural effusion in that lung (fluid in the lung cavity) and infection at the chest tube site after the surgery, so the Dr. wants to be sure the healing is progressing. I will have a treadmill stress test in a couple of weeks. If that goes well, I will be dismissed until next year!

I sat down in the congregation during half the service this morning, until we passed the Peace. Then for the first time since OHS nine weeks ago, I just had to slip up into the loft to take my old place with the choir. What joy!

Somehow the words of the hymns had so much more meaning than before my second chance.

People ask me how I'm doing, and I usually say "better every day". Generally, that is true. I have started Cardiac Rehab, and I know that the progress there will be slow but steady. Thursday I had a real breakthrough when I finished up my session and went to talk to the nurse who was monitoring the telemetry. I had had no PVC's the whole time! After having had PVCs pretty much steadily since my surgery I was thrilled, needless to say.

I am getting back to some of my usual household activities: laundry cooking light cleaning, grocery shopping.. And I am walking the dog in the morning when it is cool, as well as doing the stationary bike. Yesterday though I went out to lunch and then a meeting. I had to leave the meeting after two hours, I could feel myself fading and still needed to drive home a half hour away. I had to stretch out in the recliner when I got home.

The pain in my chest is now minor, usually bothers me only when I stress the area like driving or lifting. I am still not lifting heavy things. I do have pain in my right lung and the respiratory therapist at Rehab tells me I have decreased breath sounds on that side. I had a pleural effusion on the right side when in the hospital and was told it could take weeks to dissipate.. The RT suggested going back on the spirometer four times a day with it set to 200, which I started.

As I walked out the door this morning, I noticed a gardenia blooming in the front yard. I was so sweetly grateful to be here on Earth to be able to experience its fragrance. I Praise God for this second chance.

This article answers the question of why it is so difficult to be outdoors in the heat and humidity.

http://www.health.harvard.edu/blog/heat-is-hard-on-the-heart-simple-precautions-can-ease-the-strain-201107223180

By the grace God, I have learned that I am stronger than I ever believed, and could surrender more than I ever thought possible.

For seven weeks after my aortic valve replacement, miraculously, Beebee seemed to know not to come and lie in his place on my chest. Suddenly, he decides that I am healed enough to creep up and snuggle in. Another little milestone!

Six + weeks out from my aortic valve replacement by Dr. Svensson at Cleveland Clinic.

No, I certainly did NOT want to be a member of this club. Yes, I am profoundly grateful.

I had had a cardiac incident eleven years ago when I was an official of a Habitat for Humanity affiliate. I was encouraging the future homeowners by example to continue their work on a house we were building, despite the oppressive heat and humidity here in the Florida Panhandle . Bad idea. It turned out that the heat and humidity were the prelude to Hurricane Ivan. And the next thing I knew, I had had my own natural disaster, I ended up in the ICU with an ejection fraction of 40.

Fast forward to this spring. After years of annual cardiologist visits where I was told everything was normal, and several ER visits for irregular heartbeat with the same result, suddenly I felt like I had eleven years ago. Short of breath, feeling faint, exhausted.

An echo showed severe aortic regurgitation. I needed open heart surgery.

I was stunned. Incredulous. Feeling double crossed.I was hysterical. Open heart surgery? Me? The healthy one? The one who always eats salad and exercises? BMI 24?

Amid lots of my tears, we sprang into action, and started doing research. Before too long we decided on Cleveland Clinic. The medical care in this part of Florida can be sketchy, we're were going to have to travel, why not go to the best?

We also mustered as many praying friends and family as possible. The next thing I knew I felt lifted up.

I found this site. Suddenly I had friends who really understand.

It did not take too long to choose Dr, Svensson. He is a pioneer in minimally invasive heart surgery, he is the aortic valve guru, and he is an expert in preserving brain function while the patient is on a heart lung machine.

I need to wrote another post about Cleveland Clinic. It is absolutely world class.

I met Dr. Svensson the day before my surgery. He was personable and answered my questions. His reputation proceeded him, so I had no misgivings.

So here I am at six and a half weeks. I am driving. Fortunately I am not working right now, so I can pace myself. The pain has almost disappeared. What pain that I have I manage with Tylenol. Mostly a bit around the three inch chest incision and in my rib cage which I am told is probably from the rib spreader. I sleep easily.

My energy is probably fifty percent, but I feel strong. By the time I got to Cleveland Clinic, I could barely walk to the bathroom. Now I can walk outdoors ( slowly) for forty minutes before it gets hot in the morning.

I am taking 6.25 mg. of Coreg twice a day, as well as 400 mg. of magnesium. I had some problem with low blood pressure and irregular heart beat (afib in the hospital and pvc's after) , but as time goes on things are settling down. Praise God. I start rehab next week.

I would say that I was probably depressed and anxious before the surgery, now I am thrilled.

To be alive.

The mortality rate for severe aortic regurgitation is 50% after two years. I felt like I was literally dying before my surgery. Now I have a second chance. I feel like myself again. My cognitive functioning seems to be intact.

