Mark Watson

Amyloidosis

Learning Perfection though Weakness

by on Aug.21, 2017, under Amyloidosis


Next Monday will mark my 37th chemo treatment. . . but who’s counting, right?  It’s been a little over 2 years since I started treatment for this wretched disease and here are 5 things I’ve learned.

1.  It’s a marathon, not a sprint.  Before this disease I used to run Marathons.  While all that training may have been good preparation, it pales in comparison to this.  In marathon training, there are “off days” or “rest days” but with this disease it’s 24/7.

2.  I need to rely on others.  This is something I’m not very good at and hate every second of it.  I would much prefer to be the giver and not the receiver.  I think this has more to do with loss of control than anything.  I was in the Board room a couple of weeks ago and bent down to increase the volume on our audio system when I realized I couldn’t get back up.  Luckily, one of my colleagues recognized my predicament and nonchalantly gave me a boost from behind so I didn’t embarrass myself too much.

3.  I must learn to make a “new normal” life.  I’ve heard this phrase from people who have long-term debilitating illness since I started this journey.  I now get it.  While life may never return to what I once had, I need to find ways of making a new way of life, a new normal, for both me and my family.  For me that means fewer and different activities.  I was joking with a friend of mine who turned 50 last month.  He is a beast of a fitness guy but age does change us.  I texted him and asked if it were true that he was now the big 5-0.  He responded, “Yes.  Ugh, I’m deteriorating faster than I can lower my standards.”  He was half joking of course but I get it.

4.  Life has no guarantees.  I find myself thinking of a lot of conditional “what ifs” but I’m learning to stop.  I can’t control the “what ifs” or what the next procedure brings.  I must try and be content in the moment.

5.  There can be beauty in difficulty.  I was hiking the other day (I use that term generously given my lack of ability to walk very far) and saw the twisted vine in the above picture.  After the hike, I reflected on the photo and realized the difficulty this vine faced to be able to grow this way.  I’m sure the vine would have preferred a more straight and easier path.  Had that happened, it would have been just a vine, instead it was a beautiful work of art.

The apostle Paul asked Jesus 3 times that his affliction be removed.  But Jesus responded, “My grace is sufficient for you, for My strength is made perfect in weakness.”  II Corinthians 12:8-10.  Maybe I can learn perfection in weakness. 

 

 

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Health Update

by on Aug.09, 2017, under Amyloidosis


This is a screen shot of my heart rate post ablation. It has settled into a nice 63 beats per minute. Before the ablation it was all over the place. Some high, some low, and some irregular. This is a reading from my Fitbit and as some snooty medical people remind me, “that is not a medical device!”  It may not be but it definitely shows a good trend.

I return to the electrophysiologist tomorrow and hope he will confirm what I already feel and see – no more afib. He has already said he won’t declare victory for 90 days, but this gives me hope.  They currently have me on meds that help regulate the heart rate but have reduced the dosage significantly.  The meds cause some discomfort but are well worth the results if I need to continue long term.

I had chemo on Monday and got a good report from my exam.  All seems to be going well and everything is still stable.  They were pleased with the heart rate and think everything is going as planned.

Thanks for all your thoughts and prayers.  Let’s keep this good trend going!

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July 17, 2017 Treatment

by on Jul.20, 2017, under Amyloidosis

It’s been a busy couple of weeks around the Watson house.  Last week on Tuesday the 11th, I had a cardiac ablation (again).  It was an overnight stay due to risk of bleeding out.  I had to lay still for 12 hours after the procedure and as you can imagine, I’ve never been still that long in my life.  So far so good on clearing out the afib.  I’ve had a couple of small episodes, which is normal right after the procedure. I’m optimistic.

I rested up a couple of days and then traveled to Arkansas to speak at the funeral of Ethan Busby, a man that may have influenced my life as much as my father.  It was a quick down on Saturday and back on Sunday.  Stacie drove so I could rest as much as possible.

On Monday the 17th, I returned to Mayo Clinic for my regularly scheduled infusion.  All went well with that process except I might have overdone it a little with all the heart procedure and travel.  I did fine until Tuesday at about noon at  which point I crashed.  That normally happens but usually not until 4-5 days after treatment.

Even though it has been a rough couple of weeks, I am thankful.  It appears all is going as well as expected but only time will tell.  Thanks to all of you for your prayers!

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Health Update: Here’s What I Know

by on Jun.26, 2017, under Amyloidosis


It was a good day.  No unexpected issues found during my physical and today my heart is beating correctly.  It seems to have a mind of its own, beating correctly for a few days and then poof!  I wake up in flutter.  This phenomenon usually happens about 2:30 to 3:00 in the morning.  No clue why.

I am scheduled for the cardiac ablation on July 11th in an effort to rid my heart of the flutter.  I am so ready to give this another try.

Please keep me in your thoughts and prayer as the next 3 weeks crawl by.

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It’s All Heart

by on Jun.12, 2017, under Amyloidosis

A new update on the Afib. I returned to Prairie Heart today to see about correcting my atrial flutter. They were able to witness it firsthand via the pacemaker reading. It’s a mystery why some days are perfect and other days are well. . . not so perfect. They determined that they will perform another cardiac ablation on July 11th. This is not without risk but given all my other issues, this seems to be the best of a bad thing. This particular type is a little more serious and will require an overnight stay. They were able to work this around my chemo schedule and everything should be good to go. So one more month of this before relief is in sight.

Prayers for a safe procedure and quick recovery are appreciated.

