Four Days after Outpatient Plasma Exchange at Erlanger

The Plasma Exchange (PLEX) is over and the jugular vas-cath is out!

A large two-port dialysis type vas-cath is inserted into the jugular vein and threaded down to near the heart-lung junction. It is then stitched in place for the duration of the procedure. One port on the vas-cath is for input and the other is for outtake.

Each plasma exchance procedure involves (1) pulling all the blood from my body, (2) separating the blood cells from the liquid, (3) throwing away the old liquid, (4) recombining my blood cells with new albumin, and then (5) pumping it back into my body. The entire process happens continuously and involves about 7 1/2 liters of blood. On the newer, faster machines the procedure takes about three hours. On the older machines, about six hours. This does not count the time it takes to hook me up to the machine and waiting on the albumin to arrive. It is a full-day process.

The exchange basically pulls everything (including medications) out of my system except blood cells. This really plays havoc with my medication blood levels.

After my first day of nausea, they pre-medicated me. I was given Tylenol by mouth, Benadryl and Phenergan directly into the vas-cath--what a rush. About half-way through the procedure I was also given Zophran and calcium as needed. It really helped!

Needless to say, that much "fluid shift" and medication puts one's body into shock. It takes me several days to recover. I have now had a total of twenty-seven PLEX treatments.

I had two really strange occurrences during this series of treatments.

During the 4th and 5th PLEX, my legs really jerked. On the 4th day, my left leg started jerking about 30 minutes into the procedure and jerked for about 30 minutes. On the 5th day, my left leg started jerking again at about 30 minutes and it jerked for about 1 1/2 hours. The RNs had no idea why. It was not a cramp. It was a jerk that spasmed and straightened my leg like I had been hit with an electric probe about every minute. This was the worse jerking I have had and was very apparent. I have jerked over the weekend, but not as bad.

I had a strange experience with my eyes on Wednesday while waiting on PLEX. I had a bright, white, jagged line develop across my field of vision. In both eyes, even with my eyes closed. Below the line, my vision was wavy--like looking down a hot road in summer. The line/wavy vision slowly rose up and went away. The left side of my visual field lost peripheral vision and my left field vision became dark and I could not distinguish items. The Nephrology docs evaluated me and did not see anything of concern at the moment, but said to go to the ER if it happens again. The whole experience lasted about fifteen minutes. My Vanderbilt neurologist has scheduled a Carotid Ultrasound and will followup on this issue.

My last chemo is scheduled for February 6.

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.

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.

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.

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.

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.

An individual was in active ministry when MG and other medical issues hit hard. Now their ministry is on-hold. I paraphrase their question as follows. "Why would God give me these talents for ministry and then take away the ability to use them?" I often wrestle with this question myself.

Here is some of my answer.

I was thinking about your question of God's will and your life. I could list all types of theological theorems, but sometimes theory does not really answer how we feel!

I thought of Biblical characters like Abraham, Joseph, Daniel, Paul, etc. They, unlike many others, had a very clear and directly personal, spoken word by God to them. They knew His will clearly!

Like so many others, we have not had God speak directly to us through a burning bush--but then we have heard through the Holy Spirit. We know what to do as believers through the indwelling Spirit. And honestly, from reading your story, it does not seem you had much problem doing His will.

The "Rub" comes when what happens to us does not match what we perceive His will to be, or in our case, the gifts, talents, callings, etc., now seem to be (for lack of a better word) useless.

It is OK to ask why! Maybe the struggle we face now in regards to God's will is not so much "why," as it is "what's next?" We shall see! And is not that the important part of faith and doing His will? For we walk by faith, not sight.

Quick Medical Update

My walking became more difficult this weekend. It feels like my legs do not want to move at the hip joint. They hurt and feel really weak. My breathing is no better either.

It may be time for another plasma exchange. I guess I need to contact my neurologist and set one up, but I just do not like have my jugular vein cut open again.

A Few Stats

Here are some stats since I started blogging on April 24, 2009.

