Body Betrayed | Body Disabled

Welcome to My Story ~ Updated 08/30/14

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New Website: krbunnsr.com
You can email me at krbunnsr@gmail.com

Saturday, August 30, 2014

Bipap and Myasthenia Crisis

I have not felt well this past week. I have been very tired and had a bad case of the "don't cares." That is so not like me. This too will pass.

I use a bipap for sleep apnea and to help with myasthenia gravis. A bipap is an advanced sleep therapy machine that applies one pressure when I breathe in (15 pounds for me at present) and a reduced pressure when I breathe out (10 pounds). This makes breathing easier for me, give my breathing muscles some rest and the pressure difference of exhaling helps clear my lungs of any CO2 buildup. That is critical for myasthenia gravis patients.

When the crisis hit after I got out of the shower on August 20, I immediately put on my bipap. It helped and I used it until I left for the ER.

A bipap does much more than just change pressure when breathing, it monitors many breathing functions such as: respirations per minute, flow rate, inspiring and expiring times, and AHI.

I have software that reads my bipap data. I thought it would be interesting to see what happened around the time I went into crisis. I decided to focus on my tidal volume. Tidal volume is the amount of air moved in and out of the lungs on one breath.

By looking at the graph of my data, my tidal volume was about half of what it normal runs. That means my breathing muscles were only working enough to move about half the air I needed in and out of my lungs. No wonder I was in crisis.

I have ordered a car adapter for my bipap so it can travel with me to the ER or anywhere else I go. That would be a good idea for anyone else on a bipap too.

--Kerry

Saturday, August 23, 2014

Tenth Hospitalization -- MG Crisis

Here is what has happened since Wednesday 


Wednesday Morning (08/20/14)

I am not feeling great today. My vision is bad and I have a pressure feeling in the sides and back of my head. Just another fun day with MG!

Lunch
Cathy called and canceled my therapy appointment and I took a shower around lunch time. My breathing became really bad in the shower. My arms basically stopped working and I had to sit on the ledge in the shower because my legs became very weak. I burst into tears because of the pseudobulbar affect; Cathy heard me crying. She came and helped me out of the shower, get dried and dressed, and finally to the bed. I put on my bi-pap and she called Kerrell. They decided I needed to go the ER. I don't remember much after that.

Evening
Update by Cathy on Kerry: We took him to the ER today at Memorial Hospital in Chattanooga, TN. His breathing was bad, pressure in head, along with a bad PBA attack (pseudobulbar affect). He was in a myasthenia gravis crisis.

They took him back quickly. The ER doctor decided to admit him almost as soon as he saw Kerry. He called in a hospital internist and neurologist, all three seem to be very good doctors. The neurologist was the last to arrive. His first question was, "And why is he not intubated?" Kerry's answer, "Because I really don't won't to be, please!" Kerry was within a "hair" of being put on a ventilator.

They admitted him to the ICU overnight. The neurologist has him scheduled for five plasma exchanges. They will insert a vascular catheter sometime on Thursday and afterward he will have his first treatment. Kerry had thought he might be back in the hospital sometime within the next month or so because of how he was feeling, but the crisis came on quickly today.
Thursday (08/21/14)
It was a long, sleepless night. The monitors kept alarming because heart rate kept dropping into the 40's (that is normal for me). I am waiting for interventional radiology to do my vascular catheter and then it is off to plasma exchange. It looks like I will be in the hospital through Tuesday of next week. I still fell bad this morning.

Evening
This was my second night in ICU. Today is over; the vascular catheter and the plasma exchange went well. I had an ultrasound of my legs to look for blood clots. Don't expect any. Tomorrow brings another plasma exchange and a cardiac ultrasound. I think they are checking for pulmonary hypertension. Will check and see why. Thanks for the prayers. P.S. Cardiac enzymes were elevated...probably from stress on breathing muscles during crisis.
Friday (08/22/14)
I had a good sleep last night. Breathing better at rest this morning. Still hard to breath with activity.

My problem is a myasthenia gravis (MG) crisis where my breathing muscles became so weak breathing became very difficult. The doctors almost put me on a ventilator to rest my breathing muscles so they could recover from the MG. But, they waited to see if the plasma exchange would help. It did. I have had two so far. I have three more to go. I will be in the hospital through Monday. I was in ICU to monitor my breathing because I could need a ventilator at any moment until the crisis passed.

They did the ultrasound on my heart today, I do not know the results yet. The plasma exchange also went well.

I am stronger because of the two plasma exchanges and they have increased my prednisone to 20mg daily. That always helps!
Saturday (08/23/14)
It is good to be in a regular room. I still have a heart monitor, but it is wireless. They have also removed the blood pressure cuff and the SpO2 monitor; those wires really get in the way. I am feeling better, but breathing is still hard with any activity. I have been in contact with Dr. C.L. at Vanderbilt. He may start me back on chemotherapy again.

The plasma exchange was late Saturday afternoon and went well. I am improving, but still have a lot of trouble breathing even walking across the room. The heart ultrasound was fine.


One more thing...when the nurse was checking me into the ICU room she asked, "Is there anything you need to continue your religious practices while you are in the hospital?" I responded, "Yes: A live chicken, some orange marmalade, and a weed eater!" She laughed. "Well, you asked!" It's Me Again Margaret!

Sunday, July 20, 2014

Thursday, July 17

I am home from my third occipital nerve block. This time they included a steroid and muscle relaxer in the injection. I will also be going for physical therapy on my neck to see if it helps the headaches since the occipital nerve arises from the C1 & C2 out of the spine.

I had fasting blood work while at the headache neurologist to check my cholesterol levels. Because I had a small lacunar stoke sometime before 2005, Dr. C.C. is working to prevent me from having another stroke by keeping my cholesterol levels low. I am glad he is taking an interest in this. The other neurologist have way been too busy taking care of my other pressing issues.

I have always had low cholesterol levels and this time was no exception. Total cholesterol--138; HDL--42; LDL--78; Triglycerides--91. But, Dr. C.C. called me at home tonight, July 18 (that is a good doctor to call someone at home) and wants my LDL level below 70. So, starting tomorrow, I will be on a very low dose of Lipitor. To bad it is not Crestor or I could go bowling!

Tuesday, July 15, 2014

I Need a Favor

I have a huge favor to ask. If you have read my books and are on Amazon.com (Barnes and Noble, Books-A-Million, etc), would you do a quick review and post it please. This will help my books show up when people do a "key word" search for Myasthenia Gravis. I discovered that Body Disabled does not show when doing a search. Amazon said it needs some reviews. The more reviews the higher a book seems to display in a search. Please post the review on both the paperback and Kindle versions of the books. Thanks so much.

Saturday, July 12, 2014

Headache Update & New Website

Headache . . .
The nerve block helped with the headache, but it did not completely stop it this time. I have spent a lot of time with an ice bag on the back of my neck and that seems to help. I see the headache neurologist next week for my regular followup. I am going to ask for another nerve block.

Website . . .
My updated Myasthenia Gravis and Small Fiber Neuropathy website is ready. It has links to MG sites, my blog, videos, and books. If you have a suggestion for a link, please let me know.

I stopped my old site a couple of years ago because the hosting company was just to expensive. I lost the lease on my domain name "krbunn.com." Another entity bought the lease and continues to lease it every year without using it. I can but it back from them for a "small nominal fee." The current bid for my old website name is $1,900.00. They have got to be kidding. Rip Off! That happens a lot in the domain name business. There are lots of web-cheats out there. My solution . . . a new website domain name . . .http://krbunnsr.com/

Sunday, July 6, 2014

Rough Week (07/06/14)

Yesterday (Wednesday) was horrible. I woke with a 103.6 fever. We drove to the Vanderbilt clinic in Franklin, TN for my nerve block. I still had fever when I arrived and my pulse was 129. My neurologist was out-of-town for a funeral, but was on his was back so they had worked me in with the other neurologist in the office. He said, "You look really sick, I don't think it is safe to do the nerve block today."

Since he was not familiar with my case he was not comfortable giving me the block considering my current condition and the danger involved. The medication in the nerve block can trigger atrial fibrillation, especially in someone who has had them before and when their heart rate is already at 129.

Cathy asked, "Can you at least give him some type of pain shot for the headache?" He said he would. He also tried to contact his partner, my regular headache neurologist, for his opinion. Of course, he was unreachable. The doctor felt really bad because he knew I was in pain and wanted to help, but did not want to put me into a more serious situation. I appreciate that.

In a few minutes, the nurse gave me the shot and the doctor came back in and said, "Dr. C.C. called me back, he agreed to go ahead with the nerve block then have you go to an urgent care for the fever." Praise the Lord!

Today, my fever has left, my headache is better and I am recovering.

Sunday, June 29, 2014

I Never Learn

I was feeling better this past week and over did it. So, I paid the price yesterday and am still paying the price today. One would think I would learn my lesson one day! My headaches are slowly returning, but are still under control with tylenol.

Sunday, June 22, 2014

Sunday, June 22, 2014

Things are still going well. I cannot walk on my heels, but still do not feel like I need a PLEX. My headaches have been much better, but are trying to come back. The neuro said it may take several nerve blocks to finally break the cycle. But, so far, so good.
--Kerry

Saturday, June 7, 2014

Headaches (June 07, 2014)

I saw a headache specialist this week at Vanderbilt. 

