Peggy's Journal

I haven't posted anything for a long time. But I need some support right now. My cardiologist thinks my bovine aortic valve is failing. I had OHS 5 years agp, I was 74 at the time. I was told back then that the valve would most likely last 15 to 20 years. Now, my cardiologist says that the new bovine valves they were using at that time are not lasting as long as they thought. He told me they are now having to replace them after about 5 to 7 years. Another cardiologist told me the same thing over a year ago, said would be very lucky if it even lasted 10 years. Now, over the last few weeks I've been having increasing shortness of breath, my ankles are swelling and the other day had chest pressure walking up a short hill. My cardiologist has booked me for an echo tomorrow and hearf Cath on Friday. Also, booked me next week to prescreen for a TAVR. Has anyone else had this problem?

I just had my second year echo done today and will see my cardiologist tomorrow for results. Its been 27 months since my AVR, but still feel a little nervous if my valve is ok, does anyone else ever feel that way?

I had my arortic valve replaced on August 18th 2015 with a Bovine cow valve I affectually called Bessie. It's was 40 years ago when I was getting a pre health exam for employment that they heard a heart murmur. But wasn't until about 16 years ago that I started getting yearly echos which always showed mild/moderate. So I kind of fell into a false sense of security that it would stay that way and no need to worry. Then came the symptoms, first ankles swelling so okay cut back on the salt intake, then the shortness of breath and climbing stairs I would feel a tightness in my chest. But I am getting older and have put on some weight I would tell myself. However my symptoms got worse and I was so tired all the time. Finally came the phone call from my cardiologist, "your valve has significantly worsened it is now severe, come back for a repeat echo in six months." I thought what? That's it, I felt like he was giving a weather report, he was that causal. So I decided to see a surgeon for a second opinion, 2 weeks later after viewing the cd's of my echos I was told I needed surgery. He ordered a heart cath and TEE to confirm the diagnosis. The good news was I had no blockages but my heart valve had now gone from severe to critical and I needed surgery asap. This is a death sentence for you if you don't have this surgery the surgeon told me. I was terrified but at the same time I felt very comfortable with this man. I was about to place my life in his care and he would actually hold my heart in his hands. No, I did not seek another opinion, I had prayed for guidance and I knew that this was the surgeon I wanted and a good thing too because time was running out for me as My valve was already in a critical state. I began to research and read everything I could find. My surgeon had some videos he made on line about aortic stenosis and OHS and I watched them over and over. I found this web site and so thankful to Adam... Most important I had to learn to face my fear head on. The very thought of sawing my chest open and cutting into my heart was frightening and actually going to stopped my heart, what if they can't get it started again? This will drive you to your knees, it did me anyway. I prayed, I need peace because I can't handle this fear. The Lord gave me Phil 4:6-7; Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God which surpasses all understanding will guard your hearts and minds in Christ Jesus. Then in John 14 Jesus said, let not heart be troubled you believe in God believe also in me, my peace I leave with you... I can honestly say that peace did come. I remember the morning of my surgery after saying goodbye to my family then being wheeled into the OR. I felt a calmness, a strange unexplainable peace, I knew I was not alone and no matter what the outcome I would be a winner either way. Well it's been 2 years and 5 days and doing great. My recovery was hard mainly because of my heart being so critical, but that's another story which I had to learn to trust God for that as well. Peace and blessings to all...

Yesterday had my echo and saw my cardiologist today for results. I was a little apprehensive as I've been experiencing some shortness of breath on assertion for example, today I had to walk up a steep hill from the parking lot to my doctor's office. When I got into the lobby I was very short of of breath and had to stop a few seconds to catch my breath before finding the elevator. I remember thinking this has to be from the broken ribs I had suffered from a bad fall I had 5 weeks ago, but then again, maybe something is wrong with my heart valve.. My ribs have been healing well and haven't had much pain in the past week or so. Well, my doctor came into my room with a big smile and said "I have great news the echo shows your new valve is showing normal function, the heart ejection fraction is within normal range and the enlargement of your heart has finally returned to a normal size." I remember my surgeon told me that he had giving me a heart like I had when I was 19 years old, but my heart had been enlarged for so long that it would take 9 months to a year to return to normal size. Anyway the doc said my breathing problems most likely is from a little plural infusion around the ribs as it takes a least 6 weeks or more to heal. Heart surgery is a life changing experience both physical and emotionally. I feel you may recover physically but never fully recover emotionally from OHS. It was an experience I will never forget and will always be aware that my bovine valve may wear out someday and I face another surgery, but hey, if or when that ever happens I will face it head on as I did before. And like my doctor says by then they may even be able to do a TAVR. I am learning to live one day at a time so thankful for my new heart and every day is a gift from God...

