Susan's Heart Valve Journal

Greetings one and all. Yesterday was a big day -- my final meeting with the surgeon. I am happy to share that I have my official release from the surgeon and I am free to return to my life with NO RESTRICTIONS. All that, and I have a tiny, beautifully placed scar...not at all what I suspected. Removed from all medication, including the pesky hold over from my little afib scare and told to go forward. I was even told that I could go back to the gym..

The funny thing is, now is the scary moment. For my surgeon, it was just another successful plumbing repair. For me, it is a whole new life.

I'm working hard right now to avoid jumping back into the whirlwind of activity that is Susan Sevier and take this time of enforced Sabbath seriously -- to make careful, mindful choices going forward. This new lease on life is such a gift.

So we shall see what happens next. But to all of you out there facing the surgery yet, I will tell you, just keep your mind and spirit focused on what is important to you...don't get distracted by the details...just focus on getting better. I already feel so much better than I did before the surgery...all that extra blood really makes a difference.

My blessings to each of you who so kindly followed my process, and I'll be checking up on you as you walk your on surgical journeys.

On vacation with Gracie

Procedure complete and Susan is back to regular heart rhythm and rate. Awake and asking for lunch. Thanks be to God and thanks for all your prayers.

Susan has just gone into a procedure. They will first do a esophageal cardiogram to look at the heart. If OK, they will then proceed with the electroconversion to get her heart back into normal rhythm. Thanks for your thoughts and prayers. Will update as soon as we know more. We trust in a good outcome.
More soon everybody. We love you.

Your prayers are bearing fruit. Susan's heart rate is down to 90 now and stayed down all night. Still irregular, but hoping that will resolve soon as well. Waiting for cardiologist report to get next steps. Thanks for all your prayers.

Hello Folks,
This is Julie. Susan is back in the hospital, due to an "atrial flutter", meaning the heart is beating too fast in an irregular organized fashion. Or something like that. Turns out this is fairly common after valve replacement. She discovered it while taking her blood pressure routinely since the tool includes a heart rate. It was too high, and the team at Hopkins advised her to get to the closest hospital. So she is checked in at Inova Alexandria and the docs are conferring. Trying to get her heart rate down by meds. If that doesn't work, tomorrow they will do a trachioechocardigram, and then , if the conditions are safe, shock it back into normal rate.
Scary stuff, but we learned a few things. Good idea to monitor your heart rate at several set times each day after surgery and keep a record. That way you will know exactly at what time a change started(this is important for treatment options.). Don't hesitate to go to the emergency room as quickly as possible when there is a change. Delay limits your treatment options as some are available only in the first 48 hours after onset. So have a bag packed and ready with the essentials you might need to grab in such a situation and know which nearby emergency room you would go to on an evening or weekend(especially if your surgery was not done locally). Keep in that bag a list of meds and all the records you have been keeping after surgery, weight, temp, blood pressure, heart rate etc. And do your research here or elsewhere so you are prepared to make decisions when asked to do so on a tight timeline.
And, last but not least, lean on your friends. Amy, Paul, Ashley, Ellen were there today, but so many others have been there other days too. Much easier to walk this road in community.
So keep us in your thoughts and prayers. Will update as soon as we know more. As always, thanks for all your support.

Just a quick note to acknowledge this milestone: home one week and the recovery is proceeding better than I could have possibly imagined. I continue to have some pain in the night, but I expect that to continue as long as I must sleep on my back. I can feel the inflammation in my body receding as healing continues.

Truth be told, it is as I had suspected. I did not understand that I did not feel well. I had nothing to compare my feelings to, since I had this problem from birth.

I am walking outside several times and today was my first day to get dressed and try and get some work done. I'm sure I'll be napping in the chair again by mid-morning, but it is a start.

Most of all, I continue to be so grateful for the love and support all around me...may I put to excellent use this extension of days that God has granted me.

Last week, this very evening, I was packing up to go to Baltimore and preparing in every where shape and form to hand my life and everything that I am as an incarnated being on this earth over to Dr. Ashish S. Shah and his team of expert caregivers at the Johns Hopkins Medical Center. I had made a long journey from that moment when someone first gave me the at that time unbelievable news that I had a congenital heart defect to the night before the surgery to fix that defect would begin. And tonight I sit in my own study, at my own computer keyboard, and write to all of you to say that surgery is complete and I am in the process of recovery.

I could tell you may stories about the last week but I think I will savor those for now. What I would like to do is thank each and everyone of you, old friends and new, for your words of encouragement and for walking along this path with me. At this moment, I feel better than I could have imagined I would feel just one week after major surgery. At this moment, I see possibility again in my future and my life.

