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.
Saturday, December 13, 2014
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.
Sunday, November 23, 2014
Home
I arrived home yesterday. Not just for a day-pass like they originally planned.
When I woke on Saturday, resigned to the fact that I would be a patient at St. Paul's for the entire weekend I popped out of my room for my morning walk-a-bout. I immediately bumped into Dr. Ramanathan, the "head of the department" who was on duty when I first arrived at the CCU at St. Paul's. As I walked passed saying good morning he called my name, I turned around and he said "would you like to go home today?" I responded with "Do I have to come back tonight?" but his response was "Sorry, yes". With a little chuckle and I said "yes, I would love to go home today" and he proceeded to promise to arrange for a day-pass.
A few hours later I was preparing for my day-pass only to have the nurse come in and say "don't get too far ahead of yourself, you may actually go home today for good".
So here I am, home around 2:00 pm yesterday, a quick stop at home to hug, cuddle and soak up the girls and then a quick trip to Sheena's (Blown Away Spa) to get my hair washed...another wash is scheduled for Monday. I expect that I may be able to shower as early as Tuesday baring any wound complications. Regardless, LOVE, LOVE having clean hair. Outside of the girls and Dwayne, maybe the best thing with coming home.
Its been a wonderful weekend home. I'm achy, I'm scared and I'm incredibly thankful of everything I have in my life. This includes my girls, my husband, my family, my friends, neighbours, acquaintances and even strangers who have reached out.
We have been given wonderfully kind tokens of food, thought, generosity, gifts and most of all, support and empathy.
What happens next? Well currently I wait to hear back from the blood tests they did last week to determine if I'm a carrier for TB. The reason being, the prednisode I''ll be taking can re-activate a dormant TB and ideally I'll want to deal with that prior to starting any meds (or at least deal with it in tandem). Outside of that its just a waiting game, fingers crossed that my heart doesn't jump to its own beat as I want to avoid the 1-2 punch as much as possible.
I'll also get an eye exam this week at a minimum. It may not be the one the doctors booked but I'm moving forward on my own booked exam just for peace of mind.
In addition to that, my critical illness coverage provides me access to Best Doctors and I've got the team in St. Paul's compiling my files to send for a review, assessment and treatment recommendation in the hopes that it either matches, or possibly provides some insight into possible new alternatives that could tip the scale in my favour.
Outside of that I wait. I feel good, I don't dwell too much on the "what ifs" right now (easy to do when I feel pretty good) and I plan. Plan for the worst case scenario and plan for the best case scenario. Either way, I'm committed to doing what I can to have all my bases covered.
When I woke on Saturday, resigned to the fact that I would be a patient at St. Paul's for the entire weekend I popped out of my room for my morning walk-a-bout. I immediately bumped into Dr. Ramanathan, the "head of the department" who was on duty when I first arrived at the CCU at St. Paul's. As I walked passed saying good morning he called my name, I turned around and he said "would you like to go home today?" I responded with "Do I have to come back tonight?" but his response was "Sorry, yes". With a little chuckle and I said "yes, I would love to go home today" and he proceeded to promise to arrange for a day-pass.
A few hours later I was preparing for my day-pass only to have the nurse come in and say "don't get too far ahead of yourself, you may actually go home today for good".
So here I am, home around 2:00 pm yesterday, a quick stop at home to hug, cuddle and soak up the girls and then a quick trip to Sheena's (Blown Away Spa) to get my hair washed...another wash is scheduled for Monday. I expect that I may be able to shower as early as Tuesday baring any wound complications. Regardless, LOVE, LOVE having clean hair. Outside of the girls and Dwayne, maybe the best thing with coming home.
Its been a wonderful weekend home. I'm achy, I'm scared and I'm incredibly thankful of everything I have in my life. This includes my girls, my husband, my family, my friends, neighbours, acquaintances and even strangers who have reached out.
We have been given wonderfully kind tokens of food, thought, generosity, gifts and most of all, support and empathy.
What happens next? Well currently I wait to hear back from the blood tests they did last week to determine if I'm a carrier for TB. The reason being, the prednisode I''ll be taking can re-activate a dormant TB and ideally I'll want to deal with that prior to starting any meds (or at least deal with it in tandem). Outside of that its just a waiting game, fingers crossed that my heart doesn't jump to its own beat as I want to avoid the 1-2 punch as much as possible.