My headaches are due to occipital nerve neuralgia. The occipital nerve comes out of the

Sunday, June 1, 2014

June is Myasthenia Gravis Awareness Month

June is MG Awareness Month. As such, here is a website with much more info about MG. http://www.myasthenia.org

This are still about the same with me. I have an appointment with my endocrinologist this

Sunday, May 25, 2014

Sunday, May 26, 2014

Things are about the same for me. I am a little weaker over the last couple of weeks. I really over did it last week and am very tired and just don't feel good right now. I need lots of rest right now.

Monday, April 28, 2014

Thymectomy Post-Op Report (04/28/14)

My post-surgery appointment was today (Monday, April 28). Cathy and I left Ringgold, GA at 8:00 AM because of the threat of bad weather; it stormed on us from Monteagle, TN to Nashville, TN. I also had a chest xray before my scheduled appointment. 

I did manage to entertain everyone in the waiting room: I am not talking about the Dr. Who

Saturday, April 19, 2014

Easter Sunday Meditation (04/20/14)

The Resurrection of Jesus Christ is the most important event in all of history. Today's meditation is very simple. It consists of an antiphonal worship (we baptist usually call it a responsive reading) used throughout the years on this Sunday.

Leader: Christ Is Risen
Congregation: He Is Risen Indeed
Leader: Christ Is Risen
Everyone: Amen, Amen, Amen!

Saturday Meditation (04/19/14)

Silence from God . . . that's what the disciples experienced immediately after the crucifixion of Jesus. If you think about it, silence from God is not all that unusual for in the

Friday, April 18, 2014

Good Friday (04/18/14)

It has been a good week for me. I have had very little pain and experienced no problems, except for the usual myasthenia gravis issues. I am still recovering from the surgery and am

Sunday, April 13, 2014

First Week Home (04/13/14)

I have been home for a little over a week now. The pain from surgery has been minimal. The scars are healing well. The vascular catheter and chest drain tube holes have closed

Sunday, April 6, 2014

Home, April 5, 2014

I am home after nine days at Vanderbilt, including five days of plasma exchange and a thymectomy. The surgery went well, but the post-op was a problem.

My blood pressure and heart rate were high after surgery. I was in recovery for a long time

Wednesday, April 2, 2014

Cathy's Blog, Wednesday, April 2

Kerry is in dialysis for his last plasmapheresis for this trip. His surgery on Thursday, April 3 and we are feeling confident. We feel the surgery will go well and the thymectomy is the

Tuesday, April 1, 2014

Cathy's Blog: Sunday - Tuesday (March 30-April 1)

Sunday
Kerry thought it would be good for me to go home for a day or two. I did not think it was a good idea. However, he did not have plasma exchange on Sunday so I decided to go home

Sunday, March 30, 2014

Day Two and Three (March 29 and 30, 2014)

Yesterday was fairly uneventful. They did not take me for plasma exchange until 4:30 PM and I did not return to my room until 9:30 last evening. I have to stay in bed during the

Saturday, March 29, 2014

Sunday, March 23, 2014

Ninth Hospitalization, Thymectomy, and Book

I will be going into the hospital at Vanderbilt on March 28 for more five days of plasma exchange--I get off Sunday for good behavior. This will be my ninth hospitalization since

Saturday, March 8, 2014

The Journey Will Continue (03/07/14)

Cathy and I thank you so much for your prayers, support, and lover during this difficult time in our life. We appreciate and feel your concern. May God continue to

Wednesday, March 5, 2014

Thymectomy Soon

Cathy and I left very early yesterday morning (March 05) for an 8:00 AM surgery consultation with Dr. E.L. at Vanderbilt. He asked a lot of questions, explained the pros

Tuesday, March 4, 2014

CT Scan Report (02/28/14)

I had the CT scan on Wednesday, February 26. The scan was normal; no lung disease or

Vanderbilt Appointments (02/25/14)

Dr. C.L., my neurologist, was concerned about my lack of improvement. I have not been doing well since the last plasma exchange in December 2013. He made some changes to my medications in hope of reducing some of the side effects I

Condition Update (02/21/14)

Current Status: I have not improved much since the December 2013, plasma exchanges and chemo treatments. It may be due to my January bronchitis spell. I

Saturday, February 22, 2014

Chemotherapy (02/19/12)

The chemotherapy infusion went well as usual. I am fortunate that I tolerate

Ophthalmologists Appointment (02/18/14)

My appointment with Dr. J.M. went well on Tuesday. No glaucoma, no macular degeneration, no diabetic retinopathy. I do have a cataract in my left eye that is due to prednisone, but it is stable. My Dr. has scheduled me an appointment with a neuro-ophthalmologist to check deeper into my double-vision.

Thursday, January 23, 2014

Chemotherapy for January 2014

Because I spent time in the hospital during December for plasma exchange, my January Cytoxan chemotherapy orders for my Myasthenia Gravis had to be reissued. The reissue

Sunday, January 5, 2014

Third Anniversary of Disability (01/05/14)

Today is the third anniversary of my medial leave which led to being on disability. I have learned to adapt to my situation, but I sill struggle some with all that has

Wednesday, January 1, 2014

Almost 2014

As I write this, 2014 will be here in a matter of hours. I do not know what the new year holds in store for me, but I face it with trust in God. Years ago, my mother-in-law gave me a small desk plaque that states, 
The will of God will never lead you
where the grace of God cannot keep you.

How true!
Happy New Year


Thursday, December 19, 2013

Before and After

I have a before and after treatment video on my YouTube channel now. It shows

Saturday, December 14, 2013

Doing Okay

I am showing improvement from the plasma exchange and chemotherapy. It is just taking time to get over the side effects of the chemo this time. I hope to do a new video Monday.

Sunday, December 8, 2013

Saturday and Sunday


Saturday – December 7, 2013

No problems from the plasma exchange today. Kerry is now receiving only a one to one

Saturday, December 7, 2013

Tuesday, December 3, 2013

New Video

Here is my latest video documenting my current condition before my next plasma exchange in early December

Click Here for the Video


Sunday, November 24, 2013

Thanksgiving

November has almost come and gone, so has 2013. WOW! I am thankful for this year and all its blessings. Overall, it has been a good year for us; a lot better than it could have been.

Friday, November 8, 2013

November 6 Chemotherapy

I postponed my chemotherapy last week because of a upper respiratory infection. On Monday of this week, my breathing became more shallow and difficult, so I spent much more time on the BiPAP. After the chemotherapy on Wednesday (11/06), my

Sunday, October 27, 2013

Mobility Device

This has not been a good month for me. My strength and stamina have not returned. The graph example in my last blog would have been much flatter this month. Dr. Lee thinks I may have had a "bug" before the last chemo that caused the chemo to not be as effective. My next chemo is this week.

Sunday, October 13, 2013

October Update

It has been awhile since my last report. I have spent most of my writing time of my next book, Body Disabled: My Journey through Disability and Trust.

Sunday, August 25, 2013

Endocrinology Report

I am at my good point between chemo infusions now. The next infusion is in early September.

Saturday, August 10, 2013

Appointment Update

My neurology appointment went well last week. I will have a chemo at the increased level in September. If I am still going down before the next scheduled chemo, we may

Sunday, July 28, 2013

Usual Pattern

Well, I am following my usual pattern. The first week or so after Cytoxan I am nauseated and feel bad. Then for a few days I feel good for me. Finally, about a week or so before the next Cytoxan the MG gets really bad. What a roller coaster! I am now on the downhill side again and the next Cytoxan is August 6.

I also have gone through my third staph infection--not fun.

Otherwise things are going about like normal for us.

Sunday, June 30, 2013

Cardiology Report

The cardiologist reports all came back as normal. This is what I expected since my heart has been very healthy through this long process. Soli Deo Gloria!

Wednesday, June 26, 2013

Feeling Bad

In last Sundays post, I said, "I feel as good right now as I have felt this year." By late afternoon things really changed and I started feeling really bad again. This is just how MG effects me. 

Sunday, June 23, 2013

Feeling Better

The staph infection of last week is responding well to the antibiotics and giving me no problems now. I am feeling better after recovering from the increased chemo. I feel as good right now as I have felt this year.

Sunday, June 16, 2013

Increased Chemo Report

Last weeks increased Cytoxan dose was harder on me than I expected. Nausea, upset stomach, and sleepiness were bad Saturday afternoon through Wednesday. I slept a lot. I do think the increased dosage is helping. Right now, I am breathing some better and feel a little stronger. If things had not improved by now, I would have called Vanderbilt and requested another five days of plasma exchange.

Sunday, June 9, 2013

Chemo Increased and Extended

Last Friday, June 7, I was scheduled to receive my 6th 1 gram Cytoxan infusion but things changed. Dr. Lee consulted with others about my condition since I was going down-hill again quickly. He changed my Cytoxan dose from 1 gram to 1.35 grams. He also extended the infusions for 6 more months. So fast, so good--no additional side effects.

Sunday, June 2, 2013

Downhill

Sara Kate and T.J. (Randell and Laela's two oldest) spent the week with us. We had a fun spending time with some of the grand kids who live in Alabama. We made a day trip to Cherokee and they had a blast riding to go-carts. I did lots of sitting and watching. The summer heat really bother me, so I sat in the car with the AC on. We plan to get the three youngest is July.

