Just popping in to provide an update as time progresses with the prednisone and other medications.
I'm just over 4 weeks into starting the prednisone. One thing I remember looking for was when other people's side effects started to take effect. Things like when I should see my "moonface" or cravings.
I know I've touched on this earlier but to reiterate, I still haven't had much for cravings. The pharmacist did say this should have been within the first couple of days of starting the prednisone so now that I'm 4.5 weeks in I suspect that I've escaped the cravings. Not sure if its due to cutting out a number of foods prior to starting (gluten free, no refined or concentrated sugars and highly reduced salt) or if I'm simply not prone to the cravings.
No cravings mean I've maintained my weight, actually I'm still down a few pounds since starting the diet changes. The only fluctuations I get are when I'm not tight on my sodium intake.
Moods, anxiety or depression. I think I've managed to escape these side effects as well. Mind you, in all our struggles, ramped up on high dose hormones or post pregnancy I've never been one to have mood or depression issues and so this may have worked in my favour as well.
Moonface. Around the 3 week mark I noticed that my face was a bit fuller (right around when I adjusted my prednisone to morning for a few days) and it stayed a bit full for about a week. About 4 days ago (just before the 4 week mark) I noticed it got just a little bit fuller. I'm not sure if this is "it" or if I'll keep filling out bit by bit but it seems to happen in a very short period of time (ie I wake up and by the afternoon I can tell there's a difference, then it stays that way for a while). I'm not as full as I've seen so likely I've got some more fat distribution to go but so far I'm taking it as a benefit as my fuller face makes me appear younger :). And I've been told by many that I'm looking radiant and healthy!!
I still get periodic aches and pains and some "not so great sleeps" but nothing like the first few weeks. I'm happy that I'll start weaning in another week and a half. I've tried to find out at what prednisone dose the side effects are minimal but so far no luck. Dwayne mentioned that our bodies are able to produce around 20 mg so perhaps this is a level that the body will adjust with.
On another note I have been back walking daily. I notice that for my water retention, walking helps during the day keep it down. I spent a number of days reducing my sodium levels more and more, or reducing my water because it seemed that by 5 pm over Christmas my ankles and knees were swelling (previously just my ankles) but after a couple days of doing some walking/activity the swelling was just limited to my ankles.
As of today I'm keen to begin exercising my arm more and more and I'm hopeful that I'll even get on my bike for a spin in the garage, maybe for tomorrow?!?! I think the spinning will be even better for the swelling though the walking is good for impact type activity which should help with the bone density loss associated with the prednisone.
On another note, on January 5th I have my appointment with the Mayo Clinic in Arizona. I'm not sure what it will bring (any new information or simply assurance that I'm doing well with the team currently following me) but I'll be sure to update when I go.
So after my appointment on Monday it was recommended by the pharmacist that I make some changes to when I take my prednisone during the day. Initially I was told to take it with my biggest meal (generally speaking that's dinner for me). When discussing the side effects I've had (insomnia, night sweats) it was suggested that I try taking the prednisone at breakfast so by the time night arrives, the biggest effect of the prednisone is already weaning out of my system.
I forgot to do this Tuesday but was able to take it on Wednesday earlier in the day. On Thursday morning I experienced my first ever dizzy spells. Again, Thursday and Friday were early prednisone days and on Friday afternoon I has weird vision issues (best described as kaleidoscope vision). Saturday I'm back taking the prednisone in the evening. I figure if it wasn't that broken (I can deal with insomnia and night sweats) then just leave it alone.
I also noticed on on Saturday (yesterday) that my face has started looking fuller. I'm curious as to whether its taking the prednisone earlier in the day as well. After all, I was taking it in the evening and then going to sleep, most of the time sweating/peeing all the fluid out of my body during the night (a weird side effect I've noticed since being on the prednisone). Three days of taking the prednisone in the morning and not sweating/peeing for 8 hours following (because I'm awake) may have something to do with the water retention moving to my face. No idea but either way, I've decided that it works best for me to be taking the steroid in the evenings.
On Monday, December 15th I met with the full Heart Function Team.
I have a nurse that acts as my point person (my constant), a pharmacist that reviews my medications and any concerns I may have with side effects and other potentially conflicting vitamins and substances, I met with a resident that knows my file inside and out, and I met with the team lead cardiologist who has the final say, checking the t's and i's to make sure everything is dotted and crossed off (not necessarily in that order).
Essentially it was a positive meeting. A game plan for my medication and treatment was reviewed and established (prednisone taper begins Jan. 9th!!), an activity game plan was reviewed and established (green light within reason, arm still has 2 weeks of healing and I need to use common sense and be accessible to emergency crews as we learn my new limits), and a maintenance/monitoring game plan was imitated.
The team is looking into the possibility of using MRI for monitoring despite the fact that my ICD may not be MRI friendly (they are delving deeper with the head of radiology to review my type of ICD. Essentially its much easier for them to use MRI for ongoing monitoring since its easily accessible, no radiation and they have a baseline test to use for changes with my heart. But, they are cautioning me that by going this route I may have some issues with my ICD. Its seems that some ICD's are more MRI compatible than others. While it sounds like mine isn't one of them there's some discrepancy on what "compatible" really means. While none are really MRI safe (there's the risk the MRI can wreck the device) I get the sense that studies done on the ICD's have been flawed so the reality is that it may be perfectly ok for my ICD to have an MRI.
What they will do is scan the device pre-MRI. Then I'll have the MRI and following the procedure, my device will be scanned again to ensure it hasn't been impacted. If it is compromised, I may be getting a new device sooner than later. An unfortunate waste of $20,000 but the reality is that my other alternative is a PET scan, a scan that is really hard to get since the government limits the number of scans in a year. So either I go "too long" without knowing what's happening to my heart, or the risk my ICD and know what's going on when they need to know.
I'm ok with an extra surgery if needed if it means better monitoring (= longer life) and if it means I can avoid the radiation that is associated with the PET scan. No use being cured of heart damage only to end up with cancer down the road.
We discussed other issues with the sarcoid, one being the success they have seen. I've been told that 80% of the time the prednisone will put the sarcoid into remission at least for a period. Then its simply a waiting/monitoring game for when it comes back and then we do it again.
I get the sense that there haven't been too many heart transplants for cardiac sarcoid (1-2 a year) vs ~ 15-20 cardiac sarcoid patients a year. So fortunately its a small component and who knows how long they've battled sarcoid before needing a transplant.
It is interesting that they did mention that cardiac sarcoid has seemed to increase in the last few years and their rationalization is that they've gotten better at detecting it. In fact, the patient immediately following me was another cardiac sarcoid patient. Not that I would wish this on anyone but the more that are impacted, the better they get at treating it. And I feel this is a particularly important issue because the number of people I see who have been impacted by it are young. This is not an old person's disease. Most common age for diagnosis is between 20-40 years of age. Even more heartbreaking is its not something that is anyone's fault. Lifestyle does not make a difference. So you could have the healthiest lifestyle ever and still be impacted by this.
In fact, they tell me one of the reasons I'm still here is because of my healthy lifestyle. So while its frustrating to do a lot of things "right" and still be facing a deadly disease, its comforting to know that healthy choices still have a positive and crucial impact.
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.