Journey

Happy Thanksgiving – Extra Grateful This Year

Posted on by keepingupwithkate91

Happy Thanksgiving from my family to your family! I’m up early this AM enjoying my coffee waiting for my Cardinal friends to show up and say Good Morning!

I started my Cardiac Sarcoidosis journey while in North Carolina at the end of April this year. Before leaving Duke University Hospital in NC, I left with a shiny, new ICD! I’ve been to countless doctors appointments and a few tests at Jefferson University Hospital in Philadelphia since June and I feel like I’m my own personal Pharmacy (lol)!

At my most recent doctor’s appointment they shared that my ICD has 13 years left on it. Why is that important? Most have a 10 year lifespan. With mine having 13 years – I’m not using my ICD much – it was primarily implanted for pacing purposes – but there is a risk with Cardiac Sarcoidosis that I could at some point need use of a defibrillator (haven’t needed it so far) – so I have both. Win #1!!

Last Friday, I had my first PETScan. What is a PETScan? It is a test that is used to find inflammation in the body. Used for Sardoidosis – especially when you have a ICD (no more MRIs for me). The machine reminded me of pictures I’ve seen of an open MRI. There was prep for this test – NO CARBS – NO SUGAR. My cardiologist asked me to start early if I could. I started my prep Tuesday night and ended Thursday night at 8:20 pm. I then started a 12 hour fast prior to my required time at Jefferson. My ‘diet’ for the week allowed – PLAIN protein (bacon allowed), Nuts (plain), Eggs, Water, and Black Coffee. I kept it simple – Soft boiled eggs and bacon, bacon wrapped plain chicken tenders, and eggs/chicken cooked in bacon grease (yes – you have to get your flavor somewhere!), and plain pecans/walnuts. Way easier than colonoscopy prep. This prep is important to ensure blood glucose prior to the test is under 200. Mine was at a nice 91 (I was able to have water and black coffee during the 12-hour fast). For the next hour, I sat quietly as the trace they injected into me traveled to my heart to ensure the scan was able to see what it needed to see. What was it looking for? Inflammation – specifically – granulomas – key signs of Sarcoidosis! The test is easy and non-invasive – they slide you in (take a blanket though as the room is chilly) and take the ‘pictures’. No holding your breath – I had to do that with the cardiac MRI (pre-ICD). My cardiologist prepped me that she thought I’d still have some inflammation based on how much inflammation I had back in April. She said she would call me to discuss my results (as she would also consult with my Rheumatologist on next step treatments). Jefferson uses myChart – so of course all day Friday – I’m checking the portal and nothing. I figured my Cardiologist was holding the report until she could speak with me. The report showed up in my portal Saturday evening! The report results = “No evidence of active myocardial sarcoidosis!!!” WIN #2!! I’m so pleased with the results! This doesn’t mean I’m cured / in remission – but it is the first step for remission! My Cardiologist and I haven’t been able to connect this week to officially discuss the results, medication adjustments (hoping for another taper on the prednisone), timeline for next PETScan (and remission milestones)!

I’m extra grateful this Thanksgiving for the love and support from all of you during this journey and of course – the results this week!

PS – I will be laying a bit low this winter as I’m on immunosuppressant medication (I’ve had a cold for over a week!) (and I don’t think they will change that medication) and I’ve been sick 3 times so far this fall (nothing major – just annoying!)

Part 4 – My Cardiac Sarcoidosis Treatment Plan

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My cardiac sarcoidosis diagnosis was a result of the team at Duke digging into to find out why I was having bradycardia – heart rate per minute of less than 60 – remember mine was at 40 (and I wonder if it went lower??)

I have a new appliance and it isn’t in my house! In order to make sure my heart rate sits in the normal range – I’m now the proud owner of a pacemaker / defibrillator (aka ICD)! I still remember the nurse in the ER saying I would most likely get a pacemaker – I really didn’t believe her as it was a bit of off the cuff remark (or that is how it appeared to me).