Sunday, May 12, 2013

Fifth Chemo of this Series

I had my fifty Cytoxan yesterday on Friday and things went well.  I was feeling real bad before the chemo, but yesterday I was feeling really good.  I think it was all the extra steroids I had before the treatment.  Today, the steroids have worn off but I am still doing OK.

Happy Mother's Day to Everyone -- Especially my wife Cathy.

Saturday, May 4, 2013

Nothing Really New

Nothing really new this week with me. Feeling OK. I do have a staph infection which may have gotten into my blood. Shot and oral antibiotics are working quickly. No problem.

Saturday, April 27, 2013

Antibodies Building Again?

It has been a little over four months since I had my last plasma exchange. The chemotherapy infusions definitely help keep me out of the hospital. The only problem is that once I finish plasma exchange, antibodies start building up again and my symptoms return over time. The chemo buys me more time but I finally reach a point where the antibodies building in my blood need to be removed by more plasma exchange.

Sunday, April 21, 2013

I Knew Better

This has been a fairly good week. Cathy has done a lot of yard work and planted a few garden plants in three very small raised beds. I supervised! I should open a landscaping company with Cathy and the "star" employee.

Saturday, April 13, 2013

Is March Really Over!

Most of March is blurry to me. I was dealing with the light side-effects of Cytoxan for the first few weeks, then the bad effects of pneumonia for the rest of the month. This improved and I was able to take my 4th Cytoxan treatment yesterday. The treatment went well, but I became a little nauseated at the end.

Sunday, March 31, 2013

Quick Update

Two steroid shots, three antibiotics, fourth bottle of cough medicine, an inhaler  and I am still fighting pneumonia.  I think I may be some better.  It is possible to deep-cough so much that you can't cough any more (especially with MG).

Saturday, March 23, 2013

Pheumonia

Last Sunday (3/17) I went to the Urgent Care near our house and was diagnosed with bronchitis and an upper respiratory infection. I have been on antibiotics and prescription cough medicine ever since. Last night and this morning I had several bad coughing spells and began to feel "bubbly" on the inside (not the good type of bubbly). I went to the ER at Erlanger East this afternoon (3/23). After x-rays, blood work, etc I now have pneumonia in the lower lobe of my right lung. What fun!

Sunday, March 17, 2013

A Few Days at Randell's

We went to Randell's for a few days last week. He is still recovering from his concussion, not allowed to drive, and is on a limited work schedule but is improving. Cathy worked around the house and chauffeured him around some while I sat in the recliner. We had a good trip and it was good to spend time with the grandkids. Emily came down with a respiratory infections--I think I am too.

Saturday, March 2, 2013

3rd Cytoxan

I had my 3rd Cytoxan infusion last Firday.  I am doing well, but starting to get that "flu-like" feeling.  Should'nt last but about a week.  We have had snow flurries, cold and cloudy weather for two day.  We are so ready for spring.

Sunday, February 17, 2013

Update February 17, 2013

I am still doing fairly well except for some breathing issues and headaches,  My neuro is trying to reduce my prednisone level.  When we reduced the level, my breathing worsened.  So now I am back to my previous prednisone level and it seems to be helping.  I feel like my back need to "pop."  That is probably why my head hurts.

Thanks for reading this blog and for your prayers and support.

Friday, February 15, 2013

Goat Video Below

Kerrell showed me a video of Goats Yelling Like people on the internet.  It reminded me of a song.

Sunday, February 3, 2013

Quick Update, 2nd Cytoxan Infusion 2012/02/01

I had my 2nd Cytoxan infusion on Friday.  It took all day.  So far, so good.  Only a little nausea.

My followup appointment with the neurologist was last Monday.  He was very happy with my

Saturday, January 12, 2013

January 2013

This January marks the 2nd anniversary of my medical leave which eventually led to my disability.  It has been a trying time for me and my family.  Yet, God has blessed us so much during these two years.

Thursday, January 3, 2013

Chemotherapy Again

Tomorrow, I begin my third round of chemotherapy treatments as an outpatient at Memorial Hospital.

Friday, December 21, 2012

Thirty-Eight Years Ago

The Myan Calendar says the world will end today, December 21, 2012.  

My world began today on December 21, 1974 when I married Cathy.  

Sunday, December 16, 2012

Saturday Update

Saturday's plasma exchange went well.  I will go back on Monday for my 5th and last exchange.  My local primary care physician will manage the chemotherapy for my Vanderbilt neurologist.  I will start chemo in the next week or so.

Thanks for your prayers and support.

Friday, December 14, 2012

Cathy's Blog -- Wednesday, December 12, 2012

We had an early visit from one of the kidney doctors, and an early trip to dialysis this morning. After breakfast, I joined Kerry in the dialysis unit.

We may get to come home after Thursday's treatment. The Nephrologist (kidney doctor) doesn't want to

Wednesday, December 12, 2012

Cathy's Blog -- Tuesday, December 11, 2012

Today has been a fairly uneventful day. Kerry left early for his PLEX treatment. I went to eat breakfast, then to the car to swap out clothes, then to dialysis to check on Kerry and then back to the room to rest.

After Kerry returned to the room, it was lunch time. While he was eating, I went to the cafeteria and had a

Tuesday, December 11, 2012

Cathy's Blog -- Monday, December 10, 2012

Hello to All!

We arrived about 8:00 AM Georgia time, I let Kerry out at the door, went and parked the car. By the time I arrived, he was heading to radiology check-in. The hospital admissions clerk had called radiology and told Kerry to go straight to radiology. The radiology clerk hadn't-a-clue why Kerry was sent to radiology first, but completed her part of the process and sent him back to hospital admissions--then back to radiology again. It was not long before he was called back to radiology pre-op.

While we were waiting for the procedure, the commode across the waiting room from us overflowed and

Thursday, December 6, 2012

Thanksgiving and Early Family Christmas -- More PLEX

We had a fun time celebrating Thanksgiving with Randell and his family. Their mini-farm is really beginning to take shape. They now have chickens, a few ducks, and six donkeys. Better them than me!
On Friday morning, I was up early as usual. Evan, one of the twin boys, was also up looking around for

Sunday, November 18, 2012

Thanksgiving

We had a good early Thanksgiving supper with Kerrell and her family last Thursday.  We plan to go to Randell's for Thanksgiving day.

So much to be thankful for this year.  I will post more on that later.  I am still about the same--that good!

Saturday, November 10, 2012

New Video

I am still doing fairly well, just very tired.

I have a new video on YouTube.  You can watch it here.



Sunday, November 4, 2012

MGFA Ga Chapter Meeting

Cathy and I attended the Georgia State Chapter Myasthenia Gravis Foundation of America conference on MG yesterday in Atlanta. Guest speakers were: Dr. Gary Cutter, Professor of Biostatistics and Head of the Section on Research Methods and Clinical Trials at the University of Alabama – Birmingham, and Dr.

Sunday, October 28, 2012

Busy Week -- Max and Toby Published

Is has been busy around our house this week.  Our roofing was replaced because of hail damage.  Our Sunday School class did some extra work around our house this Saturday.  They did some of the things that I am no longer able to do.  What a real blessing to have such friends.  Cathy and I appreciate each and every one.

Saturday, October 20, 2012

Autonomic System Testing and PLEX Update

I had Autonomic Nervous System (ANS) testing last week at Vanderbilt. The good news is my autonomic nervous system is intact and is not causing my breathing, heart rate, and blood pressure issues. I still have the Small Fiber Neuropathy, but it has not damaged my ANS.

Saturday, October 13, 2012

One Week after PLEX, October 13, 2012

I am slowly gaining more strength and stamina which is great.  My aching is not as bad as it was a few weeks ago.  My headaches are much better.  It seems the new preventative medication is helping--I hope it continues to do so.  My double-vision and breathing issues are still not much better.  Overall, the plasma exchange (PLEX) was not as bad on me this time compared with the PLEX and chemo together in April 2012.

Saturday, October 6, 2012

Coming Home Today

Cathy is exhausted and did not write a blog yesterday. She is resting this morning so I am writing. Right now, I am waiting on my last plasma exchange. I think they are beginning to take effect and I feel stronger. I have had FFP (fresh frozen human plasma) twice this week and had a slight reaction both time.

Thursday, October 4, 2012

Cathy's Blog, October 4, 2012

October 4, 2012
Day 4 at Vanderbilt

I spoke with Lynda Clark Wednesday afternoon and I related that we didn't have a regular room yet. We have been in the surgical transition area since Monday. Lynda asked me if it was okay if the choir had prayer about a room for us and I said "yes." Wednesday night at 8:30 we received the good news that we had a roon! I called Lynda Thursday morning and told her. She said, "that was about the time they were praying!" God answers prayers!

Wednesday, October 3, 2012

Cathy's Blog, October 3, 2012

Day Three
Wednesday, October 3, 2012

We are not in a "regular room yet." I am kind-of sorta irritated, but I understand that there are others that need more care than we do. So, all in all I guess I shouldn't be complaining.

Tuesday, October 2, 2012

Cathy's Blog October 2, 2012

Day Two at Vanderbilt

October 2, 1012 6:00 PM and we are still in the same Surgical Transition Unit room because the hospital is full. The daytime head nurse called to find out about our room but there are 4 neurology patients waiting for the same rooms. We should have one tomorrow.