I'll also get an eye exam this week at a minimum. It may not be the one the doctors booked but I'm moving forward on my own booked exam just for peace of mind.
In addition to that, my critical illness coverage provides me access to Best Doctors and I've got the team in St. Paul's compiling my files to send for a review, assessment and treatment recommendation in the hopes that it either matches, or possibly provides some insight into possible new alternatives that could tip the scale in my favour.
Outside of that I wait. I feel good, I don't dwell too much on the "what ifs" right now (easy to do when I feel pretty good) and I plan. Plan for the worst case scenario and plan for the best case scenario. Either way, I'm committed to doing what I can to have all my bases covered.
Friday, November 21, 2014
Off Balance
I found out about Sarcoidosis on Wednesday, late in the day. From my conversation with the medical team it sounded like a lot of "our team doesn't have a lot of information on this, we'll leave it to the other team to explain".
From there I pulled as much basic info as I could on Sarcoidosis. I had a general idea that it was concentrated to issues with the heart but my first step was to understand the disease. In a nut shell, 75% of Sarcoidosis patients see a remission with treatment.
Day 2 was spent working on homework before my noon surgery since I knew I'd be limited typing.
A late day meeting with another cardiac team (the heart failure team?) discussed a strategy. The strategy seemed simple. Start steroids a few days after the ICD has been allowed to heal a bit so to lower risk if there's infection (since the steroids will exasperate the infection), do the steroids for about 3 months and hope its in remission. Sounds simple. Sounds promising. I was told I should see some heart function improvement once the inflammation was gone.
I asked about how we would tell if it when into remission. Simple answer was "we'll continue to monitor it". When the team left I was left with a sense of optimising. Keen to continue my life as is (full time work, EMBA courses even if I was banned from driving for the next 6 months).
Day 3 (today) was a day to delve a little deeper...still, mostly one handed so its been slow going.
I didn't like what I was seeing. The information was not reflecting the general long term outlook that had been indicated in my meeting last night. I also asked repeatedly "when can I go home". No good answers. In fact, yesterday it was suggested that all remaining tests could be done as an outpatient. None were life threatening.
Today, no one had a good reason why "home" wasn't on the agenda other than "I think they want you to see the respirologists" (opps....sp??).
Early in the day I asked one of the cardio members to give me their info. She did, the basic data on Sarcoidosis and mentioned that she would have to ask permission to give me more details. I knew then that it wasn't good news. I felt like a terminally ill patient with 2 weeks to live being told I was fine...why wreck what time she has).
I told her I was going to be on the internet anyway so they may as well give me the information that was relevant and not risk the additional, sordid, details.
Second Team 1 meeting later in the day resulted in approval to give me all the information. It confirmed what I read online.
Then one of the respirologist residents came by to see me. Asked some questions, checked me over and asked if I had any questions. I said yes, and proceeded to ask her about the information I had seen/read.
She mentioned she couldn't answer my questions but the team leader would come see me later.
He did. An gave me some info (not new) before I asked my questions:
Is what I'm reading true? Cardiac Sarcoidosis has not been shown to go into remission?
Life expectancy with Cardiac Sarcoidosis is much worse than overall Sarcoidosis?
Why was I given a grave "likely" diagnosis, then a new diagnosis with a huge silver lining only to find out the diagnosis may be worse than the first?
In a nut shell, prednesoid steroids will likely be intermittent but continuous for the rest of my life.
They don't know how long the rest of my life will be. Some studies show 8 month medium survival rate following a symptomatic event (my VT event). Some studies show 89% 5-year survival rate, some show 45% 5-year survival rate (in situations where Isolated Cardiac Sarcoid has good left ventricle output...so far they say I have this).
ISC is poorly understood...so they don't know what to tell me. There are no other indicators (other than the left ventricle output...not the official medical term) that will dictate whether I live or die (in the next 5 years anyway...apparently there's not enough data to estimate beyond that period). I could be a 70-year old "good left ventricle ISC" and outlife a 45 year old "good left ventricle ISC"
There are two great silver linings in all this.
