Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Here is what has happened since Wednesday.
Wednesday, August 20, Morning
I am not feel 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 Time
Cathy called and cancelled 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 (pseudobulabr 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 vas-cath sometime on Thursday and afterwards 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, August 21 Morning
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 cath 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 vas-cath 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, August 22
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, August 23
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!
Wednesday, August 20, Morning
I am not feel 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 Time
Cathy called and cancelled 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 (pseudobulabr 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 vas-cath sometime on Thursday and afterwards 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, August 21 Morning
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 cath 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 vas-cath 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, August 22
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, August 23
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!
This is what they used on me when I was in the hospital and it worked so well. They should put it on you in ER and it should follow you to ICU. Please Kerry use this wonderful tool. I have one at home and use it when my breathing is weak.
You and your wife willl be in my thougths and praryers. Marie
I am amazed at your great attitude and humor....what a response to the ICU nurse, too funny. After 4 weeks in the hospital with my last crisis my attitude was not in as good of shape.
These certainly are trials of flesh Kerry and I pray that you continue to improve, MG does demand a lot of respect and prayer
I'll see if I can scrounge up a spare live chicken, orange marmalade and a weed eater for you LOL
As always many prayers and the best of wishes for you.... I hope you continue to improve and get stronger.
Joe
I reread your entry....I know for me simplifying anything so less energy is used up can keep me from getting completely out of energy. I am wondering if you could have a stool in the shower so you do not have to stand. Some people like using a hand held shower wand but for others this is too much expenditure. Maybe a lower spot on the wall to set it in so you can manipulate it from the stool. Use barely warm water so you do not get too hot as that makes you weak as well.If you are really weak you may need some assisstance. Right now I am helping my husband bathe due to his weakness. Your wife sounds like a wonderful helpmate so maybe she can also see some ways to make bathing easier. Marie
So sorry to hear of the latest crisis. You have been through so much. Being a man of God, I know you know how to draw from His Strength.
Praying you continue to heal.
Dee
My electrolytes have dropped some. I have been given phosphorus and magnesium to get those back in line.
My blood pressure has been high since I have been here. They have withheld my blood pressure meds because plasma exchange drops blood pressure. Today my blood pressure was much higher, so they gave me medication and it dropped my pressure to a high normal level.
My white blood count was high (12,100) when I came in the hospital. It went to 15,800 but is now at 10,800. I have no sign of infection so the cause is probably from the crisis and increasing the prednisone to 20mg per day.
The food is fair for the most part. But, if you hear the term "mojo pork loin," run. It was not good. It think it lost its "mojo." On second though, it never had it.
I am still very tired and have rested a lot. Cathy has been able to sleep at home since I am in Memorial in Chattanooga. It only takes her about twenty minutes to drive here, depending on traffic.
All of the nurses and techs have been very professional, good and kind since I have been here. I really appreciate that.