Monday, October 1, 2012

Cathy's Blog, October 1, 2012

End of Day One:

October 1, 2012 began early this morning, 4:00 am to be exact. As usual, we had packed the car the night before, except for our toiletries and last minute grabs. Kerry was allowed to have a cup of coffee, so I didn't have to feel badly about drinking mine in front of him.

Saturday, September 29, 2012

EGD Update

The EGD went well yesterday.  There were no obvious problems with my upper GI system--things looked good.  This is just further evidence that my problems are nerve damage.

Wednesday, September 26, 2012

2012-09-26 Pre-PLEX Condition Assessment

I will have another five days of Plasma Exchange (PLEX) very soon. Here is an assessment of my current condition as documentation for my physicians.

Monday, August 27, 2012

Quick Update

Yesterday (Sunday, August 26) was not a good day.  I had a bad headache and my eye hurt.  I am feeling some better today.  Otherwise things are status quo.   I plan to do a video soon.

Saturday, August 18, 2012

I Knew Better than . . .

I Knew Better than . . .

A week ago, Cathy and I had BBQ for supper about 6:00 PM. I am a BBQ fan--true Georgia pork BBQ. It was good and I really enjoyed it. But, I knew better.

Tuesday, August 7, 2012

Monday, July 23, 2012

Quick Update

Things are about the same, except I have been dealing with nausea for about a month.  I have several doctor appointments and test in the next couple of week.  I will do a longer blog when I know more.

Sunday, July 8, 2012

Cathy's Home-Fix-It Shop

Cathy has been working hard around the house for the last couple of months. She has painted the vinyl shutters and exterior light fixtures black, the front door red, the porch grey, and put a fresh coat of caulking and white paint on the rails. She did a good job while I supervised. I can do about fifteen minutes of activity before my body totally stops me. It takes several hours to recover.

Saturday, June 30, 2012

Same 'ole Thing

Nothing new to report.  Have a great 4th of July.

Sunday, June 24, 2012

Writing for a Guest Blogger

I was asked by a fellow MG'er and Blogger to do a guest blog for her site.  During June, Debbie is focusing on MG Awareness month by posting the stories of various individuals with MG.  She is doing a great job.
Click here for a link to her blog.

This was my post for her blog.

Sunday, June 10, 2012

Same

Things are about the same for me.  I am now on 15mg of prednisone daily instead of 20mg.  We shall see what happens.

Saturday, May 26, 2012

More of the Same

Things are essentially the same with me except my ulcers are better. I feel very tired and cannot breathe well at all. Any exertion really causes me problems. I still cannot walk on my heels or lift the pennies. Things could be worse.

More next week, or earlier if there are any changes.

Thanks again for your prayers and support.

Sunday, May 20, 2012

Status Quo Again

Things are about the same. Still cannot walk on my heels or lift the pennies. The Rituximab has caused a lot of mouth and throat ulcers--they hurt! Finally trying to reduce prednisone. This way, we will know if the Rituximab is working.

Sunday, May 13, 2012

Status Quo

Things are still about the same for me. I cannot walk on my heels, but I can almost curl the box of pennies one/half time. Some improvement I guess.

Monday, May 7, 2012

Another twelve hours have passed since I made and posted the last video (2012-05-06).
I tried to walk on my heels and lift the box of pennies this morning.

I CANNOT! Wow. No video this time--I look just like the 2012-05-05 video.

Sunday, May 6, 2012

Twenty-Four Hours Later

I can now walk on my heels.  The treatments are helping and the Lord is Good!

Click here to watch this video.

Compare this to the previous video.

Saturday, May 5, 2012

Home from Second Rituximab Infusion -- Updated Video

I am home from my second and last Rituxmab infusion. The infusion went well with no side-effects, just very, very tired. I am just wide awake and hot from all the Prednisone given me before the infusion. That's why I am writing this at 4:00 AM.

Wednesday, May 2, 2012

Three Small Steps

I walked on my heels for three, slow, short, toddling, Frankenstein steps this morning--then I sat down and almost passed out after about thirty seconds. I still cannot lift the box of pennies. At least it is some slight improvement.

Saturday, April 28, 2012

Saturday Evening Update

It has been a week since PLEX and the Rituximab.  So far, I don't see much improvement.  I still cannot walk on my heels or life the box of pennies.  We shall see what happens with more time.

Friday, April 27, 2012

Lung/Sleep Doctor Follow Up

The appointment with my lung/sleep doctor went as I expected. My lungs are still clear and in good shape. The problem continues to be with my breathing muscles. They are no better.

Tuesday, April 24, 2012

Three Years Down

Today, April 24, 2012, begins the fourth year in my Journey through Sickness and Faith. It was three years ago that I cut my leg fishing and received a tetanus vaccine with precipitated my illness.

Monday, April 23, 2012

Bad Day

Today is not a good day.  Can't breath well at all.  No chemo side-effects which is good!  But, lots of those emotional issues.  Cathy came home early.  Hoping to avoid going to the ER because of breathing issues.  I have an appointment with Sleep-Lung doctor of Thursday.

Saturday, April 21, 2012

Vanderbilt Trip Summary

We are home from the plasma exchange (PLEX) at Vanderbilt. This makes a total of thirty-two exchanges for me. We thank everyone for their continued prayers and support.
I had a total of 650% of my blood volume exchanged over five days. I also received an additional ten units of FFP (fresh frozen plasma). FFP is more of a pure blood product than the normal 5% albumin I also received. FFP contains clotting and other blood factors, so they take much more precaution with giving it. FFP must be cross-typed and matched to my blood type, albumin does not.

Thursday, April 19, 2012

Thursday at Vanderbilt

Thank goodness we only have one more night here. In spite of showers, my own sheet for the little cot, and trying to keep the room straight, I still do not feel as clean as when at home. The sink in our room is small and water goes everywhere and the paper towels smell like wet paper (wonder why) and things do not feel clean to me. But, everyone knows how picky I am. I am trying to roll with the flow :-( which is not easy for me to do.

Wednesday at Vandervilt

Last night (Tuesday) Kerry's evening meal did not arrive. After asking the nurse and after she called the kitchen four times, they finally brought it. The kitchen closes at 8:00 PM and he finally got to eat around 7:45 P.M. The meal looked as "thrown together" as it was.

Wednesday, April 18, 2012

Tuesday at Vanderbilt

We got up around 6:15 AM Georgia time and proceeded to get ready for the day. Kerry left at 7:45 AM for his second PLEX treatment. How Kerry is feeling today? I quote. "I feel terrible instead of horrible," which I guess is a small improvement. I proceeded to tidy up our room, swap out dirty clothes for clean ones, ate his breakfast, and joined him in dialysis.

Sunday, April 15, 2012

Five More Days of PLEX

Cathy and I are heading to Vanderbilt for more PLEX for me. We arrive on Monday to have the vas cath surgically inserted, then 5 days of inpatient plasma exchange.
Here is a new video I did this afternoon.    Click here to watch!

Wednesday, April 11, 2012

Another MG Loss

Bethany Bergh, another MG'er and FaceBook friend passed away a few weeks ago. She was 18.  This disease is no respecter of any age or person.

Cathy the Surgeon

Yesterday, when I sat in the swing on the back poach, a very large splinter from a deck board broke off deep in the bottom of my heel.

Tuesday, April 10, 2012

More Plasma Exchange

My condition had deteriorated very quickly over the last week.  Breathing is much more labored and tiresome.  I need much, much, more rest just to do anything.

Monday, April 9, 2012

Another MG'er Gone

Here are some words from a FaceBook friend (Kerri Sweeris) about the death of another MG FaceBook friend (Julie Waters) this weekend.

Thursday, April 5, 2012

More PLEX and New Video

OK, I finally emailed Dr. CL and asked for more plasma exchange.  It was a hard thing for me to do because PLEX is so hard on my body, but it is time for five more days of exchange.

Two Friends Are Gone

Two friends have passed away over the last few weeks.

Friday, March 30, 2012

PLEX Wearing Off

It has been two months since my last Plasma Exchange (PLEX) and I think it is beginning to wear off.

Wednesday, March 21, 2012

Spring Has Sprung

Things are still gone fairly well for me. I have all the same symptoms, but not a severe. I did have a rough three-day weekend, but hope that it was only a quickly passing issue.

Monday, March 5, 2012

A Good Week

I finally had a fairly good week last week. Not too much pain, legs and arms moved without much problems. Strength held up well. Breathing was still a problem, but thankful for the good week. To God Be the Glory.  Thanks again for all the prayers and support!

Tuesday, February 21, 2012

Cathy's Job

Cathy is on a eight-week work assignment at Unum. She gave up the assignment at her other temporary job because of the stress involved; she did not need any more stress. She had worked there for over one year.

Sunday, February 19, 2012

Headache

Lots of headache this past week and weekend.  Lots of pain pills too.

Wednesday, February 15, 2012

Quick Update

The last couple of days have not been very good for me.  I have felt flu-like, but with no fever.  Last night I had a battle with my Bi-Pap hosing while I was sleeping.  It lost.  I finally got the machine back together with the help of Eddie Test Medical.

Thanks again for your prayers and support.

Wednesday, February 8, 2012

PLEX and Vision Update

It has been a little over a week since I completed the five-day PLEX. It has helped my walking, strength, and stamina. I see little, if any, effect in my breathing and vision.