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June 5, 2017 Treatment

by on Jun.07, 2017, under Amyloidosis

Monday’s treatment was uneventful.  That’s the good news.  We arrived at Mayo on Sunday evening only to realize that I had left my medicine at home.  I told the PA first thing when I arrived for my appointment that all was well except my memory!  She told me I wasn’t the first one to forget something like that and probably wouldn’t be the last.  She promptly called the pharmacy and had me taken care of in time for chemo.

The heart has been pretty stable the last couple of weeks with very little flutter or afib.  I go back to the cardiologist on June 12th to see if more work is needed.  I’m hoping this either clears up on its own or he can do another ablation.  Either way, I would like for it to be beating correctly.  The days I have the flutter are exhausting.

Next treatment is June 26th.  Please pray that the next 21 days continue to go well!

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May 15, 2017 Treatment

by on May.17, 2017, under Amyloidosis


Yesterday’s treatment was completed with a lot less drama than the previous treatment. I still have atrial flutter and an irregular heartbeat but hopefully with some improvement.  I am able to work, do light exercise and day to day living with few issues.  I do have some discomfort, but I can live with it for now.

I have another treatment on June 5th and then a week later with my cardiac electrophysiolgist.  If the flutter is not cleared up by then, he may want to do another ablation.  While I am not looking forward to yet another procedure, it is just another step down this amyloidosis road.  It has to be traveled.  The constant flutter in my chest wears on me by the end of the day and there is concern that it could get worse if not dealt with.

While I was getting treatment, I received a text from a pastor friend, Josh Patrick.  He asked me how I was feeling and how could he pray for me.  What makes that text so special is that Josh is dealing with colon/liver cancer and yet still serves others at Harpeth Christian Church in Nashville, Tennessee.

One of my favorite things that Josh posts on his Facebook page is asking others to pray that God be glorified through his cancer.  While I’m not sure my faith is that strong, I hope to be able to do the same with amyloidosis.  Thanks Josh for your influence!

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Mayo Test Results April 30, 2017

by on Apr.30, 2017, under Amyloidosis

I returned from Mayo Wednesday evening after 3 days of treatment and tests.  The most troublesome of the results was my heart.  I was in atrial flutter most of the week which got me a lot of attention from the medical team.  While their hope is they can still control the heart issues with medication or another possible ablation, the bottom line is the disease is negatively impacting my heart.  To what degree, only time will tell.

The other results were positive.  No lung, kidney, liver, or other damage.  A known side-effect of the treatment is vitamin A depletion, so my dosage was increased to 10,000 iu for the time being.

I had so many plans for this point in my life.  Some days I get so frustrated that my life is no where near my plans.  That’s a tough thing for a Type A personality.  In my devotional book by Tony Dungy, Uncommon Life Daily Challenges was this was the daily devotion on my return:

I Cor. 1:25, 27 25 For the foolishness of God is wiser than men, and the weakness of God is stronger than men.  27 But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; ESV

While it is almost impossible for me not to make plans, I have to trust God’s plan is far more superior.  In the meantime I’ll keep planning and adapting to the path God puts me on.

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April 24th Treatment and Tests

by on Apr.22, 2017, under Amyloidosis

I will spend three days at Mayo Clinic, Monday – Wednesday. This is my six month follow-up for a potential liver transplant. I’m already at the top of the recipient list but am in a “hold” status. Since I have been doing so well, we have elected to forgo a transplant for now. It is unlikely I will ever agree to a transplant given the success rate for my particular genetic mutation. Typically it only gives the recipient another seven years of living and not a good seven years. So if it comes to that, I will probably just live out whatever days are left.

Besides treatment the next three days, they will do tests to verify if there is any other organ involvement or damage. Test include, kidneys, lungs, and heart. Amyloidosis, left untreated, typically causes extensive damage to major organs by creating “sludge” and making them inoperable. So far in my case it has been minimal. I would appreciate your thoughts and prayers for my treatment and results.

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April 3, 2017 Treatment

by on Apr.03, 2017, under Amyloidosis

Today as I am receiving my treatment, I thought I would take this opportunity to write an update.

Today I write from a hospital bed, making typing a little more difficult. I’m usually in a chemo chair but for some reason or the other, I got a bed. I will do my best to keep the mistakes to a minimal.

The protocol for this treatment is to first check in with the doctor or P.A. in hematology, then once approved it is off to the other wing on the 10th floor of Mayo for treatment.

Today’s physical went well. It appears my heart is staying in sinus rhythm with no issues. I do get a few PV’s (Premature Ventricular Contractions) occasionally, but nothing major. It is fairly common, even among healthy people. You may have PV’s and not even realize it. It is that feeling you get when you feel like your heart has skipped a beat or added a beat. It can happen a lot if you are startled or excited in some way.

The talk today from the health care team was positive and upbeat. We talked in terms of success and how we can cope with this disease without a transplant. The research team still believes this drug has the potential to eliminate the need to ever have a liver transplant or any other organ for that matter. Their goal is to make this a disease something that you die with and not from. Hmm. . . That’s my goal too!

Transplant with my mutation is really not an option. People with previous transplants with Ser97Ty usually only live around 7 years post-transplant – and not a good 7 years I might add. So today we keep going down this unknown path and hope for the best.

I have had a few pity parties the last 21 days, I am ashamed to say. While all of you are out there living up your glorious Facebook lives, I was just wondering if I was going to make it to my next birthday. Ironic how things can change. Oh this is my problem – not yours. It’s stinking thinking. A lot of us with debilitating or terminal illnesses get it now and then. The trick is not to stay there. But as God can only do, I got “preached” at yesterday in a message from our Pastor. If you have 25 minutes, I promise it will be worth your time.

My God, Why Have You Forsaken Me from West Side Christian Church on Vimeo.

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