Page views: 17,234

Reader from the following countries:

United States--13,676

Germany--457

Russia--297

United Kingdom--254

Canada--201

Australia--153

South Korea--147

Netherlands--138

Ukraine--103

Latvia--101

The most popular blog post is "New Video on the Effects of Medication" on July 18, 2010.

My videos on YouTube have been viewed 7,937 times and I have 23 video subscribers.

Thanks for all the support.

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.

In a later email, he suggested using my Bi-Pap during the day to help my thinking. I could be retaining too much CO2 in my system which would cause my daytime confusion; using the Bi-Pap should lower the CO2 level. I have been using the Bi-Pap during the day and it seems to help. Cathy mentioned this morning she thinks it is helping too. My thinking is still not where it was, but is better. This is good.

Overall, I am better from the restless-leg, cloudy thinking, and Zombification than I was in early December, but my breathing and vision are no better. My breathing my be worsening slightly. I could probably use another plasma exchange, but would rather wait and not pull any Cytoxan out of my body right now. This is not so good.

My next Cytoxan infusion is late January. So far, so good.

Thanks again for all the prayers and support.

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.

So many things happened to me so quickly in early 2009 it became impossible to keep all of those events in memory. I began by keeping a diary of events and medical records to codify my experiences and treatments. That diary grew into this blog and my first book.

I discovered that physicians do not have all-the-answers so many of us with serious medical conditions seek. I want physicians to hear from a patient's daily experience what living with autoimmune disorders is like. My neurologist, several medical students, other physicians, and my insurance company case manager read my blog and watch my videos. I truly hope it helps them understand and diagnose patients more affectively and effectively.

For thirty-five plus years of ministry, I offered advice and council to those experiencing tragedy and sickness themselves or in the family. Now, like Ezekiel, I sit where they sit. Were the words I offered to those individuals good for me now? I believe so! If there is anything to this "faith" that I have preached, it would surely sustain me now. It has and it will. I want people to know there is a reality to faith to help us live "a life well lived," even in the face of serious illness. If we are truly more than physical creatures—which I fully believe we are—then the spiritual component of life affects every fiber of our being and all that we encounter.

I decided to be open and honest about all I was experiencing physically, spiritually, and emotionally—even the questions I have. Sharing so openly is still difficult for me. But I do so in hope my experiences and insights will help others who are going through similar and trying circumstances.

Please feel free to contact me if you have any questions or comments.

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!

It is very frustrating not being able to do...practically anything. Two things help make that fact a little more bearable. First, I am not and never have been a stressed or depressed person. Second, I just don't feel like doing anything most of the time.

To be totally honest, my condition really frustrates me at times when I go to church. This is nothing against Jim or the staff--Jim is doing an excellent job. It is felt frustration that, "I should be me up there preaching, I should be up there leading the church, I should up there in charge, but I cannot because of this terrible disease!" OK, I'm human, very human. I acknowledge my feelings and am dealing with them. I know the Lord has a plan and purpose in all of this, I just don't know what it is. Until then, we keep moving forward doing what we know to do, trusting God for the future.

Through my book, blog, FaceBook, and other support websites, I have corresponded with numbers of individuals from all over the world suffering from Myasthenia Gravis (MG). Each person faces their unique struggle and challenges, but always against the common enemy of MG. I hope my own journey provides strength and encouragement for them as theirs does for me. It is still a journey through sickness and faith for me and I am sure learning a lot along the way.

I have learned to adapt to the pain, tingling, tremors, numbness of the small fiber neuropathy. The weakness of the Myasthenia Gravis is self-limiting. In other words, it stops you in your tracks whether you want to stop or not. The breathing and vision problems still plague me greatly. Not being able to breath because my lung muscles simply quit working is the most disabling thing of all. Like it or not, I can cope with all of these issues.

