Judy's Story

About Me (In My Own Words)

Judy’s Heart Journal

History

I am the fifth child born to Hazel Jane (Marchion) and Russell Lee Adam, Sr. I was born at the Stubenhofer Maternity Home, Strong City, Kansas. The physician present was Dr. Titus. My birth weight is not on the birth certificate but I presume that I weighed in around 7 pounds as Mother said all her babies weighed about the same – around 7 pounds. All my early records were lost in the Floods of 1951.

According to my Mother, she took me back to Dr. Titus for my 6-week check-up and he asked her what she was doing to this baby as I weighed about a pound less than my birth weight and he could hear a heart murmur which he did not hear when I was born. Mother said she was doing what she was told and was feeding me every 4 hours. This was the new thing on how to care for babies and Mother says she does not know why she adhered to that policy. She would feed me and put me down to sleep but before the 4 hours was up I would be awake and crying. She would let me cry until it was time for me to have a bottle. I would eat enough to be satisfied, but because I was tired from crying I would go to sleep before I finished the bottle and the scenario would start all over again.

So, the routine changed and I must have been an happy baby after that as I did start to grow but was always small for my age. (My sister Frances is a year younger than I but when we were removed from the school house during the floods of 1951, the Army personnel that took us out thought she and I were twins as we were about the same size.) Dr. Titus told my mother that I would probably out-grow the heart murmur by the time I started to school, but that was not the case. I still had the murmur when I started to school at age 6 (no kindergarten in rural Kansas). So they continued to watch me and I remember that when I had strep throat and I was sent home from school, that my mother took me straight to the doctor where I got one big dose of penicillin! Mom was also told that I should not participate in active physical activity. I recall one summer when all the Miller grandkids across the street were visiting and we all decided to have a ball game in the field. Chose up the sides and the game was on. Before long Mother called me home and told me that I could not play ball with the other kids. I was devastated! The Miller kids wanted to know if I was in trouble and why was I not allowed to play ball with the rest of the kids……..At the time I really did not know that I had a heart murmur. We all took swimming lessons one year. Then the next year the doctor would not sign off for me to take swimming lessons.

By the time I graduated from 8th grade, I was wearing a size 10 in girls while all my classmates were wearing junior sizes and had boobs too. They were all at least a head taller than me! Would I ever grow?

My freshman year of high school I took the required health class which included P.E. on Tuesdays and Thursday. Coach Goff always told us we would pass out before we would damage our hearts and having us run the bleachers in the gym was one of his favorite things to make us do. Every day that I had to go to gym, I would be nauseated by the time I would get off the school bus at home. By mid-term, Mother took me to the doctor and the heart murmur was still there and I returned to school with a physician's order that I was no longer to participate in P.E. class. So I had an extra study hall and I knew that I had a heart murmur. During my Sophomore year I took typing as did everyone else in my class. The Business teacher was Ms. James. Her dad knew my dad and apparently my dad told her dad that I was gong to the hospital over Christmas vacation. And of course living in a small community, Ms. James heard that news and then one day in class she asked if I was going to the hospital over Christmas vacation. I think I just looked at her like “how do you know and why are you asking me that in front of the whole class?” look. Don’t think I told her. I was hospitalized for diagnostic test regarding my heart. Think that consisted on an x-ray and an EKG. I don’t recall them doing anything else. I was put on rheumatic fever antibiotic therapy which consisted of a monthly long acting penicillin injection. By my junior year, I finally started to grow and by the time I graduated high school I had reached my adult height of 4’11”.

I attended ESTC in Emporia, Kansas. Again I was exempted from P.E. I went off the penicillin therapy. I completed 3 semesters of college then got married and within 9 months I was expecting my first baby. I did not anticipate any problems as all women had babies, but the local doctor sent me to see a cardiologist and once again I was put on the penicillin therapy. The plan was to see the cardiologist again after I delivered the baby. Then at about 26 weeks into the pregnancy I was hospitalize with complications resulting in a stillborn son.

About 2 months afterwards, I was admitted to University of Knoxville Hospital for cardiac cath. That was in 1970 by Dr. James Acker. He basically told me that he felt that I could have 2 children but that they should be at least 2 years apart and that I should not have children after age 25. That we should plan a 2nd cath after I had my family. In 1977 I had a second cath which was only slightly changed from the first and I had 2 living children. So the long term plan was to see my cardiologist every year and continue the penicillin therapy and of course – to watch my weight!

A lot of changes have occurred in cardiology since I was 6 weeks old and there was basically no treatment for heart problems except to limit physical activity. I was in high school when a neighbor actually got a new heart valve and that was cutting edge technology then. I had cardiac caths because there was no such thing as an echocardiogram, just the standard EKG and chest x-ray.

Reality Check

Now, here I am approaching age 62 and the annual echocardiogram does not look so good this year. The mean gradient is now at 58; the peak at 102.80. Replacement is indicated when the mean gradient is greater than 50. I am unemployed since I was permanently laid off but at least I currently have insurance under Cobra.