A little background – based on my short amount of research – most who are diagnosed with Cardiac Sarcoidosis – have a very high heart rate and the defibrillator will shock to get you back to a lower rate. On May 1st, Duke wanted to implant a Bi-ventricular ICD (3 wires – which means one wire in each ventricle and 1 in the atrium – unfortunately one of the wires – just wouldn’t work with my body – so I have a 2 wire pacemaker / defibrillator.

The ICD implant procedure was about 2 hours – I was completely under. I was groggy during recovery (I had a heart biopsy in the AM – where they gave me a relaxing sedative – I was awake for that). I had to go on oxygen for a bit until I was getting enough into my lungs – I was tired and it felt like I had a 10 lb. weight on my left shoulder (that was the compound bandage) (and I found out the next day – they used to put a weight on the shoulder around 8 – 10 lbs). I was finally able to eat dinner and enjoy my melted but still yummy vanilla milkshake from Chick-Fil-A (thanks Jill!).

The first 12 hours or so (my recollection) are the most important for the placement of the ICD. They had me up super early for an x-ray (all was good). Then I had a technician set and test my ICD – I felt the pacing a little bit during the test. I’m set to pace at 60 and I think max at 240 (again that is memory – not confirmed – I need to ask the next time I go see my EP Cardiologist). I had doctor’s visits from my care team – Cardiology and Rheumatology. I can’t say enough how wonderful the my CARE team was at Duke!!!

I was lucky to have part of my CARE team either from the Philadelphia area or they went to school in Philadelphia (or both). They helped me get appointments at Jefferson University Hospital so my follow-ups were set before I left Duke on May 2nd (yes I was discharged the next day).

The ICD addresses the electrical part of my heart’s function. I have a monitor at home that is enabled with a cellular connection (I work for a large MVNO so I of course looked to see if the connectivity was provided by my company – it wasn’t – it is connected via Vodaphone). The device checks in overnight about once a week to provide reporting. Plus I can manually send a transmission – which I’ve done twice (all was good both times). I don’t have to take the transmitter with me when I travel – the data is stored. Only time I would need to have it with me is if I was going to be away for a month or more.

To address the inflammation caused by the Sarcoidosis – I was put on prednisone. I’ve had lots of tests and one of the things we found is that my ICD (the pacemaker portion was set to be overly sensitive – so that has been adjusted). As a result of the adjustment – we discovered that I’ve been pacing less and less – what does that mean? It means that the pacemaker hasn’t really had to intervene with my heart’s electrical system – which to me says the inflammation is going down! YEAH!! I’m currently tapering my prednisone and on Cellcept – a corticosteroid-sparing therapy (Cellcept is also used for transplant patients). I’m doing well managing the side effects of both medications. I’m tracking my BP and Glucose daily as both can be raised while on both medications. Both are within normal ranges – so very happy!!! Since I’ve been on prednisone since May – I’m on an osteoporosis prevention medication 1x per week (I will stop that once I’m off prednisone). And I’m taking 2 supplements – Calcium and Omega 3 with Vitamin D & K – all reviewed and approved with my care team (really important to share supplements). All that being said – I will be reviewing medications and interactions with my Pharmacist – always good to double and triple check and ask questions! Remember – be your own BEST ADVOCATE!!!

PS – For those reading who are newly diagnosed with Sarcoidosis – based on all of my research (since May 2025) – the medication treatment can be different as it is a bit of seeing what works and what doesn’t work to get the inflammation down.

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Part 2 – The Diagnosis

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I arrived at Duke with a team ready and waiting to take care of me. They immediately ruled out many issues including a heart attack (lots of blood drawn). I shared all of my symptoms from the day and the prior week. We discussed prior history including my Lyme Disease Diagnosis back in 2012 (I was told it was too long ago for that diagnosis to impact what I have no – I pushed back and said – there isn’t enough research with Lyme Disease!).

