Body Betrayed | Body Disabled

Welcome to My Story ~ Updated 07/05/15

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

Sunday, July 5, 2015

Home

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 krbunn.blogspot.com or krbunnsr.com.

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

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.

--Kerry

Saturday, August 23, 2014

Tenth Hospitalization -- MG Crisis

Here is what has happened since Wednesday 


Wednesday Morning (08/20/14)

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

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

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

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

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

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

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

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

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

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


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

Sunday, July 20, 2014

Thursday, July 17

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

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

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

Tuesday, July 15, 2014

I Need a Favor

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

Saturday, July 12, 2014

Headache Update & New Website

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

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

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

Sunday, July 6, 2014

Rough Week (07/06/14)

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

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

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

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

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

Sunday, June 29, 2014

I Never Learn

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

Sunday, June 22, 2014

Sunday, June 22, 2014

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

Saturday, June 7, 2014

Headaches (June 07, 2014)

I saw a headache specialist this week at Vanderbilt. 

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

Sunday, June 1, 2014

June is Myasthenia Gravis Awareness Month

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

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

Sunday, May 25, 2014

Sunday, May 26, 2014

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

Monday, April 28, 2014

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

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

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

Saturday, April 19, 2014

Easter Sunday Meditation (04/20/14)

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

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

Saturday Meditation (04/19/14)

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

Friday, April 18, 2014

Good Friday (04/18/14)

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

Sunday, April 13, 2014

First Week Home (04/13/14)

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

Sunday, April 6, 2014

Home, April 5, 2014

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

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

Wednesday, April 2, 2014

Cathy's Blog, Wednesday, April 2

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

Tuesday, April 1, 2014

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

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

Sunday, March 30, 2014

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

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

Saturday, March 29, 2014

Sunday, March 23, 2014

Ninth Hospitalization, Thymectomy, and Book

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

Saturday, March 8, 2014

The Journey Will Continue (03/07/14)

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

Wednesday, March 5, 2014

Thymectomy Soon

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

Tuesday, March 4, 2014

CT Scan Report (02/28/14)

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

Vanderbilt Appointments (02/25/14)

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

Condition Update (02/21/14)

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

Saturday, February 22, 2014

Chemotherapy (02/19/12)

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

Ophthalmologists Appointment (02/18/14)

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

Thursday, January 23, 2014

Chemotherapy for January 2014

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

Sunday, January 5, 2014

Third Anniversary of Disability (01/05/14)

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

Wednesday, January 1, 2014

Almost 2014

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

How true!
Happy New Year


Thursday, December 19, 2013

Before and After

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

Saturday, December 14, 2013

Doing Okay

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

Sunday, December 8, 2013

Saturday and Sunday


Saturday – December 7, 2013

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

Saturday, December 7, 2013

Tuesday, December 3, 2013

New Video

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

Click Here for the Video


Sunday, November 24, 2013

Thanksgiving

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

Friday, November 8, 2013

November 6 Chemotherapy

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

Sunday, October 27, 2013

Mobility Device

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

Sunday, October 13, 2013

October Update

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

Sunday, August 25, 2013

Endocrinology Report

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

Saturday, August 10, 2013

Appointment Update

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

Sunday, July 28, 2013

Usual Pattern

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

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

Otherwise things are going about like normal for us.

Sunday, June 30, 2013

Cardiology Report

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

Wednesday, June 26, 2013

Feeling Bad

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

Sunday, June 23, 2013

Feeling Better

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

Sunday, June 16, 2013

Increased Chemo Report

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

Sunday, June 9, 2013

Chemo Increased and Extended

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

Sunday, June 2, 2013

Downhill

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

Sunday, May 12, 2013

Fifth Chemo of this Series

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

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

Saturday, May 4, 2013

Nothing Really New

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

Saturday, April 27, 2013

Antibodies Building Again?

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

Sunday, April 21, 2013

I Knew Better

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

Saturday, April 13, 2013

Is March Really Over!

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

Sunday, March 31, 2013

Quick Update

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

Saturday, March 23, 2013

Pheumonia

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

Sunday, March 17, 2013

A Few Days at Randell's

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

Saturday, March 2, 2013

3rd Cytoxan

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

Sunday, February 17, 2013

Update February 17, 2013

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

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

Friday, February 15, 2013

Goat Video Below

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

Sunday, February 3, 2013

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

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

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

Saturday, January 12, 2013

January 2013

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

Thursday, January 3, 2013

Chemotherapy Again

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

Friday, December 21, 2012

Thirty-Eight Years Ago

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

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

Sunday, December 16, 2012

Saturday Update

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

Thanks for your prayers and support.

