Body Betrayed | Body Disabled

Welcome to My Story ~ Updated 07/25/16

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Monday, July 25, 2016

Thoughts about Death and Dying

I was shocked by the sudden death of Jen Walsh when it was announced on Thursday. For me, I lost a good Facebook friend and it brought to memory the many others who have lost their fight against MG. In situations like this it can even cause us to think about our own mortality, if only for a moment.

Many of you know I served as a pastor for many years. I want to say a few words about the loss of a loved one (death) from a christian perspective. In doing so, I will reprint some edited words from my first book.

Nobody wants to die. But facing the possibility of death—and one day facing death itself—is something we all will eventually do. I like what one of my former pastors said, "You are not ready to live until you are ready to die." How true.

I remember the first time I watched someone die. It was a fascinating and amazing experience, but nothing like I expected. I guess I was expecting something dramatic like we see in movies or on television. But instead, they just quietly breathed their last. No trumpets, no fanfare, no panic, no mystical experience, no final wordy soliloquy. They just simply went to sleep and woke up in the presence of God. Wow!

Not everyone has a healthy attitude toward death and dying; no pun intended. In my senior year at Mercer University, I took a pass/fail course on death and dying. Three professors co-taught the term. The first professor saw death as "someone in his office with his books and someone in his bed with his wife." The second professor, who was radically active in woman's liberation, saw death as a way to express her disdain of men. The final professor was so scared of death that he would not look at a corpse in a casket. True story and sad! This was not a healthy attitude toward death and dying

Our attitudes and reactions toward death are shaped initially by our childhood and our families reactions to death. Those reactions, good or bad, can stay with you for your entire life. Not everyone has a healthy attitude toward death and dying, but we can develop one.

I have preached hundreds of funerals and been present at the death of dozens of individuals over the years. I have watched healthy people and sick people deal with these issues of life and death. I have helped families work through the wrenching decision of “pulling-the-plug” on loved ones. Cathy and I have made those decisions ourselves. I have noticed three things common in all of these experiences that indicate a healthy attitude toward death, which may help us face our own eventual death. Here is what I mean by a healthy attitude toward death and dying.

First, don't be fixated on death. This is not healthy for anyone. God intends for us to live life, not be focused on death. Death is an enemy, not an ally. Death is a conquered foe, not a friend. Focus on living day-by-day and not on thoughts of dying.

I do believe, and I back my belief by experience, that God does grace some people with the knowledge of their impending death. For those people, it is not a fixation but a grace and peace in preparation for heaven. That is a wonderful blessing.

Second, don't be fraudulent about death. In older times in our society, death was seen as a natural part of life. Anyone who grew up on a farm understood the cycle of birth, life, and death. With advances in medical care and our shift away from an agrarian society, we have moved away from facing the reality of death. We tend to mask death's effects.

We spend fortunes to prevent death during the last weeks of life, even in cases where death is inevitable. We use terms like “sleep,” “departed,” and “passed” to ease our discomfort. We buy perpetual care and impregnable caskets and vaults to keep the body as natural as possible. We can dress up death, we can ignore it, we can fool ourselves into improper thinking about death, but it does not change the fact that people die. Death is a terrible enemy, but a natural part of life.

Some parents desire to spare their children the pain that death can bring. I think that in an age appropriate way, it is better to deal with children frankly and honestly about death. This will go a long way toward helping them develop a healthy attitude about death and dying.

Third, don't be fearful of death. That is easier for a well person to say than for one struggling with a serious, life-threatening illness. Can I say, "I am not afraid of death?" Well, that answer has two parts.

Am I afraid of dying and going to be with Jesus forever? Absolutely not; this is our blessed hope and the completion and maturation of our life in Christ. I see death as a transition from this life to the next, much like a child going from the womb to the world. For believers, Christ never leaves us alone and fearful, even through the journey of death.

Am I afraid of the process of dying? Am I afraid of the unknown events of suffering and hardship and pain for myself and my family? Am I afraid of not seeing my grandchildren grow up? Yes, who wouldn't be! No one wants to suffer or be the cause of suffering. Everybody wants to go to heaven, but nobody wants to go right now.

Am I at peace? Yes! This is where sickness and faith meet and faith overcomes. King David expressed it like this ...

