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.