This week saw me at St. Paul's Hospital to meet both the Sarcoid and Heart Function teams. While not "great" meetings, they weren't dismal either. What they did provide was a reality check. The last couple of weeks being on prednisone and being on heart medication I've been doing well. My biggest grip has been insomnia (which hasn't visited for 5 days now...heaven).
I've changed my diet to try to take into consideration my disease and the damage its done. I thought I was on track...I was wrong. And as such my reality check (aka the hospital visits) has kicked in an just when I thought I hit a bit of a cruising speed I need to come back to ground zero and start all over again.
As a recap - just over 2 weeks ago (November 28) I met with the cardiologist. We spoke about starting prednisone and the fact that I was on fluid restrictions. Outside of that 'off hand, informal restriction' noted by a nurse when I was in the hospital, no one mentioned any dietary restrictions to me. Everything else I was putting in place at the time was self motivated and directed. I knew to restrict salt, check. I restricted inflammatory foods, check. I began targeting and eating anti-inflammatory foods, check. I was eating anti-oxidants, check. I felt good, mentally and physically.
My appointment with the cardiologist, as I sat on the cusp of starting prednisone, was whether fluid restrictions were required. He noted that the prednisone would cause me to be thirsty and have cravings, water would help with the cravings and thus he was ok with me not having a water restriction. No other dietary restriction was discussed.
Fast forward a week on prednisone I was doing well. No cravings and only slight water retention at the end of the days in my ankles. I had lost some weight and no cravings.
Fast forward another 5 days, a few days being in and out of the city and eating some restaurant food...not great for salt restriction diets, and water retention was up...no longer voiding at night to clear it, I could feel it still in my feet in the mornings. On Friday (Dec 12th) morning I had gained 2 lbs from the day before.
Heart Function Clinic Review (Fri, Dec. 12)
On Friday, I went in to my Heart Function Clinic introductory meeting. In the meeting we discussed a number of issues. ICD, diet, activities, moods, fluids, prednisone and many other issues. We discussed my medication...there will be some changes (increases) to the idea dose and I was told that it will take about 9 months for the full effect of these medications to help my heart. Nine months on the heart medications is no big deal...the side effects have levelled off and they are only now a morning/evening inconvenience (which reminds me I need to take them this morning...). I took from this that it may be a while before I'm back in action.
I've been told that the heart medication, ramipril being the main one, has revolutionized heart failure patients (which is what I've had in connection to the sarcoid) in the last 5-years improving (dropping) mortality rates by 40%. That means, from 5 years ago my survival rate has improved by 40%. Its pretty amazing what science has achieved in such a short time.
I was also told that my left ventricle output was ~49% (not too far off normal of 60%) but only 26% in the right ventricle. This right ventricle is where my biggest problem lies...it has a leaky valve and its the biggest concern right now with my salt intake/fluid retention as too much fluid with that poorly operating ventricle could lead to chronic (aka persistent) heart failure, not something we want to happen.
The woman I met also discussed my fluid and salt restrictions...the more important dietary issues in association with my heart. I'm back on a fluid restriction though they'll see how I go with 2.0 litre a day restriction (much better than the 1.5 which I was always wanting just a bit more) and salt restriction of 2,000 mg a day which I thought at the time I was doing just fine. That is until the nurse reminded me about "eating out". Even having grilled chicken on a salad likely has more sodium in one meal then half my daily recommendation. This was the biggest eye opener, I was being careful but completely overlooked the salt added to a roasted potato. It wasn't enough to look at the salt content of the packaged salad dressing, this was the minor salt component, it was the salt in other areas (like the chicken) that was adding whopping amounts. Reality check!
This is such a concern that I'm to watch for weight gain of 4 lbs or more in a 2 day period or 5 lbs over a week (recall, that Friday morning I was already up 2 lbs). These were the warning signs that I was retaining too much fluid (even if it was caused by the prednisone) but that fluid retention was dangerous to my heart and it needs addressing.