The Lord is my shepherd, I shall not want. 
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness for His name's sake.
Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and loving-kindness will follow me all the days of my life,
and I will dwell in the house of the Lord forever. 
Psalm 23

One thing that eases the fear of death is faith in Jesus Christ. This is the lesson Mary and Martha learned at the resurrection of their brother Lazarus. When a person places their faith and trust in Him, even death itself is defeated.

Jesus said to her, "Your brother will rise again." Martha said to Him, "I know that he will rise again in the resurrection on the last day." Jesus said to her, "I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?" --John 11:24-26

In early 1983, we moved to New Orleans so I could attend seminary. Within three months, Cathy's grandmother died, her father was diagnosed with an incurable brain tumor, we were flooded twice, both of my cars were wrecked, and I was robbed at gun point.

I was working the night shift as a dispatcher for the newspaper and going to seminary during the day. It was about 5:30 AM and I was on my way home. Another car hit my car from the side so we stopped to assess the damage. After a few minutes, the two young men who were driving the other car said, “we are going to call the police.” I said, “OK.” I looked at my car for a few seconds and then back at them.

You can count the bullets in a revolver by street light. I know, I did. I laid in the street for about fifteen minutes with a gun in the back of my head, while traffic was continuing up and down the road. As they went through my car and my belongings, I really expected them to pull the trigger any moment. By God's grace, they did not kill me.

I learned some important lessons early that morning. The first lesson was never to stop for a car wreck in New Orleans. But more importantly, I learned that life is too short and precious to take for granted. Life is too short and precious to be consumed with worry. Life is too short and precious not to consider our own death and be prepared for it. It is true, you are not ready to live until you are ready to die. Having MG has helped me focus my living.

I will die one day, that is certain. So will you. I don't know when my time will come, it may be near or it may be far away; only God knows. As far as I can tell, there is no expiration date stamped on the bottom of anybody's foot.

For the believer, there is one day when even death itself will be vanquished. Paul says it like this in the Resurrection Chapter of the Bible, 1 Corinthians 15:54-57:

But when this perishable will have put on the imperishable, and this mortal will have put on immortality, then will come about the saying that is written, "DEATH IS SWALLOWED UP in victory. "O DEATH, WHERE IS YOUR VICTORY? O DEATH, WHERE IS YOUR STING?" The sting of death is sin, and the power of sin is the law; but thanks be to God, who gives us the victory through our Lord Jesus Christ.

So what is my best advice? Live until you die, whether in sickness or health, with personal faith in Jesus Christ trusting God and glorifying Him in everything, for we have the victory through Him.

Tuesday, April 19, 2016

Pulmonary Function Test

Two items today

#1: Last week I had a series of pulmonary function test a Vanderbilt as a follow up on my breathing and a chest xray from the December ER visit. The ER xray picked up on the large size of my lungs and the radiologist noted that the size usually is associated with COPD. I have been to the Vanderbilt pulmonology clinic since the MG started and they have performed several pulmonary function tests on me over the years.

This last test was as good, and in some cases a little better, as the previous tests. I moved a little over five liters of air through my lungs. That is a lot of air. I have big lungs, but I am a big guy. I am 6'2" tall . . . and seem to be growing taller. The test at Vanderbilt show that I do NOT have COPD. In fact, my lungs are in excellent condition and exchange oxygen well. My breathing problem is muscular not associated with my lungs at all.

The pulmonologist believes the size, reserve capacity, and clarity of my lungs has helped keep me from being intubated. That is just what I thought. That is also why I have been so careful to keep from getting sick.

#2: Unfortunately the headaches came back this weekend and last night (Monday) was horrible.

Just a note about getting taller: Several in the family have noticed this. When we were at Randell's a few weeks ago we noticed it. He has been just a fraction taller than me as an adult. Now I am slightly taller than he is. I measured myself in my bare feet (better than bear feet). Most of my life, I have been just a fraction under 6'2" . . . now I am just over 6'2". 

You can't keep a good man down.