- Its not genetic (or at least if it is it can be caught early and likely not impact like ARVC would have) and,
- ISC patients make great heart transplant patients (1-year and 5-year survival is higher than average)
So in a nut shell, I have a lot of soul searching I need to do. My bucket list is pretty small but I'm thinking the one thing on the list may not happen...have grandchildren (or at least hold them).
So I'll have to change that list...and the changes will have to start today. I'm pretty sure it'll be stellar.
In the meantime, I've got to find a balance with this new information.
Right now I'm off balance but I promise, it won't be for long...
From there I pulled as much basic info as I could on Sarcoidosis. I had a general idea that it was concentrated to issues with the heart but my first step was to understand the disease. In a nut shell, 75% of Sarcoidosis patients see a remission with treatment.
Day 2 was spent working on homework before my noon surgery since I knew I'd be limited typing.
A late day meeting with another cardiac team (the heart failure team?) discussed a strategy. The strategy seemed simple. Start steroids a few days after the ICD has been allowed to heal a bit so to lower risk if there's infection (since the steroids will exasperate the infection), do the steroids for about 3 months and hope its in remission. Sounds simple. Sounds promising. I was told I should see some heart function improvement once the inflammation was gone.
I asked about how we would tell if it when into remission. Simple answer was "we'll continue to monitor it". When the team left I was left with a sense of optimising. Keen to continue my life as is (full time work, EMBA courses even if I was banned from driving for the next 6 months).
Day 3 (today) was a day to delve a little deeper...still, mostly one handed so its been slow going.
I didn't like what I was seeing. The information was not reflecting the general long term outlook that had been indicated in my meeting last night. I also asked repeatedly "when can I go home". No good answers. In fact, yesterday it was suggested that all remaining tests could be done as an outpatient. None were life threatening.
Today, no one had a good reason why "home" wasn't on the agenda other than "I think they want you to see the respirologists" (opps....sp??).
Early in the day I asked one of the cardio members to give me their info. She did, the basic data on Sarcoidosis and mentioned that she would have to ask permission to give me more details. I knew then that it wasn't good news. I felt like a terminally ill patient with 2 weeks to live being told I was fine...why wreck what time she has).
I told her I was going to be on the internet anyway so they may as well give me the information that was relevant and not risk the additional, sordid, details.
Second Team 1 meeting later in the day resulted in approval to give me all the information. It confirmed what I read online.
Then one of the respirologist residents came by to see me. Asked some questions, checked me over and asked if I had any questions. I said yes, and proceeded to ask her about the information I had seen/read.
She mentioned she couldn't answer my questions but the team leader would come see me later.
He did. An gave me some info (not new) before I asked my questions:
Is what I'm reading true? Cardiac Sarcoidosis has not been shown to go into remission?
Life expectancy with Cardiac Sarcoidosis is much worse than overall Sarcoidosis?
Why was I given a grave "likely" diagnosis, then a new diagnosis with a huge silver lining only to find out the diagnosis may be worse than the first?
In a nut shell, prednesoid steroids will likely be intermittent but continuous for the rest of my life.
They don't know how long the rest of my life will be. Some studies show 8 month medium survival rate following a symptomatic event (my VT event). Some studies show 89% 5-year survival rate, some show 45% 5-year survival rate (in situations where Isolated Cardiac Sarcoid has good left ventricle output...so far they say I have this).
ISC is poorly understood...so they don't know what to tell me. There are no other indicators (other than the left ventricle output...not the official medical term) that will dictate whether I live or die (in the next 5 years anyway...apparently there's not enough data to estimate beyond that period). I could be a 70-year old "good left ventricle ISC" and outlife a 45 year old "good left ventricle ISC"
There are two great silver linings in all this.
- Its not genetic (or at least if it is it can be caught early and likely not impact like ARVC would have) and,
- ISC patients make great heart transplant patients (1-year and 5-year survival is higher than average)
So in a nut shell, I have a lot of soul searching I need to do. My bucket list is pretty small but I'm thinking the one thing on the list may not happen...have grandchildren (or at least hold them).
So I'll have to change that list...and the changes will have to start today. I'm pretty sure it'll be stellar.
In the meantime, I've got to find a balance with this new information.
Right now I'm off balance but I promise, it won't be for long...
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