I' m back in St. Louis to see my cardiologist for my 6 month visit. He's very pleased with my progress says I have NO heart murmur and heart sounds good. I will be having an echo on Thursday as he wants to compare it with my last echo one year ago.. I'm a little nervous about that, but, he doesn't seem concern.. This is something I will have to do every year the rest of my life. Funny thing, even when our hearts are fixed we are labeled as a forever heart patient. :-)

I was suppose to go to St Louis this week for my 6 month visit with my cardiologist and a echocardiogram. However, the night before my trip we went out to eat and I fell and broke a rib, ugh! I feel like I just had heart surgery again, well, maybe not that bad. But it sure is painful. It was the same area where my surgeon had broke 2 of my ribs when he did my OHS and he had wired the ribs and wired my sternum internally. I was afraid that the fall had damaged those wires and clamps. But everything looked good except of course, the broken rib. They told me in the ER that it was almost impossible to knock those wires loose once the sternum has healed and it has been 14 months since surgery. So now I'm back to sleeping in my recliner once again, because I can't lay flat and have to sleep on my back. It hurts to take a breath or cough. My doctor was concern mostly of getting respiratory infection or plural infusion so I'm back to doing the deep breathing coughing routine and using the spirometer again, sigh...

Labor Day one year ago; I had only been out of the hospital one week and not doing well. My shortness of breath had become worse. I couldn't even comb my hair without feeling I couldn't breathe.. Just getting from my recliner to the bathroom, even with a walker was difficult. My feet and legs were so swollen they looked like sausage rolls. I had plural infusion when in the hospital and had gained over 24 pounds of fluid. On my day of discharge another chest X-ray was done which showed the fluid decreasing, so I was sent home. Six days later, hardly able to breathe and heart pounding and weak as a kitten I called my surgeon and was told by his PA to go to the ER for a chest X-ray. The fluid had increased, so more Lasix was given. I was sent home with orders to to call my surgeon the next day. The PA thought that the Amiodarone med I was on could be part of the problem. However, my doctor wanted to keep me on it awhile longer because it helps keep the heartbeat regular and prevent Afib.
A few days later, very little relief of my symptoms, had an echo which showed my bovine valve was good no leakage, wow, that was a relief... I was following my cardio and low sodium diet to the "T" which was really not that hard as my appitate had not fully returned since surgery.. I was warned about depression was common after surgery, but I was ok until about 2 weeks post-op and then the tears came unable to stop. I began to wonder if I would ever be same again, I question if I had made the right decision having this surgery. It seem like I would have a good day or 2 and my spirits would be hopeful, then I would have 3 or 4 bad days and the tears would flow.. For the first time in my adult life I was not in charge and was dependent on my family for my care. That was hard, I have always been independent. I felt guilty, for putting my family through this and regretted that I had not gone to a rehab hospital ( I was staying at my son's house). My family was so good and patience with me.
About a week after the echo and the increasing pounding of my heart my cardiologist finally took me off Amiodarone and gradually a lot of my symptoms slowly begin to subside.
I began to realize that I had spent so much time preparing and trusting God to get through OHS and now I had to learn to trust Him for my recovery as well and to me became the greatest challenge of all. No one, not even my doctors fully prepared me for this recovery journey of mine or maybe I didn't fully listen as I was so focus on the surgery itself. My first thought after surgery was "I'm alive, it's over!' No, Peggy, it's not over your journey has just begun! I had to trust God one day at time, I had to swallow my pride and let other people help me and take refuge in my God until the storm passed over. Also the words of the song, as many of you already know "tell your heart to beat again" especially the first 2 verses was such an inspiration to me.
"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 going to get back
To the you that used to be.

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 behind, feel the sun
cause your story's far from over
And your journey's just begun..

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 is a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again."

This amazing heart journey has changed my life forever and I will never be the same person again. Little things I no longer take for granted, like breathing. Yes, my shortness of breath is gone, in fact my breathing is better than it has been for years before my surgery, and I don't even need my Cpap machine anymore.....
Next part 4 adventures cardiac rehab!!