No one can walk a path like this alone -- your words of encouragement and hope were shared with me each day in the hospital, and for those of you facing similar events in the near future, I look forward to sending a note or two to help you along the way.

Can you tell that I am so grateful? Grateful to all of you, to the amazing medical professions at JHM, at the team that took care to preserve my singing voice and the doctors that worked so hard to restore the hope of health to my heart which needed care I did not even know it needed.

The road ahead is a good one, with quiet work and careful recovery, and friends along the way. Thank you again, one and all.

Susan came home today! Pillows in the car to cushion the bumps. She is doing great and is so happy to be home and will be doing tomorrow's update herself. Thanks for all your messages of love and support which made all the difference in the world in the last week. Stay tuned.

Susan just completed full floor walk with Kim and Ellen as witnesses. Now time for a nap.

Things are progressing nicely. Great visit with Eva yesterday. Susan had the last of the tubes removed today and is eating solid food(mini turkey sliders and grilled mini veggies and Philadelphia cherry ice). We did morning prayer and the Sunday papers. Continuing to do spirometer ten times an hour. After a rest, Susan will walk again and then looking forward to a visit from Kim and Ellen who are returning from Orlando.
More tomorrow. Thanks for all your prayers and support.

New toy today-Spirometer. Goal is to blow into it and fill it with air up to the arrow. .susan did great. arrow goes up each day.
Great visit with Eva.
More tomorrow.

Hello Everyone,
Good news is that Susan is doing well and last night they moved her out of Intensive Care to the Cardiac Step Down Unit. One step closer to recovery. She is off of the tubes, breathing on her own, and even ate a small breakfast this morning.
The doctors, nurses and staff at Hopkins Sheik Zayed Tower continue to be exceptionally competent and caring. So grateful for the high level of care.
Agenda for today includes more walking, reading aloud from the Edora Welty ready project , and a visit from good friend Eva Powell. Keep praying. All is well. Thanks be to God.
Julie

Susan just walked down the hall and is now sitting upright enjoying the fancy remote and all the channels on TV. Thanks be to God.

Susan is awake and doing well. So grateful for a safe and good outcome. Thanks for all your messages, prayers, cards ,calls and countless other shows of support. She asked me to post the psalm we read this morning:
Psalm 116
I love the lord, because he has heard my voice and my supplications.
Because he inclined his ear to me,
therefore I will call on him as long as I live.
The snares of death encompassed me,
the pangs of Sheol laid hold of me,
I suffered distress and anguish,
Then I called on the name of the Lord;
"Oh, Lord, I pray, save my life!"
Gracious is the Lord, and righteous;
our God is merciful,
The Lord protects the simple;
when I was brought low, he saved me.
Return, O my soul, to your rest, for the Lord has dealt bountifully with you.
For you have delivered my soul from death,
My eyes from tears;
My feet from stumbling.
I walk before the Lord,
in the land of the living.
I kept my faith.
Even when I said "I am greatly afflicted."
I said in my consternation
"Everyone is a liar."
What shall I return to the Lord, for all his bounty to me?
I will lift up the cup of salvation.
And call on the name of the Lord.
I will pay my vows to the Lord in the presence of all his people.
Precious in the sight of the Lord
is the death of his faithful ones.
O Lord, I am your servant.
the child of your serving girl.
You have loosed my bonds.
I will offer you a Thanksgiving sacrifice
and call on the name of the Lord.
I will pay my vows to the Lord,
In the presence of all his people,
in the courts of the house of the Lord,
in your midst, O Jerusalem.
Praise the Lord!

'

Sorry for the delay in reporting- Accompanied by the incomparable Pastor Amy and our friend Amy Dale during the waiting room ups and downs all day long. And all the wonderful folks at Calvary Baptist church who prepared a goodie bag to help us get through the hours of waiting-including heartfelt cards, snacks, magazines, my favorite country music on an ipod, and even a stuffed beagle to take the place of the real beagle Gracie. Frequent reports from the operating room nurse and then the surgeon. Susan now resting comfortably in ICU and being taken care of by the fabulous staff at Johns Hopkins Sheik Zayed Tower Cardiology department. Of course many reminders to wash our hands all the time to prevent infections. The reversal of the anesthesia is done very slowly-the nurse explained to me that this is intentional so that it is not a shock to the system. At first they don't know who you are, but gradually they figure it out. And there are lots of tubes doing important things like helping her breathe. The work done in the ICU is fascinating-so many little tasks that together add up to excellent care. One thing that has helped me deal with the anxiety with this process(along with the support of great friends) is to take a little more than a casual interest in how it all works. More tomorrow. Thanks for all your s upport and prayers-hopefully Susan will be able to take this back soon. Julie