Tuesday, March 29, 2016

24th Cytoxan Chemotherapy March 23, 2016

I arrived for my 24th Cytoxan chemotherapy infusion at the Erlanger East Infusion Center at 9:45 AM. This was my first time using this center. I have had infusions at the Erlanger Medical Center in downtown Chattanooga, but the Erlanger East Center is only five miles from our house. The center was very nice and my nurse was one who had transferred to this center from downtown and had treated me previously.

After the preliminary paperwork, they began an IV and started a Zofran and Depo-Medrol drip followed by a period of fluids. I was also given oral Tylenol and Benadryl.

Just before the Cytoxan chemo, I received IV Mesna, an organosulfur compound used to coat my bladder to reduce the risk of bladder cancer and ease the effects of the Cytoxan. Finally, around noon, the hour long Cytoxan infusion began. When the Cytoxan infusion was completed, I received additional fluids for two hours, then a final round of Mesna with a quick flush. We left the center at 3:45 PM. Infusion days are always long. I have two more infusions left.

Friday, March 25, 2016

Post Hospital Video Update

Here is the update to my February 2016 video. It was made on March 17, 2016, one month after my plasma exchange, chemo, and discharge from my 13th hospitalization. My next Cytoxan chemotherapy is March 23.

Monday, March 7, 2016

Rare Disease Awareness Month

I want to raise awareness about Myasthenia Gravis from a different perspective: officially published "MG Fact Sheets." I appreciate the information provided, but some wording needs improving, especially the part about, "people with MG can live normal or near normal lives with medication." This seems to be the main fact people remember. For the 100's of people I am in contact with in support groups, this is not the case.

For those of us who have severe Myasthenia Gravis, some "MG Fact Sheets" make life more difficult. I have a good team of doctors who understand MG and a great wife and family who know the effects MG has on me, but others do not. Here are some problems these "MG Fact Sheets" can cause.

Doctors and emergency room staff unfamiliar with MG often read these "MG Fact Sheets" and may tend to think that MG is not that serious then mis-treat or under-treat people with MG. I know of several people who have experienced this. I have had to educate doctors myself about what to and not to do about MG. YES, there are many doctors who have never treated a MG patient. Remember, MG is a rare disease.

Those who have poor family support really have a difficult time getting family members to understand how difficult their disease is when Foundations state, "people with MG can live normal or near normal lives with medication." In my MG circles, few do. It may be that I am in contact with people who have more severe cases. I have heard from many individuals on various support groups that experience the problem of lack of family support and understanding. They often say, "My family thinks I am just tired, or lazy." "Get up and do your work, you're normal." Just try to explain MG fatigue to an uncompassionate boss who has read the "MG Fact Sheets." You're fired!

Occasionally, "MG Fact Sheets" make the whole process of applying for and obtaining Social Security disability more difficult. Yes, I know that receiving disability is defined and governed by the Social Security Blue Book (Section 11.12), but that does not stop the case worker from reading a "MG Fact Sheet" and seeing "most people can lead normal to near normal lives with medication" then disapproving the application. Think it can't happen? I was disapproved the first time because I was a pastor and only worked one hour a week when I preached on Sunday--as the Social Security case worker told me! True story.

People still die from MG. I and others have lost too many FaceBook friends to MG over the past few years. This is a sobering reality that people do not want to face, but it is true. Yes, the mortality rate has drastically declined and that is great, but people still die from MG and its complications to be more specific. I would be dead now if it were not for the treatments I receive. But, I am still alive and plan to be.

People can live a normal or near normal life with medication. Well, I guess that is true if normal or near normal is redefined. Just ask someone with a severe case of Myasthenia Gravis.

Tuesday, February 23, 2016

Home from My Thirteenth Hospitalization

February 23, 2016

You may have watched my YouTube video 2016-02-10 Pre Appointment Summary. Here is the follow-up after my hospitalization. I will do another post treatment comparison video soon.

It has been a long seven days at Vanderbilt Medical Center, but most of it was a blur to me. I feel fairly confident if I had not increased the prednisone and Mestinon on Friday before my doctor's appointment on Tuesday and admission immediately after, I would have been intubated. When the neuro doctor evaluated me, my single breath count was down to sixteen. The neurologist asked, "Do you have an Advance Directive? Are you okay with intubation if necessary?" Those questions do not rattle Cathy or me; we dealt with them for years in ministry and in my current situation. "Yes, intubate me if it is part of the treatment, but not if I am brain dead or have a massive heart attack and no hope for a good quality of life, etc." The doctor agreed and hoped that intubation would not be necessary, but they would put me in the Neuro ICU step-down unit where I would be monitored closely. I was hooked up to wires all week. I had waited too late to go to the hospital and was at the point of a MG crisis. My fault.

