Hello. We are Amanda and William. We have faced many challenges over the past several years, mostly in regards to William’s health. Some of you reading this know about the last two years, specifically, but that’s only the tip of the iceberg.

Our story begins with what started as a severe panic attack in 2017 quickly turning into an overnight hospital stay that suggested problems with his heart and stomach. More testing revealed damage to the lining of his esophagus and stomach, and also defects with his heart. Eventually, William had surgery to remove part of his stomach. But the heart condition was just the beginning.

All of this was happening at a time while I was mentally battling severe postpartum depression, as we had just welcomed our 4th child only a few months before. It was hard to accept what would become our new “normal” and I lacked the coping skills to handle it all. As I remained depressed, William became it. We each saw our own doctors and therapists and were taking numerous medications while trying to manage work and family life.

In 2018 William was in an accident that totaled his car and was deemed medically related. That led to more testing, more appointments, more trial and error medications, and more mental health battles. That’s when we discovered William has a heart murmur and an irregular heart beat. This was the start of routine heart echoes and EKG’s. At one time they talked about putting in a pacemaker because medications weren't helping. Between 2019 and 2020 William had more than 100 appointments with several different doctors and specialists in 3 different cities. He also had a loop recorder placed in his chest above the heart, under the skin, to track arrhythmic activity. This showed the cardiologist that the medications still were not making a difference.

During the COVID years I’m sure I don’t have to explain to anyone how hard it was to make and keep appointments. It was just as hard to be seen in person or even keep the same doctor. I was still in a mental battle, unable to keep a therapist for more than one or two appointments, and we both were trying to find the right medications. It seemed like everytime William took one step in the right direction to treating a symptom another test would take him two steps back and reveal something new. He was dealing with constant body pains, irregular blood work, panic attacks and chest pains that only got relief from vomiting, continued depression and anxiety, trouble sleeping, and unanswered questions relating to his heart. At one time testing suggested he might have had cancer in his liver. Fortunately, it was only benign tissue. In 2021 William stepped down from management to try and focus on his health. I started having passive suicidal thoughts and began taking medications for bi polar depression. We both were managing our symptoms and became a team again. We were able to start seeing doctors and specialists again. It finally seemed like things were starting to go our way. But this, too, was only for a short while.

In 2022 William returned to management in a different city and I started a new job. William’s heart continued to have problems. He began having monthly appointments, this time with a specialist in Milwaukee. Just when we were starting to make some sort of progress with cardiology William began having numbness and balance issues, particularly in his right leg all the way to his toes. That was when he first started physical therapy.

I started treatment for hormone imbalance and was on a waitlist to see a psychiatrist. I got one appointment with them before they left the facility and I was on another waitlist, more than 2 months before I could be seen. The suicidal thoughts got worse and I was struggling to go to work and make it through a full work day. I had attempted to admit myself, but a positive COVID test sent me home with a few days off from work. A few weeks later I admitted myself again. This time spending almost a week inpatient and another week off of work. One week before I was to start seeing my new psychiatrist. I started a treatment plan, again, for bi-polar.

William’s cardiologist started to notice the wall around his heart was enlarged. He also was having more body pains, particularly in the spine. This too began a series of tests and unsuccessful treatments. In 2023 Willliam was officially diagnosed with Hypertrophic Cardiomyopathy. This means the muscle around his heart is continually growing which causes extra pressure on the valves making the oxygen in the bloodstream harder to circulate. There is no cure, and worst case scenarios can lead to heart transplants. This combined with the arrhythmia causes intense chest pain when the heart is beating out of sync. On average it takes 30 minutes to an hour before he’s able to control the pain and the heart gets back in rhythm. A lot of times it causes William to vomit because he gets aggressively dizzy and nauseous, and makes it hard to breathe. He stepped away from General Manager and took a job closer to home to better accommodate medical schedules and home life. After insurance cleared it, he started a newly FDA approved medication that would possibly help manage the symptoms. Because the medication is still new he was required to drive down to Milwaukee every 4 weeks for heart echos for the first year.

In April that year Wisconsin had an overnight snowfall that turned to icy rain. Again, William was in an accident that left his car totaled after spinning out on black ice on an overpass, at no fault of his own. As expected he went to urgent care the next day with whiplash and body pain. They took X-Rays. Although nothing was broken, they did notice some issues with his spine and he was referred for a follow up appointment. He still had been having pain in his body from the years prior, but it gradually had been getting worse. This is when we found out he had problems in several spots of the neck and lower back. There were bone spurs, degenerating discs, and bulging discs. He was referred, again, to many different specialists, in multiple locations. Throughout the year they tried many treatments with no results. He had physical therapy, saw a chiropractor, had multiple cortisone shots, trigger point injections, muscle shock therapy, TENS unit at home, and even acupuncture. This along with his other appointments resulted in more than 90 total medical related visits in 2023. All while still managing and working full time.