It dawned on me that when cooking at home I was doing fine (and I didn't put as much credence in the salt restriction as I was in the other dietary restrictions I was making) but any time I eat out I was likely double my daily restriction.
This morning (Sat Dec, 13) (after my usual frequent voiding through the night...that will be another blog post on what's going on there) I was up another lb. That was 3 lbs in 2 days...just on the cusp of my maximum allowed and enough of a close call that I realize how important fluid and salt (or lack of) is going to be. Hopefully once I'm off the prednisone these restrictions won't likely be so crucial but daily weight monitoring (which is my new normal now) will be. The good news is I simply waited 30 minutes after my first weigh in to pee again which brought my morning weight down a pound and I'm back to the 2 lb gain over the 2 days. I'm hopeful that a day of proper salt and fluid restriction will resolve it over the next couple of days.
Yesterday I was feeling a bit dejected with myself. I thought I was doing so well only to realize that I was totally missing the mark. My last 2 weeks felt futile but this morning I have a renewed optimism of having some control of a disease that is difficult to assess and monitor. Who knew swollen ankles are my sign that my heart is struggling.
I still feel "normal", not sick and its still a very strange reality to feel so normal yet be told that "you have a very serious condition". I take this as a blessing that I get to feel so good and I'm squeezing every bit of feeling good out of this as I can.
Sarcoid Team Appointment (Thurs, Dec. 11)
I recognize that this appointment occurred prior to the Heart Function appointment but in discussing what I learned from each of these, the HFC apt was definitely more applicable to my ongoing care than this one so it made sense to discuss first.
Initially I was told that the Sarcoid team would oversee my care going forward. It does not look like that will be the case. Its worth noting that the sarcoid team are respirologists as this is the commonest form of sarcoid. So being followed by a respiratory team may or may not be in my best interest. Further articulation of my ongoing care may be hard to articulate so bare with me on this.
Some tidbits of information we learned from this appointment:
- Sarcoid that does not impact the heart is typically passive, slow moving and responds well to treatment.
- Sarcoid (for unknown reasons) when it impacts the heart is aggressive and much harder to treat. That said, it can be treated and there are no pre-cursors as to who will respond and who will not. Only time will tell. Some patients are off and on prednisone because the sarcoid keeps coming back (and eventually end up on the donor list once the heart has been damaged enough) while others receive one dose of treatment and 10 years down the road the sarcoid is still in remission. Cardiac sarcoid contains life long monitoring because of the aggressive nature of the sarcoid with the heart, it does come back.
- Treatment for cardiac sarcoid has been relatively unchanged over the last 10-20 years. So when looking at the statistics of the sarcoid coming out of remission, these stats still apply. Doctors believe it is unlikely that this will ever change. The reason for this being...
- Heart treatment, especially in relation to cardiac sarcoid, has advanced leaps and bounds over the last 5-15 years. The doctor at this appointment said to me, 20-years ago I would have given you zero chance of survival in the near term, today with the medical advances of medicine and heart transplants, we expect that you will enjoy a long and mostly healthy life.
- The respirologist noted that my care will be under the cardiac team with their close monitoring (he even clarified the cardiologist saying there were only 2 he was comfortable overseeing my care when speaking with the team's coordinator).
- He then noted that the cardiac team do not care about the treatment of the sarcoid. Their only focus is the treatment of the heart. To the cardiac team they could care less about what the sarcoid is doing, active or in remission, and due to the lack of progressive advancement with cardiac sarcoid treatment they approach is as the best options for long term survival lies with minimizing damage to the heart (ie my beta blocker and ace inhibitor) and then if/when its needed we move to transplant. Whether the sarcoid goes into remission for 2-5-15 years is irrelevant and to them its just an adjustment in the time frame. I'm happy to take the 15 years part simply because heart transplant advancements are huge these days, may as well make it that far to get the best option possible.
So, following this appointment and the one of Friday, it makes sense for my heart function to be my number one priority.
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