It was decided to admit me to overnight into ER observation. The next morning – I was fitted for a Holter Monitor ( https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/holter-monitor) – so my brother and I started looking at flights back to Philadelphia. We were waiting for a discharge update and the next thing we knew I was being told I was being admitted to the Cardiac Floor and having a Cardiac MRI. We asked for a doctor to come in and explain the change in direction (that never happened – in the end – there was an opening with the Cardiac MRI and they wanted to get me in there ASAP as they couldn’t understand why someone my age with no family history of heart issues at this age had such a low heart rate).

Have you ever had a Cardiac MRI? This was my first. It was 90 minutes long as the MRI was with and without contrast. I listened to George Winston – December (my go to for a MRI). The music relaxed me for the test. This was a MRI where I had to participate – I had to hold my breath for periods of time so the MRI could capture the up and down of my heart rate (when I counted to 20 I had to clench my fist – I was able to hold my breath for the time needed).

After the Cardiac MRI, the Cardiologist came in and shared that I most likely had an autoimmune disease that was attacking the heart and creating heart block (think electrical system of the heart vs. heart blockage). The diagnosis – Cardiac Sarcoidosis! Have you ever heard of it? I’ve never heard of it.

I was at the right place at the right time as Duke University Hospital has a Sarcoidosis Clinic (https://www.dukehealth.org/treatments/sarcoidosis)! I believe if I hadn’t traveled to North Carolina that weekend – I wouldn’t have the diagnosis as quickly as I did and the treatment started. My diagnosis is a clinical diagnosis from the Cardiac MRI (Duke has 3 -4 Cardiac MRI machines and UNC Chapel Hill has 1 – after that there isn’t one for over 100 miles!). I had a heart biopsy later in the week that was inconclusive (that happens as the sample can be hard to find the inflammation). I had a CT scan as well and there wasn’t any other inflammation – which is important as Sarcoidosis can attack the lungs, skin, heart, and just about any organ.

The Cardiac Nurse who was with me in the ER and then with the diagnosis on the Cardiac floor (I wish I could remember her name – she went to University of Pennsylvania for Nursing) – we had a connection – she could read my face I’m sure – she reiterated a couple of times – “Thank goodness you didn’t get on the plane to PHL” and she asked me multiple times – “Are you OK?” “How are you doing?” In full transparency – I was scared! I still am as this is an unknown journey – but I’m up for the challenge! I feel extremely lucky that I was diagnoses so quickly and feel like we caught it early!

Part 1: Why Advocating for Your Health Matters: A Personal Experience

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I traveled to Raleigh, NC at the end of April to see my niece’s final dance recital at UNC Chapel Hill. The Star Heels performance on Saturday was fantastic. I so enjoyed watching this amazing young woman (who was graduating in 2 weeks) with her final performance – I’ve been watching her dance since she was a little girl. You can see the love and passion for dancing in every performance! That weekend – I also had a chance to re-connect with life long wonderful friends – my best friend from High School and one of my best friend’s from my time in TX (she is like a sister to me!). It was a fantastic weekend!

Sunday driving to the airport, I had a strange maybe 2 second strange feeling (no other way to describe it). I returned the rental car and the feeling happened 2 more times on the rental car bus. I arrived at the airport decided to sit down for a few minutes and the sensations continued. What did I do? I googled my symptoms! I had a seizure 3 years ago (one and only time) and thought the symptoms were a pre-cursor to one. It was NOT a Seizure!

There were a two decisions I made that day that I’m so grateful I made – I listened to my body as I knew something wasn’t right – I never went through security and flagged down a police officer to tell him I needed help! It probably saved my life! EMT’s arrived – my blood pressure was normal, pulse ox was normal, and my glucose was normal. What wasn’t normal? My heart rate! It was Elite Athlete Low – I have always considered myself an athlete (even when I haven’t exercised regularly) – but when I was playing competitive sports – I was never Elite!

