Archive for August, 2011

Our Life Path Changes Again

Since Charcot in the right foot was now somewhat in remission. I was finding adjustment to the new prosthesis easier than the first. So, I will share what was happening with the next stage of our lives.

My husband, Tony, had been under such mental and physical stress from my being ill. He was not eating, or resting well and complained of some pain in his abdomen. I called and set up doctor’s appointments for him. When the day would come to visit the doctor, he would find himself too busy to go. He would have me cancel the appointment. This went on ’till the first part of November. He finally went to the appointment. This started a series of tests that took several weeks.

When he went in for the test results, he was told he had pancreatic cancer and that they were setting him up with an appointment with a surgeon to discuss his options in dealing with his cancer. The next couple of weeks were awful. The surgeon was very busy and we could not get in right away. So, Tony’s mind was going crazy trying to figure out what his destiny in life would be.

During this time, we talked and prayed trying to lead a normal life. If Tony were here today, he would tell you that he should have listened to me and not canceled his doctors appointments. Like I mentioned before, he was a heavy smoker and knew the dangers of this bad habit. In one of our conversations, he asked me to not let him become bitter about his destiny. My response to him was, “Honey, I have already been praying about that for both of us.” And I had.

God answered those prayers throughout that next year and for me, He is still working in my life. We finally saw the surgeon on December 20th 2005. At first sight of the surgeon, we both knew we had the right doctor for he was one of the surgeons who had cared for me. I must interject here also that in our talks Tony had told me, “If the report is bad, I do not want to do Chemo.” I told him whatever he decided was fine with me – I would back him up totally. The report was bad, the cancer had spread to stomach lining and liver. Surgery was not an option at this time and Tony had a life expectancy of 7 months.

The surgeon said Tony could do Chemo to try and slow down the cancer but the outcome was the same time frame. I knew Tony’s response would be “no Chemo.” Before Tony could respond the doctor said, “We have a new Chemo that is proving to help pancreatic patients greatly, but is still in a trial mode.” By receiving this Chemo treatment, Tony could help future patients in fighting the disease. Tony said, “If I can help someone else – I will do it.”

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Adjusting To A New Prosthesis

The summer of 2005, I was recuperating nicely from the second amputation, a BK cut (Below Knee), on my left leg. I had gone back to answering phones and setting up appointments for the carpet cleaning business. I was feeling better every day.  My check ups showed that the amputation wound was healing well. I would be fitted for a prosthesis by the end of August. I was on the road to recovery. Praise God for his healing.

(I interrupted this posting of Bonnie’s as I wanted to know more about the difference in the amputations and prosthesic devices, as well as adapting to the appratus. She had an appointment with her “prosthesis guy” a few days ago and this was her response.

My visit to prosthetic guy was good. The first amputation I had, because of Charcot Foot, was called a Symes Cut to the base of the ankle. This was in January 2004. The prosthesis is built with two parts, wearing a gell sleve over the stump to protect it from rubbing. Then the outside part or hard part slips over this and clicks into place below the knee. The foot part can cost as much as $30,000 depending upon the type of activity expected to take place. The more activity, running, walking, the more expensive the device. The prosthesis I have now fits up to just below the knee because of the BK cut..

As I remember, the difference in the base & foot apparatus can feel unsteady and moves a bit. I did not feel real steady. I was wearing it the only time I fell. I told Mark that I didn’t remember having any trouble with the new prosthesis for the BK amputation . He said, “No, you wouldn’t the BK prosthesis fits better. It’s more stable and since you were already used to a prosthesis an easy transition.”

My new clam shell is on order for my right foot – will be here in a month or less.)

(For further clarification the Syme’s amputation: All of the bones of the foot are removed thus separating the foot at the ankle joint. The lower end of the tibia is cut leaving a flat end of the bone. An amputee can walk about the house on it without a prosthesis or crutches. His leg is a bit shorter however.

The below the knee amputation often referred to as the BK or BKA is thought to be more stable for the amputee. There are two major techniques. The Burgess technique brings the skin and muscle from the back of the calf forward to cover the shin bones after they have been divided. The other technique the skew flap (kinsley Robinson) is where the muscle of the calf are brought forward same as the Burgess but the skin flaps are skewed in reltions to the muscle. The division of the tibia produces a good size stump to which a prosthesis can be fitted.)

Bonnie’s continuing story

Charcot Awareness Education Foundation

Infection: A Silent Destroyer

In re reading Bonnie’s last posting where the suture had been left in her first amputation, a sore developed into an infection requiring amputation of another 6 inches of her leg which caused me to do further research concerning infection.

My surgeon was very concerned about infection. I had a very minor one after surgery to correct Charcot in my left foot. He aggressively treated it and it was soon gone. There were signs around the hospital warning people about MRSA.

Recently, I was watching a popular TV program that had a guest doctor and the topic was Sepsis. I had no idea what it was, and was shocked when they said more people die from this than diabetes and cancer. It was infection.