Surgeon just came out and updated us. Surgery is complete and valve has been replaced. It really needed to be done according to Dr. Shah so the timing was good. Now we are waiting for them to tell us she is in recovery. Thanks for all your prayers a nd keep praying.
Julie

Hello Friends and fans of Susan Sevier,
The transformation has begun. We arrived at Johns
Hopkins Sheik Zayed Center at 5:30 AM this morning. It was still dark, but the Sheik Center is like a sparkly new spaceship. We were so blessed to have Pastor Amy here waiting for us. Susan had to fill out lot of forms and consents and answer a lot of questions about everything. Then all the staff came to talk to her one by one to explain what is going to happen. They had her on an IV so she was getting drowsy. Then we prayed with pastor Amy and we all gave her a big hug and they whisked her off to begin the transformation. She went in around 9 and we hope to have some news by 2. Keep praying!

Hello Everyone. Just took Susan out for dinner and am testing my journaling abilities so I am ready to give you updates tomorrow. Thanks for all your wonderful prayers and wishes for Susan-she couldn't feel more supported and loved as she goes into tomorrow's transformation. Keep your prayers coming. More to come and much love.
Julie

So we are off to Baltimore. We will spend tonight in a hotel and check in to the hospital at 5:30 a.m. If you want to read about how I'm really feeling, you can check my other blog at www.sevierlybaptist.com.

I am calm, because I am lucky...I am lucky to be loved, I am lucky to have access to amazing doctors and I am lucky that this problem was found while I was still very healthy. I have had the great good fortune to step through this process in an orderly fashion (well, mostly orderly), and to be supported and surrounded with faith and love at each and every difficult step of this journey. Tomorrow is no exception.

The posts beginning tomorrow will be in another voice -- they will be mostly information, an attempt to keep those who want to know updated on my progress.

I appreciate your support and your kindness and I can't wait to write to you all again as I begin the road to recovery and to a new life I'm guessing I can't even imagine from this place, tonight.

Being a musician, I am a person who likes a good rehearsal. Even when I have an audition, I go to the location the day before, walk through the process of getting to my destination, and if I can, visit the place where I will audition.

So the only way I could walk through the fear of last Friday's angiogram was to think of it as a rehearsal. As a person who has never had a more serious interaction with the medical establishment than having a check-up and a series of allergy tests, there was a lot that terrified me about the process. And after months and months of this process, I was seriously in the mood for some good news.

And I got some...the angiogram was clean, everything else about my heart is healthy; the wonderful doctors and staff were able to perform the test through my arm; my arteries are clean and clear; my heart is, in the words of the doctor -- beautiful. This is good news for many reasons: it makes the surgery less complicated, it means a shorter surgery and it means a smaller incision (yes, my vanity is in one piece and thriving).

The staff at Hopkins was amazing -- the completed all the pre-surgery prep while I was in recovery so that I didn't have to hang around after for that appointment; I had a chance to meet and talk with everyone including the manager of the ICU where I will spend my first days. They could not have been more human, more efficient, and more supportive if they tried.

While rehearsing doesn't eliminate the fears, it does eliminate some of the smaller ones...like fears of place and fears of process. The moment of performance will always be the moment of performance and that is its very own type of chaos. But the dress rehearsal made things just a little better...and a lot more real.

Thank you to all of you who are walking this journal with me...I am so grateful for my community, both those known and unknown. And now, off to church.

Biking in Hilton Head

Greetings to those of you who have found your way to this journal. I could have written all the details of this journey on one of my existing blogs, but I just wanted to keep this experience a little separate. I'll write in those forums about the spiritual aspect and maybe the musical aspect, who knows. But here I wanted to have a place where those of you who are walking this road with me in prayer can just check in and get the details that I might now share with everyone.

I stand now at the jumping off place -- we have three opinions in agreement, we've met the surgeon, and tomorrow I go for the final battery of tests that determine the actual extent and shape of the surgery. I am more than a little nervous -- it is like going to take an exam for which you cannot study.

But as I have said to some of you, I very much like my surgeon and the risks of this surgery are lower than those I face every time I get behind the wheel of my car or take my seat on an airplane (which you know I do very often.

One thing I like about this site is that it gives you access to the stories of lots of people who have been through this and if any of you are interested in exactly what is happening with me, there are lots of good articles and journals here that won't frighten you or me
(Dr. Shah said never ever go to YouTube).

During the surgery, Julie will be posting updates here for those of you who will be off other places while I get some re-plumbing done (yes, that is me, maintaining my sense of humor).

That is really all I have to say right now...I will post an update after the tests tomorrow.

What I most want to say is that love you all, I need your care and your prayers, and I feel extremely blessed to have so many to walk this path with me.

Namaste, my friends.