I was alert the entire time (never fainted) and I was able to call my brother (who was at the airport with his family) who joined me with the EMTs. I was able to ask questions and advocate for myself and my brother advocated for anything I missed. One of the most important things I’ve learned over the last 3 years with healthcare – advocate, advocate, and advocate! Based on my heart rate – I need to be transported to an ER – I had two choices – a Regional Hospital or Duke University Hospital – I clearly chose Duke!!!

Why did I share the above? I believe I’m part of a generation who doesn’t want to waste a doctor’s time or go to the ER and it’s a False Alarm. This is a real thing – “In a 2018 British study, one in five people avoided going to the doctor because they didn’t want to ‘make a fuss’ or ‘waste time’ with something minor. This was even higher in women and middle-aged adults (source Cancer Research UK). Psychological barriers – like self-doubt and guilt (‘What if it’s nothing?’ or ‘I’m just overreacting’) contribute to delay – especially when symptoms are vague, like fatigue or dizziness. PS – I had fatigue, head rushes, and shortness of breath (I blamed it on the heat) the prior week at different times.

Delaying care due to fear of overreacting can mean missing early warning signs. Doctor’s would rather check out a false alarm vs. miss something serious.

Bottom Line – You know your body better than anyone else, listen to it, and I’m so grateful I did!

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What I’m Looking For…

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Many of you know that I ran my first 1/2 Marathon last year. While I was training for the 1/2 I did a lot of internal reflection. I realized I was challenging myself personally, but wasn’t really challenging myself professionally.

I loved my job and I enjoyed it – but quite frankly I was really good at it and I could do most things in my sleep.  It was time to do something new and different.  Prior to the 1/2 I looked into a new position but it just wasn’t meant to be.  But then I received a phone call on April 17, 2015 that would change everything!  Fast forward to the middle of June and I started my new Sales Manager position!! (the hardest thing about making the change – was calling my team and telling them the news!)

And let me tell you – it was and is a challenge and I love it!!!  I was able to make an impact in that short time by improving employee/partner morale, grow the business and get my team earning some $$!  Some changes were made earlier this year and I have even more responsibility and big challenges ahead.  And I love it!  I’m challenged, growing and learning –  and unlike one of my favorite U2 songs (and I was at MSG for this one last year) – I found exactly what I was looking for!!!

Half Marathon in the Books

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This is way overdue!!  This has been in draft form since early April.  Been a super busy 2015 but really want to share my story below.

On January 1st of this year I started a run / walk program (as a result of my Jan – Mar travel schedule doing Market Reviews for work). Some of you know my LOVE of Running (or not) – I’ve been very vocal about how much I despise running!

I started off slow with a 2 minute run / 4 minute walk.  By the end of January, I was up to 5 miles and in a training program for a Half Marathon (my first) (2 minute run / 1:30 walk).  I think I finally signed up for the Philly Love Run on February 1st.  I’ve progressed to 2 minutes run / 1:15 walk.  There were 10K runners – I was #7389!

Sunday, March 29th was the 2nd Annual Philly Love Run at 8 am – it was a balmy (and windy) 27 degrees!  The sun was shining and it wasn’t raining – bonus!!

Pre-Race - 27 degrees - March 29th!

Pre-Race – 27 degrees – March 29th!

I finished in 3 hours, 15 minutes.  About 15 minutes behind where I wanted to be (the hills between mile 8 and 9 killed me! 🙂 – something to work on).  Just as a I was getting to the Finish Line I heard the announcer say my name and that I was just about to complete my first 1/2 Marathon- it was awesome – I think it was right about then that I put my arms in the air as I started to cross the FINISH LINE! (and thank you to the ladies below and Todd for waiting for me to finish – it meant the world to me to have such a great support team!)

Shortly after I crossed the Finish LIne - with my Medal!

Shortly after I crossed the Finish LIne – with my Medal!

