Chapter Twenty-Four

Mom's Health History (Part 2)

Again, as I continue my medical history from Part 1, it is a bit embarrassing because it looks like I'm a hypochondriac or something. I'm guessing that spanning a lifetime of 73 years helps to make sense of it all and that I didn't live in the doctor's office or hospital. I promise I still hate going to the doctor or having medical issues!

As I shared on the first page of this chapter, the events listed are in story form, not just simple facts. I thought this might be more interesting if the story behind some events were included. Anyway, here is the continued story of Mom's Health History.

Left Rotator Cuff Repair

Without warning, my nights became interrupted by horrible pain. I couldn't get comfortable or find relief no matter how I moved in bed. I remember sitting on the side of the bed, holding my arm, rocking back and forth, and praying for the pain to stop. After a couple weeks without any relief, I made an appointment to see Dr. Bloch. He referred me to an orthopedic surgeon who did a cortisone injection. It gave me some relief for a short period of time but an MRI revealed a tear in my rotator cuff. He scheduled surgery to repair it.

Recuperation wasn't fun. The pain was different, but I was still in pain. I went through several sessions of physical therapy which eventually helped. Finally, I had regained motion in my shoulder and the pain was gone! That was a rough one! In some ways, it was worse than the knee replacement!

Right Rotator Cuff Repair

As soon as the pain in my right shoulder began, I knew what it was. I didn't need an MRI to tell me I had a tear in my other shoulder. By this time we were living in Willard. I was referred to Dr. Guth who did x-rays and an MRI to pinpoint the tear. He scheduled surgery. It was easier this time since I knew what to expect but don't for a moment think the pain was any less. I just never thought a shoulder could cause such pain!

Recuperation wasn't fun, again! But, because our insurance coverage had changed, physical therapy was out of the question at $40/visit. So, I successfully worked with it on my own since I had already been down that road a few years prior. I explained the dilemma to Dr. Guth and he told me a secret (his word, not mine) – he had both shoulders repaired and did his own therapy at home without PT. As long as my range of motion was increasing, he was fine with my decision not to have therapy. A few weeks and all was well again.

Right Total Knee Replacement

This episode was really different. I woke up one morning and my knee was very swollen and sore to touch. I could hardly walk on it and couldn't bend it without a lot of pain. The swelling, though! I had never had a joint swell so horribly!

Dana came over and we decided to go to Urgent Care to get it checked out. I hobbled in and waited for the doctor. She sent me for an x-ray which showed a lot of fluid in my knee; she decided to drain it. My knee was already sore to the touch – sticking a needle in without first numbing it was a horrible decision! She withdrew quite a bit of fluid and sent a sample off to be sure there wasn't any infection. I hobbled back to the car and went home.

The next morning, the doctor called and told me to get to the hospital as soon as possible – the fluid in my knee revealed a very high white blood cell count and indicated I was septic and needed strong antibiotics. I called Dana and she took me to the hospital in Mansfield where we sat in the emergency room for hours while they did blood tests, x-rays, and began an IV for antibiotic treatment. I was admitted with a diagnosis of a septic knee. The problem was, however, that I also tested positive for Covid so I was put in isolation meaning no visitors. I had no symptoms whatsoever but had what I assumed was Covid about 6-8 weeks earlier. Apparently, some people test positive long after their symptoms disappear.

The orthopedic doctor finally reviewed the tests and x-ray but because he didn't want to be exposed to Covid (which I didn't have), he simply called me to tell me I was okay and to make an appointment at his office to discuss knee replacement. His demeanor on the phone turned me off so since I was already a patient of Dr. Guth, I called him for a consult. He agreed the knee needed to be replaced.

The surgery went without complication but it seemed worse than the first knee replacement. Home health care came to do physical therapy for six weeks but it was the hardest recuperation period I'd ever had. But, things finally resolved and I had my knee back!

Glaucoma

Treatment for psoriatic arthritis included using a biologic which came with potential impact on the eyes. I wasn't surprised when I went for an eye doctor appointment when Dr. Ballitch informed me I had glaucoma. He prescribed eye drops I would have to use each night for the rest of my life. With regular use, the pressure in my eyes remains stable. I no longer take Enbrel which may be part of the reason the numbers are back in the safe zone.