What I have the most trouble coping with is known as "emotional liability." As mentioned in previous posts, I may be developing an additional neurological condition called Pseudobulbar Affect (emotional liability). In simple terms, it means I have crying spells for no apparent reason. I am not depressed or sad, I just have waves of crying flood me four or five times a week. This is so not me! Each episode usually lasts from a few seconds to a few minutes--but it seems like an eternity. A trial of medication to treat this condition almost put me in the hospital over Christmas because it worsened my MG severely. What I dislike most about the "crying" is feeling totally out-of-control. On top of all this, "chemo brain fog" has set in too.

Cathy has been wonderful in taking care of me. She drives everywhere we go. She cuts grass, does the yard and house work (I am thinking about renting her out for chauffeur and lawn care services). She helps with all my medications and makes sure that I take care of myself. She can even figure out what I am trying to say when I can't find the right words to speak because of the brain fog. She is there for me and I really appreciate and love her. Kerrell and the girls have also been a blessing and help a lot.

Since January 2011, my medical expenses have totaled well over $300,000.00. Thank the Lord for good insurance! I have had: 120 grams of IVIG given over eight days of infusions, twelve plasma exchanges, numerous pulmonary function tests, echo cardiograms, sleep studies, EKGs, chest X-rays, a HiRes CT scan, multiple visits to several physicians, three days in the hospital, one emergency room visit, five Cytoxan chemotherapy infusions, and a partridge in a pear tree. I currently take fourteen prescription medications and have one more Cytoxan infusion scheduled in January 2012. At that time, my neurologist and I will decide the next best option, which looks like another six months of chemotherapy. My current condition is about the same as reported in my blog of Thursday, September 8, 2011.

Thanks again for all your prayers, love, encouragement, and support.

From Cathy:

This past year has indeed been a year for transition. Hard? Yes. Uncertain? Yes. Scared? Yes. I play the game of "What If," which is not a good game to play. What if the cars have mechanical problems? What if the couch falls apart when someone sits down? Who is going to help with the little things around the house that I can't fix since Kerry hasn't the strength to fix? This game of "What If" will certainly drive you to distraction, headaches, and emotional trauma.

I feel the struggle of Kerry's need to be up there preaching, chairing meetings, developing programs, working on budgets, directing staff, etc. I feel the displacement of being in a new situation myself. I am no longer the preacher's wife and do not have the clout I once had (Laugh Out Loud).

With all that has happened this past year, I needed to reduce my stress level. So at the end of December, I resigned my position and will look for one not quite so stressful (whatever that may be, LOL). I am concerned about my availability to be with Kerry if and when he needs me. Several times this past year I had to leave work early and come home because of medical issues. I have been working full-time for a temp agency and will be placed somewhere again soon, but I may ask for a part-time, or a very flexible assignment, that will fit with our needs.

I have ready many devotionals books which reinforce my belief that God is in control and He has allowed (not caused) this to happen in our family. Why? Only God knows; it is one of those Kingdom mysteries maybe to be revealed later. Right now this is where God has allowed us to be. As I told Kerry, "We don't understand this and certainly didn't want it, but as hard as it is on us, we know God has allowed us to go through this and He will see us through."

Thanks to all of our friends and family. Your concern and encouragement means a lot.

--Cathy

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!

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

Merry Christmas

Cathy and I wish each of you a very

~~ Merry Christmas ~~

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.

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.

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.

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!

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!

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.

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.

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!

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).

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.

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."

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.

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.

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.

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.

Chemo Update

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

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.

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. 

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!

Plasma Exchange Update

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

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.

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.

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.

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.

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.

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.

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.

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.

Next PLEX

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

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.

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.

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.

Condition Update & Future Plans

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

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.

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.

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

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.

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.

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.

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!

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.

Thank You!

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

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.

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.

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.

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 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.

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.

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?

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!

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.

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.

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.

IVIG Starts 02-15-2011

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

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.

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

2011-01-21 Myasthenia Gravis Update

2011-01-21 Effects of Mestinon

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.

Eight inches of Snow on January 10, 2011

Click Here to View my January 2011 Snow Video

RFBC Newsletter January 4, 2011

Dear Church Family:

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

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.

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

Good Article Link about Myasthenia Gravis

Click Here

Appointment Update

Here is a quick update of my Vanderbilt appointments yesterday.

