Cameron's Journal

Feeling rather discouraged. Last July I developed postpericardiotomy syndrome and had to take colchicine twice daily. After three months in October I cut back to once a day. In November I was back in the ER twice in terrible pain with a super high CRP so it was back to twice daily. In February we started another taper back to once a day. Last night the pain started back with every breath. It is like having a knife into my collar bone. This is such an odd syndrome and I wish I knew why it keeps coming back. My surgeons office didn’t have any advice and my cardiologist has been supportive but has no idea why. Did anyone who experienced this multiple times ever find there was something unique that made it reoccurring?

Today was a milestone in my heart journey. 5 months since my OHS mitral repair. I completed 30 minutes on the elliptical at rehab. The support from this community has enabled me to keep my faith throughout this adventure. ❤️‍🩹

Patience with my progress. Today at rehab felt like I was making progress on returning to exercise. I was able to do 15 minutes on the bike, 15 on the elliptical and 15 on the treadmill (alternating slow jogging and walks). The nurse even made the observation "boy you worked up a sweat". It is such a long journey and I am glad I am continuing to recover. This week I also did my first accredited visiting for heart patients with mended hearts. It was uplifting to see the patients and to share that I was also there and am now up and sharing my story. I have also signed up for the American heart association heart walk in Oct. Without the support from these organizations all the advances that Adam shared this week would not be possible. I am hoping that I do a small part of helping someone else in the future. https://www2.heart.org/site/TR/HeartWalk/FDA-FoundersAffiliate?px=21724828&pg=personal&fr_id=6080

Today I started colchicine and high dose advil for Postpericardiotomy syndrome. My pain has gotten steadily worse all week. I am trying hard to not be discouraged but everything seems worse when it hurts to breathe.

Well I hit a pothole in my road to recovery. Last week I started having pain every time I took a breath. The pain was radiating across my collar bone, up my neck and in my ear. It started out only on my right side. Unfortunately by Sunday it was getting worse and was now on both my right and left sides. When I tried to lay back it felt like something was pressing down on my chest. I decided it was better safe than sorry because I had experienced a DVT after an earlier surgery in 2016. The ER did the CT scan with contrast and luckily it was not a blood clot. It was pleural effusion in both lungs, fever and atelectasis. I also had low potassium so they gave me 30 mg in the ER. They gave me a zpac of antibiotics and had me follow-up with my doctor. The antibiotics have made my fever go away and the pain is much less. I was so disappointed because it seemed like such a set back and left me feeling so exhausted. My doctor checked my labs and they all seemed to be back to normal. They told me to expect that this would resolve naturally by the weekend. I thought that being 7 weeks past surgery and breathing on my incentive spirometer back at my pre surgery levels I was past the possibility of this happening. Just goes to prove that there is still alot going on inside my body as a result of the surgery.

Thankfully my disability claim extension was approved. This is such a blessing that I can stop worrying. I started my cardiac rehab which certainly is waking up all my muscles. It is a very slow process but I am enjoying having the structure. Thanks for all the warriors who have helped and kept me in your prayers.

I am on day 24 of my recovery from my valve repair. I have been having terrible migraines with vertigo and loss of vision. I had read that this was something others had experienced. Today I got in to see my neurologist. She said these might be medication rebound headache. She said some people who have to take pain meds on a regular basis for incision pain cause this vicious cycle of rebound migraines. She gave me some gabapentin to try to see if it helps (i am already on amitryptiline). She said I might have to tough it out till my healing was further along and my brain settles down. I am slightly panicked because of trying to go back to work. Tomorrow I get to see my local cardiologist so I am hopeful he will support doing disability paperwork to stay out longer. Has anyone ever heard of this type of migraine?

Putting my glasses back on took three days. It is impossible to explain to anyone how exciting it is to have a tube/line removed or an IV removed. We have decided that the analogy that best describes getting out of bed is a Christmas tree that the poor nurses have to untangle and rewire/restring over and over. The same with resuming your bodily functions and seeing such joy in a cough. Hopefully chest tubes and pacemaker are my last hardware to shed.

This week is finally here. Preop CT brain and chest, chest xray, bloodwork, covid and staph tests were negative. Great meetings with PA, ICU nurse lead, anesthesiologist for education and questions. Admission is on Thursday to start Milrinone IV. They have added a Atrial appendage clip and the tricuspid valve repair so we were told to expect a 6-7 hour surgery. When my first son was born at the end of his bassinet was a blue card with his name and a big A+. I thought maybe they had given him a grade but it was our blood type. It has been a joke ever since and I was reminded of the story with all the vials of blood I gave. Having this website to read and become educated has been such a blessing.

Next step in surgery preparation is underway. I arrived in NYC this weekend to allow for some tourism and food. We had to make some changes to our accommodations after being placed in a very dirty hotel room. Today the surgeons office called and based on the complexity of several previous hospitalizations and conditions they are asking to see me in clinic tomorrow to decide on a final plan and earlier admission date. They need for me to get a telehealth scheduled with my GI and have him submit a release before next week. I have GERD, dysphagia and achalasia. I had a Nissan fundoplication following my gall bladder removal in 2016. During the recovery from that procedure I developed blood clots 3 times and had to undergo interventional radiology venogram with versed to clear clots. I have a condition called May Turner syndrome and have a stent in my iliac vein. I am very pleased that the team here has reviewed all the nagging issues that I have and are considering them all. My admission has been moved up to 2/18/21 to allow for them to do full CT scans of my head, abdomen, carotid and legs. They now have me scheduled for inpatient consults with anesthesiologist, vascular and neurologist. Sometime since 2017 they discovered last fall I had a silent stroke. I was having ocular migraines and to be cautious the neurologist did a brain MRI which revealed the event. I am very thankful that this team is being thorough and helping to relieve my anxiety to ensure all these previous surprises are accounted for during OHS.

Just like Cheryl I am having lots of anxiety about my surgery and recovery. I often use music for my relaxation. So often I fell like it is one of the many ways that God sends comfort. This song by Andrew Ripp feels like the message I need to help me let go of my fears and trust more. I was stacking up the years I spent trading punches with the enemy Built myself a double thick stone Tower of lies, higher than the eye could see Trapped in my flesh and bone Crying out to You Lord, I'm desperate Love, come rattle this cage and set me free All of my fears like Jericho walls Gotta come down, come down All of my fears like Jericho walls Gotta come down, come down Oh Lord, my prison turns to ruin When Your love moves in All of my fears like Jericho walls Gotta come down, come down, come down Truth was crashing through the pride and the blame Cutting straight into the heart of me Long before I ever called your name You were fighting for my victory Carved in Your flesh and bone Are wounds that have said my souls forgiven Oh now, I can feel the darkness trembling All of my fears like Jericho walls Gotta come down, come down All of my fears like Jericho walls Gotta come down, come down Oh Lord, my prison turns to ruin When Your love moves in All of my fears like Jericho walls Gotta come down, come down, come down Rebuild me from the ground up All I wanna see is You Terrify the lies with truth All of my fears like Jericho walls Gotta come down, come down All of my fears like Jericho walls Gotta come down, come down Oh Lord, my prison turns to ruin When Your love moves in All of my fears like Jericho walls Gotta come down, come down, come down All of my fears gotta come down Jericho walls Gotta come down, come down, come down

I have some serious anxiety about my surgery because of several previous surgeries that have not gone very well. After appendicitis and hip labrum repair I was unable to get my bladder to start back working. Did anyone have this side effect from surgery or know something that might help?

My hotel reservation is done to arrive in NYC on 5/7 for surgery on 5/21. I hope COVID restrictions at The Mount Sinai hospital for visiting changes before May!