Showing posts with label congenital heart defect. Show all posts
Showing posts with label congenital heart defect. Show all posts

Thursday, June 30, 2022

One Year Ago: My Trip to Mayo

Today I thought it was quite fitting that on my one year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month. 

Thankfully, my cardiologist from Mayo comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there!

I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after Faith for the five days (and four nights) that I was gone.

I am still incredibly grateful for all those who stepped up to look after her. I'm also thankful my sister was able to take me there. Faith still talks about it like it just recently happened. She often mentions that her aunt and little cousin stayed with her a couple of nights and how patient she had to be. 

She also talks about how our friend Mandi looked after her, and she even had her kids and husband come over to visit. I don't know what I would have done without her as she came every morning to relieve the overnight staff and get Faith out of bed. She even sent me a picture of Faith every day!

Faith had loads of fun while I was gone!

Faith told me when Grandma and Grandpa were here, Grandpa did his crossword puzzle and then took a nap. (It's just funny which details she remembers!) There was also the respite care staff who stayed over a couple of nights and also a few other friends who helped out. She will truly never forget it. Most of all though, I think she is proud of herself for getting through that time and being so mature. It helped that I got to talk to Faith every day and even did a couple of video chats with her, which she loved.

Even though it was for a medical procedure, my sister and I made the best of it and had plenty of laughs along the way. Especially when on the way home our sister was heading back from a work trip and we managed to catch up to her on the Interstate, which you can see in the video below!

The double rainbow we spotted just as we crossed into Minnesota

After driving in the dark (and rain) through the Cities, we were very thankful to reach our comfy hotel room.

Our hotel was conveniently located just across the street from where I would be having my procedure. This is also where I had my last open heart surgery in 1999 and my original pacemaker implantation.

Taking the shuttle from our hotel to the downtown campus for a day of medical tests.

Hanging around waiting for the last appointment of the day.

My sister even was able to get some work done!

After a long day, we were able to eat at our favorite restaurant in Rochester!

Me after my procedure...I was just a tad groggy!

Grateful that things went so well!

After a night in the hospital and an extra day recovering, we were ready to hit the road again!











Who is that ahead of us on the Interstate? Let's find out!     


Tired but happy sisters reunited in Bismarck!

Grandma is there too, and Faith is super excited to have us all there!

Hopefully it will be awhile before I need to go to Mayo again for a medical procedure. If I do though, I know God will provide and Faith will be well looked after!

Thursday, February 7, 2019

CHD Awareness Week: My Heart Story (So Far)


Grandma Dorothy holding me at 5 months of age
In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup.

Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said.

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley called the clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away.

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn’t sure what he was seeing. “There’s nothing we can do at this time. We’ll just have to wait and see. She most likely will need to have heart surgery someday.”

There was no Internet or access to medical information for doing research. My parents had no other alternative than to believe I would survive long enough to have surgery.

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June.

Dr. Katrapu had ordered another round of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole in her heart,” he told them. “This is common for babies. A simple surgery should take care of it.” He went on to explain that a diagnostic test called a heart catheterization would show any anomalies in my heart. “Unfortunately, we can’t do the test here in Bismarck. The closest place is the University of Minnesota Hospital in St. Paul.”

At six months old, I weighed only twelve pounds. My lips and fingernails were getting more cyanotic by the day. I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough.

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis–Saint Paul. They set out from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a place completely foreign to them. Dad drove down the highway and then on the Interstate with Mom sitting on the passenger side and me lying on a blanket between them, which was completely legal at the time. Not having me restrained in a car seat made it much easier to feed and change me during the twelve-hour drive. The biggest city they had ever visited was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital.

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked looks on my parents’ faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They explained they needed to locate the hole so they could operate the next day. I had been gone for over three hours when Mom and Dad, stuck in the waiting room, started to get anxious. Finally, five hours after my parents had last seen me, Dr. Bessinger gave them the grim news.

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I would eventually suffocate to death. He warned my parents it would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties.

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes.

