Friday, November 26, 2010
Happy Thanksgiving from MinneSNOWta!
We were released from the hospital yesterday. I will return as an outpatient for dialysis and physical and occupational therapy. While this was not the plan of my treating doctors, the insurance company did not approve the intensive physical therapy program that my doctors recommended.
The doctors (who had to be extremely frustrated) kept the focus on my care and were willing to adapt to the situation day by day. They assured me that they would deal with what they were presented with. With their support and the assurance of scripture that "all things work together for good to those who love the Lord, who are called, according to His purpose," I am confident that the "new plan" will work well in getting me strong for the trip home in about a week. It is interesting that some really bright, wonderfully trained physicians and surgeons, at one of our most prestigious medical facilities, would have their considered opinion as to my medical treatment nullified by an insurance company account representative who has never seen me, examined me or probably spent any time in medical school.
On Monday, November 15, I had my surgery. I can't remember exactly what it was called, but the procedure involved a bilateral laparoscopic ligation of the kidneys, hand-assisted. Both of my kidneys were "shut down" and now I will be on dialysis for the rest of my life (unless medical science makes some really significant advances.) The important point to me right now in my recovery is that little phrase - "hand-assisted." The surgeon told me before the surgery that because of significant fluid retention, he would probably need to make an incision for hand assistance. After the surgery, when we looked at my belly, there were the typical "holes" where the laparoscope would have been inserted. But what shocked me was the size of the incision for the "hand-assisted" portion of the surgery. Every time the doctor came to see me in follow up, I looked at his hands - he has big man hands! Patra says it looks like I had a C-section.
It is taking longer than I expected to recover. These have been some of the darkest days of the journey so far. You wonder if you will ever feel "normal" again. Pain medication dilutes the discomfort/pain but it is always a balance where too much "assistance" leaves you "foggy". We never expected to be here this long - 18 days so far. I was in the hospital 12 days. It is cold - this was the coldest Thanksgiving in Rochester in 25 years. We miss the kids and grandkids more than we could have imagined. They were great about calling Patra several times on Thanksgiving to get her opinions about cooking the Turkey meal.That helped to make her feel a part of the festivities!
Patra and I had our Thanksgiving meal in my hospital room. As we prayed for our meal, we were both overcome with emotion thinking about the family so far away. Please understand that it has not been all tears. We are so thankful for the blessings God has poured out on us. We honestly believe that we now have an opportunity for a longer and productive life.
Several times I have just cried out to God - calling His name and asking Him to comfort me, to cover me with His presence - yes, to take away the pain and discomfort.
I have layed in bed listening to my I-pod and God has used the musicians and their words to bring comfort and peace to me. Listen to these words from Mandisa - it's as if they were written just for me!
Mandisa "He is with You"
He is with you
When you're in the ICU
and the doctors don't know what to do
and it scares you to the core
He is with you!
Patra has been there every step of the way, sleeping on a cot in my hospital room so that she could help me through the night. As one of my nurses told me - "I hope you are getting her a great Christmas present."
The Mayo Clinic is quite a place. It employs more than 30,000 people. I have met and been treated by some wonderfully dedicated, talented people. I want to do more reading about the Mayo brothers (Will and Charles) and the work that has been and is being done here.
I have a tube coming out of my stomach for draining fluid. It looks like a hand grenade but is actually a "Jackson-Pratt" drainage bulb. As my nurse was changing and draining and cleaning my "Jackson-Pratt" she mentioned that she had gone to Mayo High School with the daughter of either Dr. Jackson or Dr. Pratt. History comes alive!
As you pray for us this week, the schedule is to undergo dialysis Friday, then Monday, Wednesday and Friday next week. The dialysis takes about 4 - 4 1/2 hours and I am very fatigued when we are finished.
I will meet with the outpatient physical therapist Friday and set a schedule for therapy next week.
Next Wednesday one of the surgeons from the transplant team will assess me and make a decision as to whether it is OK to undergo a procedure to remove the "Jackson-Pratt" drainage bulb. They would like to have that removed before we go home.
Until next Friday. God willing.
Friday, November 19, 2010
At the end of last week's post, my dad left off with the knowledge that he would be having surgery (but didn't know when) and the details of what would be done during his operation. Here's the latest since last Friday:
On Saturday, Dad passed out twice - once in the hotel room and again in the infusion center at the hospital. He was admitted to the hospital immediately so that the doctors and nurses had all the time they could get to increase his strength in preparation for the surgery.
On Monday, he had surgery to shut down his failing kidneys. This was done by clamping off the kidneys... the actual organs themselves were not removed. As a huge praise(!), Dad's vital signs were good throughout the procedure - thank you for your prayers for him!! He spent longer than expected in the recovery room because of extreme pain. It's been hard in the days following surgery to manage his pain levels and keep him somewhat comfortable.
The day after surgery, he was able to walk with assistance, which also means he was able to stand up without passing out!