I am eyeing my Rollerblades.

I am joyful to do each little thing for the first time again. A load of laundry. Walking the dog. Walking up stairs without stopping. Singing in the choir. Cooking dinner. Going out to lunch with friends. Grocery shopping. Grocery shopping? Me, happy to be grocery shopping. Oh yeah. Happy to tears.

Thank you, Alan for this site, what a blessing it is. And thank you heart brothers and sisters for all your encouragement, information and support. You are a big reason for my continuing successful outcome. May you also continue to return to perfect health.

Feeling full of praise and thanksgiving this morning. One month ago today I had my surgery. I got my life back!

Yes, I am still recuperating, but feeling better and stronger every day, and definitely stronger than before my surgery.

God bless my beloved husband, my family, my devoted friends, all the folks at Cleveland Clinic, especially Dr. Svensson, and all of you here. What a wonderful support system. I am so grateful.

Mederma?
I am coming up on one month post surgery. Do people use Mederma or something else on the scar? Mine looks healed, but is purple colored and a bit ropey looking.

BTW feeling pretty well this morning. Pain is down, I was able to use my new bi-pap machine for the second night in a row and I think that it made a difference.

Praise God!

So after my AVR at Cleveland Clinic on June 19th, I was hospitalized two more times. Once for a chest tube site staph infection requiring IV antibiotics, and then when I returned back home to Florida, cardiac arrhythmia, PVC'S gone wild.

I have now been home for 10 days. The worst of the pain seems to be over, thank God. I am managing on tylenol primarily, the chest tube wound still have to be wet/dry packed twice a day. But it is healing and there does not seem to be any sign of infection.

The heat index here in our part of the world has been topping out at 114 degrees with humidity levels hovering around 70. Being outdoors to walk so far has only been possible twice. So I have a track around the house and I put on some snappy music and walk around and around my track it is quite funny actually. But hard to keep up the motivation. Scenery is not that interesting.

Still, I am glad to be alive.

Such an amazing journey. I will write more later. Just want to say I am truly grateful to be alive and looking forward to the second half of my life.

(Husband reporting) Surgery was textbook perfect. Dr. Svensson replaced aortic valve, but found that the tricuspid valve was not as bad as first suspected and needed no repair at all. ICU is an amazing group of real pros. Last report (about 9 hours post-op) is that the pain management is working well, and Mary is comfortable and sleeping (a good thing in the ICU). Surgical team, and especially Dr. Svensson, well deserves the outstanding reputation as being among the best in the world. Cleveland Clinic is great!

Feeling confifent. My family is here, the surgery will not be extensive as once thought. I will know what Dr. Svensson did when I wake up. Thank you for your prayers.

Heart cath clear. YAHOO!

Because I jumped the line? :)

Surgery is Friday. We just left home for Cleveland. I have reached a state of acceptance, by God's grace and help from family and friends like you. Thank you.

June 19 is the beginning of my new life. The Cleveland Clinic called this morning.

I haven't had much chance to get to know you all, this whole process has been such a whirlwind. Suffice it to say, I am grateful to you all for being here and sharing, and extremely grateful to Adam for doing this site. Something tells me that my name is going to be on the upcoming board quite quickly.

My condition has worsened shockingly quickly. Over the period of the last six weeks, I have gone from having some shortness of breath and frequent palpitations but going about my activities to being able to walk for only a minute or two. It is a strange life for an ordinarily active person to be living in a recliner and having my husband do everything around the house. A preview of the weeks to come from what I am reading here.

I will have pre op tests Wednesday and Thursday, with the big day on Friday. Here we go! I will be grateful for my new lease on life.

I am not Jewish, but think this prayer is beautiful and appropriate
Prayer for healing
Hear my prayer, O Lord, heed my plea for mercy.
In time of trouble I call You, for You will answer me.
When pain and illness are my companions, let there be room in my heart for strength.
When the days and nights are filled with darkness, let the light of courage find its place.
Help me endure the suffering and dissolve the fear; renew within me the calm spirit of trust and peace.
Boruch Atah Adonai, Ro-fei HaCholim
We praise you, O God, Healer of the Sick

What kind of bra did you find most comfortable and easy to use after surgery?

We traveled to Cleveland Cli.nc to be assessed, it is a fabulous place, and the people were wonderful. I met with Dr. Patrick Collier, a diagnostic cardiologist ( who had reviewed my records ahead of time) in the morning after an EKG, and again in the afternoon after an echo and a CAT scan. What a fantastic doctor! He took the time, and met us right where we were on an intellectual level, as well as emotional. I saw my incompetant valves working along in living color, especially the blue color, where the blood is rushing the wrong way. No wonder I am exhausted.

Walking down the long hallway to the waiting room, I became so out of breath that they called the paramedics. I found that quite ironic to be there in one of the preeminent cardiac clinics in the world and have people worriedly asking me if I was all right, did I want to go to the emergency room? No, I am NOT all right. That`s why I traveled eleven hundred miles to get here!