Since I was admitted to the hospital so late, they were unable to insert the vascular catheter until early the next morning. Because my breathing was so bad--my respiration rate was between twenty-five to thirty-five on average and shallow--they only used a local anesthetic to insert the catheter.

I finally made it to plasma exchange around 4:00 PM. For those not familiar with plasma exchange (PLEX), my blood is circulated through a machine which separates my blood cells from the plasma (liquid). The liquid is replaced with new liquid (albumin) and recombined with my blood cells and pumped back into my body. It is sort of like a transfusion with my own blood. The old blood plasma which contains the bad antibodies that causes my problem is trashed. This first PLEX circulated 150% (6.5 liters) of my body's blood through the machine. I made it back to the room about 8:00 PM.

They took me for my second PLEX about 7:00 AM the next morning. It was another 150% PLEX. That made a total of 300% (13 liters) of my blood in and out of my body by the time I returned to my room around lunch: two large exchanges in eighteen hours. By now, I was running a slight fever and my heart rate had increased. My nurse came in to check on me when I returned and I asked for some nausea medication. As soon as I did, I started throwing up. I throw up with all my might! The nurse immediately got and gave me an injection of IV fenegan into my IV port. The doctor commented on it the next day, "the nurse said, 'you threw up your foot!'" Yep! I think I may hold the record for throwing up on that floor. I took zofran from that point forward. I mentioned my heart rate. My usual resting heart rate is between 55 and 60. After the first two treatments it went to and average of 100-125; higher when I stood. This is normal for me during PLEX. My blood pressure also went between high and low at its pleasure.

The other PLEX treatments were only at 100%. In all, they transferred twenty-six liters of blood in and out of my body. My symptoms remained the same, except for throwing up. I did have a treatment day off on Sunday.

When the doctors examined me before and after the first PLEX, I had considerable weakness. I and a big, strong man, so weakness is a relative term when a 125 pound female doctor is testing my strength. But, when I was laying flat in bed and could not raise either foot off the bed at all, well, weakness becomes very evident. I could wiggle my feet and move them side-to-side, but I could not raise my leg off the bed. It was like I was paralyzed. The lead doctor asked, "Are you even trying." "As hard as I can." The next morning, after the second PLEX mention above, I could lift my legs with ease. The doctors and I were amazed. Thank the Lord. They said, "This is why we hit you so hard and so heavy when you came in. You needed some improvement fast." It worked. My strength continued to improve and I could even take a step or two on my heels by the end of the week. I am still not back to my "normal" strength.

After my PLEX treatment on Monday, I started the first of four Cytoxan chemotherapy treatments. I will have three more monthly treatments in Chattanooga. It took a little over three hours for the first chemotherapy. The doctors finally pulled the vascular catheter and began the discharge process. We finally left around 5:00 PM.

I tolerate Cytoxan fairly well. I will have some nausea for a few days, but I am prepared for that. It also causes my heart rate to increase. Last night at bedtime, my resting heart rate was 120. It should drop back to normal in a few days. I will avoid crowds until the chemotherapy is over.

I had really good care from the doctors, the dialysis unit, and my nurses and Cathy and I appreciate it very much.

Oh yeah! Most of the time, the food at Vanderbilt is not bad. This time it was awful. They did provide Cathy a guest tray and I am thankful; I had a partner in culinary despair. Someone in the dietary department must be getting a kickback from the green bean and carrot producers. We had green beans or diced carrots at every meal: both at many. I like green beans and carrots, but there are only so many one can eat.