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They were forced to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything ever changed someone would get in touch with them. Four weeks later, the one phone call they had been waiting for finally came.

Dad had just walked inside from milking cows. “They called and said we could come and get Cari,” Mom told him.

They dropped my brother off at Grandma and Grandpa’s, just down the road, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked like a normal, healthy baby. My pinkish skin plus the weight I had gained nearly shocked Mom. “It’s hard to believe this is the same baby,” she quietly remarked to Dad.

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours I was discharged and Mom and Dad were back on the road bringing me home.

Celebrating my 45th Birthday with my daughter!
Four years after my first surgery, I had another one, and then at 10 my Fontan. In between surgeries I had been officially diagnosed with Double Outlet Right Ventricle (DORV). Unfortunately, at that time, the doctors believed that my Fontan cured my heart defect. There just wasn't enough research to tell them otherwise. When I was 19 years old, I was hospitalized with congestive heart failure. I never fully recovered, which is why in 1999 at the age of 25, I needed to undergo my fourth open heart surgery. Three months later, I had a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 
 
About 5 months after I had my daughter, I needed to go back to the Mayo Clinic to get my pacemaker battery replaced. Because my heart  relied so heavily on my pacemaker, the battery didn't last as long as they normally do. This meant I had to get my battery changed about every 4 to 5 years. Eventually, as my original lead began to fail, I needed to get the battery replaced every 2 to 3 years. Finally, in 2021, my cardiology team thought it might be time to put a new lead in. They hoped by doing so, it would increase my battery life. 
 
I just had that procedure last June. I was so blessed my sister, Tesa could drive me to Rochester and look after me. I had the support of many family and friends, some of whom took turns looking after Faith while I was away. Even though I had some restrictions following the procedure, it was nothing like getting the original pacemaker! 
 
Despite how well I'm doing, it's hard to know what the future will bring. There are not that many people with double outlet right ventricle in their late 40's! I only know that I will continue to look after myself the best I can and keep up with all my cardiology appointments. The rest is in God's hands!  
 
By the way, to celebrate Congenital Heart Defect Awareness Week, I am raising funds for the Adult Congenital Heart Association. I am doing so to raise awareness for the fact that many adults born with congenital heart defects think their surgeries have "cured" them. This is not true, however, as most people born with congenital heart defects will need medical care for the rest of their life. Other adults with congenital heart defects fall through the cracks between pediatric and adult care. The ACHA helps adults find specialized cardiologists that treat adults born with congenital heart defects. In so doing, this organization improves the quality of life and helps extend the lives of adults with CHD. Please feel free to make a donation!

 

Saturday, June 24, 2017

Faith's Summer So Far

Despite the fact summer officially began only a few days ago, for us, it feels like it actually began in May. Since we've begun to have such wonderful weather, Faith has been wanting to get out and about, which has been fun for the whole family. In early May, the three of us ventured to the river where the boats, dandelions, and motorcylists were all out in full force.

Enjoying the great outdoors!
The banks of the Missouri River - one of Faith's favorite places!
Besides going to the river, the library, and elsewhere, Faith has also enjoyed spending some quality family time at her Grandma and Grandpa's. On Mother's Day we enjoyed our first official barbecue of the year. Faith enjoyed getting to know my sister's dog, Snickerdoodle, aka Snickers, a little better. He is such a good dog and quiet too, which is why Faith likes him!

Happy Mother's Day to me!
My sister Dawn and I along with our mom!
Faith's new favorite dog is Snickers!
Toward the end of the month we made our way to our first ever visit at Gillette Children's Hospital in St. Paul, MN. Here we saw a doctor who told us (much to our relief) that since Faith is not in pain, there is no need to do surgery on her left hip at this time.

We were scheduled to go back at the end of this month for one of their specialty clinics where a team of pediatric specialists will be able to evaluate the amount of spasticity she is having and find some ways to decrease her tone. Since the referral process has been slower than we anticipated, however, we needed to reschedule for mid-August.
Faith cruising around in Minnesota!