Osteoporosis

Dr. Dhillon at the Columbus Arthritis Center had been treating me for psoriatic arthritis. She ordered a DEXA Scan the latter part of 2021 and called the next day to let me know I had developed osteoporosis and would need to begin Reclast infusions. Once approved by insurance, I had my first infusion on May 1, 2022 with three more to be scheduled on an annual basis. A follow up DEXA Scan in May 2024 showed my bone density was normal and there was no reason to continue the infusions due to the bone density. However, it is recommended that I continue due to the condition of my spine and the surgical hardware. As of the time of writing, I'm waiting for an appointment for my third infusion of Reclast.

NSTEMI Heart Attack

This is complicated because I was stupid ... I pray that whoever reads this isn't as stupid as I was about my heart!

The morning of October 2, 2022, I woke up about 1:30am with my heart racing. I normally was able to cough hard and take an aspirin when these "spells" happened but this time nothing seemed to calm it back into rhythm. I was sweating profusely and literally had drenched my side of the bed. I felt like I needed to have a bowel movement and was able to make it to the bathroom, still trying to catch my breath and calm my heart. It wasn't working! After about 20 minutes on the toilet, I decided to try to get back to bed but was so weak and dizzy that I couldn't make it past the doorway to the bedroom. I remember standing there trying to catch my breath and keep from passing out. I got up the courage to take some big steps toward the bed and passed out, hitting the floor between Josie's crate and my side of the bed.

When I came to, I couldn't reach my phone. My husband was sound asleep. The noise from his oxygen concentrator drowned out my desperate cries for help so I just sat there – heart racing, dizzy, trying to catch my breath. By this time I had taken three aspirin which didn't help at all. I closed my eyes and tried to rest. I'm not sure how long I was there on the floor but it was after 5:00am when I was finally able to climb back on the bed. It was a horrible feeling because the sheets and pillow were soaked. But, my heart finally had calmed down enough for me to relax and go back to sleep.

I finally got up in the morning – it was Sunday and it was Pastor Appreciation Day. I was the coordinator and had arrangements to pick up food on the way to church that morning. But, there was no way I could go. I was too weak. I texted Heidi and told her I was having some problems and asked her to pick up the food that morning. I let Pastor Steve know I was in a difficult health situation and couldn't be there. Thankfully, the ladies at Church were able to handle everything without me.

I talked to my husband when I got up and let him know I had a horrible episode and probably a heart attack during the night and then spent the day on the couch. I was so weak! I was scared that I would have another episode.

So, why was I stupid? I didn't know what to do. I couldn't do anything even if I knew what to do. I had had numerous episodes like that over the past several years, but they didn't last as long and didn't leave me faint. But, I knew I was in trouble. But, it was Sunday and I figured I'd call the doctor on Monday.

Monday came and I couldn't get an appointment until Thursday, so I rested all day. My night was uneventful and I figured it was just a bad episode and all was well. On Tuesday, I was able to be a little more active, feeling more like myself. I assumed I was okay so I didn't say much more about it. However ...

Early Wednesday morning about 2:00am, I woke up with my heart racing once again – this time I was in pain and I knew I was in trouble. I woke my husband and told him to call the squad. But, then, things seemed to calm down and I told him to hold off. It wasn't but a few minutes later everything started again. Chest pain. Racing heart. Cold Sweat. Shortness of Breath. All indications of a heart attack. He called Dana and told her to come – she was here before the squad got here. Two deputy sheriffs came to help when the rescue squad arrived.

It was the most horrible feeling. No matter what anyone did, the EMT's, the ER Doctor or Nurses ... no one could get my heart rate down. It surged well above 200 beats per minute, sometimes close to 300. The ER in Willard couldn't help so they wanted to life flight me to Toledo but there was dense fog and we couldn't fly. So I was taken by ambulance to Toledo, about 90 minutes away. It was a horrible ride – they kept trying to treat me with different medicines but nothing slowed down my heart. I remember them putting pads on me to restart my heart if it quit but I don't remember if they actually used it.

