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.
Monday, December 29, 2014
Sunday, December 21, 2014
A few minor adjustments
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.
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.
Thursday, December 18, 2014
Heart Function Team Meeting
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.
Monitoring:
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.
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.
Monitoring:
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.
Sunday, December 14, 2014
My Cardiac Sarcoid - Odds & Sods
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.
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.
Saturday, December 13, 2014
My Reality Check
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.
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.
Tuesday, December 2, 2014
I'll Love You Forever...
{This was an unpublished post I drafted back in the fall of 2013 as a family update. Just over a year ago. I'm posting it now because its a wonderful reminder of how life is wonderful and if you have perspective you can look at the little things, the things we often take for granted, and find wonder, happiness and beauty. Life has thrown a lot of lemons at us but I'll forever be grateful for seeing the world in this different light}
...and that little girl, she grew. She grew and she grew and she grew.
That book pretty much sums up my life right now. The girls are growing, I'm trying to hold them, love them as much as I can but they are still growing. And no matter how much I cherish that moment when I hold them, when I breath deeply of their scent, or hold them tight, cuddle, play, laugh with them...its never enough.
There's not much going on in our lives that is 'big' or 'exciting' and things are generally very good for us.
We recently spent some time with my extended family at a wedding and it was so great to see so many wonderful people but so frightening to see so many "babies" all of a sudden grown up.
Life can be so incredibly bitter sweet and you know what...it doesn't help when you stop and smell the roses because it still goes too fast (trust me, I've been making every effort to stop and smell over the last few years) and then you feel like you were cheated. Like you bought that infomercial product with high expectations that it was going to be a life changer and you realized that your just like everyone else, time goes too fast and memories are slipping through the cracks in your brain like little wisps of smoke. Still, I'm incredibly thankful that the smell of a rose is now so familiar to me.
Its when going through the photos of the weekend (yes, sorry...the best one, was the one with hand photo bomb) I'm shocked to realize that my family is a family of 2 parents and 2 girls. There are no babies anymore.
Livy is having intellectual conversations. She's "figuring" out the world around her with observations, questions and curiosity. She's not asking just "why" she's asking "why not".
The larger and larger glimpses I see of the person she is going to be amazes me and excites me...there is still that rambunctious little toddler, eagerly stirring up trouble, but man, that person in there is going to be amazing. The problem is I have to let go of that toddler to meet that person. I'm not sure that trade off is 'ok' with me and after all I have seen/experienced, I hate it when life chooses things for you.
Payton, what a character. Its amazing how smart she is on such different levels than Livy. While Olivia was talking like a 10 year old at the age of 2 (pronunciation and vocabulary wise), Payton talks like a 2 year old (with a wicked vocabulary) but will tease and joke with us using a sense of humour even Livy is too young to understand. Where did this wisdom come from? I have no idea but I truly believe Payton is the first "old soul" I've ever met. Though not because she's far too mellow or somber for her age but more because she seems to have an intelligence about her that is years beyond her age...a very funny intelligence I must say.
So there we have it. Two girls, raised in the same home by the same parents. One child breaks into laughter and giggles with fart and poop jokes while the other finds it hysterical to "answer the remote control like a phone, tell you its for you then laugh at you as she points out that your talking into a remote and not a phone".
I have to say this parenting thing...its pretty darn awesome, even if its completely out of my control.
{End of Drafted Message}
...and that little girl, she grew. She grew and she grew and she grew.
That book pretty much sums up my life right now. The girls are growing, I'm trying to hold them, love them as much as I can but they are still growing. And no matter how much I cherish that moment when I hold them, when I breath deeply of their scent, or hold them tight, cuddle, play, laugh with them...its never enough.
There's not much going on in our lives that is 'big' or 'exciting' and things are generally very good for us.
We recently spent some time with my extended family at a wedding and it was so great to see so many wonderful people but so frightening to see so many "babies" all of a sudden grown up.