And another thing. I have an egg white allergy: I get delayed sinus congestion. I eat eggs at home so the doctors said I can eat eggs there--but tell that to the kitchen. Try eating a week of food that has NO eggs or egg substitute products (they use ground cardboard instead). They made a mistake the first morning and brought me a "Vanderbilt Special" breakfast of bacon, scrambled eggs, potatoes and it was the best meal I had there. They rectified their mistake. The next morning I received a "box" breakfast that was clearly marked on a bright yellow labeled "BUNN -- ALLERGY. NO EGG." It contained an over-the-counter muffin, cranberry juice, apple sauce, and - - - wait for it - - - a boiled egg.

When we left Vanderbilt last evening, we stopped at Carrabba's for supper. We arrived home around 10:00 PM and were exhausted. Thank the Lord for taking care of us and that I am feeling better.

PS: Cathy snuck me a pizza on Friday night.

Monday, February 15, 2016

Back to Hospital

It has been some time since I last posted, except on FaceBook. I am going back into the hospital. I will report soon. --Kerry

Sunday, July 19, 2015

Latest Video

Have you ever wondered if plasma exchange helps? Watch this video. It has been two weeks since I came home from the hospital and completed two weeks of plasma exchange. Compare this to the 2015-07-06 video.

Sunday, July 5, 2015

Home from Vanderbilt

I had my last plasma exchange on Saturday morning and was released from the hospital after noon. We stopped and ate lunch, finally arriving home around 5:00 PM. Now to recover. Thanks again for your prayers and support.

Sunday, June 28, 2015

More Plasma Exchange

I am going back into Vanderbilt Medical Center tomorrow morning (06/29/15) for five more days of in-patient plasma exchange. I have become much weaker since my last video three weeks ago. Here is a video showing my current condition. I plan to do a comparison video after the plasma exchanges--This is the 1st half of that video. Thanks again for your prayers and support.

Thursday, June 25, 2015

Back to Vanderbilt

MG is hitting harder and harder. Two weeks ago I could count to 27 on one breath. One week ago, 25. Yesterday, 20. Just taking it easy until I go back to Vanderbilt for more plasma exchange. It is dangerous when my one-breath count gets lower than 20.

Tuesday, June 9, 2015

A Long Overdue Update

It has been over one year since I made my last myasthenia gravis video, but today I did. I hope you enjoy watching.

For those new to MG, I have not posted a lot lately, but I have been fighting refractory generalized MG and small fiber neuropathy since April 2009. You can read more about my story at or

All of my videos can be seen at

Saturday, February 28, 2015

February 28, 2015 Quick Update,

I have not written much lately because the chemo has really been working on me. My last treatment was February 9. Since then, the nausea has been under control but I have been very fatigued and slept a lot more. If the effects of Cytoxan are accumulative, my twenty-one total months of infusions are catching up with me. I am seriously thinking about postponing my next treatment for a month.

I hope the next is not "too much information." I passed some blood on Wednesday (2/25) this week. I contacted my gastrologist's office; she was out of the office but her PA saw me the same day. I have a close connection to my Dr. through the church: Dr. Schmidt is excellent. I had both and endoscopy and colonoscopy on Friday (2/27). They were concerned about the bleeding because of a previous large polyp and all of the medication I take.

Since I have MG, any time I receive anesthesia it is very dangerous. They did the procedure at Memorial Hospital. Their main anesthetist, who had experience with MG, put me to sleep and woke me up. I am glad he knew about MG.

The good new. My upper GI system looks very good: no reflux. My lower GI system looks good too: no polyps. The bleeding was coming from a large internal hemorrhoid. Like I said, TMI.

Thank the Lord!

Saturday, January 10, 2015

A Cold Homecoming: January10, 2015

I finished the chemotherapy about 5 PM yesterday. The neuro pulled the vas. cath. before he went home for the evening, otherwise I would have had to wait for the one "on-call" neuro to do it when I was ready to leave. I had to wait two hours for the last med (mesna) which coats my kidneys and bladder to prevent bleeding from the chemo. A new IV was started in my hand and the mesna drip began, but stopped flowing. After failing to start two new IV's after blown veins, the nurse finally took my suggestion and pulled the original line back just a little bit . . . and surprise . . . it worked.  In all the process of working with the IV, another nurse came in a silenced, rather reset the IV pump, and it did not pump at the correct rate. Neither the nurse or I noticed this. After 15 minutes, I still had lots of dips left. That's when we fixed it. The mesna infusion which should have taken 15 minutes took 1 hour. It is now 8:30 PM.

