Archive for February, 2013

Recovery can be Like Traveling in an Unknown Land!

I’ve known Bonnie for several years now. I first posted her story in 2011. I am going to briefly share some of her recovery story as I really don’t know how she did it. She is an incredible person with a very strong faith that pulled her through.

Bonnie’s feet had been swollen, sore and red, but one morning she woke to blood in her bed. a bone in her foot had broken and punched a hole in her foot. After panic and stress she finally found a podiatrist she had seen before who now diagnosed her foot with Charcot Foot.

He sent her home to get the foot better. Her bedroom in this apartment was 20 steps up so this meant recovery would be resting on the couch, foot up, non weight bearing, so the hole would heal. She could use a walker. A nurse visited her daily. She was on antibiotics. This lasted three months.

Because of the lack of exercise and movement she found herself back in the emergency room diagnosed as anemic, low iron count and finally admitted and given a blood transfusion. The broken bone and hole wasn’t healing. the infection was finally identified as MRSA. (not something you want to mess with)Mersa Because of the lack of exercise and movement her muscles were beginning to atrophy. Depression, too, had set in.

Fortunately a good friend was helping her and began taking notes at each doctors visit as so much information was coming, it was hard to keep it all straight.

Finally, they wanted to do exploratory surgery which ultimately resulted in amputation, not just one but two ending with the B K Cut.

I’m really amazed Bonnie is alive as this was just the beginning of her “recovery”. She ended up with Kidney failure having to have kidney dialysis. She had breathing problems and ended up on oxygen for a while. She had a couple bouts with pneumonia, this lasted three months spending time I the health care facility and the hospital. For eight weeks her kidneys did not work. She also had to deal with a feeding tube. It was over three months before she ever went home to begin the recovery Process.

It seems to me, Bonnie’s new mission is to help me help you to understand other situations and problems someone with Charcot could experience and to have faith in dealing with this devastating disease.

Next week Bonnie at home.

Bonnie’s contueing story, brought to you by Charcot Awareness Education Foundation

The Reality of Recovery Isnt The Same For Everyone

Since we started the Charcot Awareness Education Foundation, we have learned a lot from others who have this devastating disease. I was very fortunate to have a very dedicated professional caring for me. Some have told us they worked with a doctor who merely turned them over to a foot surgeon who counseled with them briefly. I worked with my surgeon nearly two years before the surgery. I was well counseled and he was very sure of what I was going to be doing and who was caring for me after surgery. Others have said after the surgery they saw the surgeon before they left the hospital and maybe at the next appointment and never again. My surgeon saw me every appointment I had after surgery until he was satisfied that I could see him at three, or six month intervals. Even after he left this practice and moved out of state, his replacement, who knows my case well, sees me every six months for a regular check up even though I see my regular doctor and my podiatrist on a regular basis.

Each person, with has a unique problem. It upsets me when I speak of the disease and people say, ”Well, it’s not life threatening, like cancer. You can get along just fine.” After the past week, or so, I’m not so sure. I’ve always been concerned about one’s quality of life. Those living with a physical disability have many obstacles they must over come. Recently, I received an e-mail from a wife of a man who had Charcot and had surgery in June of 2011. They had put some external rods in his foot to stabilize it. The rods started shifting when he started to put weight on the foot. They then had to remove all the rods. Shortly thereafter they did a second surgery to repair the foot as his bones were shifting again putting the rods back in only to have them taken out again in September. Can you imagine the stress?

In October they learned that he had developed a blood clot in his leg. He was given coumadin for this to get in the therapeutic INR range. They never got there, as, he passed away early in the month of November of a pulmonary embolism.

Think about the healing, the pain, how you would feel about the adjustments, about you as a productive individual, how your body can deal with this constant, or at least it seems that way, invasion. Well, the next happening death. Yes, Death. Tell, him , his wife and me Charcot isn’t life threatening.

Maybe it shouldn’t be, but if our doctors aren’t competent, or knowledgeable, it certainly is. In a study the University of Washington did a few years ago, they stated one in every 700 diabetics have Charcot Foot and aren’t being diagnosed. Diabetes is only one of 24 diseases that makes Charcot worse.

His wife added this in her e-mail to me. “ I pray for all the people who have to deal with the sufferings of Charcot foot. Thank you very much for your website and God Bless you for making people aware of this!”

I will continue with other recovery situations next week.

Brought to you by Charcot Awareness Education Foundation

The Reality of Recovery

Passing time between appointments, healing, keeping busy, staying comfortable and learning to go out in public now my new goals. One really needs to set these goals before you have surgery. Plan with someone, a spouse, caregiver, professional, or a good friend that may be around a lot. Have a pretty good idea about the length of time you will need to get well, the type of care you will need, how mobile you will be. In my instance, I knew I would not be able to walk, climb stairs, move around, take a shower or bath, especially the first three to six months. Because of these limitations, it was suggested we consider a care facility. But after Max and I talked it over, we decided we had a space that would work for us, the studio in our home. Max could care for me there.