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.

Thankfulness

Thankfulness Blog

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

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).

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.

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.

2010-10-28 Plasma Exchange Report Thireeen Days Out

Click Here to View my 2010-10-28 Plasma Exchange Report - Thirteen 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.

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.

2010-10-17 Two Days after Plasma Exchange

Click Here to View my 2010-10-17 Two Days after Plasma Exchange Video

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!

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

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

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

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.

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.

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.

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.

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.

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.

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.

Condition Update / Book Finally Published

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

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.

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

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.

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.

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.

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

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.

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.

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.

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.

New Video

Here is a video documenting my current sensation to needle pricks.

Don't watch if you are afraid of needles.

Condition Update

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

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.

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.

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!

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).

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.

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.

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!

Quick Summary of my Diagnoses

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

My Observations

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

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.

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.

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!

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.

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.

Video 04-19-2010

Click here to go to my Video Blog page to watch Video No. 9

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.

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.

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.

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.

Sunday, April 4, 2010 Video Blog No. 9

Click here to go to my Video Blog page to watch Video No. 8

Holy Week Meditation -- Saturday, April 3, 2010

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 Scripture you will find more time when God is silent than when He speaks. In these times of silence, God still expects faith and obedience from His people.

Holy Week Meditation -- Friday, April 2, 2010

Today is Good Friday, April 2, 2010. How ironic to call it "good" when the Lord of Life died. But, die He did; willingly on my behalf, and yours too. That is more than enough to meditate upon this day. Soli Deo Gloria.

Holy Week Meditation -- Thursday, April 1, 2010

Today is Maundy Thursday (April 1, 2010). Tonight we will celebrate Holy Communion among a church full of believers. For many Baptist, Maundy Thursday is an unfamiliar term. "Maundy" means commandment and a Maundy Thursday service focuses on the last commandment Jesus gave His disciples before His crucifixion--love one another. "A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another. By this shall all men know that ye are my disciples, if ye have love one to another." John 13:34-35 (KJV)

Holy Week Meditation -- Wednesday, March 31, 2010

There is a suffering that hurts us deep-down inside our very soul; to the very quick of our being. For whatever reason, it is a lonely and confusing time where even one's own thoughts are jumbled and often scarce. Friends and family are still present with us and try to sympathize, as best they can, with our suffering. But, there are times and occasions when you feel totally alone even in the midst of crowds. It is in these deep, dark times of suffering, that our souls only refuge is God.

Why Meditations on Holy Week?

Why am I doing meditations on Holy Week in a blog about neuropathy? Because we all need hope and assurance that the sufferings of this life are not forever. The events of the crucifixion and resurrection remind us of that fact.

Holy Week Meditation -- Tuesday, March 30, 2010

We looked at suffering in connection with sickness yesterday. Now, let us look at suffering in connection with hardships. Let me cast a very wide net here so hardships include issues like: burden bearing, oppression, mistreatment, disasters, crisis situations, persecution, family/relationship problems, money problems, job problems--you get the point!

Holy Week Meditation -- Monday, March 29, 2010

Yesterday (Sunday, March 28, 2010), we celebrated the events of Jesus' Triumphal Entry into Jerusalem. That was a time of joyous celebration and exuberance--the King had come! But, it would not be long before joy turned into sorrow and celebration into suffering. As we prepare our hearts for Easter and reflect upon the events of Holy Week, allow me to share a few meditations on suffering.

Sunday, March 28, 2010 Video Blog No. 7

Click here to go to my Video Blog page to watch Video No. 7

Condition Update, Sunday, March 28, 2010

It has been three weeks since I began my week of plasmapheresis. Some of my symptoms are improving, some are not. Right now, I do not feel any symptoms are getting worse. We may have stopped the progression of symptoms! Only time will tell for sure. The treatments were worth the hospital stay.

Lights, Tunnels, and Model Trains

My skin biopsy results came back from testing at Johns Hopkins. Dr. Lee and I were both surprised to discover my small nerve fibers were nearly normal; just some swelling. Wow! From all I can gather, everyone was expecting to see severe damage. Just another example of me not being normal--weird if you prefer.