On Wednesday, he began his first round (?) of dialysis. He is scheduled to receive dialysis every other day while at Mayo. When he returns home, I understand that he'll be going for dialysis 3 times/week. Many people have asked if he'll be able to do his dialysis treatments at home, but from what my mom explained, the type of surgery he had means that he is not a candidate for those "at-home" machines.
Wednesday afternoon, my parents learned that he would be in Minnesota a bit longer than originally anticipated. They need to keep him there until he can pass certain milestones in walking, eating, etc.
Thursday was a rough day pain-wise. After a conversation with the doctors, my parents were informed that after being discharged from the hospital (which may be Monday?), my dad will be transferred to a rehab facility for a bit. Because he's been feeling so bad post-surgery, he is not eating well (if at all) and hasn't been able to practice walking.
So, it looks like they'll be up North for a little while longer. And I think my parents are content with that plan! Mom has been spending the night at the hospital with him, and she told me today that the staff is very good about limiting those middle-of-the-night interruptions.
And Dad's allowed, on his new dialysis diet, to have lots of protein and mashed potatoes. The makings of a great Thanksgiving dinner, if you ask me!
Speaking of giving thanks, we are so very grateful for you and your continued prayers. You are an encouragement and a gift to our entire family. We are hopeful that the next few days will bring about some news of gained strength and diminished pain. We are looking forward to sharing again soon!
Friday, November 12, 2010
I am actually writing this blog note on Thursday night. It has been quite a week and a very long day.
Sunday's flight went well and we know that was because so many people were praying for us. Fortunately I made it through security. A supervisor had to be consulted and I was afraid we would need to get permission from Washington to let me through. My answers and devices were not made for the new screening procedures. Not only do I have a port, but it is accessed which means I have a large needle sticking into my chest. (Silly me, I had never even thought about using my needle as a weapon!) The young man who did my "pat down" was very nice but I told him that he was not allowed to pull on any cords he felt anywhere on my body.
Once I got in my seat I didn't move - thanks in part to wonderful medications! One of the "most mellow" flights I have ever taken. As we made our way to Minnesota, I thought of the people and Sunday school classes that were praying for me even as we were in the air. We could not have made it without Adam, and Patra and I are so grateful he came with us.
The weather in Minnesota this week has been unseasonably warm - near record highs almost everyday this week. It was the talk of the people we met, the TV news shows, the newspapers, etc. I wanted to say "you're welcome" to everyone who talked to us about the beautiful weather because again, I know there were a lot of people (besides ME) that have been praying for good weather. Unfortunately, I should have asked you to pray for the weather to stay warm a little longer because it looks like we will be here a while and today's temperatures were 15 degrees colder than yesterday. Snow flurries are in the forecast for this weekend.
The Mayo Clinic is a phenomenal place. Very large, very beautiful, with its own art work, museum of Mayo history, etc.
Our hotel is right across the street from the Mayo Clinic and through an underground walk way, you never have to go outside. The "subway level" has its own shopping areas, food courts, etc.
Monday morning I met with the hematologist/oncologist. He went through my medical records and asked many questions. He explained the physiology of what is happening with this "nasty little disease." Patra and I both feared he was going to tell us there is nothing that can be done, go home to Florida and try to stay comfortable.
But instead he told us that my present situation was intolerable, my quality of life was poor and I shouldn't continue to live like this. He saw two options, one of which he would not recommend and he did not think it would work. (Didn't sound like such a good option.) The other option he said is "rare and radical." (I could hardly wait to hear that option.)
I will try to explain what they are going to try and accomplish. I don't have all the answers yet, things are changing rapidly. The doctor suggested I have surgery to "oblate" my kidneys. That means they will "shut down" my kidneys. (I can't have a kidney transplant because we can't get the disease in remission and it would do the same thing to any new kidneys.) Because of the disease, my kidneys are "throwing off" all my protein. That is causing most of my physical problems. If the kidneys are not functioning, then theoretically I won't lose protein. I will need to have dialysis for the rest of my life, but hopefully I will have a longer life and most importantly, my quality of life should improve significantly.
He referred me for testing and a consultation with a Mayo nephrologist (kidney doctor.)
Monday night in the hotel room I passed out. It was a bad one. Tuesday morning I was very sick. Mayo got me into the infusion center for treatment. It confirmed for Patra and me the need to proceed with even a "rare and radical" option. Tuesday afternoon we met with the nephrologist. We were somewhat surprised because he didn't share the same opinions as the hematologist/oncologist. He recognized the need for shutting down the kidneys but his approach was more conservative than the "rare and radical" but also "irreversible" plan. He said he wanted to talk personally with the first doctor and to his surgical team.
Today we met first with the hematologist. My test results had come back and my numbers are most impressive (and not a good impressive.) He referred to my tests results as "profound," "dramatic," "dangerous." We agreed that I really had no other options than to try the surgical route, and there was no reason for delay. Then it was back to the nephrologist. Apparently, his review of my test results and consultations with my doctor and the surgeons convinced him of the need to take the "rare and radical" approach.