By the time I got to the hospital in Toledo, Debbie and Dana were already there. The cardiac team went to work and, after a while, they were able to get my heart rate back in an acceptable range. I was immediately taken for an echo and directly to the cath lab where they put a stent in a blocked artery. The doctor told the girls that it was a miracle I was still alive.

Once stabilized with the stent and new meds, I was discharged with a referral to Matt Clingman and eventually to Dr. Vigesaa in Willard.

This has left me in fear of another heart attack, especially when my heart begins to race or I begin to have cold sweats and palpitations. It's certainly an experience I never want to go through again!

Stroke

Dr. Vigesaa was concerned about my symptoms after the heart attack and wanted to do a heart cath to determine exactly what was going on. It was scheduled on my birthday, Friday May 5, 2023. Dana took me to the hospital for the procedure which was delayed due to an emergency.

The procedure was fine – I was out and knew nothing. Since it was my second heart cath, I wasn't worried or fearful. I just figured we'd be done and go home and wait for my next appointment to learn the outcome.

Because the schedule for the cath lab was already behind, Dr. Vigesaa didn't see me after the procedure. Once I was awake and able to stand, I was discharged. I had a headache but just assumed it was from the anesthesia. On the way home, my headache worsened so I went to bed as soon as we got home. My eyes were acting funny but because I had a history of migraine headaches, I assumed that's all it was and it would resolve on its own. But, it didn't! I stayed in bed all day on Saturday and Sunday, taking Tylenol for the headache but it didn't help. On Monday morning, I decided to call Dr. Vigesaa's office to let them know I was not well ... I spoke to his nurse who consulted with him; she told me to get to the hospital as soon as possible.

Once at the hospital, they sent me for an MRI. Dr. Vigesaa came in with the news ... I'd had a stroke. He was so apologetic! He explained that during the heart cath, he tried to use the artery in my wrist but it was blocked and he couldn't access my heart so they went through the artery in my groin. Apparently, some calcium deposits were dislodged during the procedure and traveled to my brain. This began a 10-day stay in the hospital for treatment and therapy.

Three areas of my brain were affected: the left and right frontal and occipital lobes. The area in the occipital lobe had caused permanent damage to my eyesight called Right Homonymous Hemianopsia; I lost about 50% of my eyesight on the right side of each eye. I also have hallucinations which are called Charles Bonnet Syndrome. The hallucinations have decreased but they are still there, at times it's worse than at others. Occasionally they still startle me.

Hypertrophic Obstructive Cardiomyopathy

While I was in the hospital for the stroke, Dr. Vigesaa explained to us (Dana and me) what he found during the heart cath. He drew us one of his pictures and explained that the pressure in the lower left ventricle was much higher than in the upper chamber. This was because the walls of my heart were stiff and the enlarged septum was obstructing blood flow through the mitral valve. It had a long name: Hypertrophic Obstructive Cardiomyopathy (HOCM), a genetic heart muscle disease (see https://4hcm.org for more information). He wanted to get a closer look at things so he scheduled me for a transesophageal echocardiogram (TEE). When I was finally discharged from the hospital, Dana drove me directly to Tiffin Hospital where they did the procedure confirming Dr. Vigesaa's diagnosis.

At this point, Dr. Vigesaa began asking me to go to Cleveland Clinic where there are specialists in HOCM. I finally accepted the referral and was seen by Dr. Popovic. They did a complete workup of blood, x-rays, echocardiogram, and cardiac MRI which gave them a clear picture of my heart. I started taking Camzyos (Mavacamten) which is a new drug that targets cardiac myosin. I'm still taking 10mg of Camzyos daily as of the time of writing. However, it is not working as well as anticipated. Dr. Vigesaa would love for me to have a myectomy but I'm more than hesitant. The other option is an alcohol septal ablation which should help get my heart back on track and shrink the obstruction. The case is still open ...

Emphysema / Asthma

Due to the ongoing symptoms associated with HOCM, Dr. Vigesaa ordered a pulmonary function test which showed I have emphysema and asthma. I'm currently being treated with inhalers. However, it is suspected that the SOB is related to the HOCM and not as much to the lungs. I'm scheduled to have another echo and an ECG in late July with a referral to an electrophysiologist (EP) to discuss the ablation and the electrical issues with my heart. The saga continues ...