I really wanted to be as independent as possible. I soon learned I needed a lot of help. The hardest was waking up at night, having to go to the bathroom and having to wake my husband every time. Max had to put a shoe on my left foot and steady me, so I wouldn’t fall as I hopped on the foot. I couldn’t lift my right foot up, because of the Orbital Fixator, to even get back in bed. He had to. If I wanted to read a magazine, sort papers, watch TV, draw or write, we had to organize things in such a way that I could reach them on a small table by the bed, or have them placed on the bed. Other wise I would drive him crazy. He spent a great deal of his time in the computer room next door. This meant if I needed him, I could call on the phone, but he checked on me regularly, so I didn’t need to call very often.

There were times I just enjoyed looking outside. Since it was summer, PB080025we could leave the sliding glass doors open with the screen in place. I really enjoyed the deer bringing her twin fawns by, all the chipmunks, birds and especially the Pea Hen as she seemed to check on me. We would carry on quite a conversation at times. Our cats kept me company. They didn’t understand what was going on.

P7260049I was beginning to become uncomfortable. The mattress on the bed was really old. My legs were hurting, not to mention my behind. Max would have to see what he could do about the mattress. I was sleeping off and on all day. Some times at night I couldn’t sleep. One of my good friends would record movies and programs for me. I often watched them at night.

Bath time was a new experience. I began to appreciate those soldiers that were in the field with no facilities. I used disposable wash cloths that were heated in the microwave. I even had a shower cap that I could use to wash my hair. This took some getting used to until I could finally use a basin with real soap and water. Just try to keep the bed dry.

Our friends, neighbors and our son were great. They came to visit P9040029often and many times brought food and flowers. Get well cards came from every where. Soon, I was on the phone visiting with friends and relatives across the states. I also wanted to know more about . I remembered our local paper, the Central Kitsap Reporter, put out a health issue at the beginning of the year. I called the editor, after a brief discussion about Charcot, they decided to do an article on me as they were unfamiliar with Charcot. They sent out a reporter, Erin, who took pictures and interviewed me. I was pleased at their interest and the article they published 10/8/2007.

First Clinic Appointment After Surgery

I really didn’t know what to expect from the first visit to the clinic after being dismissed from the hospital other than the redressing would be done. I really wasn’t looking forward to the ride back to MAMC either. Getting into the van was an ordeal, but the ride was short as I slept most of it. The gate ID check at Fort Lewis was funny as the gate guard couldn’t find the second person. My Husband had to tell him I was behind him in amongst the pillows. He laughed and passed us on through.

P7180028Once in the wheel chair, we headed to the Limb Preservation Clinic. I checked in, waited for the medic to ask his usual questions, take my blood pressure and show me to the room to wait for Dr. Roukis. He never kept me waiting and always tried to keep a pleasant atmosphere. Since I hadn’t slept well the night before, Max and I had watched a Russian film “The Cranes Are Flying”. A love story based around war. It had a sad ending as the girl goes to meet her love who is coming home, but he wasn’t there. He had been killed. Dr. Roukis poo-poohed the love story. Dr. Schweinberger, Alice and I, then, shared a moment at his expense.

Now, for the serious part of the appointment. Since I hadn’t seen P7180011any of what had been done to my foot, Dr. Roukis gave me an option. I could watch the entire process, or I could lay back and not watch. Of course I elected to watch. Dr. Roukis had taken pictures during some of my appointments to record my foot problems. I had brought my camera today. I asked him if I could take pictures. He said, “Are you planning a law suit?” My response, “Do I need to?” He then said, “Go ahead and take pictures”. I am so glad he did. It helped me in so many ways. Hopefully, now educating many about Charcot Foot and the process to save the foot.Dr. Roukis took an hour to change the dressing, scrub the leg and foot, use the Betadine and repack the Orbital Fixator. His assistants did just that, assist by handing him betadine strips and anything else he needed. He used the strips to wrap the lower part of each P7180022wire, sliding the strip down the wire and pressing it firmly into the flesh. That was not comfortable and a bit painful. He wants NO INFECTION! In fact, he said, “You don’t even want an infection.”

Apparently, I must have had a strange look on my face as he asked me if I was okay? I was fine. I was fascinated with the wires going through my leg and foot and amazed at the lack of pain. The device was more awkward and heavy than painful. Dr. Roukis was pleased that there was very little swelling. These appointment were scheduled about two weeks apart. I would be in the Orbital Fixator for two to three months depending on the healing progress.

It was great to be able to leave the clinic feeling really positive.

Brought to you by Charcot Awarenes Education Foundation