Tuesday, February 7, 2012

The Crud--Updated 02/07/12

After five days of outpatient treatments, over an hour sitting in a waiting room for my ultrasound, and two sick grandchildren ...I now officially have the crud.

Wednesday, February 1, 2012

Saturday, January 28, 2012

Erlanger PLEX is Over

Five days of plasma exchange at Erlanger are over.  Thanks to everyone in the dialysis unit for their kindness and care.  Now it is time to get over the hit-by-a-truck feeling.

I go back Monday for more blood work and then to Interventional Radiology to get the Tunneled Vas Cath pulled.

Wednesday, January 25, 2012

Quick Update

Erlanger uses a new PLEX machine that filters (not spins) the blood. It runs much faster and I did very well during much of the procedure. Just before the end, I had nausea out-of-the-blue and threw-up immediately with no warning. Zofran is a wonderful friend and stopped the nausea. I will be Zofraned-Up today! Thanks for the prayers and support.

Monday, January 23, 2012

More Plasma Exchange this Week

My MG has worsened lately. I talked with the neurologist late last week and began the process of approval for additional plasma exchange. Everything is ready. I have the vascular catheter inserted in the morning (Tuesday). After that, I have five days of plasma exchange at Erlanger in Chattanooga starting tomorrow.

Sunday, January 22, 2012

Updated Again -- I Sent the eMail . . .

It looks like I will have three to five days of plasma exchange (PLEX) somewhere next week.

UPDATE 01/18/12:  Waiting for my series of PLEX to be setup in Chattanooga in the next few days.

UPDATE 01/20/12:  I will have PLEX at Erlanger next week.

Tuesday, January 17, 2012

A Question of God's Will

I am part of several internet support groups and my book has a good presence in the MG web community. As a result, I often receive questions about living with Myasthenia Gravis (MG). One recent question dealt with doing God's will.

Monday, January 16, 2012

A Few Stats

Here are some stats since I started blogging on April 24, 2009.
Page views: 17,234

Sunday, January 15, 2012

A Quick Medical Update

At my last neurological appointment, Dr. CL ordered blood work and found my blood ferritin level was very low. This was probably contributing to my trembling, restless-leg, and aching. He prescribed ferrous sulfate tablets are they are helping the restless-leg and aching somewhat. The tablets nauseate me, so I take them every other day. I can tolerate them this way. This is good.

Tuesday, January 10, 2012

Why I Blog

I wrote my first blog entry in April 2009. Since many new people have joined and read my blog now, I thought it would be good to restate why I write this blog.

Friday, January 6, 2012

Out-of-Work for One Year

Yesterday, January 5, 2012 was the one-year anniversary of my last day of work. It has been a huge change and transitioning from work to disabled is difficult at best. Trust me, doing nothing for a year is not all that fun and I would much rather be working. Dropping from a full-time salary to a 60% disability income takes a lot of adjustment. My disability insurance company worked to get my Social Security disability started. The bad thing is my disability insurance reduced my disability payments by the amount Social Security pays. The good thing is that I qualify for Medicare in July 2013, if it is still around. We had a large financial loss on the property we owned in Monticello, but the Lord has been good to us and has provided for our needs. Soli Deo Gloria!

Saturday, December 31, 2011

Cytoxan Infusion for Myasthenia Gravis, Fifth Infusion Report, December 29, 2011

My fifth cytoxan infusion was Thursday, December 29. The infusion went very well. The staff at Vanderbilt 100 Oaks Medical Infusion Center did an excellent job as always. They are a great group of people and I appreciate them very much. I started with the regular side-effects on Friday. Things are not too bad this time. The cytoxan is still helping me hold my own. No worse, but no better either. That is a victory!

Monday, December 26, 2011

What Not to Take!

After several email conversations with my neurologist, we decided on a possible treatment plan for my emotional issues. There are two basic treatment options available. One was a medication I had used about a year ago for neuropathy pain. It made me very anxious so we will not use it now. The other medication is

Saturday, December 24, 2011

Merry Christmas


Cathy and I wish each of you a very

~~ Merry Christmas ~~

Monday, December 19, 2011

Blue Christmas--Hopefully Not!

I have been dealing with issues of crying lately. This is so not me! My neurologists say there is a condition people with ALS, MS, stroke, and other neurological issues may develop which leads to crying or laughing for short periods of time for no reason. This may be happening to me now.

Thursday, December 15, 2011

December 15, 2011 Update

I had two doctor appointments this week. The sleep doctor said my Bi-Pap seems to be working well at night. That's good, but it is still hard to breath. My ophthalmologist said my vision has worsened (not surprised). I cannot legally drive without glasses! My neurologist wants me to wear an eye-patch to compensate for double-vision when I drive. I look like a pirate! Neither doctor wants me to drive much. Cathy is making a great chauffeur. The good news about my eyes is they show no damage from the high-dose prednisone I take daily.

Tuesday, December 6, 2011

Cytoxan Infusion for Myasthenia Gravis, Fourth Infusion Report, December 2, 2011

The cytoxan infusion itself went very will with no side-effects on Friday, December 2. I still had a couple of "bad" days on Sunday and Monday of the following week, but nothing too bad.

Friday, December 2, 2011

Neurology Appointment, November 29, 2011

It was about this time last year that Cathy, myself, and my neurologist made the decision to take medical leave from the church in January of 2011. That medical leave would end with my resignation in June 2011 for health reasons. It was the right decision!

Wednesday, November 23, 2011

Thanksgiving -- CT Scan Update

I must admit there are times I do not "feel" thankful! But thankfulness should never be the result of feeling, situation, or emotion. Thankfulness is the result of an eye-opening realization that, in-spite of everything, I am truly blessed. I am blessed and thankful for everything!  Happy Thanksgiving Everyone!

Saturday, November 19, 2011

High Definition CT Scan

I had a High Definition CT Scan of my lungs and abdomen yesterday (11-18-11) with contrast at Vanderbilt yesterday. I am allergic to contrast, so they pre-medicated me and everything went well. They are still looking for the cause of my breathing issues. The report should be ready early next week.

Tuesday, November 8, 2011

Cytoxan Infusion for Myasthenia Gravis, Third Infusion Report, November 4, 2011

The infusion itself went very will with no side-effects on Friday, November 4.  I did not feel very well on Saturday or Sunday--almost flu like. Yesterday was a bad day too. I became nauseated in the afternoon and called Cathy home from work. I had chills last night. It seems the chemo side-effects finally caught up with me at last. I am doing better today but still have lots of cramping. I think my breathing and vision may be getting worse. I hope that is just a "fig newton" of my imagination.

Thursday, November 3, 2011

November Update

I will have my third Cytoxan infusion this Friday, November 4, 2011. This is eight weeks into my six months of treatments. The Cytoxan is still less stressful on my body than either IVIG or PLEX and I have had no bad side-effects. Soli Deo Gloria!

Thursday, October 13, 2011

Pulmonology Update, October 12, 2011

I emailed my neurologist at Vanderbilt on Tuesday about possibly doing another pulmonary workup at Vanderbilt because of my continued breathing difficulties. I have a good local pulmonologist, but there is value in having all tests and doctors at the same facility. He agreed. I contacted the Pulmonology department and they were able to see me yesterday (Wednesday, October 12, 2011).

Sunday, October 9, 2011

Cytoxan Infusion for Myasthenia Gravis, Second Infusion Report, October 7, 2011

I have completed my second IV Cytoxan infusion for Myasthenia Gravis at Vanderbilt's 100 Oaks Medical Infusion Center. We arrived around 11:00 AM for my noon appointment and checked in early.

Tuesday, October 4, 2011

The Pain, The Pain!

Last Wednesday I woke up with extreme pain in my left big toe. I could not walk on my foot because my toe hurt so much. So, I called the podiatrist and went to see him after lunch. He suggested cutting off part of my toenail that may be ingrown. "No problem, let's do it."

Wednesday, September 21, 2011

Quick Update for 09/19/2011

I am still doing well from the Cytoxan, but now I have a respiratory infection. I am on antibiotics so I should be fine.

Monday, September 12, 2011

Update for September 12, 2011

So far the IV Cytoxan for my MG has been less of a problem than IVIG or PLEX.  I hope it continues that way.

Saturday, September 10, 2011

Cytoxan Infusion for Myasthenia Gravis, First Infusion Report, September 9, 2011

I have completed my first IV Cytoxan infusion for Myasthenia Gravis at Vanderbilt's 100 Oaks Medical Infusion Center. We arrived around 12:30 PM for my 2:00 PM appointment and checked in early. Things went very well.

Thursday, September 8, 2011

Cytoxan Infusion for Myasthenia Gravis, Pre-Infusion Report, September 8, 2011

Tomorrow (September 9, 2011), I start my first IV Cytoxan infusion for Myasthenia Gravis. After an extensive internet search, I have not found much information about this procedure and its effectiveness for MG. So I will be blogging and videoing about my experience. I hope my experience helps others who may be facing more aggressive treatments for their MG.

Wednesday, September 7, 2011

Chemo Update

I will not start the Cytoxan until Friday, September 9.  This works better for our scheduling.

Thursday, September 1, 2011

Chemo Begins September 8

The insurance approval just came through. I start IV Cytoxan chemotherapy next week of September 8. I will have six months of chemo.

Starting Cytoxan Chemotherapy Soon -- Why?