Life can be so incredibly bitter sweet and you know what...it doesn't help when you stop and smell the roses because it still goes too fast (trust me, I've been making every effort to stop and smell over the last few years) and then you feel like you were cheated. Like you bought that infomercial product with high expectations that it was going to be a life changer and you realized that your just like everyone else, time goes too fast and memories are slipping through the cracks in your brain like little wisps of smoke. Still, I'm incredibly thankful that the smell of a rose is now so familiar to me.
Its when going through the photos of the weekend (yes, sorry...the best one, was the one with hand photo bomb) I'm shocked to realize that my family is a family of 2 parents and 2 girls. There are no babies anymore.
Livy is having intellectual conversations. She's "figuring" out the world around her with observations, questions and curiosity. She's not asking just "why" she's asking "why not".
The larger and larger glimpses I see of the person she is going to be amazes me and excites me...there is still that rambunctious little toddler, eagerly stirring up trouble, but man, that person in there is going to be amazing. The problem is I have to let go of that toddler to meet that person. I'm not sure that trade off is 'ok' with me and after all I have seen/experienced, I hate it when life chooses things for you.
Payton, what a character. Its amazing how smart she is on such different levels than Livy. While Olivia was talking like a 10 year old at the age of 2 (pronunciation and vocabulary wise), Payton talks like a 2 year old (with a wicked vocabulary) but will tease and joke with us using a sense of humour even Livy is too young to understand. Where did this wisdom come from? I have no idea but I truly believe Payton is the first "old soul" I've ever met. Though not because she's far too mellow or somber for her age but more because she seems to have an intelligence about her that is years beyond her age...a very funny intelligence I must say.
So there we have it. Two girls, raised in the same home by the same parents. One child breaks into laughter and giggles with fart and poop jokes while the other finds it hysterical to "answer the remote control like a phone, tell you its for you then laugh at you as she points out that your talking into a remote and not a phone".
I have to say this parenting thing...its pretty darn awesome, even if its completely out of my control.
{End of Drafted Message}
Getting into the swing of things...
I'm a bit late with an update from my cardiologist appointment on Friday but in my defense there isn't much to share.
My cardiologist, Dr. Ramanathan, has been great. We initially got off on the wrong foot (he was the doctor who broke the news to me day 2 in the hospital that my condition was life threatening and left me bawling for the day...but he's also been the doctor who's been the most upfront and honest, giving me the opportunity to process the information and thus allowing me to deal with it).
Alas, the meeting was to check on my ICD (all is fine) and to see if I had any questions. I did...when do I start the prednisone?
I'm sure there will be the odd hiccup in my care, human nature being as it is and the fact that I'll have 2 different teams following my progress, but yes...my TB results came back and sat on a computer. Not sure for how long they did that but the results were there and there was some meek surprise that I hadn't been notified. Alas, TB free I started my prednisone on Friday. 60 mg and this course is expected to go for 3 months.
So today is Tuesday, I've had 4 doses and aside from a headache and overall leg ache on Saturday and crazy insomnia on Sunday night I've been good though I have had some water retention but it fluctuates so no real complaints there.
I'm not sure when the nasty side effects will kick in (if they do at all) but I've been very strict with my eating and I'm hopeful that it will help weather some of the more unwelcome side effects.
Since sarcoid is an inflammatory disease, I've done what I can to cut out any potential inflammatory foods. This started with my reducing refined sugars coupled with my previous reduction of salt due to the heart damage. Fortunately, in getting my body ready for a long course of high dose prednisone, already having reduced salt was a great thing since the medication causes water retention.
Last Monday we reviewed the other areas in my life that are likely adding to potential inflammation and we're looking at options for our dogs (being that I'm allergic and have been living with dogs for 12 years now) and we debated over lowering simple carbs and or gluten. Carbs simply because I feel better when I cut them down but then debated over whether this was going to be a life long sustainable diet vs keeping very healthy foods such as potatoes.
In the end we did some research and thought we'd give gluten the axe for now and see how that made me feel and how we felt about sustaining that type of dietary life style.
For the record, cutting out gluten is much easier than cutting out simple carbs (I can still have my non-fat latte in the morning which starts my day off right). And, meals are much easier to plan for when potatoes or rice are an option (though we still don't eat a lot of these food). Also, the fact that there are so many gluten free options (pasta, bread) it still allows us to create and enjoy many of the meals we love.