My echocardiogram was done on February 8th, 2011 and on the 11th I got a hard copy of the echo report and contacted my family members to let them know that it looked like this would be the year that I would undergo aortic valve replacement. First, I need to get a cardiac cath, then the surgeon will be consulted.

Since my children both live out of state, I have decided to do both events back-to-back. I have scheduled the cath for April 6th and the surgery on April 7th. Interesting – my first cath back in 1970 was also done in April.


The Plan

Stephanie will be my primary caregiver and she will have power of attorney for my health care. She will arrive on April 5th and we will go over several personal items regarding my estate. She will need to go home on April 27th at which time my sister, Lola Jane will come stay with me. Tony will plan to come in the evening of April 6th as well Lola Jane and Isabelle. I don’t expect to see any other family as I was just in Kansas for my brothers 70th birthday party and saw Frances and Jean as well as George. Frances and Jean are both working and we all want to be able to attend the family reunion in Herington, Kansas in June. George’s health is failing and he really is not able to travel now. Joann tells me that she will be out of town at the time but I did see her last summer.

So now for all the other things I need to do….
I have an appointment with the attorney to complete my will, my trust, the power of attorney, and power of attorney for health care. I tried to shortcut the process by typing up my own documents, but found out that the bank would not notarize them and that no attorney would sign documents that he has not reviewed and counseled the client on. I could not find the warranty deed for the house, so have ordered 2 copies of that from the Registrar of Deeds for St Louis County.

I know Dr. Kopitsky will do the cath. I scheduled it for 9 AM. I also spoke with Dr. Kouchoukos office. He will be the surgeon. I actually had to move the date as he is on vacation the next week! Good think I checked. I don’t feel that I need a 2nd opinion as I have had 4 different cardiologist in my life and all have told me that eventually I would have to have the valve replaced so it is not something that just came up. It’s been a life style for me. I have been a member of Mended Hearts St. Louis Chapter 120 since about 1997 and have meet several people who have had Dr. Kouchoukos as their surgeon. He is well trained and has a very good success rate. I attended a lecture one year where his presentation was on the surgical procedure to replace the aortic valve. His nurse Nancy has been with him for years and is very helpful and I know that he has done aortic valve replacement with the 3.5” incision when he can so I am happy about that. The valve replacement procedure TAVR which uses the femoral artery is not yet approved in the US.

It is currently in a research study at Washington University and is only being used in people who would not be able to tolerate the more traditional valve replacement surgeries and I do not fall into that category.

THE SURGERY

So, as planned, I had my cardiac catheterization on April 6, 2011 and the surgery on April 7, 2011. The Cath showed an EF of 70%, dilation of the ascending aorta, CAD and severe aortic stenosis. I now have a 19 mm St Jude’s mechanical valve and will be on warfarin for as long as I have it. In addition to the valve replacement, I also had CABG x 1, replacement of aortic arch with a Dacron graft, and enlargement of the left ventricular outflow tract. I was on bypass for 139 minutes then again for an additional period of 18 minutes. I was in the coronary care unit until I was woken up on April 10, 2017 by my sister telling me that my surgery was over and I could wake up now. They needed to talk to me. That woke me up! My siblings needed to return to Kansas as my brother, George had passed on April 9th. My feet were as big as I had every seen them! The nurse asked if I wanted a mirror to see myself and I’m thinking “why, they were only suppose to do OHS”. One look and I’m like “what did they do to my lips? I’ve never seen them this color?”. Then my sister asked if I was hungry and did I want some “Frog-eye pudding.” You should have seen the nurses! They soon discovered that it was a pasta dish. But was so funny but laughing hurt. My siblings left and the CCU nurses worked on pulling off some of the fluid until a room on the cardiac floor was available and I was moved to the floor. I did fine and was discharged from the hospital on April 13, 2011.



THE COMPLICATIONS

Things were going fine until about 3 weeks post going home. The home health nurse visited and I told her that I felt I was going backwards in that the amount of air I was able to move using the spirometer was decreasing rather than increasing. She could not hear any breath sounds on the left side so I was sent for a Chest x-ray. I had fluid buildup on the left lung. So on May 13, 2011 I had a left thoracentesis done at Missouri Baptist by Lisa Oakley, MD to remove about 1,000 cc’s of fluid. Then I was back on my way with my recovery.

I soon started Cardiac Rehabilitation. I completed the 30 visits without any further problems. I continued to go to the rehab center to exercise until I felt that I could not make it there after work so discontinued it. I continued to walk every day in my neighborhood.

It is now 6 (six) years post having the Cardiac Catheterization and Aortic Valve replaced with a 19 mm St. Jude valve. In addition, I also had CABG x 1, enlargement of the outflow tract and replacement of the ascending aorta with a dacron graft.

