Heart Biopsy Results

Heart Biopsy Results
Friday, April 15, 2011

From Bob:

I woke up Tuesday morning with a scripture verse in mind...

"This is the day that the Lord hath made, I will rejoice and be glad in it".

Knowing that my appointment with the cardiologist to discuss my heart biopsy results was later that morning, I was excited about the hopeful possibilities for this day that God had made. My hopes were quickly dashed by the doctor... "Mr Bugg, the biopsy shows that the amyloidosis has infiltrated your heart." I do not want to be the voice of doom and gloom, but this is certainly not good news.

Our appointment lasted approximately one hour and although I was not really surprised (my doctors had been unanimous that this would probably be the result of the biopsy), it was a difficult conversation since we had to deal with end of life issues. Patra cried and wanted to be assured that I wouldn't hurt.

My understanding is that because of the amyloidosis, my heart has significant loss of function. In addition, my heart tissue is getting stiff. The flexibility has been lost, not with the heart squeezing, but with the inability of the heart to properly relax. Since the amyloidosis is a progressive disease, it is expected that the heart function will continue to deteriorate.

The loss of the heart function results in the heart being unable to pump the fluids out of my lungs which has resulted in the episodes of pulmonary edema and the recent hospitalizations. Combined with the loss of heart function, during my last hospitalization the heart monitor demonstrated that my heart would also go into ventricular tachycardia. Basically this means that the rhythm of my heart has been disturbed. The fluid in the lungs results in severe shortness of breath and, as I had mentioned in and earlier post, not being able to catch my breath is a scary proposition. The ventricular tachycardia is also scary because the doctors has indicated that if it occurs and last for a significant period of time, it will kill me.

Unfortunately there are not many options for dealing with the problems I have. We have already tried the stem cell transplant and chemotherapy to deal with the amyloidosis, but those attempts were unsuccessful. There are apparently no other recognized or experimental treatments to offer. Because of the disease and the fact that I am on dialysis (and as well as other factors), I am not a candidate for a heart or kidney transplant.

In dealing with the ventricular tachycardia there is a possibility that I could be a candidate for a defibrillator, however the doctor did not seem particularly eager for me to undergo that surgery. As he explained with dialysis and catheters and fistulas, any additional surgeries would raise the risk of infection and problems. In addition, he explained that the defibrillator is very painful when it is activated and because of the progressive nature of the amyloidosis, he would expect that there would soon be a time when I would need to be shocked repeatedly. He said one of his patients said the shock felt like being kicked in the chest by a mule.

I am taking new medications to control the arrhythmia and we hope that these drugs will work for a period of time. The medications themselves have a number of side effects that damage the liver and other organs. It is important that we attempt to wean me from any larger dosage than is necessary to control my heart. It does appear that the recent changes to my medications have succeeded in lowering my blood pressure. I don't know for sure if that is the reason that I have felt better for the last couple of days, but I am certainly grateful for some good days.

After we got home from the cardiologist's office I still could not get the verse out of my head, and eventually I became convinced that that was the verse for me that day.

"This is the day that the Lord has made, I will rejoice and be glad in it."

From Patra:

To all my precious friends who have expressed loving concern for me... Thank you.


I was pretty weepy on Tuesday, but a card arrived in the mail that day from a dear friend. It read:

"I write to encourage you to seize the opportunities the Lord offers. Make the most of the: time to laugh,
the time to dance, the time to embrace, the time to gain, the time to keep, the time to speak, the time to love, the time of peace..." (words from the Bible in Ecclesiastes 3).

She told me to treasure these times, having no idea when she wrote that card (several days before our Tuesday appointment), that it would arrive the very moment I needed it. It was like a direct word from God at that moment. As Bob would say, "God is good... all the time".

I don't want to waste a moment of the time Bob and I have left together being weepy, for there WILL be a time to weep, but I choose for it not to be today. When I feel like I'm being pulled into depression, I repeat to myself the wise, yet simple words of Oswald Chambers... "trust God and do the next thing." Sometimes not having to think too far into the future is the perfect medicine for today. The "next thing" might be "...now open the car door." (seriously!)

In the midst of everything that is hard, God has given us an incredible blessing... He has allowed Bob to feel good. Bob is less foggy minded, more awake, in no pain, and even sits at the dinner table to eat again. He has been practicing his walking with a walker and even walked into the dialysis center on Wednesday to the applause of other patients and staff.


We still laugh a lot, and being around the grandchildren provides constant entertainment. Megan (18 months) has decided to call grandpa "Bob Bugg", and shouts loudly when she enters the house "BA BUG, BA BUG".
We will all gather to celebrate the boys' birthdays this weekend. Andrew will soon be 6 and Austin will be 5. Little Avery will charm us with her antics and I will snuggle our newborn grandson Riley... still so fresh from God.

"This IS the day the Lord has made, I (too) will rejoice and be glad in it."


Father, We are truly thankful for the days you have given to us. Some days are easier than other days, but we will rejoice and be grateful for every day. We thank you for the support of our friends and family and we know that their prayers and encouragement have enabled us to walk through the "tall weeds". We thank you for Jesus and pray that HE would be glorified every day.