After surviving my first night in ICU (see part one) and my nightmare nurse. My doctor requested another nurse for me and I was a happy camper. The first morning they got me up in a chair which was not an easy task. It took 3 nurses to get me up due to all the IV's, EKG lines, chest tubes (3), etc, etc, and me to weak to stand alone. These nurses were really great and were very good to me. It really does take a special person to be an ICU nurse, not all nurses can work in ICU. They stuffed pillows all around me in the chair like I was a rag doll and brought me my breakfast. I had no appetite and only ate a couple of bites. My appetite didn't return for about 2 weeks. i had lots of company all day my family, friends and my pastor, at one time I had 9 people in my room. I was surprised they all got into ICU. My nurse came in ordered everyone out and said this patient just had major instensive heart surgery and needs her rest, I really was tired but was enjoying being the center of attention :)... The term "instensive heart surgery" I heard used several times and they explained to me that valve surgery is more invasive then bypass surgery because they have to cut into the heart and bypass hearts, the surgeon does not cut into the heart and are not considered open heart surgery even though the chest is cut open, the term "open heart" is when the heart is cut into and in some cases the heart can actually be taken out of the chest.
My second day I started having breathing problems and I had retained 28 pounds of fluid. At 7pm my night nurse came on duty and said I think you need some oxygen. After listening to my chest went running out of the room. A few minutes later returned and said "we are getting an X-ray and the on call doctor is on the way in to see you. (Yikes!) I had plural infusion which is pockets of fluid around the heart and lungs. For treatment given massive doses of IV Lasix, oxygen, and breathing treatments. This is very common side affect of OHS, they said, all though one of the things they don't tell you about. Also, my neck and face started swelling and my face turned beet red. I was having an allergic reaction to the adhesive tape covering the swans line in my neck. I had told the surgeon I was allergic to adhesive tape and he used paper tape on my incision and chest tubes. Apparently, the anesthesiologist who put the line in did not know. I was in ICU for 4 days and step down unit four 3 days. My pain was manageable with pain meds which enabled me to walk and use my spirometer, as I knew how important that was for healing.
Part 3 journey continues...

One year ago at 11am right on schedule I was wheeled into the OR to have my aortic valve replacement with a bovine valve. I remember feeling a strange sense of peace and calmness and knew that God was in control for no matter what the outcome I would come out a winner either way. They moved me onto that narrow table as they assured me I would not fall off.. I saw the heart and lung bypass machine that would soon be keeping me alive and tables with all kinds of wires and instruments, monitors and what seem like 15 people in that room. I heard someone say "hello Peggy" and looked up and saw Donna my surgeon's assistant whom I had met at my surgeons office. I felt comforted by her voice and warm smile...
I woke up in ICU that evening with the intubation tube still down my throat and which was no fun. Finally, what seem like eternity it was pulled and I was so thirsty. They let my family give me ice chips but I couldn't get enough and I kept begging for more.... I became aware of all kinds of wires and tubes I was hooked up to, monitors beeping, IV's, a swans line in the right side of my neck, pace maker wires going into my heart and 3 chest tubes... I was told the doc couldn't do a mini sternotomy as planned but had to do a full sternotomy and BROKE 2 RIBS in the process.
That first night was the worse, I had what I called "my nightmare nurse." About 4 am he decided to give me a bed bath, I begged him to wait until after my next pain med was due. He refused! He stripped me down from head to toe, completely exposed, which I know as a retired nurse that is a no, no. It is actually considered abuse (believe or not). Oh well, they say nurses make the worse patients. But I was to weak and in pain to even care. Now, I mean to tell you I had not had a bath like that since my mother bathed me. He washed each one of my toes and every inch of my body and then even washed my hair. Last, he changed the bed sheets rolling me from side to side with me screaming in agony. Finally, at 5am, one whole hour later and was the exact time my pain meds were due (as he had told me earlier). But he had to do his charting first with me begging for my meds and water for my dry mouth, 20 minutes later I got my pain meds and a pitcher of ice water. At 7am he bid me goodbye, promising that he would see me tonight, (ugh)... Shortly after the cardiac ICU doctor came in and asked how my night went, so I told him all about it, said he was sorry to hear that. Later, my surgeon came in and told me that he had heard what had happened and said he was addressing the issue and it would not happened again. He gave orders that I was to be given pain medicine before any activity and to be given a different nurse. He told me, " I promised you I would keep you as pain free as possible and I intend to do just that. Pain is a heart surgery patients worse enemy it will hinder your healing." (I love that man). All my other nurses were great, ICU nurses are the best anyway. I found out later that my doctor had 3 different pain medications ordered, one was for breaker-through pain and I could have had that but the nurse had failed to give it to me and he was written up for his actions. He never entered my room again and I was in ICU 4 days (another story). My pain was manageable from there on.
Part 2 The journey continues