Friday, December 14, 2012

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

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

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

Wednesday, December 12, 2012

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

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

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

Tuesday, December 11, 2012

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

Hello to All!

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

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

Thursday, December 6, 2012

Thanksgiving and Early Family Christmas -- More PLEX

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

Sunday, November 18, 2012

Thanksgiving

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

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

Saturday, November 10, 2012

New Video

I am still doing fairly well, just very tired.

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



Sunday, November 4, 2012

MGFA Ga Chapter Meeting

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

Sunday, October 28, 2012

Busy Week -- Max and Toby Published

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

Saturday, October 20, 2012

Autonomic System Testing and PLEX Update

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

Saturday, October 13, 2012

One Week after PLEX, October 13, 2012

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

Saturday, October 6, 2012

Coming Home Today

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

Thursday, October 4, 2012

Cathy's Blog, October 4, 2012

October 4, 2012
Day 4 at Vanderbilt

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

Wednesday, October 3, 2012

Cathy's Blog, October 3, 2012

Day Three
Wednesday, October 3, 2012

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

Tuesday, October 2, 2012

Cathy's Blog October 2, 2012

Day Two at Vanderbilt

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

Monday, October 1, 2012

Cathy's Blog, October 1, 2012

End of Day One:

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

Saturday, September 29, 2012

EGD Update

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

Wednesday, September 26, 2012

2012-09-26 Pre-PLEX Condition Assessment

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

Monday, August 27, 2012

Quick Update

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

Saturday, August 18, 2012

I Knew Better than . . .

I Knew Better than . . .

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

Tuesday, August 7, 2012

Monday, July 23, 2012

Quick Update

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

Sunday, July 8, 2012

Cathy's Home-Fix-It Shop

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

Saturday, June 30, 2012

Same 'ole Thing

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

Sunday, June 24, 2012

Writing for a Guest Blogger

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

This was my post for her blog.

Sunday, June 10, 2012

Same

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

Saturday, May 26, 2012

More of the Same

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

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

Thanks again for your prayers and support.

Sunday, May 20, 2012

Status Quo Again

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

Sunday, May 13, 2012

Status Quo

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

Monday, May 7, 2012

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

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

Sunday, May 6, 2012

Twenty-Four Hours Later

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

Click here to watch this video.

Compare this to the previous video.

Saturday, May 5, 2012

Home from Second Rituximab Infusion -- Updated Video

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

Wednesday, May 2, 2012

Three Small Steps

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

Saturday, April 28, 2012

Saturday Evening Update

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

Friday, April 27, 2012

Lung/Sleep Doctor Follow Up

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

Tuesday, April 24, 2012

Three Years Down

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

Monday, April 23, 2012

Bad Day

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

Saturday, April 21, 2012

Vanderbilt Trip Summary

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

Thursday, April 19, 2012

Thursday at Vanderbilt

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

Wednesday at Vandervilt

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

Wednesday, April 18, 2012

Tuesday at Vanderbilt

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

Sunday, April 15, 2012

Five More Days of PLEX

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

Wednesday, April 11, 2012

Another MG Loss

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

Cathy the Surgeon

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

Tuesday, April 10, 2012

More Plasma Exchange

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

Monday, April 9, 2012

Another MG'er Gone

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

Thursday, April 5, 2012

More PLEX and New Video

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

Two Friends Are Gone

Two friends have passed away over the last few weeks.

Friday, March 30, 2012

PLEX Wearing Off

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

Wednesday, March 21, 2012

Spring Has Sprung

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

Monday, March 5, 2012

A Good Week

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

Tuesday, February 21, 2012

Cathy's Job

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

Sunday, February 19, 2012

Headache

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

Wednesday, February 15, 2012

Quick Update

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

Thanks again for your prayers and support.

Wednesday, February 8, 2012

PLEX and Vision Update

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

Tuesday, February 7, 2012

The Crud--Updated 02/07/12

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

Wednesday, February 1, 2012

Saturday, January 28, 2012

Erlanger PLEX is Over

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

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

Wednesday, January 25, 2012

Quick Update

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

Monday, January 23, 2012

More Plasma Exchange this Week

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

Sunday, January 22, 2012

Updated Again -- I Sent the eMail . . .