So for now I'm feeling good and I'm hopeful that I'll be able to maintain a diet that will keep my risk of diabetes low (by reducing refined sugars) and the reduced salt (needed for my heart) will help keep the water weight down as well and thus will aid in feeling better and thus I'll still be up for walks and eventually spinning in the garage and maybe in the new year some running (when my arm mobility is back).
In regards to running, that was one thing that my Friday appointment touched on, my heart needs a rest. Its been damaged and has been stressed. So it was recommended that I don't do anything to push it for now and let it heal. I'm good with that since I want to avoid triggering this defibrillator as much as possible.
So that pretty much sums up my assessment to date. I have my official eye exam tomorrow though the exam I had last week here locally came back 'clear' for any sarcoid damage, so I'm thinking tomorrow will be more setting up a base for them to monitor any issues moving forward.
My cardiologist, Dr. Ramanathan, has been great. We initially got off on the wrong foot (he was the doctor who broke the news to me day 2 in the hospital that my condition was life threatening and left me bawling for the day...but he's also been the doctor who's been the most upfront and honest, giving me the opportunity to process the information and thus allowing me to deal with it).
Alas, the meeting was to check on my ICD (all is fine) and to see if I had any questions. I did...when do I start the prednisone?
I'm sure there will be the odd hiccup in my care, human nature being as it is and the fact that I'll have 2 different teams following my progress, but yes...my TB results came back and sat on a computer. Not sure for how long they did that but the results were there and there was some meek surprise that I hadn't been notified. Alas, TB free I started my prednisone on Friday. 60 mg and this course is expected to go for 3 months.
So today is Tuesday, I've had 4 doses and aside from a headache and overall leg ache on Saturday and crazy insomnia on Sunday night I've been good though I have had some water retention but it fluctuates so no real complaints there.
I'm not sure when the nasty side effects will kick in (if they do at all) but I've been very strict with my eating and I'm hopeful that it will help weather some of the more unwelcome side effects.
Since sarcoid is an inflammatory disease, I've done what I can to cut out any potential inflammatory foods. This started with my reducing refined sugars coupled with my previous reduction of salt due to the heart damage. Fortunately, in getting my body ready for a long course of high dose prednisone, already having reduced salt was a great thing since the medication causes water retention.
Last Monday we reviewed the other areas in my life that are likely adding to potential inflammation and we're looking at options for our dogs (being that I'm allergic and have been living with dogs for 12 years now) and we debated over lowering simple carbs and or gluten. Carbs simply because I feel better when I cut them down but then debated over whether this was going to be a life long sustainable diet vs keeping very healthy foods such as potatoes.
In the end we did some research and thought we'd give gluten the axe for now and see how that made me feel and how we felt about sustaining that type of dietary life style.
For the record, cutting out gluten is much easier than cutting out simple carbs (I can still have my non-fat latte in the morning which starts my day off right). And, meals are much easier to plan for when potatoes or rice are an option (though we still don't eat a lot of these food). Also, the fact that there are so many gluten free options (pasta, bread) it still allows us to create and enjoy many of the meals we love.
So for now I'm feeling good and I'm hopeful that I'll be able to maintain a diet that will keep my risk of diabetes low (by reducing refined sugars) and the reduced salt (needed for my heart) will help keep the water weight down as well and thus will aid in feeling better and thus I'll still be up for walks and eventually spinning in the garage and maybe in the new year some running (when my arm mobility is back).
In regards to running, that was one thing that my Friday appointment touched on, my heart needs a rest. Its been damaged and has been stressed. So it was recommended that I don't do anything to push it for now and let it heal. I'm good with that since I want to avoid triggering this defibrillator as much as possible.
So that pretty much sums up my assessment to date. I have my official eye exam tomorrow though the exam I had last week here locally came back 'clear' for any sarcoid damage, so I'm thinking tomorrow will be more setting up a base for them to monitor any issues moving forward.
Subscribe to:
Posts (Atom)