I then began to talk with health care professionals and having my husband search the web. There is a lot of information for you to read so I will break down some of the information for you.

You have probably heard of Necrotizing Faciitis (NF), but more commonly called Flesh-Eating Bacteria. This is really scary to me. It can destroy skin, fat, and tissue covering the muscles within a very short time. Fortunately this infection is very rare, but deadly if you contract it. In fact 1 in 4 that get this infection dies.

Higher Risk Group
• Have a weak immune system
• Have chronic health problems such as diabetes, cancer, or liver or kidney disease
• Have cuts on your skin, including surgical wounds.
• Recently had chicken pox or other viral infections that cause a rash.
• Use steroid medicines, which can lower the body’s resistance to infection.

• Skin the is red, swollen, and hot to the touch.
• A fever and chills.
• Nausea and vomiting.
• Diarrhea.

These usually happen after an injury with pain worse than expected for the size of the injury. In fact it may feel fine and a day or so later it suddenly gets worse. You could go into shock. The bacteria destroys the soft tissue and fascia, which quickly becomes gangrenous (dead) This tissue must be surgically removed to save the life of the patient. NF can cause excruciating pain, dangerously low blood pressure, confusion, high fever, and severe dehydration due to the toxins poisoning the body. It can also occur under the skin resulting in a misdiagnosis.

If it occurs in the muscle or bone, major limb amputation is necessary. Death from this condition is not uncommon. Aside from tissue decay, the bacteria causes the rest of the body’s organs to go into systemic shock.

NF is not a recurring condition. Once treated the bacteria is eradicated from the body. (A good thing) However, this is a very fast moving infection, so time is the most important factor in survival.

For further information on Necrotizing Faciitis use your favorite search engine. Much of this was based on NNFF’s information from Dr. Steven Triesenberg, MD (Infectious Disease Specialist) in Grand Rapids, Michigan.

Charcot Awareness Education Foundation

2nd Charcot Surgery

In late April 2005 I started having a problem with my stump. I had a sore spot that kept getting worse. It was getting pretty painful, but not anything like the phantom pains I would get occasionally.

I set up an appointment with the surgeon, Dr. Chang. He took x-rays of the sore on the stump. Low and behold I had a very bad infection caused by a suture left in at the time of my first amputation. I was in shock, could not believe this was happening. Dr. Chang was very upset also, but because of the previous infection (MRSA) and Charcot Foot, he felt I needed to have my leg amputated to just below my knee (called a BK cut). The removal of about six inches of ankle and leg would get rid of the infected area. I was told I needed to have the surgery as soon as possible.

Believe me my head was spinning. All I could think of was another long stay in the hospital and I was scared to death. Poor Tony was in a state of shock also. We went home and prayed a lot. Knowing what had to be done, we called Dr. Chang and set up the surgery for the first week in May 2005.

That time came quickly and I was again in the hospital for an amputation due to the suture that was left during the first amputation of left foot January 2004. The surgeon, Dr. Chang, kept reassuring me this would be a fast recovery because I was in much better health physically and mentally. I was not really convinced of that before surgery, but did have total faith in Dr. Chang.

Yes, I was praying and thanking the Lord continually for strength and wisdom to handle this surgery. The surgery went well and recovery was going much faster and easier with no complications. Dr. Chang said I should be able to go home in 4 to 5 days. I had no reactions to any of the meds I was given and no sign of Mersa which developed after the first surgery.

Rehab was started next morning. Which was getting up, sitting on the side of the bed and using a slide board to get from the bed to wheel chair. I could not believe how wonderful everything was going, no lightheaded dizzy spells and pain was minimal.

I was ecstatic with how I was recoupping. My biggest concern was leaving Tuk at home by himself. I worried about him continually even asked if he could be brought up to the hospital to see me. Well, Dr. Chang nixed that thought. Tuk was four months old and had been with me continually and slept on my chest at night . Poor Tony was working two jobs – worried about me. To help ease my mind he put Tuk in his kennel and took him to work in his big delivery van. To make a long story short, Tuk got sick from all the bouncing around and vomited all over the kennel. Tony was not a happy camper, nor was the sick puppy – thus the end of riding with Tony. I really think God was at work having me worry over Tuk – not myself.

Dr. Chang was right. I was ready to go home in 5 days. It was a challenge as I had to use the slide board to move from the wheel chair to the car seat or bed. I would not receive a new prosthesis until the wound had healed properly, about three months.

Sharon and Bonnie J. were helping me while Tony was working, he was exhausted and so worried which made him delve into his work more.

So began the summer of 2005, healing and getting prepared for a new prosthesis, and training Tuk. He was so much company for me. I know having him kept my mind/body occupied and healing. Of course all the visitors helped tremendously, bless them all.

Bonnie’s continuing story

Charcot Awareness Education Foundation