I’m happy to say I’m a Half Marathoner!  And I would’ve never guessed in a million years I would say that (much less have completed one).   It was such an inspirational day!  I was running and walking with half marathoners – many who were a lot faster than me and some not – it was great seeing people pushing themselves to the limit both mentally and physically.  Quite honestly it kept me going and I was in awe!

The Moment!

The Moment!

 

And a week or two ago, I signed up for the Philly LOVE Run for 2016 – April 10, 2016 – here I come!

The Last Week of Training was Tough – Jimmy Dugan Helped!

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A week and a couple days before the 1/2 Marathon – I got sick.  I think the travel and the crazy weather caught up to me.  I was exhausted and had the start of a bad head cold.  I was completely freaked out ( I got sick over Christmas – with very similar symptoms and I was out of commission for a full week).  I didn’t have time to get sick + I had trained way too hard for it to get in my way.

My training was a bit messed up.  I did get all of my runs in the last week but not in their original order.  I did a 2 mile run on my long run day (Sunday before) and didn’t get my 6 mile taper run in until Wednesday night.  Getting the 6 miles in so helped me with my fear and doubts.    What scared me the most was the starting area – all of those people – starting out too fast and hitting a wall – getting out of my cadence.

I had a lot of encouragement throughout the week from family, friends and co-workers.  Two that stuck with me – “When you put your mind to something – you get it done.”  and “It is a big undertaking & a lot of hard work and you’ll do great!”  Even with the words of encouragement and support – I still had fear and doubts on how this was all going to go.

I was getting all of my gear ready to go to my Aunt’s and Uncle’s in South Jersey (an easy ride over the bridge to the race) and turned on the TV and one of my favorite movies – A League of Their Own was on.  I was able to watch all of it before I had to leave.  This scene near the end of the movie with Jimmy Dugan and Dottie Hinson – was just what I needed to hear:

http://www.youtube.com/watch?v=BNeWa8zH3_8

That quote ‘hit home’ and finally sunk in that I was ready and I’ve got this!!

Thank you to all for the encouragement (and an extra special thanks to Jimmy!!)!!

My journey continues…

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It is hard to believe that I started this journey in the Summer of 2011!  Looking back from the summer of 2011 to May 0f 2012 – I was really dabbling.

Everything changed in May of 2012 when I started seeing my nutritionist.  I can’t believe it has been 3 years already.  I’ve had lots of ups and downs – and I’ve learned a lot about myself.

It is super easy for me to gain weight and so hard for me to take it off.  I’ve had my metabolism tested (functioning on all cylinders – and firing higher than expected), no thyroid issues and I did have that bout with Lyme Disease (Nov 2012).

This time last year I saw a fairly large decrease in a 6 week period during Lent – I changed my eating pattern – 2 meals (and a snack if needed) on non-workout days and 3 meals a day on workout days and I gave up sweets and chocolate for Lent.  I lost 7 lbs.  My favorite quote from my nutritionist appointment was “You can give up sweets for Jesus – but not me.” (I reminded him of that quote when I saw him on Friday.) – it still makes me laugh.

As you know – I’ve been traveling a lot for work the first part of 2015 – which has scared the crap out of me – that I would regress and quite frankly ruin all of my hard work.  So I pulled my awesome resources together to get me through it.  I joined BP’s 8 Week Body Project program (the accountability portion of the program – I did their Fall Inaugural program – and it was AWESOME).  And the other thing I did was reach out to MIM-Multisport Training as I knew running was going to be the thing I could do no matter where I was in my travels (all hotel gyms have a least on treadmill – usually more and I was going to warmer weather locations and could get outside to run).  Plus I’ve seen great results from many of my friends who have trained with MIM Multisport for triathlons – so I know this was the right decision for me (plus they were starting Spring Half Marathon training – so the timing seemed to be right).  I trained most of January to get ready for the first official training session – 5 miles.  Tomorrow we do our last long run – 12 miles (holy crap!!)  🙂

