Chicago Appointment Details

Good Morning! I apologize for the delay in writing and not updating on Friday night. Yesterday was a really long day. I had to find a Panera bread to get wifi access and then I needed a few minutes to sit and type. My mom's sister is in IL from FL, so we had dinner with her last night. We are staying at the Eickhorst family farm and there is no wifi in the corn field.

Here is the scoop .....

Thank you, thank you for praying & thinking of us during a challenging appt. yesterday ... we felt it! Overall the appt. went much better than I expected and I was able to make it through the entire meeting without any tears. We waited over an hour to see her, but it was worth it. I wore a new fall outfit and managed to find a pair of shoes that I could get into at Macy's, so I was feeling good. I had a list of 22 typed questions that I was prepared to ask. I had prayed hard before the appt. for strength to get through whatever would happen.

Dr. P was her usual calm, gracious self and was happy to see us. She started by stating that she felt really awful about my situation and that she knew I was in a hard spot. She explained that her reluctance to recommend further surgery simply came from the fact that most of the operations we have done have not yielded the intended result. She wanted to examine my foot & then wanted to hear me talk about it, so that happened. She told me that she has thought and thought about my situation and how to help.

She thought that the way the foot looked and healed from the transplant (TX) surgery was the best that she'd ever seen. The swelling was totally gone and the overall appearance looked fantastic .... I'd agree. She said again that my TX dr. did an awesome job.

She thoroughly examined the foot, moved it every which way, and watched me walk in her hallway multiple times. She agreed fully that we still have two substantial problems:

1. Heel problem - I walk on the heel only and the toes remain fixed off the ground Even in a shoe, I still bear weight only on the heel. She tried to push it down manually and it pops right back up. She couldn't believe that they didn't go down when the toes got tired, but I said they are always fixed up.

2. Forefoot motion - none exists

The thing she is most concerned about is the first problem. She stated that it is definately not a "liveable" situation, which was good to hear this clearly stated. I will have back, knee, hip issues occur if it is not fixed. She was surprised that I am not in a lot of pain now, w/the odd gait pattern that exists. There is no obvious reason why this has happened & she has not seen it before. She isn't sure how the heel situation can be fixed, but she wants more information.

In the middle of her looking over the foot, the idea came to her to have this test run called "Gait Analysis." It was like a little lightbulb just went off in her head. It is a test related to nerves and walking that clearly shows what is working, firing, and happening when I step and walk. (We've done nerve tests before, but never while I was walking.) She even said herself that the idea just came to her, so I felt like someone was praying for wisdom at that moment. The test is usually run on children, but it is also used for adults.

She does know (at a minimal level) the doctors in Baltimore and Dallas, that my STL surgeon recommended for a second opinion. Her advice was to do the gait test and we'll see what that reveals, before we decide on any next step. She thought it was premature for me to meet with the amputation doctor or spend a lot of money on other opinions right now. They may still be needed, but for today her recommendation was to do the test, wait, and see what happens. She wasn't convinced that I'd hear a lot different or new in Baltimore or Dallas and she totally understands that I don't want to spend a lot of money without good reason.

Although it was hard for me to hear do the test and wait, I was amazingly okay with that advice yesterday. She gave no indication that she was done working with me or wouldn't continue to meet/consult. If the gait test comes back normal, we will then need to figure out the next best step. I was going to ask if she'd continue to consult, but I skipped that since she didn't bring it up. She knows I am doing everything I can from my end to make this better & fully agreed that it is not about me trying any harder.

I didn't ask the majority of the questions that I had prepared because I felt like the conversation just kinda played out differently and most were "ahead" of what she was thinking. I made it very clear that I didn't want to rush or pressure her, which I think helped. She may still not recommend more surgery, know what to do next, and we may still be totally out of options, but none of that happened yesterday. She said to keep exercising on my own and hold off on more pt for now.

Finding someone to do the gait analysis test in STL is going to be somewhat challenging, but she is going to see if the person in her office that does it might know a place where it can be done in St. Louis. As we wrapped up the appointment, she gave me a hug and told me that we needed to get my foot functioning as pretty as I looked (big self esteem boost, that I needed).

I was very thankful for ....
- no indication that she was going to stop working with me.
- amount of time she spent with us was significant
- that she realized a real problem still existed and that it needs attention
- waiting; perhaps this is the wisdom that was revealed - perhaps surgery would be
more appropriate in several months.
- candid advice; we don't have to hurry off to see a new dr. tomorrow

Although we don't have any big "plan" in place, for today I can live with doing the gait test, continuing to exercise and then talking further. I left her office with a great amount of peace and thankfulness for our doctor/patient relationship .... I will never find anyone that cares more & was very happy that for now we can continue to work together.

Many thanks again for praying .... we felt the encouragement and hope to hang in there a bit longer yesterday.

Love & hugs,
jenny