My Vanderbilt doctor has worked really hard at figuring out what is happening and how to treat me. My doctor is a professor of medicine who specializes in Myasthenia Gravis and ALS.

Monday, August 22, 2011

Next Step

Just returned home from Vanderbilt and the Neurologist. The plasma exchange does not seem to be effective any longer . . . so I will not have any more plasma exchanges. Tomorrow's exchange is canceled. I had 22 exchanges in just a little over a year. 

Thursday, August 11, 2011

Breathing Update

I was a long day at the Pulmonogloists. Lots of testing and a trip to the hospital for lab work. So far the test indicate my breathing has worsened. That what I already knew!

Wednesday, August 10, 2011

Plasma Exchange Update

The plasma exchange went well yesterday. I did not get sick. This is very, very good!

Monday, August 8, 2011

A Busy Week

This will be a very busy week. I have two doctor appointments and a plasma exchange scheduled. I will update the results later.

Thursday, August 4, 2011

Two Bad Days

The Plasma Exchange (PLEX) at Erlanger went will during the procedure on Tuesday August 2, 2011. They gave me zofran before the procedure. Immediately after the PLEX, I went to the restroom and promptly threw up, twice. They gave me more zofran and I made it home only to throw up again. Needless to say, Tuesday PM and Wednesday were not good days--very, very sick. I throw up very hard, so my stomach and chest muscles are very sore today and make it hard to breathe.  Doing OK now.

Monday, August 1, 2011

Treatments at Erlanger in Chattanooga and Other Information

It has been a couple of weeks since I reported what is happening. So, here is a quick update.

Wednesday, July 13, 2011

Test Results -- Updated

The lump biopsy and Autonomic Function Testing all came back normal. This is very good! But it does not change the fact that I have great difficulty breathing and my heart rate really increases with activity.

Autonomic Function Testing

Yesterday was a long day for Cathy and me. My appointment for Autonomic Function Testing was at 4:30 PM (GA time). We left for Vanderbilt at noon and arrived home again at 9:45 PM. The testing took about one hour and the focus was on my heart rate and blood pressure.

Friday, July 8, 2011

18th PLEX Treatment, Biopsy, and Neurologist Appointment

Yesterday (July 7, 2011) was a busy day at Vanderbilt: PLEX, Dr. exam, and biopsy on the lump in my left arm. We arrived around 10:45 AM and they took me to dialysis about 11:00 and hooked me up to the PLEX (plasma exchange) machine.

Wednesday, July 6, 2011

Appointment Change

The appointment with my neurologist has been moved up to July 12 from August 22.  It looks like I will be doing PLEX every week now.  Things are in work to have the PLEX at Erlanger in Chattanooga.  That will be a much shorter trip and less tiring for me.

Friday, July 1, 2011

Test Results

The testing for Hereditary Amyloidosis is negative. That is good since amyloidosis is fatal. But that still leave more testing ahead for me.

Monday, June 27, 2011

Reception Last Sunday Evening

Ringgold FBC hosted a wonderful reception in our honor last night (Sunday, June 26). Words cannot begin to express our thanks for such a kind showing of love and support. The cards and words of appreciation were deeply moving. The cake, desserts, and home-made peach ice cream were all delicious. Thanks to all who helped make this possible.

Wednesday, June 22, 2011

Next PLEX

I am heading back to Vanderbilt for my next plasma exchange on June 23.  No report yet on the amyloidosis testing.

Wednesday, June 15, 2011

First Week of Not Being a Pastor!

You may be aware that I have resigned as Pastor of Ringgold FBC. I had actually planned to announce this in May--after my three days in Vanderbilt at the end of May 2011--but the devastating tornadoes changed my plans. So, I waited until the first Sunday of June to resign.

Sunday, June 12, 2011

Latest News

I had my sixteenth plasma exchange at Vanderbilt on Thursday. Things went well, but I had some nausea. Dr. CL stopped by and we had a good conversation about my future treatments.

Tuesday, June 7, 2011

No Longer Can Continue as Active Pastor

This past Sunday I notified the church that I would not be able to return to work as their pastor. Over the last six months, I have rested and continued some very powerful treatments (about $170,000 for the last six months). At this point, I have not improved in my condition.

Friday, June 3, 2011

Condition Update & Future Plans

I will address my current physcal condition and future plans on Sunday, June 5, after the morning worship service.

Tuesday, May 24, 2011

Here is the latest update on my condition.

My next PLEX (plasma exchange) is May 26, 2011. This will be my fifteenth treatment in a year. I currently receive a one-day PLEX treatment every two weeks at Vanderbilt Medical Center in Nashville.
Click here to see a video about plasma exchange.

Saturday, May 7, 2011

A Day in the ER

I spent most the of day in the ER at Memorial Hospital in Chattanooga. Dizzy, pressure in head, vision problems. Everything checked out OK--no blood clots from the vascular catheter. Just another part of my problem. Home and resting.

Sunday, May 1, 2011

Ringgold Tornado

Our town was devastated by a tornado last Wednesday.  Our thoughts and prayers are with those effected and involved in the recovery effort.

You can find out information about the April 27, Ringgold tornado on my FaceBook profile.

https://www.facebook.com/profile.php?id=100000803707408

Friday, April 29, 2011

Cathy's Blog - Thursday, April 28

Mornings start early here and by 7:00 AM Kerry was on his way to plasma exchange. He still does not feel like writing. His breakfast came as soon as he left so since he was not here . . . I had to eat it. It was a right fine breakfast with no additional cost.

Wednesday, April 27, 2011

Cathy's Blog - Wednesday, April 27

Today is Wednesday, April, 27, 2011 and we are at Vanderbilt Hospital for Kerry to receive his third round of Plasma exchange. This will make a total of thirteen individual exchanges. We had good weather for about half of the trip then the bottom fell out: thunder, lightning, raining cats and dogs. On the way here, the wind was blowing really hard and rain was blowing all over the place.

Sunday, April 24, 2011

Plasma Exchange Again

I will be admitted to Vanderbilt again for a few days of PLEX.  This time they will install a tunneled catheter that can remain in place for several week.  After the initial few day inhospital, I will go back every two weeks for a one day, outpatient exchange.

I had another bad headache this morning.  Today was the first Easter Sunday I missed at church.

Thursday, April 14, 2011

Vanderbilt Appoint Update

I had a really good visit with Dr. NR at Vanderbilt yesterday. She is the one who did the workup on the possible lymphoma last year. The good news is that these lumps are caused by all the prednisone I have been taking. Nothing to worry about!

Monday, April 11, 2011

Rough Sunday

Sunday was not a real good day for me. Lots of nausea and a bad headache. Feeling some better today. Appointment with Chattanooga Pulmonologist today. Appoint with Hematologist/Oncologist at Vanderbilt on Wednesday to check the lumps in my arms.

Friday, April 8, 2011

Thank You!

Thanks to everyone who made this a special birthday for me. It was great.

Thursday, March 31, 2011

Appointment Update for March 30, 2011

I had a good, long appointment at Vanderbilt with my neurologist yesterday. We made some changes to my medication to help with weight and pain.

Sunday, March 27, 2011

Condition Update, Six Weeks after 2nd, 4 day series of IVIG

My disability application through Guidestone/Unum has been approved. The final effective date will be April 6, 2011.

Friday, March 25, 2011

Breathing Problems

I have had a difficult time breathing this week. My PC Dr. said my lungs are clear and my EKG is normal. My Pulmonary Dr. said my lungs are still clear and that my problem is definitely my respiratory muscles. I will undergo another sleep apena test tonight (03/25) to see if I need to upgrade from a CPAP to a BIPAP. A BIPAP works with different in and out pressure to help people with neuro-muscular disease breath easier.

My next blog with be after the Vanderbilt trip on next Wednesday.

Wednesday, March 16, 2011

Blood Pressure

My blood pressure has settled down to more normal levels now. Instead of 200/100, it is now 135/85 with medication. But my orthostatic hypotension (OH) problem is back. OH is when blood pressure drops when I stand. Several times this past week I have became very faint and dizzy when I stood up. The solution--stand up very slow and give my blood pressure time to adjust.

Sunday, March 13, 2011

Sunday Update, March 13, 2011

I was able to go to church today for the first time since January 10. What a great day of worship and wonderful message by Bro. Jim. It was good to be in the House of the Lord. Thanks to everyone for their continued prayers.
I am still fighting the headache. Every time I stop the medication the headache comes back. So I will just float on the clouds for awhile longer. Hydrocodone, Promethazine, and Benadryl are wonderful things when needed.

Wednesday, March 9, 2011

FBC Newsletter, March 2011

Since my last newsletter article, I underwent a second round of four-day IVIG infusion through the outpatient infusion center at Erlanger. IVIG is good antibodies collected from thousands of individuals who give blood. The good antibodies are then cleansed and prepared for people who are suffering from auto-immune diseases. The theory is that the good antibodies will attack and destroy the bad antibodies in my body. So far, the IVIG has not been effective for me.

Wednesday, March 2, 2011

IVIG Update March 2, 2011

It has been over a week since I completed the second series of IVIG treatments. The first round was in late December 2010 and the second round was in mid-February 2011. I should be near the maximum effect of the IVIG treatments at this point. So how am I feeling?