I doin't get anxious about going home unless I have a set time. Now I am an hour late. All the paper work has been completed and all we need now is transport to take
us home. He arrives with only a wheel chair. Our new nurse (shift change) looks at him and said, "what do you plan to do with all their stuff?" "I don't know, they told me to just bring a wheelchair." "Why don't you go and get a cart." After a few moments of deer-in-the headlights, he said, "Okay, but it will take a few minutes." The nurse just sighed.

On the way home we stopped at ate. There is a limit to how much hospital food one can eat.

We made it home at 12:15 AM. Kerrell had called and said, "Daddy, I can't get your heat to reset." Yes, to quote Gomer Pyle, "Surprise, Surprise!" Our heat has gone out. The good thing is we have gas logs to keep the chill off. The repair man will be here this morning.

Thanks again for your prayers and support.

Wednesday, January 7, 2015

Cathy's Report -- Monday through Wednesday

Monday, January 5, 2015

Today has been a fairly busy day. I was late taking a shower because I was waiting for Kerry to do to dialysis. However, today they treatment was given in the room because of the volume of dialysis patients and MG patients. One thing different today, his blood count was way off and the blood has had to be drawn several times to be rechecked.

A speech therapists came in to check on his swallowing. Occasionally, he will choke on water and they wanted to make sure everything was okay. And, it was.
Afterwards, respiratory therapy came in to check on his breathing. Then, Physical therapy and occupational therapy came in to talk about ways to conserve energy and ways to perform tasks around the home. So, he is going home with a grabber, a sponge on a stick and a walker.

We found out the doctor has ordered a Heparin induced antigen test to see why his blood platelets are running so low. Which means they are checking to see if he had developed an immune response to Heparin. He is given Heparin shots while in the hospital to keep his blood thin because he has to stay in  the bed so much during treatment.

This afternoon Kerry sat up and I kicked back on the bed and took a much needed nap.

Tuesday, January 6, 2015

This morning Kerry was taken to dialysis before 7:00 am. I took an early shower, got dressed. Kerry missed breakfast, but I saved his 2 turkey sausage, biscuit and pear cup, and ate my breakfast. Waiting at the elevators I looked out a window and saw snow! A lady walking by stated “earlier it was snowing heavier than now.” As I was leaving the hospital for the parking garage I was hit in the face by the cold arctic air. Now that will take your breath away!

I quickly chose what I need from my tote and am glad for the warmth of the hospital. Afterwards, I went to dialysis to check on Kerry. He was doing okay and is almost finished. Before I leave as to not be in the way, the nurse calls for transport and in about ten minutes Kerry is back in the room.

Yesterday, I mentioned that his platelets are low and blood has been drawn several times to check for Heparin induced antigens. The doctors discuss a couple of theory's as to why but, we are still waiting on the tests results.

The physical therapist came in again today with two students. She went over what was discussed yesterday (Tuesday, the 6th) and gave us an additional handout on tips for fighting fatigue. She also worked with Kerry's double vision, by placing tape vertically from his eyebrows to below his eye. She blocked half of his vision with the tape. This occluded part of the double vision and left his peripheral vision intact. The next step is to transfer this to his glasses which are at home. This seemed to help.

As the therapist and students were working with Kerry, he mentioned his videos in which he demonstrates his strength fatigue. They watched as he curled the 17 lb box of pennies until his arm just stops in mid air. They asked permission to use this in their staff presentation and also to video them working with him. They want to use this to teach about the MG patient with strength weakness. Permission was granted.

I have mentioned the nurse from radiology who recognized us from the past. The nurses on the floor also recognize us and treat us very well. One of the care partners immediately came when she saw Kerry's name on the list. She is our care partner this time and said “she would catch up on the briefing later, she had to come see us first.” Everyone here treats their patients well and are friendly. On the wall in the hallway there is an area behind glass where pictures of the staff are posted. Along with those pictures are handwritten notes from former patients and students who have had treatment and instruction from these individuals. Everyone of those notes are full of praise and thanks.