Scenic view in Rogers, MN where we stayed
Sometimes I feel like my whole life revolves around making phone calls and getting paperwork in order, not just for her but me as well! Earlier this month, I saw my cardiologist who comes to Bismarck every three months from the Mayo Clinic. I am still retaining a bit of fluid so he tried to put me on a second diuretic, along with the one I'm already on.

During the 8 days I took it however, I came down with three migraine headaches and didn't feel well in general. I'm so glad I have a doctor who quickly answers my e-mails because after sending him a message regarding the new medication, he told me to stop taking it for a week to see how I feel. I'm hoping the medication was the culprit and I can discontinue taking it -- the fewer meds the better!

Of course June also means celebrating Father's Day and so we had an early celebration at Grandma and Grandpa's to honor my dad, my husband, and my sister who pulls double duty as a single mom. Two of my nephews, who are also dads, were there as well, and we got to meet to the newest addition to our family -- little GracieLynn. On the actual Father's Day, the three of us had a perfect day at home relaxing, watching movies, playing video games, and calling our dads.

Faith with her dad and grandpa
My dad and I
Faith with grandma and her two baby cousins - Marla and GracieLynn
Faith and I have also been getting back to another of her favorite summer activities -- spending time on the patio. No matter how windy or cool the weather is, she is still determined to sit down there. She has fun laughing at me when the wind causes something to blow away and I have to go chasing after it. We also have fun watching the birds, and every once in a while, we spot a bunny and a gopher or two.
One of the cooler days on the patio - and that's not a bug on her face, it's chocolate! She enjoys her snacks!
Unfortunately, it has been hot and windy and in early June, we nearly hit 100 degrees, which it usually doesn't do until July or August. The entire state is having drought conditions and in much need of rain. There was one day however where we did get a nice shower of rain and with it, a double rainbow! Faith had been asking when we were going to see a rainbow in the sky so she was very excited. I took this picture, but there were other photos on Facebook that showed it was a full double rainbow, which always gives me a renewed sense of hope that God will fulfill His every promise. 
Double rainbow - double blessing!
Our family has gone through some challenges, some related to my health, some related to raising a 13-year old girl and all of the hormone-related things that go along with it, and others regarding some personal things that have affected us. Through it all, I continue to cling to His faithfulness and this promise in God's Word: Understand, therefore, that the Lord your God is indeed God. He is the faithful God who keeps his covenant for a thousand generations and lavishes His unfailing love on those who love Him and obey His commands. Deuteronomy 7:9

Saturday, April 8, 2017

An Unexpected Hospital Stay at the Mayo Clinic

At the end of March, I found myself heading east on I-94 with my parents, leaving my husband and daughter behind. An hour into our trip, my husband called because Faith wanted to talk to me. In near tears, she asked if I was going to be home soon. Oh my breaking heart. The last time I had been away from her for more than a day was probably about 9 years ago.

The reason for my departure had started back in January when I began fasting along with our church. In my journal on that first day, I had written that I wanted God to reveal any internal problems or heart issues I needed to deal with. I was speaking of spiritual issues, but in His goodness, He also revealed some physical problems that needed taken care of.

During the fast I became extremely fatigued and didn't feel well at all. I began having chills and my husband encouraged me to start eating solid foods. I began eating soup, oatmeal, and other easy-to-digest foods, but none of it made me feel any better. Eventually, I lost my appetite altogether. One of the strangest symptoms, however, was that instead of losing weight, I looked like I was gaining. My abdomen had become enlarged and by the end of January, it felt hard as a rock.

I saw my doctor at the beginning of February. She did labs and x-rays and had also ordered at CT scan, which showed the fluid buildup was being caused by my liver. As soon as I heard the news, I wondered if it could possibly be related to my heart. I knew that patients born with a single-functioning ventricle who had the Fontan surgery were at risk for liver problems.