Wednesday, February 23, 2011

Quick Update

Today is Wednesday, February 23.  The IVIG treatment seems to have helped my walking somewhat.  That is good since I feel more steady on my feet.  But, my breathing and vision are no better--yet!

Saturday, February 19, 2011

Headache

The IVIG headache is getting worse tonight.  This happened last time also.
Oh well, time for hydrocodone.

Hope everyone has a good day a church tomorrow.

Friday, February 18, 2011

IVIG Complete

I finished my fourth day of IVIG infusion today. Things went well with the only side effect of a headache. Thanks for your continued prayers.

Thursday, February 17, 2011

Three Days of IVIG Complete

I have completed three days of IVIG with no problems or side effects.  That is great. I will complete the treatment on Friday of this week.  Now I am praying that it will be very effective on my condition.

Monday, February 14, 2011

IVIG Starts 02-15-2011

The insurance problem is fixed.  I will begin four days of IVIG on Tuesday, 02-15

Friday, February 11, 2011

UPDATED IVIG Delay or NOT!!!!

Well I was scheduled for IVIG next week, but my insurance will only pay for one treatment every three months. Something may get worked out for next week, but it looks like I will have to wait until March 21. These treatments cost about $12,000 for 4 days infusion of one dose of medicine.

Wednesday, February 9, 2011

Second Round of IVIG beging February 15, 2011

I just received notice about beginning my second round of IVIG next week at the Outpatient Infusion Center at Erlanger Hospital. I am scheduled for treatments Tuesday through Friday. I am really ready for this to see if it helps my breathing and vision.

Newsletter Article for February 2011

It has been about one month since I began my medical leave. I have focused on resting and recovery. It is difficult for me to really do nothing, but I am trying to comply. I am on two additional medications at present and will probably undergo another round of IVIG soon. Please continue to keep my recovery in your prayers.

2011-02-09 Hair Changes

Friday, January 21, 2011

Extended Medical Leave Begins

It has been a while since I blogged, so this will be a long blog. I also plan to do another documentation video today, so check my YouTube Channel.

Saturday, December 25, 2010

Merry "White" Christmas

This is a first for us.  Hope everyone has a great Christmas.

More on my IVIG treatment later
Also, check back for video from the Christmas Eve Communion later.

Click Here to View my White Christmas 2010 Video

Sunday, December 19, 2010

Medical Leave

This morning I announced I will be taking an extended medical leave beginning January 2010. That was a very hard thing for me to do. But, my neurologists says it is time to stop and let my body have a chance to heal. I am--at least I will try to stop.

Tuesday, December 14, 2010

IVIG Update

Still waiting on final insurance approval before starting IVIG. I hope to begin Wednesday. I will post an update when I get final word

Thursday, December 2, 2010

Appointment Update

Here is a quick update of my Vanderbilt appointments yesterday.

Tuesday, November 30, 2010

Vanderbilt on Wednesday, December 1

Back to Vanderbilt tomorrow (12/01/10) for a cardio-pulmonary function test and appointment with neurologist. I'll report later.

Thursday, November 25, 2010

Thankfulness

Thankfulness Blog

KRB -- I am thankful for all the blessing of this past year.

Thursday, November 18, 2010

Vanderbilt Pulmonology Update

I met with Dr. Tolle at Vanderbilt Pulmonology today. He is a very nice doctor. He listened to Cathy and me, asked questions, did a thorough review of my records and recommend some additional pulmonary function testing (PFT).

Wednesday, November 17, 2010

I have an appointment with Vanderbilt Pulmonology on Thursday (Nov. 18). While updating my medication, I noticed that I could almost open my own pharmacy. This is what I take daily.


I will update the appointment results later this week.

Are You Thankfu?

I know we all go through some very difficult times and circumstances. I have also observed a sense of "thankfulness" among people who experience suffering. That spirit of thankfulness seems to encourage others.

Monday, November 15, 2010

2010-11-15 Video and Blog -- October Plasma Exchange Report -- Thirty Days after Exchange

Click Here to View my 2010-11-15 Plasma Exchange Video

It has been one month since my second series of plasma exchange (PLEX) treatments at Vanderbilt. The treatments did seem to help in some areas, but not in others. Since I have several autoimmune/neurological issues happening at the same time, PLEX may or may not help all my symptoms. The four main diagnoses which fit my symptoms are Myasthenia gravis, small fiber neuropathy, autonomic neuropathy, sensory-motor axonal neuropathy.

Thursday, October 28, 2010

2010-10-28 Plasma Exchange Report Thireeen Days Out

It has been thirteen days since I completed my PLEX (plasma exchange). My strength and stamina are still holding on OK. Normal walking, Toe-to-toe and walking on my heals is still OK.

Friday, October 22, 2010

2010-1017 Mestinon Effects

Click Here to View my 2010-10-17 Mestinon Effects Video

One Week after Plasma Exchange in October 2010

It has been one week since I completed my second five days of plasma exchange (PLEX) at Vanderbilt. It was worth it! Thanks again for your prayers and support.

Several doctors, health care professionals, and health insurance case manager(s) are keeping up with my blog because of the constellation of symptoms and diagnoses. I want to document as accurately as possible what is happening at each stage of my condition in hopes that others may be helped through my experiences.

Friday, October 15, 2010

Last Plasma Exchange, October 15

It is 7:20 AM and I am in the Apheresis Unit for my last plasma exchange. I should be back in my room around 11:00 AM. We will head home after they pull the vas-cath out of my neck. The pull does not hurt, but the pressure to stop the bleeding does. They apply a lot of pressure to my jugular for about 15 minutes. Ouch!

Thursday, October 14, 2010

Plasma Exchange Update, October 14

We talked with Dr. CL around noon today. He is pleased with the progress I am making with the plasma exchange. It does help, but for how long?

I am still a "unique" case (OK, use weird if you want too). All of my current diagnosis are still valid, but not text book. The diagnosis are the best fit for what is happening to me.

Long-term is our concern now, so here is the game plan.

Cathy's Update for Thursday, October 14

The day started early again; plasma exchange at 7:00 AM and back in the room at 10:45 AM. Treatment is going well with no reaction to the albumin. They are not giving Kerry FFP (fresh frozen plasma) because of the reaction he had in March. He is getting a synthetic albumin for his blood liquid.

2010 10-14 Thursday Plasma Exchange

Click Here to View my 2010-10-14 Thursday Plasma Exchange Video

Wednesday, October 13, 2010

Cathy's Report, October 13, 2010

Today is Wednesday, October 13, 2010. Kerry left at 7:00 AM for his treatment. I ate his breakfast--a slice of bread, grits with no salt (heart healthy), and nibbled on the pears. I sent back the fat-free skim milk. Grits are one of those food items you almost would rather not eat without salt. The dietary staff sent a packet of Mrs. Dash Seasoning Blend©. But I am here to tell you that is not something you want to eat on your grits. The spice packet would go well with chicken perhaps, but not grits! Just to try it, I sprinkled a tiny amount, stirred it in, and bravely took a tiny bite. It was Yucky! So, I will not try that again. However, breakfast didn't cost me anything, so that was good.

2010 10-13 Wednesday Plasma Exchange

Click Here to View my 2010-10-13 Wednesday Plasma Exchange Video

Tuesday, October 12, 2010

Cathy's Blog for Tuesday, October 12

Last night we lost one room-mate and gained another one. At 11:30 PM, the new room-mate promptly turned on the TV. It was a rough night. The room mate promptly turned on the TV. And, so it went. The “chair bed” for family, (and I use the term loosely) should be re-thought. It is a “lounge type” chair and

2010-10-12 Monday and Tuesday Plasma Exchange

Click Here to View my 2010-10-12 Monday and Tuesday Plasma Exchange Video

Monday, October 11, 2010

Cathy's Blog for Monday, October 11

We are finally in a room!

We had an early start this morning at 3:00 AM when the clock went off, left home around 4:00 AM and arrived here at 7:00 AM Georgia time. We had time to kill so we sat in the waiting room and went to Radiology to register around 6:30 or 6:45 AM Georgia time.

Saturday, October 9, 2010

Five Days at Vanderbilt Medical Center next Week

This Monday October 11, I will be admitted to Vanderbilt Medical Center for another five day plasma exchange. I am so ready for this treatment. Over the last few weeks, my condition has worsened. Even though I am on medication and lots of prednisone, my body is still producing unknown antibodies which continue to attack my nerves and muscles.

Tuesday, September 28, 2010

CT Scan Negative

My CT Scan came back negative.

This does not really surprise me since this has been the pattern of my illness. As far as I can tell, the negative CT means that my chest pain and breathing problems are related to nerve damage and muscle/diaphragm weakness. I am grateful for a negative scan, but it would be less frustrating if doctors could find and fix something tangible.

Friday, September 24, 2010

CT Scan Today - Updated

I am having my CT Scan at 2:00 PM today (Friday).

In the last 24 hours, I have had 210mg of Prednisone, 2 Pepcid, 2 Prilosec. At one today I take 150mg of Prevacid, and 50mg of Benadryl--all because I am allergic to the IV dye.

Wednesday, September 22, 2010

Exhausted

The last few days have not been too good for me. Fighting major exhaustion, chest pain, and breathing problems. Sunday was a long day and my voice began giving me more problems.

