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.

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.

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.

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.

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.

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.

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.

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

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.

Click Here to Watch My Video

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.

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.

Click Here to Watch My Video

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.

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 krbunn.blogspot.com or krbunnsr.com.

All of my videos can be seen at https://www.youtube.com/user/drbunn

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!

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.

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!

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.

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.

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.

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.