Comments

Anonymous said…
Dear Bob & Patra: We were crying right along with you as soon as we heard the news as well. You have been thru so much already but your light shines brighter than ever. Your heart is spiritually strong even though the flesh is weak. We are so glad we are part of your circle of prayer partners and our hearts are heavy that the news was not better. We are glad you are feeling stronger and that you can enjoy your family and, yes, the grandchildren make your life so complete. We continue to pray that miracles occur in both your lives.

We love you both dearly.

Ted & Carol W
Anonymous said…
Good Morning, Bob and Patra,

We too are disappointed with the latest news. Our hearts hurt right along with yours.

You continue to glorify God in every single thing that happens; that is what you have always done.

Living in the moment is what we should all do every day; however, we fail in that endeavor so often.
None of us is promised of anything, but this moment right now.

Enjoy those children this weekend; enjoy every minute, and love lots.

Bob, we are still praying for the miracles along the way. Remember, we continue to pray and praise on your behalf. We are stronger because of our friendship and times with you and Patra. We look for more of those times when we return in May.

We love you both.
Lex and Linda
I wish I was not crying so hard right now. I always want to say the right thing, the encouraging thing, the PERFECT thing. But I will just say the REAL thing that is on my heart. Mr Bugg...you, through this blog, have been one of the most inspirational people I have ever encountered. I want you to know that how you live and how you have dealt with this nasty disease has changed me as a Christian. You never sugar coat anything yet you are delightfully funny and honest in all that you have faced. You have had very low moments and in the face of them have been transparent yet still give God all the glory He is due. And as I sit here and type, the words blurring on the screen, my children are hugging me in comfort. And all morning they have asked me to play and I keep saying...not right now. Well I have the time...right now. And I love that you both are stopping to enjoy your family, your precious grandchildren, and taking shelter under the wing of The Most High. I love you both...truly. I am still praying. But I do thank God for a ministry that neither you nor any of us would have asked for...but God has established and shown His glory through. And He has also shown a family, sold out for Christ, and faithful beyond circumstances. Love to you both!

Jessica
Pat Murphy Findlan said…
Your steadfast trust in the Lord's faithfulness and continuing proclamation of His goodness throughout your journey amazes me.
Anonymous said…
Dear Bob,

Please know that you and your family continue to remain in my heart and in my prayers. If ever someone deserved a miracle, it is you....I pray a miracle is delivered to you and your family by way of a full recovery!!!! Until then, I will continue to pray for your comfort....

Lauren Calta
Amber said…
Oh my word. Mr Bugg, I just love you and Mrs. Bugg and I am so sad to hear this. Emily said it was likely, but it is crushing to see it in black and white. I am praying for you all as often as God brings you to my mind...which is often! None of us is assured tomorrow so we could all use a little more "this is the day the Lord has made and I will rejoice and be glad" in our lives!!!!
Anonymous said…
Thank you for sharing your walk with us, Bob and Patra. God be with you, wrap you in His loving arms, and lift your hearts at each precious moment with your family.
Peace,
Sue and Bob
During times like this I always think of this story:

http://truthspeaker.wordpress.com/2011/02/03/david-and-svea-flood/

The details and the extent of God's plans for our lives are rarely revealed to us during times like this but he had given you a directive that is quite clear. "This is the day that the Lord has made I will rejoice and be glad in it." In the same Psalm is the encouragement to go along with this verse..."It is better to take refuge in the LORD than to trust in humans.It is better to take refuge in the LORD than to trust in princes." And remember you have no idea...even if you think you do...who is being won to Jesus and eternal life by your journey in this life. And that is the bottom line.
Anonymous said…
Bob and Patra, I second all the comments posted as I sit here and cry with you. Remember, even Jesus wept. We know that none of this has taken Jesus by surprise as it has us. We so prayed for a miracle of healing and one day you will be healed completely. You, Patra and your precious children and their families have all blessed us through your blog. I have sent some copies to mom so she could keep up and I've read her many as well.
Sometimes when I feel like my tall weeds are choking me I then read your blog and listen to my other friends lives and know that my tall weeds aren't really that tall at all.
We will keep praying for you, Patra and the family as you continue to walk through this. Just know we all love you and will continue to lift you to our most capable Father daily.
To God be the glory!
Carol Womack Cahill
Anonymous said…
We continue to pray for you guys. You are an encouragement to all of us who know you and are able to read about your weekly updates. Congrats on the newest addition. Love the pictures that Adam posted on Facebook.

If there is anything the Mattingly clan can do to support you guys, please let us know.

Tyler & Kari.....and the truckload of kids
Mark the mailman said…
Hi Bob & Patra,
This is Mark, your mailman at the office. I've been missing seeing your family for a long time. Hope you're doing better. My prayers have always been with you Bob.
I've been out of work for 3 weeks with spine problems. I'll be back Wednesday. Hope to see you soon.

Mark Mattie
Marc Crumpton said…
Bob:
I think of you and your family almost daily many times. I discuss you in the legal community and share your updates and blog with many. You are in so many hearts and prayers in the profession. I want you to know that you remain my most favorite and best mediator in the legal community that I have ever worked with. I, too, am praying for God's miracles to shower you and your family this Easter weekend in Jesus' Holy name. May his Light shine upon you brightly this weekend. I pray that you are feeling better as you write your next entry. Hang tough, brother, you are an awesome person and I miss working with you. God bless you all!