He began making phone calls to set up the surgery. At one point it looked like I might have the surgery Friday. As the day ended, I learned that I will have a consultation with the surgeon Friday and also meet with the nutritionist to talk about my new diet on dialysis. And that really is about all I know as I write. From talking to the doctors today, it looks like we may be here a couple of more weeks. We want to be home for the Turkey Trot! That nutritionist better not have anything bad to say about Thanksgiving dinner!
We have so much to be thankful for. We now have hope of a better quality of life and a longer life.
As we left the doctor's office, we had to proceed quickly to the infusion center for treatment. In the main lobby of the Mayo building, a small ensemble was singing before a rather large crowd of patients and family who were watching and singing along. Patra had to manage the wheelchair through the crowd. They were singing "How Great Thou Art." When we got to the other side of the crowd, the singing finished and there was much applause. Patra and I both had tears in our eyes.
We went into the building where the infusion center is located and someone in that lobby was playing "I'd rather have Jesus than anything" on the grand piano. The tears were now starting to flow again. How good is God that we would leave two very serious discussions and immediately have musicians share two of my favorite songs as we passed through - what incredible timing by God.
We arrived just in time at the infusion center, checked in, and sat in the waiting area. Patra's phone rang. Adam called to tell us that he and Sharon are having a boy! Patra and I both started to cry. She couldn't even talk on the phone for several minutes. I'm sure the other patients wondered what was wrong with us. Wrong - no - it's just that God's presence is so overwhelming at times.
I'm pleased to report that they also have warm blankets in Minnesota. When the nurse put my blanket on today, I couldn't help but think how I am blanketed with the incredible love of God.
Sorry I have gone on so long. We love you all and appreciate you so much. Again, we solicit your prayers - they mean so much.
May God bless you!
"Father, thank you for being so real to us. Thank you for wonderful doctors in Florida and Minnesota who have cared for us. Thank you for giving us hope for a better quality of life and for the possibility of a longer life. If it is your will, I would love to meet the new baby Bugg. May he grow up to be a man of faith. As I go to sleep tonight, I want to sing "How Great Thou Art." I would rather have Jesus than anything this world can offer."
Until next Friday. God willing.
Friday, November 5, 2010
It is November! Thanksgiving may be my favorite holiday. I love the Thanksgiving meal that Patra prepares for lunch and then later that night, we have "squished" turkey sandwiches with worchestershire sauce. Can you tell I'm ready? It may be different this year because I am having a significant problem with my appetite -I have no appetite. That is really weird for me. I think I want something and when it touches my mouth, it turns to metal and that is the end of eating. The doctors have given me an "appetite enhancer" (hormone) but so far not a lot of success.
What makes the situation more interesting is that I am also retaining fluid so my weight is increasing rapidly. Wednesday I weighed 190 - it seems like only days ago, I wrote that I was down to 167. They have started me back on a diuretic to get rid of some of the fluid.
I've decided to be thankful all of November. Every day I try to think of some way God has blessed me over the years and then spend that day thanking Him for the specific way He has worked.
We really do solicit your prayers this next week as Patra, Adam and I travel to Minnesota for my consultation at the Mayo Clinic. We had a real answer to prayer this week and a confirmation that we are on the right path in going to Minnesota. When we got the appointment, I learned that the Mayo Clinic was "out of network" as far as my insurance plan was concerned. This meant that we would be personally responsible for all of the costs and expenses associated with my medical care and tests. My case manager at Moffitt worked with us as we tried everything we could think of to get coverage. Nothing worked. On Tuesday (November 2) of this week, I decided I would make my last pitch and I confess, I worked myself into quite a frenzied state as I prepared to make my case. A nice young man ("Jack") eventually answered (after I spent 20 minutes pushing every conceivable number on my phone to get a human being) and asked if he could help me. I started in.
After a short while, Jack interrupted me. "Mr. Bugg, I think you will be pleased to know that as of November 1, the Mayo Clinic is a network provider for your insurance plan." "Pleased?" Are you kidding me? I wanted to kiss Jack. I'm glad my conversation with him was recorded "for quality control purposes." I told Jack to immediately go and give himself a raise. While we were prepared to do "whatever it takes" to get this consultation, this certainly was good news. While we had made efforts to move up the appointment at Mayo when it initially seemed "far off," this important insurance issue was resolved 1 week before my appointment.
Sunday night was "Trunk or Treat" at Jenny and David's church. I had planned for weeks to attend. I went in the wheelchair and really enjoyed seeing my grandkids and also visiting with friends from many years ago. Jenny and David had a "booth/car trunk" handing out candy. Jenny's theme was from the movie "Up." She and Andrew and Megan dressed in character.
Dear God, thank you for everything you do and have done for me over the years. Give me an attitude of gratitude this entire month. Thank you for friends and family who are standing by me and who are praying for me. I pray that you would bless their lives. Father, give us a safe trip to Minnesota. Be with the doctors that I will see. May their knowledge and years of experience enable them to devise a plan of attack to counter this "nasty little disease." May your will be done. Give me strength to do whatever it is you want me to do - I pray that even now, I would be able to serve you, that somehow I might be a blessing to someone else. More than anything, I thank you for Jesus.
Until next Friday! God willing.