Each echo that I have had since the surgery has shown some aortic regurgitation. I never thought to much of it and assumed that it was a natural part of having a mechanical valve. However, my echo results in April 2017 have me a little worried. Interpretation Summary notes the following: (see report for complete report)

 The AV prosthetic valve is abnormal.
 The prosthetic valve has the following abnormalities: Regurgitation.
 Moderate concentric left ventricular thickening observed.
 LV ejection fraction appears increased (hyperdynamic) at >70% by 2D trace.
 Grade III (Severe) left ventricular diastolic dysfunction.

Aortic valve – the jet appears eccentrically directed. Aortic regurgitation appears to have multiple jets. There is a mechanical valve present. The prosthetic valve is abnormal. The prosthetic valve has the following abnormalities: regurgitation. The prosthetic regurgitation appears perivalvular.

Left Ventricular – LV ejection fraction appears increased (hyperdynamic) at >70% by 2D trace. LV size appears normal. Moderate concentric thickening observed. Wall motion appears hyperdynamic. Grade III (severe) left ventricular diastolic dysfunction. Normal end diastolic pressure.

My questions: why or what did I do that I now have a perivalvular leak? What symptoms might it cause? Is there anything that I can do to reverse the situation? What can be done about it? Will I need another OHS? When should I have something done about it? Do I need to have more frequent follow-up visits? Echo’s? MRI? Cat Scan?

So, I have requested my cardiac catheterization & surgical reports from 2011. I have requested a digital copy of the April 2017 echo to be sent to another cardiologist. This time I will see an ACHD (Adult Congenital Heart Disease specialist at OU (if she will see me). Otherwise I will go plan to go to St. Louis and see Dr. Kopitsky. The OU specialist has left OU to go to the Mayo clinic in Jacksonville, Florida. I spoke with Dr. Kopitsky’s office on the phone and basically they told me that nothing would be done unless I have symptoms that would warrant intervention.

I’ve joined a face book group for BAV and have learned a lot, but no one has responded to my post about peri-valvular leaks. It does not seem to be a very common thing although it does happen. I talked to Nancy at Dr. Kouchoukos office and she says that unless I’m symptomatic, they would not do anything. Problem is that I never consider myself symptomatic………even prior to the AVR surgery, I never had symptoms other than a little shortness of breath so question is: Will I have symptoms with this???

Fast forward to April 15, 2019. Another Echocardiogram done today which basically shows the same results: LV ejection fraction increased at 65-70% by 2D trace (which when I checked the 2011 echo which also had the EF at 65-70%), that the Aortic prosthetic valve has the abnormality of regurgitation, and mild mitral regurgitation. The LV does have mild concentric hypertrophy (same as in 2011). Doppler assessment demonstrates impaired relaxation with marked elevation in filling pressure. The mechanical valve regurgitation appears to be peri-valvular and mild. Mitral valve has non-specific thickening and mild posterior mitral annular calcification. Tricuspid valve has mild regurgitation (same as in 2011) and the pulmonic valve has a trace regurgitation (no mention of any regurgitation in 2011). Report has a lot of measurements on it but there are no normal value’s so not sure what is not normal. So, it appears to me that this echo is about the same as the one in 2017. Next one will probably be in 2021 as insurance now only pays every 2 years I’m told.

In 2020 Covid-19 arrived in the US. My Cardiology appointment had was still on, so was seen on May 27, 2020. This year I really focused on my Blood Pressure as for several years now, when I’d see a doctor it would be high but no body seemed to take any action to get treat it. I finally purchased a home BP cuff so I could monitor it. I was put on Amlodipine Besylate and took my BP every day. After 2 weeks the dosage was increased. This resulted in lower leg/foot edema plus a significant increase in my INR (from 2.8 to 4.2). Amlodipine was discontinued and I will try Lisinopril and see how that does.

In 2022 I had a 4 day hospital stay due to a bleed - bleed into my right leg and needed 2 units of blood. Also had a low sodium. so the HCTZ that I was taking was stopped.

Well, it's now summer 2023. Covid is under control and the world seems to continue along. My Echo results From March show that the aortic valve peak gradient is not 53 and the mean is now 29. My pain management Dr is referring me to a surgeon but not sure when. BP still runs high some days but can also dropped pretty low on other days. So just taking life one day at a time!

More Info About Me & My Heart

More About Me

• 
  I am from:
  Oklahoma City, OK
• 
  My surgery date is:
  April 7, 2011
  
• 
  I was diagnosed with:
  Aortic Regurgitation
  Aortic Stenosis
  Bicuspid Aortic Valve
  
• 
  My surgery was:
  Aortic Valve Replacement
  Aortic Aneurysm Replacement
  Coronary Artery Bypass Graft
  
• 
  My surgeon is:
  Dr. Nicholas Kouchoukos
  
• 
  My hospital is:
  Missouri Baptist Medical Center