Hang in There!

I am beginning to receive comments and emails from various people. Over 1,000 have accessed this blog so far. Thanks.

Condition Update, Sunday, March 21, 2010

Click here to go to my Video Blog page to watch Video No. 6

Then and Now, Sunday March 21, 2010

Today is Sunday, March 21, 2010 and it has been almost two weeks since I began the plasmapheresis treatment at Vanderbilt Medical Center. I thought it would be a good idea to compare my condition now with my condition during the months before treatment. I have used a "then and now" format to share this information. The "then" statements were taken from previous posts. So, here we go with a symptom comparison.

Latest Update and Additional Thoughts

Just a quick update on my condition before I share some additional thoughts. I am slowly regaining some strength. My overall pain level is down somewhat, but my lower legs really hurt. My walking is still slowly improving, but I still tire easily. My peripheral vision seems better. I will check for pin-pricks early next week. I am excited about the improvements. Thanks again for your prayers.

Condition Update, Visits, and Hard Questions

I have been home for a few days now and Cathy has kept me fairly close to the house so I would not "over-do-it." That is a good thing because I get tired easily and I don't have good sense when I'm left on my own (according to Cathy). I do seem to notice a slight improvement in my condition and I am encouraged and thankful about that. Time will tell how effective the treatment will be.

Sunday, March 14, 2010

Morning Worship, Being Nice, and Video Blog

Thank You, Thank You Very Much!

I want to say a word of appreciation to the staff at Vanderbilt Medical Center for their care, treatment, and professionalism during the last week. I did not think to write down the names of individuals until just before I left the hospital, so I cannot list all the individuals by name. Please know that you are all appreciated.

Guest Blog by Cathy, Saturday March 13, 2010

Some have wanted to know how I am coping and what my thoughts and feelings have been over these past few months. This is difficult for me, because I have to expose “Cathy” and sometimes she can be a complicated person. Some of you already have a glimpse into Cathy and I suppose you know by now, that she is not the know all; have all; be all; and do all that some expect of a pastor's wife.

So, What's Next?

I am home recovering from a week in the hospital. It is amazing how tiring lying in bed can make a person. So, what is next? We wait and see!

We Are Home!

I went for my treatment about 7:00 AM this morning and made it back to my room about 11:30 AM.  Today's treatment was quicker because I was hooked to a newer, faster machine.

Last Day at Vanderbilt!

It is about 5:00 AM here in Nashville. My bed squeaks and sounds like a flock of geese flying high in the sky—I don't like to sleep with geese over me. So, I am up and waiting to go to treatment. This will be number five in five days.

Thursday, March 11, 2010

I went for treatment about 7:15 AM this morning. I came back to the room at 12:30 PM. It takes longer for the procedure for big people. I received two more units of the FFP, which I reacted to on Tuesday. I did not have any reaction this time because I was pre-medicated.

Guest Blog by Cathy

Hello again from the Vandy Hotel, Resort and Spa:

Wednesday, March 10, 2010 -- Updated 7:40 PM CST

I had a somewhat good night, but things sure get busy here in the morning. It is 7:20 AM and two doctors and three nurses have already been in—everything but breakfast!  Correction: 7:30 AM three doctors, and an additional nurse, and breakfast just came.

Special Guest Blogger, Tuesday, March 9, 2009

Hello Everyone from the Vandy Hotel, Resort and Spa:

Tuesday Video Blog

Click here to go to my Video Blog page to watch Video No. 3

Monday at Vanderbilt (Updated 7:40 AM Tuesday)

We arrived at the hospital about 7:30 AM. By the time we parked and walked to admissions, it was about 8:00 AM. They took me back around 8:15 and my procedure began about 9:00 AM.

We're Off to See the Wizard . . .

Yesterday and today, we were busy packing for a week at Vanderbilt.  Now you need to understand that I would be fine with just a tooth brush and one change of clothes.  Not Cathy!