Speaking at Java JOY
I had to wait until March 1 to see a cardiologist from the Mayo Clinic who specializes in adults with congenital heart defects and who comes to Bismarck. He was convinced my liver issue was indeed cardiac related and wanted me to go to Rochester for more tests. I had to wait until the end of the month before my appointment was approved by insurance. 

In between that time I said a lot of prayers, had a lot of people praying, and by the grace of God, was even able to fulfill an obligation to speak at Java JOY. I spoke on Psalm 103 where it talks about the benefits of being a believer, including the healing of our diseases. Despite my symptoms and how I felt, I was still determined to stand on the truth of God's word.

Finally, on March 29, my parents and I set out for Rochester. It was 3:30 in the afternoon by the time we left Bismarck and we ended up staying in St. Cloud, MN. The next morning we made it to Rochester and ended up eating lunch at the Canadian Honker Restaurant, where we had eaten together 18 years prior. While Dad rested at the hotel right across the street, Mom and I made our way over to St. Mary's Hospital.

Mom and I shortly after arriving in Rochester
To make a really long blog post a bit shorter, my doctor decided to admit me to the hospital so that he could do some further tests and get the fluid removed. I went back to the waiting room where my Mom was waiting and began crying when I told her the news. 

I hadn't expected to get admitted, and all I could think about was my husband and daughter and how they were going to handle me being away for longer than anticipated. Because of my emotional state, I couldn't even talk to Rob over the phone, so Mom told him the news. He was actually quite relieved because all he wanted for me was to get well.

After getting settled into my room, I found out they were also going to be replacing my pacemaker. So the next morning, after that procedure, I had a CT scan, and then in the afternoon 3 doctors came into my room to discuss a paracentesis. 

Mom and Dad had been in the room and after they were finished discussing the procedure, Mom asked, "and where will you be doing this procedure?" When we realized they were going to do it right there in my room, they bolted out of there pretty quickly! 

I was a little freaked out about the big needle going right into my abdomen, but was even more freaked out when they brought 4 one liter bottles into my room. I honestly didn’t think they were going to fill all those bottles. But they ended up needing 7 of them! They removed a total of 6.3 liters and I ended up weighing 15 pounds less than when I was admitted.

The next morning (which was Saturday) I had my heart catheterization. All of my pressures looked great, which was good news, but they still weren't 100% sure where the fluid buildup had come from. I was discharged that afternoon (April 2) and since my parents felt more comfortable keeping me close by after having 3 major procedures, we stayed over in Rochester and made it home late the next afternoon.

In going through all of this, I learned that liver problems are pretty much a guarantee for anyone having gone through the Fontan. I feel blessed that I have gone for so long (33 years after my first Fontan and 18 years after the revision), and not have any issues at all with my liver. I have learned this isn't the case for many Fontan recipients, and that some of them have liver problems right away, even as children.

I also know that no matter what the medical world says, I can still look to God my Healer. He can heal my liver and He can heal my heart - I have believed that for many years and will continue to believe it. That being said, there are times I need help from the medical community and am beyond grateful for my cardiologist, Dr. Cetta and the many other doctors and nurses that cared for me at the Mayo Clinic. I must say that for the most part while going through this medical ordeal, I had a lot of peace. Everything went so smoothly, and I knew God was working things out on my behalf.

Dad, Me, and Mom, before leaving Rochester
So thankful for these two!
I am also very thankful for the many people who were praying for me during this time, and also to my parents. They had just gotten back from driving to Lincoln, NE and two days later they were on the road again taking me to Rochester. 

In my book, Having Faith, I acknowledged them with these words, "My parents did everything they could during my childhood to ensure I not only survived but thrived. Over the years, they have put on thousands of miles, said hundreds of prayers, and hugged away many tears." These words continue to be so full of truth, and I seriously don't know what I would do without them. 

Rob and Faith did great while I was away. Faith cried a lot the first night I was gone, but after that she and Rob felt total peace. Whenever I called and asked how she was doing she would say, "We're doing great!" It ended up being a great bonding experience for both of them. God certainly worked ALL things together for good! (Romans 8:28)