As with all of the unique experiences our family has had I have appreciated the information shared by others who have walked similar paths. For example, before Payton was born I spent many hours reading about other CDH babies, looking at pictures and simply being prepared. It allowed me to look past the tubes and wires when she was born and appreciate and soak up the beautiful little baby she was. When sitting on bed rest for 8 weeks while pregnant with the boys, preparing to deliver two premature babies, or prepare to make a decision no parent should ever have to make, it made the time we did have with them less clouded by fear, guilt and grief and instead we have precious memories of those moments to hold dear.
For those of you checking in to see how I'm doing, these posts will likely be pretty boring since they offer very little benefit to anyone not walking this path. Still, its something I feel is important to document and share. There is so little information on the internet on cardiac sarcoid and the more people who share their experiences, the more it helps the next person walking this path. Its also a great journal that I use to refer back to on my life to either see how far I've come or to remind me how beautiful and precious life is even despite the hardships.
Given my posting motives, its also important to remind that these words are about MY Cardiac Sarcoid. This is my journey, my story, my decisions. I've made many of these decisions based on reading, what is right for me, information relayed by my doctors (3 party now so much could be lost in the translation) and gut feelings. That doesn't make my choices right, just mine.
Where I am Today, Dec 14, 2014:
A summary of my story: My VT episode occurred on Nov. 9th, 2014, by the time I went to the ER it was in the early morning hours of Dec 10. By the time they shocked my heart back to a normal rhythm I had been in VT for about 4 hours. My symptoms were hard to detect and the only thing that triggered that something was 'wrong' was I struggled to breath when lying on my back. Sitting up/standing I felt normal and when driving to the hospital I almost turned back home because I felt "normal".
My initial ECG (while in VT) is what landed me a long term stay in the hospital. I'm very fortunate that they were able to monitor the VT which is deemed a very dangerous rhythm. Knowing that I was at risk of sudden death, there was a huge push to diagnosis the underlying cause. That huge push is what led to a number of inpatient tests including ECHOcardiogram (which showed heart failure, poor heart function and ventricle enlargement) and an MRI (which showed heart damage) and finally a heart biopsy which found Sarcoid. Had I simply been treated for heart damage (they originally speculated AVRC) the sarcoid would have continued to damage my heart so having a diagnosis has been hugely beneficial and many cardiac sarcoid suffers go long periods of time without a diagnosis. For the record, in situations such as mine, where the sarcoid is ONLY impacting my heart, the heart biopsy is the only test that is conclusive in its diagnosis.
I had my ICD/PaceMaker inserted on November 21, 2014: One of the biggest advances in survival for cardiac sarcoid over the last 10-15 years has been ICD insertion. The doctors were adamant that I was not leaving the hospital without an ICD and after doing the research, I agree. The literature is scary for survival rates following CS diagnosis but these numbers have changed because of ICD insertions. A previous VT episode is not needed for these little guys to be worth it. AND, from my experience with VT, it could be an experience that many could completely mistake for anxiety, too much coffee or even not notice it.
Started Heart Medication on November 11, 2014: I started Metoprolol (beta-blocker) and they added Ramipril (ace inhibiter) shortly after. After a month my dose is currently at 50 mg Metoprolol, twice a day and the 5mg Ramipril, twice a day. I was told on Dec 12 during my Heart Function assessment that I'm only at half the recommended Metoprolol dose so I expect that during my follow-up appointment tomorrow that this will be increased imminently. I was also told that these medications take 9-months to reach their peak benefit so I have a number of months of rest and heart healing to go before I get to that point.
Started Prednisone November 28, 2014: I'm on 50 mg of prednisone (once a day) and currently just over the 2-week mark on this. In conjunction with the prednisone I'm also taking 1000 mg of vitamin D, 1200 mg of calcium and an antibiotic (Sulfatrim). There are so many complications that can come from long term, high dose prednisone use and these additional vitamins and drugs helps reduce some.
My noticeable side effects while on this dose have included: insomnia (started around day 5 but has been very periodic, probably 50/50 over the last 10 days), headaches/joint aches (only a few days of this), upset stomach when I don't eat a big meal when taking it (taken during dinner and if I only eat a salad or other light meal my tummy does ache over night), water retention (started about day 4, more and more each day...if you read yesterdays post you'll see that I have cut back on fluids and salt intake since meeting with the medical team on Friday. This awareness and change resulted in 3 lbs of water loss from yesterday so definitely one to keep in mind and recognize you have some control over).
My unnoticeable side effects include: Increased white blood cells and increased glucose levels (both identified in my blood work from Tuesday). There is a standing order to do another blood panel on Monday to test both again, the main concern being the white blood cells. While this could be a response to my immune system being suppressed from the prednisone, it could also be an infection with the ICD and with it having wires directly leading to my heart, this could be bad if not addressed. Thus, we'll see if my WBC counts increase on Monday. In reading about increased gluclose levels with prednisone use, I read that usually the levels are highest in the first portion of the day after taking the medication. Since I take the medication in the evening, I suspect my morning gluclose levels are at their highest and then stabilize through the day. It will be something discussed with the team on Monday, but as is expected with this disease, talking to the cardiac team about the prednisone is difficult since their experience does no lie in this area.
I have been told by the sarcoid team that the following issues will begin to arise after about 2 months on the prednisone: higher risk for lung infections (doing this medication over the winter/flu/cold season probably isn't ideal) as the 2-month period is when the immune system is the most suppressed, water/fat retention (aka moon-face).
I haven't had any cravings so far (not sure when this should kick in) and have lost weight since being discharged from the hospital. Likely the weight loss has been to the huge changes I've made in my diet working to cut out some major inflammatory foods (refined sugars and gluten) and also working to keep my salt intake low (even more the last few days). Whether this adjusted diet is helping with cravings is unknown (for example I may be too early in the medication to be impacted by cravings yet) but I'll be sure to update as I go.
I am also going to start a recipes/foods page on the blog on recipes that I come across that are specific to cardiac sarcoid. While anyone can utilize these the purpose of these recipes will be aimed at anti-inflammatory foods, inflammation avoidance, anti-oxidants and most importantly, sodium reduction.
Some of these foods I keep readily available in my fridge for lazy days when I don't want to prepare or cook something (since most of these foods/meals are typically labour intense) and it allows me a fix without hassle. The best part, many of these recipes are super cheap to make.
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