My Blog and Story Become Public

By now you know I have been writing this blog for some time and I finally decided to make it public. Welcome. I think you will find the information interesting and scarey at the same time. We never know what can happen to us.

An Example of My Small Fiber Neuropathy

I have tried to explain what my loss of sensation is like. That's hard to do. They say a picture is worth a thousand words, so I decided to show you just how little I feel pain.

Going into the Hospital at Vanderbilt Soon

I am scheduled to arrive for a long stay in Vanderbilt Medical Center from March 8, 2010 through March 13 (insurance permitting). Up to this point, all medication has been to help control symptoms and all procedures have been diagnostic. Now we begin treatment. My March 9th appointment has been cancelled.

A Bad Day

Sunday, February 28, 2010 was not a good day for me. I was very tired and hurt a lot more than usual. I was a lot more shaky and tingly than I have been for a few weeks. By the time I finished the early morning service, I was wiped-out. I knew I could do the second service, but there was no way I could do the 6:00 PM service. I cancelled the 6:00 PM service.

The First Treatment Plan

Cathy and I talked about the treatment options suggested. We evaluated and weighed the pros and cons. Here is the current plan.

Email, 02/26/10

I spent some time today e-mailing with my neurologist, Dr. Christopher Lee. I wanted to confirm what I understood the hematology/oncologist to say. My thinking is correct. My hyperactive lymph nodes are making an unknown antibody that is attacking my nerves. Although this is not cancer, the effect on my nerves is the same and they are slowly, progressively getting worse.

Finally, A Reason for My Small Fiber Neuropathy

In my last newsletter article (February 17, 2010) I wrote the following . . . "Right now, the doctors think I have a “hidden” cancer. The theory is that my body cannot tell the cancer from nerve endings, so when my body attacks the “hidden” cancer it also attacks and kills my nerve endings." All indications were that I had lymphoma--a cancer of the lymph nodes.

Second Hematology/Oncology Appointment Soon

On Wednesday (February 24, 2010), I will meet with Dr. Nitshitha Reddy for the second time. Dr. Reddy is an Assistant Professor of Hematology/Oncology at Vanderbilt University. One of her special interest areas is lymphoma. She is fairly certain--from reading the PET Scan and my other medical information--that I have some type of lymphoma. A lymph node biopsy is the only way to properly diagnose lymphoma. That is why an axillary biopsy was ordered and performed last Wednesday (February 17, 2010). The pathology report should be complete by the time we meet.

Axillary Lymph Node Biopsy

Yesterday (February 17, 2010), I had three enlarged lymph nodes removed from under my right arm. My surgery was scheduled at 2:00 PM, but did not begin until just before 3:00 PM. I remember getting into recovery about 5:45 PM. It was a long day for us all.

FBC Newsletter, 02/17/10

Cathy and I continue to thank you for your prayers and support as I am continuing to undergo testing. We can really feel the difference prayers make. I also appreciate Dr. Dan Whitaker filling in for me for a few Wednesday evenings.

First Appointment with Vanderbilt Surgeon

I had my first visit with Dr. William Riordan. He is a professor of General and Trauma Surgery at Vanderbilt. He hoped the lymph nodes would be reached with just a local anesthetic. But, they were too deep and I would need general anesthesia for the procedure.

First Appointment with Vanderbilt Hematology/Oncology

I had my first appointment with Dr. Nitshitha Reddy. She works in the Hematology/Oncology, Stem Cell Transplant Unit. She had reviewed all of my material and was very open and helpful in talking about what she though was wrong with me. She showed us the actual CT/PET scan images and explained what the different colors on the image meant.

Additional Symptoms as of January 23, 2010

These additional symptoms had developed by January 23, 2010. The condition is now definitely evolving to include my autonomic nerves.

Fine Needle Aspiration with Core Biopsy

Because my CT/PET Scan was abnormal, Dr. Lee consulted with others in the neurology and hematology/oncology departments. It was recommended that I under go a lymph node biopsy. The simplest way to do the biopsy was under local anesthetic with a procedure called fine needle aspiration.