Lunch was brought and now I have a guest tray. It's good that we get to eat together and smile at the differences in the food. Today, I had BBQ lightly sauced, California vegetables, cole slaw, soup, pineapple cup and sweet tea. Kerry had BBQ with no sauce, California vegetables, roasted potatoes, soup, pineapple cup and unsweetened tea. And, we both had 2 packs of soda crackers.
We are resting this afternoon. The speech and respiratory therapy have stopped back by. Speech therapy has released him since he is doing much better.

Wednesday, January 7, 2015

Hello everyone! Kerry is having a better day today, it seems the plasma pheresis is doing its job. We are thankful.

Things has calmed down somewhat on the 6th floor from Monday. Tuesday, was fairly calm as well. We are right across from the nurses station and those rooms tend to be a bit noisy. We are thankful for calm!

Monday, January 5, 2015

Day One at Vanderbilt 01-05-15

Things went unbelievably smoothly yesterday. From admissions, straight to radiology prep, straight to vascular cath placement, straight to plasma exchange, then straight to our room. No waiting service. Wow! In the room by 2:30 Nashville time. The kidney doc stopped by (they do plasma exchanges) for an evaluation this morning before the exchange. I had just walked from the bathroom (two steps), washed my face and then to the bed (four steps) I was breathing very hard by then. He said, "if this keeps up we may have to put me in ICU for monitoring." To quote David Tennet's Dr. Who, "I don't want to go." Cathy Bunn or I will keep you posted. She is on facebook also.

Saturday, January 3, 2015

Back to Vanderbilt

I hope everyone had a happy new year!

I will be going back into Vanderbilt on Monday (1/5) for 5 more day of plasma exchange. The MG antibodies have built back strongly in my system and have been causing lots of problems lately. I have not posted a lot recently, but the symptoms have been getting much worse since mid November.

Here is a copy of the report I sent to my neuroligist.

Dr. C.L.: Here is my pre-hospitalization update as of December 30, 2014 Current Status: I have had several good weeks since the crisis in August, although it did take some time to get over the crisis. When the MG antibodies reached that tipping point in my body, I began to go down hill rather quickly.

Breathing: My breathing was better during my good days and I could count to 38 on a breathing count test. Now it is going down quickly but I can do 26 when I am rested on a breathing count test, which is not too bad for me.

Mental Issues: There is definitely a coloration between the antibody levels and my mental status. The worse my MG, the worse my mental condition. Right now, it is not good at all. I am mixing up my words when I talk and having trouble with problem solving issues. This is very noticeable to Cathy.

Vision: Worsening again as is my usual pattern. Moving objects blur easily. I am still having ocular migraines and my eyes hurt. A new issue happened for the first time this past Sunday (12/28). My vision doubled while looking straight ahead at conversation distance. It was normal when looking far away, but up close was doubling after a few seconds. This was better by Monday.

Muscle Jerking: I have lots of muscle and leg jerking. Lots of fasciculations. No change.

Tingling: I tingle and feel number over most of my body. My legs and arms are effected the most. My left arm is more numb than my right. No change.

Tremors: I still have tremors in my hands. No change.

Aching: I ache most of the time. No change.

Needle Pricks: I do not feel needle pricks over most of my body. I can feel scratches at times. But, I also find I have injured myself and not realized it. No change.

Sensory Issues: I have slightly delayed response to hot and cold. Strong sunlight instantly hurts my skin. Bright light hurts my eyes. No change.

Exhaustion: Was some better, now worsening again as is my usual pattern. Very, very tired at present. Weakness: Was some better, now worsening again as is my usual pattern.

Walking and Balance: Was some better, now worsening again as is my usual pattern.

Hypohidrosis: Still present. No change.

Body Temperature Regulation: I am still having issues regulating my body temperature. My body is starting to feel colder than normal.

Orthostatic Hypotension: Occasional but manageable. No change.

Tenth Cranial Nerve Palsy (CN10): No change.

Voice: Doing OK, no real issues at present.

Swallowing: I still have strangling issues, especially when brushing my teeth. I am not aspirating. Water and saliva will occasionally cause me to strangle as well. I think this is a combination of the loss of sensation caused by the CN10 issue and occasional MG throat weakness.

Headaches: My headaches have been much better since the series of occipital nerve blocks by Dr. C.C.. He also has me on Lipitor now because of a pre-2005 lucanar stroke.

