Friday, April 29, 2011

Easter and other blessings

Friday, April 29, 2011 "Easter and Other Blessings"
by Jenny
Our family celebrated a wonderful Easter weekend together, and we hope you did as well. Last Sunday was full of good food and wonderful memory-making moments. But as many of you know, late Sunday night and early into Monday morning, my dad had another episode of flash pulmonary edema (where the fluid fills his lungs).

He was taken by ambulance to the hospital, where they drained almost 13 pounds of fluid from his body. After consultations with both his cardiologist and nephrologist, he was released to go home Tuesday afternoon. There have been many conversations with his specialists about how (and if) another episode can be prevented. Perhaps they'll look into adding a weekend day for dialysis. His medications are also being reviewed.

In the meantime, we are all just grateful for the days he doesn't have to be in a hospital bed. We're grateful for all the time we get to spend together, too. From Easter celebrations to special visits from friends, this has been a week of blessings.

(Dad with his high school buddies, Thom & Chobee, on Thursday)

Speaking of blessings, I must share one story from this week's hospitalization. As my dad was driven away by ambulance, my mom called me to let me know what was going on. During our brief conversation in the wee hours of the morning, she asked me to pray for something very specific... a private hospital room on one particular floor of the hospital. I remember mumbling that I'd pray for whatever she wanted, and I sort of smiled at the request. My parents are getting to be old pros, and I was sure my mom had good reasons for her requests. So, as I laid my head back on the pillow, I fell asleep praying for that solitary room on that specified floor.

Hours later, I awoke with my alarm clock and called to check on what had transpired with Dad throughout the night. After assuring me that he was o.k. and in dialysis (to drain the fluids from his lungs), she eagerly relayed that their room was on the floor we prayed for! I laughed. She reminded me to keep praying, though. After all, the request was for a "private" room as well.

Needless to say, several hours later, I heard from my parents as they settled into their private room with a view overlooking the Gulf of Mexico. And apparently the sunset Monday night was spectacular.

I'm reading a book right now ("Calm My Anxious Heart" by Linda Dillow) and the author recounts, "I had to trust God for what I didn't understand, what didn't make sense to me. I had to walk in the dark with God, holding on to His hand."

There are a lot of things we don't understand about why my dad's suffering the way he is. Or why no treatments have worked to this point to stop the progression of the amyloidosis. We may never get our answers either.

But as we "walk in the dark" with God, He gives us glimpses of light. And whether it's the answer to a specific prayer or a majestic sunset show, those glimpses reveal that we can trust the One we're holding onto.

Friday, April 22, 2011

Cupcakes and Deep Conversations

Friday, April 22nd

This week's blog post is written by Emily (Bob's Daughter). Since we all take turns writing, here is a picture of me holding my new nephew, Riley! I am expecting another boy, Anderson, in just a few short weeks!!!

Riley and Emily

The entire Bugg family would like to thank you again for all of your love and support during these days. While many of you only know my mom and dad, your support is felt throughout our entire family. We are all often left speechless at your generosity to us all. This past weekend, the family gathered at mom and dad's house to celebrate the birthdays of Austin (turning five) and Andrew (turning six). When a family friend (Linda) heard that we were having a birthday party, she volunteered to take care of the cupcakes! We immediately accepted her invitation and on Saturday morning the most beautiful homemade cupcakes arrived at our door. We had trays and trays of these delicious cupcakes!!!


Avery enjoying the cupcakes!

Dad is feeling pretty well this week. He was able to have surgery on Thursday to remove his catheter. His fistula (in his arm) is working so well for dialysis that the doctors were able to remove the catheter from his chest.

Grandpa with the birthday boys (Austin and Andrew)

Grandma and Grandpa with all five of their grandchildren!

My dad specifically asked me to update the blog this week in order to share a story about my son, Austin (age 4).

As Austin and I drove home from school last week, I asked him about his day. We talked briefly about his friends, the playground, the sand in his shoes, and the spring program scheduled for that evening.

After some quiet moments, Austin asked me a question. "Mom." He said, "What does it feel like to die?"