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

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

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

Tuesday, January 17, 2012

A Question of God's Will

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

Monday, January 16, 2012

A Few Stats

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

Sunday, January 15, 2012

A Quick Medical Update

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

Tuesday, January 10, 2012

Why I Blog

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

Friday, January 6, 2012

Out-of-Work for One Year

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

Saturday, December 31, 2011

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

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

Monday, December 26, 2011

What Not to Take!

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

Saturday, December 24, 2011

Merry Christmas


Cathy and I wish each of you a very

~~ Merry Christmas ~~

Monday, December 19, 2011

Blue Christmas--Hopefully Not!

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

Thursday, December 15, 2011

December 15, 2011 Update

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

Tuesday, December 6, 2011

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

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

Friday, December 2, 2011

Neurology Appointment, November 29, 2011

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

Wednesday, November 23, 2011

Thanksgiving -- CT Scan Update

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

Saturday, November 19, 2011

High Definition CT Scan

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

Tuesday, November 8, 2011

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

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

Thursday, November 3, 2011

November Update

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

Thursday, October 13, 2011

Pulmonology Update, October 12, 2011

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

Sunday, October 9, 2011

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

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

Tuesday, October 4, 2011

The Pain, The Pain!

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

Wednesday, September 21, 2011

Quick Update for 09/19/2011

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

Monday, September 12, 2011

Update for September 12, 2011

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

Saturday, September 10, 2011

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

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

Thursday, September 8, 2011

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

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

Wednesday, September 7, 2011

Chemo Update

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

Thursday, September 1, 2011

Chemo Begins September 8

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

Starting Cytoxan Chemotherapy Soon -- Why?

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

Monday, August 22, 2011

Next Step

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

Thursday, August 11, 2011

Breathing Update

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

Wednesday, August 10, 2011

Plasma Exchange Update

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

Monday, August 8, 2011

A Busy Week

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

Thursday, August 4, 2011

Two Bad Days

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

Monday, August 1, 2011

Treatments at Erlanger in Chattanooga and Other Information

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

Wednesday, July 13, 2011

Test Results -- Updated

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

Autonomic Function Testing

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

Friday, July 8, 2011

18th PLEX Treatment, Biopsy, and Neurologist Appointment

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

Wednesday, July 6, 2011

Appointment Change

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

Friday, July 1, 2011

Test Results

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

Monday, June 27, 2011

Reception Last Sunday Evening

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

Wednesday, June 22, 2011

Next PLEX

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

Wednesday, June 15, 2011

First Week of Not Being a Pastor!

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

Sunday, June 12, 2011

Latest News

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

Tuesday, June 7, 2011

No Longer Can Continue as Active Pastor

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

Friday, June 3, 2011

Condition Update & Future Plans

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

Tuesday, May 24, 2011

Here is the latest update on my condition.

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

Saturday, May 7, 2011

A Day in the ER

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

Sunday, May 1, 2011

Ringgold Tornado

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

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

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

Friday, April 29, 2011

Cathy's Blog - Thursday, April 28

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

Wednesday, April 27, 2011

Cathy's Blog - Wednesday, April 27

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

Sunday, April 24, 2011

Plasma Exchange Again

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

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

Thursday, April 14, 2011

Vanderbilt Appoint Update

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

Monday, April 11, 2011

Rough Sunday

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

Friday, April 8, 2011

Thank You!

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

Thursday, March 31, 2011

Appointment Update for March 30, 2011

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

Sunday, March 27, 2011

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

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

Friday, March 25, 2011

Breathing Problems

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

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

Wednesday, March 16, 2011

Blood Pressure

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

Sunday, March 13, 2011

Sunday Update, March 13, 2011

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

Wednesday, March 9, 2011

FBC Newsletter, March 2011

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

Wednesday, March 2, 2011

IVIG Update March 2, 2011

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

Wednesday, February 23, 2011

Quick Update

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

Saturday, February 19, 2011

Headache

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

Hope everyone has a good day a church tomorrow.

Friday, February 18, 2011

IVIG Complete

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

Thursday, February 17, 2011

Three Days of IVIG Complete

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

Monday, February 14, 2011

IVIG Starts 02-15-2011

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

Friday, February 11, 2011

UPDATED IVIG Delay or NOT!!!!

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

Wednesday, February 9, 2011

Second Round of IVIG beging February 15, 2011

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

Newsletter Article for February 2011

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

2011-02-09 Hair Changes

Friday, January 21, 2011

Extended Medical Leave Begins

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

Saturday, December 25, 2010

Merry "White" Christmas

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

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

Click Here to View my White Christmas 2010 Video

Sunday, December 19, 2010

Medical Leave

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