Jaw/Temple Pain: Better at present. No change.

Whole Body Involvement: Still present. No change. Swelling: I still have swelling in both legs. No change.

Nausea: Only a slight problem in the morning when taking all the meds.

Gastroparesis: A little worse lately.

Hypogonadism/Gynecomastia: Still present in right breast. No change. Dr. Utz is following me for this and the prednisone induced diabetes. My A1C is 6.0.

Bi-PAP: Still working well. Dr, R,U. is following me for this issue.

Sunday, December 21, 2014

40th Anniversary

Today (12/21) we celebrate our 40th wedding anniversary. I love her more now than then.

My MG condition is still going downhill fairly fast. I still think I can wait until January for the plasma exchange. Kerrell and Alyssa have had the flu. I feel like I may have a touch of it. Otherwise, doing well.

Sunday, December 14, 2014

Back to the Hospital in January

I have had several good weeks over the last few months. I am very thankful to the Lord for those. But, the MG antibodies are building in my again and I can tell my symptoms are getting worse. I am always on a rollercoaster of up and down symptoms; now I am on the downhill side and going down quickly.

I have contacted Dr. C.L. at Vanderbilt. I will be going back into the hospital in early January for five more days of plasma exchange to remove the antibodies from my system. I will also begin my next series of chemotherapy treatments at the end of the exchanges while at Vanderbilt.

This will be my eleventh hospitalization.

Thanks so much for your prayers and support.

Sunday, November 23, 2014

Pre-Thanksgiving Update

I am very thankful for the several really good weeks I have had. More on Thanksgiving later.

I still fell fairly well, but I can tell my antibodies are building again and my symptoms are worsening. My breathing is still doing okay for me but my eyes and legs have gone downhill quickly. My hip joints hurt and leg cramps are terrible. It is amazing just how quickly my body can change.

From past experience, I hope to make it through December before another hospitalization. I will contact Dr. C.L next week about restarting chemo (we talked about this at my last appointment) in hopes of postponing hospitalization and plasma exchange.

I have not dropped to 15mg of prednisone yet!

Thanks again for your prayers and support.

Sunday, November 2, 2014

Feeling Good for a Month

Just a quick note to let everyone know that I am still around. 

I have had the best month I have had in the last several years and I am very, very thankful. I am still on the increased 20mg prednisone daily from my last hospital stay. Of course, that has me wired. 

My last neuo appointment in September went well. If I continue to do well with my symptoms, 20mg will go back to 15mg around Thanksgiving. Dr. C.L. expects me to be back on cytoxan in the future to lengthen the time between PLEX. No need right now, but later. 

Until then, I am enjoying feeling the best I have felt in years. 

Sunday, October 19, 2014

Vanderbilt Appointment, October 14

It took me about five weeks to recover from the crisis in August. But since then, I have had several good weeks in a row. Thank the Lord!

Dr. C.L. said (and I paraphrase) when a person first gets MG and has a crisis and then receives heavy treatment they tend to bounce back quickly. But when a person has serious MG for as long as I have and has lots of heavy treatments, they don't bounce back as quickly. The nerve-muscle junctions have suffered so much damage over time because of the MG antibodies. There are just not that many un-damaged nerve-muscle receptors left for a quick bounce back. 

My six month follow up with Dr. C.L. at Vanderbilt was last Tuesday (10/14). It is really strange how one can become so accustom to feeling un-normal that you do not realize when parts of your body are not working correctly. Along with my usual symptoms, this time I had no reflexes in my right leg and no strength in my left wrist.
I have had trouble swallowing since the last hospitalization and I often strangle on water and saliva. This is because my swallowing muscles are effected my myasthenia gravis (MG). Dr. C.L has scheduled me a swallow test to make sure I am not aspirating into my lungs.

Dr. C.L. and I both believe the cooler weather will help keep my MG under control some (hot weather makes MG worse), but if not he plans to start me back on Cytoxan chemotherapy.

Why chemotherapy? The chemo buys me time between plasma exchanges. It is worth it!

Soli Deo Gloria!

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.


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!

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.

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.

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 (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 "" 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 . . .

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.

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.

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)

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


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


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


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


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


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


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.