CT/PET Scan

Dr. Christopher Lee and Dr. Jun Li both believed that because of the complexity of my symptoms, something more than just regular peripheral neuropathy was happening. They talked about the possibility of a paraneoplastic process happening in my body. They believed a "hidden cancer" was causing my problems. Now, we had to look for the cancer.

Summary of Symptoms as of December 2009

This is a list of the symptoms I provided to my primary Vanderbilt neurologist (Dr. Lee) during my visit in December. The list is very extensive and covers a variety of symptoms which present with many, many different diseases.

EMG/NVC with Dr. Li

A technician began the testing with the NVC exam, screenings for Myasthenia Gravis (MG) and other muscle related diseases. I had a slightly delayed response on the test, but not enough to classify my symptoms as MG or other muscle problems. Other general NVC testing showed slightly slow nerve conduction.

First Appointment with Dr. Jun Li

I have been blessed to have excellent doctors at Vanderbilt. Dr. Christopher Lee consulted with Dr. Jun Li and set up an evaluation for me in Dr. Li's CMT (Charcot Marie Tooth disease) clinic. Dr. Li is well known and recognized as an expert in heredity neuropathy. Medical and family histories were taken. The neurological exam was extensive. The entire visit took over one hour.

Email, 11/15/09 about CMT Clinic

Dr. Lee: In our last visit, you mentioned the possibility of taking part in Dr. Jun Li's CMT clinic. I know the lab results will not be back for a few more weeks, but I think it would be good to be part of Dr. Li's clinic if applicable.

Second Appointment with Vanderbilt Neurology, plus EMG/NCV Study

Dr. Lee and I had several email and phone conversations since my first visit on July 13, 2009. We had arranged for my checkup and additional testing to be done on the same day. I met with Dr. Lee in the morning. He was well aware of my current symptoms and was uncertain about just exactly what was happening to me. I had a constellation of symptoms which matched several disease processes. I could have one new disease or a combination of several.

Side Effects and Suicidal Thoughts

This is a very serious email correspondance with Dr. Lee. I experienced something this week I had never experienced before and hope to never experience again. I share this with you because I now know what it is like to be "taken over" by medication, if only for a few days.

Rheumatology Appointment

In September, 2009, I also saw a very well respected rheumatologist. This appointment was also scheduled before I was accepted into Vanderbilt, and I wanted to make sure my problem was not rheumatologically connected.

A Word about First Baptist Church, Ringgold GA

By the first of September, I had improved enough to no longer need the walking stick. It was still hard to make hospital visits and the fatigue made spending an entire day at the office almost impossible.

FBC Newsletter, 08/18/09

Cathy and I want to thank you for your prayers, support, encouragement, friendship, cards, food, and love during these last several weeks. It is a very difficult thing to go from good health one day to losing one’s strength and not being able to walk a few days later. I want to share what is happening to me with you for a couple of reasons. First, knowing what is happening will help you pray specifically for my healing. Second, by keeping you informed of my condition, you are hearing it straight from the source. Third, we all go through difficult times in our life and need to draw encouragement and hope from each other as we watch God move in our life.

Do I Seem Frustrated with the Chattanooga Neurologist?

I have respect for those in the medical profession. I know the amount of time and dedication it takes to get where they are. There are some good doctors, there are some who are in it for the money, there are some who are not that good.

If You Don't Believe It -- It Won't Work! Say What?

This doctor visit was scheduled before I was accepted into Vanderbilt. I decided to keep the appointment to see what this Chattanooga neurologist would say.

Email, 07/21/09

Dr. Lee and I have emailed about my blood work. As usual, my blood work was fairly normal, but my B6 level was a little low. It is now time to start taking some B6 and B-complex supplements.

Glucose Tolerance Testing

I had a glucose tolerance at LabCorp at Erlanger Hospital on Tuesday, July 14, 2009. The procedure is simple. You fast the night before and have a fasting blood test drawn in the early morning. You drink a measured sugar solution and wait. Blood is then drawn at regular intervals and the glucose level is measured. The level of blood sugar over time diagnoses diabetes or glucose intolerance. The tests would later come back negative.