Thursday, September 9, 2010

My Day with Myasthenia Gravis

I get out of bed around 6:00 AM every morning. But the whistling of my CPAP mask and my tingling, aching muscles awakened me much earlier. Time to take my first handful of medication. I am careful to take the right pills at the right time. Taking so many pills is a little (really a lot) disconcerting--I have become like my parents were with all their pills.

Monday, August 30, 2010

What Is Happening Now

Medical Update
In my last blog post, I talked about chest pain/tightness and stopping my medication. After a week without Mestinon, Dr. Lee advised me to start taking it again. I did and it sure helps. He thinks the medication is causing my chest discomfort. Therefore--another Dr. visit.

Friday, August 20, 2010

Condition Update / Book Finally Published

Sorry I have not blogged for a while. I have been busy with a few other issues.

Saturday, August 7, 2010

eBook is Published Today

My book has published on Smashwords and Amazon in eBook format. The paperback will be ready soon. You can preview 20% of the book on Smashwords and a similar amount on Amazon.

Thursday, August 5, 2010

Healing Prayer Service

Come, let us return to the LORD. For He has torn us, but He will heal us; He has wounded us, but He will bandage us. He will revive us after two days; He will raise us up on the third day, That we may live before Him. So let us know, let us press on to know the LORD. His going forth is as certain as the dawn; And He will come to us like the rain, Like the spring rain watering the earth. Hosea 6:1-3

Wednesday, July 28, 2010

Myasthenia Gravis Update

The new medication for myasthenia gravis is helping somewhat. I am not as fatigued and exhausted as I was last week. Now, I can go until about 1 PM without much problem. I still need lots of rest, I can tell very much when I am not rested. The Mestinon works and helps my strength, but wears off before 4 hours is over.

Friday, July 23, 2010

Positive Myasthenia Gravis Test!

We made a trip to Vanderbilt today (Friday, 07/23) for more testing with Dr. Lee. The particular test I had was a Single Fiber EMG (SFEMG). The test was done in two locations on my left arm. This is a very good test for diagnosing myasthenia gravis.

Thursday, July 22, 2010

Testing at Vanderbilt and other Updates

Cathy and I are making a quick trip to Vanderbilt on Friday, July 23. Dr. Lee contacted me this afternoon and wants to do a Single Nerve Fiber EMG to check on the myasthenia gravis in the morning. This test is 95-100% diagnostic in myasthenia gravis. We should know for sure after this test.

Monday, July 19, 2010

Book Update

If things go according to my plans and if Cathy and I finish proofing in time, I hope to have my book ready in August. I will post information when it is ready.

The title of my book is . . .

Body Betrayed: My Journey through Sickness and Faith

Sunday, July 18, 2010

New Video on Effects of Medication

Here is a video demonstrating the effects of the new myasthenia gravis medication.
This is in addition to what I posted in my last blog.

Saturday, July 17, 2010

New Medicine Update, Updated again!

Here is what I have noticed about my new medication. (1) It does work. (2) I can breather better and have more strength. (3) My vision is improved.

Myasthenia Gravis ?

This has been a difficult week for me. My breathing has become more and more of a problem. My fatigue is increasing. I have gained a surprising 14 pounds in 7 days without any change in eating habits. I am blowing up like a bullfrog. I have gained 32 pounds since Easter--and I honestly do not eat much at all.

Tuesday, July 13, 2010

Sleep Apnea - Update, July 13, 2010

I had my sleep study last night. I do have a mild sleep apnea, but nothing as severe as doctors were thinking. I will go back a try a CPAP machine later.

Thursday, July 8, 2010

Appointment at Vanderbilt

My followup visit with Dr. Lee was yesterday. He agreed that my walking, strength, and balance has improved with the plasmapheresis treatment in March.

Friday, July 2, 2010

New Video

Here is a video documenting my current sensation to needle pricks.
Don't watch if you are afraid of needles.

Thursday, July 1, 2010

Condition Update

I am still being evaluated by Chattanooga Heart Institute for my heart rate problems.

Tuesday, June 22, 2010

Heart Cath Update

The heart cath went well yesterday morning. I have NO blockages. That is great. The pressure between my heart and lungs was normal. This means I do NOT have pulmonary hypertension (PH). This is very great since PH is progressive and fatal. The heart cath is the definitive test for PH so we know I do NOT have PH.

Monday, June 21, 2010

Heart Catheterization

I will have a right and left heart catheterization on Tuesday, (June 22, 2010). I am to be at the Chattanooga Heart Institute at 6:30 AM.

Friday, June 18, 2010

Colonoscopy Update

The PET Scan I had in May indicated some "hot" areas in my colon which needed examination and possible biopsy. I had my colonoscopy today. Everything is fine, no problems, no polyps, no biopsy needed.
My next exam is in five years. More good news! Great!

Tuesday, June 15, 2010

Pulmonary Hypertension Workup

I had a good office visit with Dr. Warren at the Chattanooga Heart Institute yesterday (June 17, 2010). I was very impressed with Dr. Warren. He reviewed all the test: arterial blood gas, pulmonary function test, EKG, echo-cardiogram, and nuclear stress test. The test do indicate that I have mild primary pulmonary hypertension (PPH).

Friday, June 11, 2010

More Good News

I went back to my primary care doctor this morning for results of the last several weeks tests. I feel good about the results.

Wednesday, June 9, 2010

Some Good News!

I finally had some good news! The PET Scan on May 28, 2010 showed great improvement in the lymph nodes. The ones in my neck had reduced and size and intensity on the scan. The nodes in my chest did not look intense any longer. That is great new! It is good indication that my lymph nodes are not involved in cancer. Soli Deo Gloria.

Saturday, June 5, 2010

Waiting and Testing and Waiting Again

Last Friday (May 28, 2010) we made another trip to Vanderbilt. My insurance company approved the CT Scan, but not the PET Scan. At Vanderbilt, they planned to do the CT with contrast. Since I am allergic to the contrast, they could not do the CT. So, they did some talking--I hope with the insurance company--and did the PET Scan instead. I have not heard the results yet. Ain't life Fun!

Tuesday, June 1, 2010

Quick Summary of my Diagnoses

OK, here are the conditions I have been diagnosed with and a brief summary of how they effect me.

Sunday, May 30, 2010

My Observations

Here are some things I have noticed about my heart/lungs/pulse.

Saturday, May 29, 2010

ER at Memorial Again

This morning Cathy and I were getting ready to go to 1890's Days. After my bath, I began having trouble breathing and hurting in my back between my shoulder blades. My pulse rate was up to 120+. So, we went to the ER at Memorial Hospital.

Thursday, May 27, 2010

The Next Step

The next step for me was to go for a chest x-ray today in connection with the heart/lung problem. I had the x-ray today and it was normal.

Wednesday, May 26, 2010

Anniversary and New Symptom

It was exactly one year ago yesterday that I went to the Doctor the first time with neuropathy. It has been a long tough year for me and my family. But, God is good!

Friday, May 14, 2010

Quick Condition Update

This has been an interesting few weeks health wise. My heel began hurting in early May. After talking with my neurologist, he suggested I see a podiatrist.

Monday, May 3, 2010

Update, Monday, May 3, 2010

This has been a fairly busy week, or two, or three for me. I have preached two funerals in two weeks, made several hospital visits and had a lots of meetings. It always amazes me that we can go for weeks and no one dies or goes to the hospital and then suddenly that changes. I have been back to my regular work schedule for several weeks now. Usually that means about 50 hours a week, not counting home study. It feels good to be able to work again.

Saturday, April 17, 2010

Quick, Update April 17. 2010

Laela (our daugher-in-law) had a high school friend pass away this week. Cathy has been baby sitting in Forsyth for a couple of days. I worked about three hours in the yard on Friday and went down to help Cathy. I came back about 2:00 PM Saturday for Mrs. Polly Bookout's 90th birthday celebration. I took Cathy's advice and have not worked any on Saturday--well just a little bit to feed the goldfish--and have rested this afternoon. I should be well rested for Sunday. I am still fighting fatigue and my lower legs still hurt. But, overall still feeling OK.

Tuesday, April 13, 2010

Cathy Was Right!

I did overdo things this past weekend. She told you I did not have good sense about work, and she is correct. After preaching Sunday AM, I was so tired I slept a solid three hours Sunday afternoon. On Monday, I was still very tired and after an 11:00 AM meeting and a lunch meeting I went home about 3:00 PM and then slept another two hours. And yes, I still sleep at night. I am still tired this morning, but doing OK. I should have listened to her.

Sunday, April 11, 2010

Condition Update -- Sunday, April 11, 2010

My condition is basically the same as last week with a few exceptions. The main thing is I am now a year older--54 to be exact last April 4, Easter Sunday. I guess that makes me an Easter Bunny. Sorry 'bout that joke.

Sunday, April 4, 2010

Holy Week Meditation -- Sunday, April 4, 2010



Christ Is Risen

He Is Risen Indeed

Christ Is Risen

Condition Update -- Sunday, April 4, 2010

Today is Sunday, April 4, 2010 (my 54th birthday) and it has been almost one month since I began the five-day plasmapheresis treatment at Vanderbilt Medical Center. My last symptom comparison was March 21, 2010. I will follow the same format to compare January 23, 2010, March 21, 2010, and April 4, 2010. I will do the next comparisons after the CT/PET Scan sometime in April and then again just before my appointment with Dr. Lee on July 7, 2010.