My travel schedule has been pretty constant which means lots of meetings (which drive you to want to snack) and dinners (with appetizers, drinks and sometimes desserts).  I’ll be honest I’ve not been tempted by the snacks at the meetings.  I do have some appetizers, I do partake in the adult beverages (wine has been mine choice – more on that later) and a dessert every once in awhile (the bread pudding while in New Orleans was to die for – but everyone had some of it so I didn’t eat it all – I’m all about sharing!)  And then Lent started – so I decided to do the same thing as last year – give up sweets and chocolate – because I do love them and it is a challenge for me.  I was expecting to see some weight loss the first part of Lent – and what I saw was weight gain / losses – the only thing consistent was no consistency (frustrating).  Then I went to a Black Tie event where I drank wine (remember I told you keep that in mind) – and the next day I was hungover and I blame it on the sugar in the wine.  😉  I had a wedding the following week – where I opted not to drink wine – instead I had vodka / club soda (and no wine for 3 weeks).  And the weight started to move in the right direction.

So drum roll please – I’ve lost 6 lbs since January 30th!!  And I’m down a total of 33 lbs – I’ve kept it off – I’m confident that when I reach my goal (which we haven’t even discussed) – I’ll keep it off because I didn’t put it on overnight and as you can see it isn’t coming off overnight.  Slow and steady wins the race!!  And it has taken me a year to really learn that sugar really is my Achilles Heel (so the latest quote from my nutritionist is – he predicts the Easter Bunny will see his shadow and I should have 6 more weeks of no desserts and chocolate!) (Ha!)

I thought I’d share this inspirational message I received this week (the first part is what I wrote on a card this past fall from during the 8 week program – My Mantras) and the second is a note from my coach – the timing was perfect.

My Mantras

My Mantras

 

And the journey continues…

Half Way There…

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Good morning!  Taking a vacation day today to catch up on some things at home (like cleaning – yuck) since I’ve been traveling so much for work.  I’ll do another post at a later time on my whirlwind travel.

I’d thought I’d take a break from cleaning (which honestly I haven’t done much yet) and give you an update on my Half Marathon Training.  First off I can’t believe I’m halfway through the training.  We are in week 5 – 5 more weeks to go until the BIG DAY – March 29th – The Philly Love Run!

In 5 weeks I’ve accomplished the following:

  • Completed my first 5K – using my Run/Walk cadence (2 mins running / 1:15 walking).  I’ve done many 5Ks – but it has always been walking.  And this 5K gave me a dose of hills – wow!
  • I’ve completed the following Sunday (sometimes into Monday) Runs – 6, 8 and 9 miles – I only missed the 7 miles because I hadn’t joined a gym and it was bitter cold out.  Each week is 1 mile more and each week an achievement for me as my longest run!
  • I’ve spent a small fortune in outdoor running apparel! 🙂

But even more importantly I’ve learned the following about myself:

  • I actually enjoy the 2 – 3 mile run / walks – For those who know me – shocking I know!
  • This whole 13.1 Miles still scares the crap out of me – but that is OK – Challenges should – I’ve been in my comfort zone for a long time (in many aspects of my life).
  • Once I give myself a pep talk and actually start running – I’m good.
  • After my 9 miles this past Sunday – I was wiped out and a bit sore – I listened to my body and took 2 days off.  I so needed it and the rest really helped me do well on my hills on Wednesday.
  • Making myself a priority – committing to getting my training runs and other training in during the week is just as important as the Sunday long runs.
  • I enjoy running by myself.  I know many like running with someone.  I love the solitude.  I spend so much time on the phone with work this is my time to enjoy the scenery and let myself worry about one thing – am I running or walking!
  • I’m sure there will be many more as I continue this journey.

I’ll leave you with this song from my playlist – the timing is perfect when I’m halfway through my miles for the day – gives me that extra push! 🙂