In May I had a shoulder injury that I tried to ignore. I had gone to urgent care for pain management, but with everything going on with William I kept putting off making an appointment to be seen. It started to interfere with my daily routines and caused pain while sleeping. In July I finally scheduled an appointment to see an orthopedic Dr. I started physical therapy, but with restrictions. Fortunately, I was able to work a light duty position and was only restricted for 5 weeks. Although my shoulder did feel better, it was not 100%. I met with the orthopedic Dr., again, this time to schedule an MRI.

Eventually William met with a surgeon at St. Luke’s in Milwaukee to discuss spinal fusions. They scheduled surgery, for the lower back first, in February of 2024. This required a 3-4 day hospital stay and 8-12 weeks completely off of work. We started preparing as best as we could. On the day of the surgery they were expecting to clean out about a 4 inch section of the spine. After they opened him up they realized it was worse than expected. The incision was almost 8 inches when they were done. William ended up spending 5 days in the hospital, due to bleeding problems, and 13 weeks off from work. He still was having bi-monthly heart echoes, and had to start the treatment process over again to prepare to have another fusion done, this time in the neck.

I had my MRI in February, after William’s surgery, and met with the Ortho Dr. in March. I had a partial tear in my upper labrum that was causing weakness and occasional numbness in my left arm. Knowing it was manageable, and with the possibility of William having another surgery, I scheduled surgery for myself in August.

William had the spinal fusion surgery in his neck in June, just a few weeks after being able to return to work. Again, this was a 2 day hospital stay. Fortunately, everything went according to plan, but he was off of work for another 12 weeks. He also had the loop recorder in his chest replaced about 6 weeks after the surgery. A pacemaker in the future is still a possibility.

August came and I had my labrum repaired. I also was out of work for 12 weeks. William and I overlapped our recoveries and for the first time in years we were able to take a step back and reassess our future. Get back on the same page. For him it meant stepping away from the management role and focussing on his body and health. For me it was returning to school to do something I’ve had an interest in for a while. Becoming a licensed cosmetologist. We knew it wasn’t going to be easy, and there would be a short time of sacrifice, but we both felt our decisions would make us stronger as a couple and as a family.

This brings us from October 2024 through March of 2025. In March William turned 38. Yes, 38. We have been navigating this chaos for 8 years. Our kids have never really known what it is like to have a healthy mom and dad. They have grown up with doctor visits and hospital stays. They have seen us at our worst and worst again. It’s forced our oldest 2 to grow up too fast. They have taken on adult responsibilities and the emotions that go with them since they were 5 and 8.

Obviously, it isn’t bad everyday. We take the few opportunities we have to make lasting memories. Good memories. We have a strong faith and are involved in our church and community. We’ve instilled those beliefs into our children. We are open and honest with them about our health and allow them to ask questions. They are prepared for uncertain circumstances. NIV Jeremiah 29:11 says,”For I know the plans I have for you’ declares the LORD,’plans to prosper you and not to harm you, plans to give you hope and a future.” We have been knocked down, but we rise again. Our faith keeps us afloat.

William and I combined had over 150 medical related appointments last year. I am in a good place mentally for the first time in a long while. I take medications to manage mood disorders and borderline personality disorder (BPD). I still have days when my depression or anxiety shut me down, but for the most part I can manage them now. William has had 20+ visits into this year already. He had a spinal stimulator implanted in his back in January. It has an internal battery that has to be electronically charged from outside of the back each day to work. It hasn’t given him a lot of relief, and isn’t sitting right in the lower back. He is preparing to have a cortisone shot near the device in hopes that it will self correct. He also has an appointment set to see the surgeon in April. The issues in his spine have already moved past the prior fusion and he will more than likely need another surgery in his neck in the very near future. It is causing numbness and muscle spasms in his arms and hands. Sometimes it even causes him to lose his grip while holding things.

Although we have remained steady thus far, we have been humbled enough to accept the fact that we need a little extra help and let our vulnerability show. It isn’t easy writing it all down for the world to see. Any help is appreciated. Donations made will help with medical and living expenses. Thank you for taking the time to read this and God bless.

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The Longie’s