First Appointment at Vanderbilt Neurology

I had my first appointment with Dr. Christopher Lee at the Vanderbilt Neuro-Muscular Clinic in Nashville, TN. Everyone there was great. The exam was very thorough. He listened to Cathy and me, asked a lot of questions, and reviewed the medical reports I had brought from the last few weeks.

July 4th Week 2009 -- My Symptoms Explode

Randell (my son) and his family came up to spend the 4th of July holiday with us. During that week, every symptom I had exploded and became much worse. I still required a cane to walk.

Emergency Room at Memorial Hospital

By late morning on Thursday, July 2, 2009 I decided to go back to my regular physician. He was out of the office that day, but his replacement was able to see me. He was an older doctor, very nice and friendly. He took one look of me, did a quick examination and said that I needed to go to the emergency room now. "Don't be surprised if they keep you in the hospital. I think you have a condition called Guillain-Barre Syndrome (GBS)." This doctor was the second person to diagnose me with possible GBS.

The Days between Erlanger and Memorial

Over the next few days, in addition to the new symptoms reported to the neurologist on June 22, 2009, my eyes started to hurt. I could not move my eyes--side to side or up and down--without extreme pain. I have never experienced this before.

Physical Therapy Evaluation

I went for a physical therapy evaluation at the North Georgia Health Care Center in Ringgold in, 2009. One of my current church members is a therapist there. She evaluated my strength and balance. It seems my major, large muscle groups are weaker than they should be. My balance is also off. This is a condition called proprioception.

Neurologist or . . . ?

My second visit with the neurologist was June 22, 2009. I had been out of the hospital since Thursday.

FBC Newsletter, 06/19/09

By now you may have heard that I have been in Erlanger Medical Center for a few days. I was released late Thursday and am doing much better.

Admitted to Erlanger Medical Center

After being admitted to the Erlanger Medical Center, I was moved to my room in the early morning hours. By now, the ER doctor had given my case over to a hospitalist and hospital neurologist (the neurologist I had just seen was unavailable--it figures). The hospitalist became the primary doctor for my admission.

Emergency Room at Erlanger Medical Center

We arrived at the emergency room early afternoon. I was barely able to walk in with Cathy's help. It was uncomfortable to sit still, so I alternated between sitting and standing. The triage took me very quickly. After an initial assessment, it was not long before they took me back into an exam room.

On a Slippery Slope to . . . .

Between my neurological visits, my body took a huge turn downhill. Walking become more and more of a problem. I had to use the handrails to pull myself upstairs. While I hurt and ached some all over my body, the majority of the problem was in my legs. I still was insensitive to pinpricks.

First Chattanooga Neurologist

My first visit with a neurologist went fairly well. He asked a lot of questions about my family history and medical history. He did a preliminary neurological exam and ordered blood work. My return appointment would be in two weeks. I told him I felt like I had just ran a marathon. Possible diagnosis include: polymyalgia, arthralgia, myositis, neuropathy, or CIDP. It would take more tests to determine the actual process.

First Symptoms Noticed

On Memorial Day, Monday, May 24, 2009, I noticed a large pimple on my left knee. I lanced it with a sterilized needle. It did not hurt at all, no matter how deep I pushed the needle into my skin. That's strange! I discovered that I could not feel needle pricks in many areas of my lower legs. Cathy tried sticking me several times also. I think she enjoyed it--just kidding. I could not feel pinpricks in my lower legs, but could feel touch and pressure, hot and cold, just nothing sharp.

Trout Fishing and a Gouged Leg

While I enjoy fishing of any type, trout fishing may be my favorite. It is relaxing and peaceful to walk in mountain streams, observing the scenery, listening to the sounds of nature, and catching fish.

So, the Journey Begins . . .

My world drastically changed when I cut my leg while trout fishing on Tiger Creek, Keith Community, Catoosa County, Georgia in late April, 2009. This is my story.