So all systems are go for OHS. I do not know yet whether it will be an aortic valve replacement, or repair, or if there will be work on the tricuspid valve. Dr. Lars Svensson will be doing my surgery. He is known to be the wizard of aortic valve replacement and repair, so I am confident in him and his team.

It appears that my conditions quite unusual in that symptoms came on suddenly, and that my endurance and stamina have devolved so quickly. Fortunately the heart muscle is still in good condition.

Dr. Collier told me to go home and "do nothing" until I can get back for my surgery. Since I can now only walk fifteen yards or so without gasping for breath, a wise precription.

We are now waiting for a date.

We have decided to travel to "Heart Mecca" in Ohio for my care. So today, we begin our travel for initial testing on Friday . I am grateful to be going to a world class facility to get a definitive diagnosis and treatment plan. Waiting has been a trial, but we made it with a little help from our friends, especially the ever present Friend.

Do You Snore?
Cleveland Clinic suggests that you have a sleep study done and start therapy before surgery if you suspect that you may have sleep apnea. Guess what? I did, and I do.

I have been told that I snore, but just dismissed it, in the past. Facing surgery made the issue more pressing, especially after reading the Cleveland Clinic warning: “Patients with sleep apnea who are undergoing any type of surgery are at an increased risk for developing respiratory and cardiovascular complications in the period following the surgery,” says Dr. Neme-Mercante.

Complications can include irregular heart rhythms, oxygen deficiency, high blood pressure, diabetes, stroke, heart attack and even death."

I decided that heart surgery itself was serious enough by itself, that I needed to address this variable.

The study itself took two nights: the first was diagnostic. I stopped breathing an average of 18 times an hour due to obstructive sleep apnea. I saw the printout, my brainwaves went crazy. The second night was titration. We tried different masks and the technician determined the optimal air pressure settings.

Stunningly, I felt fantastic the morning after the titration study. Bright, alert, full of energy. I will get a BIPAP machine and start using it. I learned, too that there were NO incidences of apnea if I slept on my side. One can attach a tennis ball to one's back to keep from sleeping on the back. Have not tried that yet.

So, thanks Cleveland Clinic for the information and motivation.

The

Well, this has new meaning to me.

Newly Diagnosed

Processing this change in my life. Just sharing some of the processing with you. I know that surgeons and techniques are wonderful now, I have read success stories and watched the techniques. I know that I will most likely "do just fine!!!!!". Just sharing the beginning of my journey. Thanks.

How casually we say "open your heart". "It broke my heart."

We aspire to have open hearts. We have all had experiences that "broke our hearts".

Soon I am going to have my heart cut open.
After I hug and kiss my beloved husband and sons.
After I surrender to chemicals and gas.
After someone saws through my chest.
Spreads the bones and the flesh.
Stills the essential rhythm itself.
Sends my quiet private blood through a marvelous machine.
And exposes my precious innermost secret, the tabernacle of my being.

Taking hours, while my family and friends and even strangers pray, brilliant people  will search out the little valve petals inside my heart that are tattered and loose. Or ringed with tenacious unwelcome barnacles. They will artfully, delicately, smooth and then fashion the petals back together, Or snip them away, unredeemable and instead, embroider-in a reasonable purchased facsimile or two.

They will do a spectacular Cardio-Renovation.

And then, God willing, they will shock me back to the living.

Oh, I am grateful that there are those with consummate skill, and experience,  and  knowledge who can do such precise, wondrous things: living heart sculptors, flesh tailors, bone carpenters, blood and breath mechanics, all of them. I am grateful.

I am grateful for a profound and living trust in a God who is merciful a and all powerful.

But "It broke my heart", and "open your heart" have a brand new meaning to me.

Oh my,  I wish my heart were not broken.

I wish my family and friends, especially my husband didn't have to go through this ordeal.

I wish I did not have to have my heart sliced and stitched with them waiting.

I wish I were not sitting here waiting , with a broken heart, all of us waiting.

For it to be opened.

Literally.

But that is our reality today.

Blessing for a Whole Heart

You think
if you could just
imagine it,
that would be a beginning;
that if you could envision
what it would look like,
that would be a step
toward a heart
made whole.

This blessing
is for when
you cannot imagine.
This is for when
it is difficult to dream
of what could lie beyond
the fracture, the rupture,
the cleaving through which
has come a life
you do not recognize
as your own.

When all that inhabits you
feels foreign,
your heart made strange
and beating a broken
and unfamiliar cadence,
let there come
a word of solace,
a voice that speaks
into the shattering,

reminding you
that who you are
is here,
every shard
somehow holding
the whole of you
that you cannot see
but is taking shape
even now,
piece joining to piece
in an ancient,
remembered rhythm

that bears you
not toward restoration,
not toward return—
as if you could somehow
become unchanged—
but steadily deeper
into the heart of the one
who has already dreamed you
complete.

– Jan Richardson

- See more at: http://paintedprayerbook.com