I paused.

We talk openly about life with Austin. We talk openly about death. We pray nightly for his grandpa and his fight against amyloidosis. So, it was not completely out of the blue for Austin to ask me about death. His question was different this time, however. He didn't want to know more about heaven. He was specific.

"What does it feel like to die?"

"I don't know, Austin." I began. "I don't know what it feels like to die... I think that it probably hurts for just a second and then you don't feel any more pain. I believe in heaven, Austin. So, even if death hurts for just a moment, you will never feel pain again and you will be so happy."

Austin sat quietly in the backseat for a long time.

I wondered if I had said too much.

I wondered if I should have eliminated the word pain from my explanation.

I wondered why he was asking me such a specific question.

"Mom, I don't think death is like that." He began slowly.

"I think that death is more like jumping off a diving board...

You are so scared...

and you don't want to do it...

but once it's over, then you are just so happy,

and you realize that you had nothing to be scared of in the first place."

and then we both just rode in silence.

"What do you think, mom?" Austin asked.

"Do you think that's what it feels like to die?"

I don't know sweet boy, but I do know what it feels like to receive the wisdom of God through my four-year-old son...

and I also know that because of this week...
because of Easter...
because we believe that Jesus Christ rose from the dead
death has lost its sting.

From our family to yours, we wish you a wonderful Easter celebrating LIFE!

I Corinthians 15:55 "Where, O death, is your victory? Where, O death, is your sting?"

"Christ the Lord is Risen Today"
written by Charles Wesley (1707-1788)
1. Christ the Lord is risen today, Alleluia!
Earth and heaven in chorus say, Alleluia!
Raise your joys and triumphs high, Alleluia!
Sing, ye heavens, and earth reply, Alleluia!

2. Love's redeeming work is done, Alleluia!
Fought the fight, the battle won, Alleluia!
Death in vain forbids him rise, Alleluia!
Christ has opened paradise, Alleluia!

3. Lives again our glorious King, Alleluia!
Where, O death, is now thy sting? Alleluia!
Once he died our souls to save, Alleluia!
Where's thy victory, boasting grave? Alleluia!

4. Soar we now where Christ has led, Alleluia!
Following our exalted Head, Alleluia!
Made like him, like him we rise, Alleluia!
Ours the cross, the grave, the skies, Alleluia!

5. Hail the Lord of earth and heaven, Alleluia!
Praise to thee by both be given, Alleluia!
Thee we greet triumphant now, Alleluia!
Hail the Resurrection, thou, Alleluia!

6. King of glory, soul of bliss, Alleluia!
Everlasting life is this, Alleluia!
Thee to know, thy power to prove, Alleluia!
Thus to sing, and thus to love, Alleluia!

Friday, April 15, 2011

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 " 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.

Friday, April 8, 2011

Glad to Be Home

Friday, April 8, 2011
by Bob

"Glad to Be Home"

I came home from the hospital on Monday evening April 4 with a diagnosis of congestive heart failure.

My heart cath showed that there are no structural blockages, which unfortunately led my doctors to conclude that the problems with my heart must be caused by amyloidosis. I will not get the official biopsy results until next Tuesday when I meet with my cardiologist. In a small irony we learned that the samples of my heart have been sent to the Mayo Clinic in Rochester, MN. We eagerly await these results since they will determine my prognosis and future treatments. My heart is now only functioning at 35%.

One of the hardest parts of the 9 day hospitalization was not being able to meet my new grandson Riley Robert Bugg who was born on March 28. Tuesday morning, Adam, Sharon and Avery brought Riley over to our house. He was asleep when he came in and they placed him in my arms. He stayed asleep the whole time I held him. Even though his big sister Avery is only 17 months old, I had forgotten how small newborns are. I kept looking and feeling his hands and feet. He is perfect!

It is REALLY good to be out of the hospital and hopefully I will stay out for a little while. Patra and I counted up that over the past 2 years, I have been hospitalized over 100 days in 5 different hospitals.