It Has been one year yesterday that I received the phone call that would change my life. It was regarding my yearly echo report, I will never forget her words, "your aortic heart valve has significantly worsen from mild to severe." I couldn't believe it, not me, for over 12 years my reports had always showed mild....my cardiologlist had even said only a year ago that it was doubtful I would need surgery for 5 years or more.. But I had to face the facts., yes, my ankles were swollen, I was short of breath on assertion and what about the chest tightness when climbing just a few stairs. But it's my age, my weight, too much soda and table salt I would say..... I realized that my symptoms had been increasing at a very fast rate. I needed surgery and needed it now. I decided to return to my hometown in Missouri to have the surgery as I have family and friends there for support (I live in Mississippi). I found my surgeon, Dr David Theodoro in St. Louis he specialized in minimally invasive valve surgery as well as robotic surgery in fact he trained at the mayo clinic. Plus his patients have less then 1% mortally rate. I met with him on July 22 and knew that God had led me to him, I liked him and knew that I could place my life in his hands... I did not get a 2nd opinion. I think one thing I liked what he said, "I don't like surprises, when I operate I want to know exactly what I am going to find." And seriously, besides the usual heart cath, I had a TEE., a Doppler carotid artery, pulumary function tests to check my lungs, lab tests and so on.... I had no blockages, my lungs ok. That was the good news but the bad news was my heart valve in just the past few weeks had worsen even more from severe to now critical and the valve was completely closed and leaking, my heart had greatly enlarged trying to carry the load. Dr Theodoro said, "this is a death sentence for you and you need surgery now." I had my surgery on 8/18/15. I am so thankful for the Lord and his guidance to this man. In all reality, I would not have had time for a second opinion and thanks to my surgeon, he saved my life!

My scar 9 1/2months post-op AVR done on 8/18/2015

9 months ago on 8/18/19 at 11am in a St Louis hospital I was wheeled into the OR to have my aortic valve replaced with a bovine tissue valve. I remember seeing just the top of my surgeon's head as he rushed into an outer room to scrub for my surgery. Then I was moved on to the operating table, I looked around and saw the tables with all kinds of instruments and wires... I saw the heart/bypass machine and it is a monster of a machine and I thought in a few minutes that monster will be keeping me alive. I heard someone say "hello Peggy" I looked up and saw my surgeon's assistant, "Donna," who I had met when I first visited with my surgeon, I felt comforted by her voice and smile. But most of all I remember a strange peace that seem to surround me, I knew I was about to walk into that valley of the shallow of death but I was not alone for my Savior was with me, I was not afraid just peaceful. That was my last memory until I woke up several hours later in ICU, hooked up to all kinds of wires, tubes, machines beeping.....I'm alive, this is no dream it really did happened. I had been prepared for the surgery but was not prepared for the long recovery that was ahead of me, the many changes my body would go through both physically and emotionally. It was a real roller coaster ride with many ups and downs. There were days I wondered if I made a mistake even having the surgery and that I would never recover or have a normal life again. My feet and legs were so swollen they looked like sausages, I was so short of breath due to plural infusion in my chest. My surgeon said everyone heals different, in my case it was long because my heart had gone from severe to critical in just a few short weeks before my surgery and that my valve was no longer functioning and my heart was working so hard to keep up. He said this was a longer recovery for me and my heart would have to go through some remodeling, it would actually have to learn how to use my new valve... I came to realize that the same God who was with me through my surgery was the same God who was walking with me on this journey of recovery and needed to trust Him during this time, that was hard to do, but I made it or should say WE made it.. Today I am during great and feel better then I have felt for years; have so much energy, the Lord has been my strength and healer. I have gone through many changes that I am dealing with, most part good changes, I am just not the same person and adjusting to my new heart and the new life I've been given. To God be the Glory!

Heart walk 2016 for SSM Heart Institute walk St Louis

My new heart shirt for the St Louis heart walk

well its been 7 1/2 months since my aortic heart valve surgery and have returned to St Louis to see my heart doctor for a follow up and echo. I am a little nervous but surely it will be okay as I am feeling great, better then I have in years actually. My surgeon said it would take about 2 to 4 months for the surgery itself to heal and the heart itself takes longer about 9 months to a year for it to heal. The recovery was hard but God has been good and I feel the worse is behind me, I have a new heart now and so happy to be alive. see my heart story.

Me in the red shirt taken 3 months after AVR surgery