I have been trying to catch up on my sleep. It is difficult to rest at the hospital because they wake you up at 4 AM for blood, at 5 AM for vital signs and at 6 AM for breakfast (on days I had dialysis). I also had 5 different roommates come and go during my long stay, and most of those came into the room from the ER after midnight.

The doctors have changed a number of my medications. I have learned how to take 5-6 pills at the same time which is not bad for a guy who only took one multivitamin before this "nasty little disease".

When I used to teach Bible Study, there were occasions where it was difficult to understand the teachings of scripture. Sometimes I would comment to my class that when I got to heaven, I would ask Jesus to explain certain scriptures to me. My thoughts in that regard have changed. My questions now seem so trivial.

When I get to heaven, I want to spend the equivalent of the first 5000 years just sitting at the feet of Jesus. I want to hear what He has to say, what He thinks is important and what I need to know. Can you imagine what it will be like to be in the presence of the King of Kings and Lord of Lords? I want to look at Jesus the same way I looked at Riley this week... with joy and anticipation. HE is perfect!!!!

Patra and I continue to be humbled and grateful to those of you who keep up with our journey and support us with your prayers and encouragement. We have had a number of close friends who are recently walking through their own tall weeds.

Thank you for all the blessings that you give to us. It was such a joy to hold Riley and I look forward to holding baby Anderson when he is born in 5 weeks. I do pray that the doctors are wrong and that the biopsy will not show that the amyloidosis has invaded my heart. But regardless of the outcome of the biopsy, I know that You are in control and I pray that You will guide and direct my doctors in my further care and treatment.

Until next Friday, God willing

Friday, April 1, 2011

Riley's Here!!


Riley Robert Bugg came into our world Monday afternoon, March 28. He was 8 lbs 3 oz. and 19 3/4 inches long. He is a very healthy little boy and Avery is a wonderful big sister.

Sharon was a trooper and despite the fact that she had a broken rib did a great job with the delivery.

I haven't yet personally met Riley because he and I started the week in different hospitals on different sides of Tampa Bay. I am at Morton Plant Hospital in Clearwater, and he was born at St. Joseph's Woman's Hospital in Tampa.

Patra was sitting next to me when she got the call to come quickly for the birth and I'm sure she broke some speed limits getting across the bridge. She made it just in time and tells me that there is nothing more wonderful than seeing a baby take it's first breath.

Last Sunday morning Patra and I had a repeat of last week's episode where I developed shortness of breath at 5 am. I couldn't breath and heard the gurgling sound in my chest. Patra quickly called 911. After arriving at the hospital, the chest X ray confirmed fluid on the lungs (pulmonary edema) and I was again taken to the hospital's dialysis unit to remove the fluid.

"Congestive heart failure"
"flash pulmonary edema"
"ventricular fibrillation"

These are just a few of the terms that have been involved in the discussions with my cardiologist this week. Unfortunately my heart has produced some "interesting" findings on the heart monitor. (One does NOT want to be called interesting when it comes to health issues).

A decision was made that April 1 (no April fools jokes, please) I will have dialysis followed by a heart catheterization and heart biopsy. Basically the doctors are trying to determine the cause of the heart issues, whether it is the amyloidosis having spread to my heart or whether it is a structural or blockage problem.

Depending on these test results it may be necessary for a pace maker or other intervention.

These have been difficult discussions with my doctors. Patra and I have shared some tears and fears, but I have been forced to go back to the basics - keeping my focus on the important things that God wants to teach me and still learning to live one day at a time.

I would certainly appreciate your prayers today as it will be a long day and potentially very significant in determining my prognosis.

Dear God,
I confess that I am scared. Patra and I are both scared. I pray that the heart cath will not show that the amyloidosis has gone into my heart. I also ask you for strength that I will be able to go through dialysis, heart cath and heart biopsy.

We celebrate and rejoice over the birth of Riley and are thankful that Adam and Sharon are such good parents. We ask you to continue to bless their family. Be with Emily, James and Austin as they prepare for the birth of Anderson in 6 weeks.

Help me to focus on YOU and to live my life day by day seeking only to do your will

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