Diabetes Self-Management Blog

Maybe I have an(other) infection in my calcaneus (heel bone). If so, it will be number three. I’ll know more after I have a nuclear bone scan on Thursday. (I’ve gotten quite good in the past few months at deciphering bone scans.)

Hopefully, the latest news isn’t bad, but I’ll admit to hearing my car’s tires repeating “I could lose my foot. I could lose my foot,” all the way home from the doctor’s yesterday.

I’ve already had a good portion of my calcaneus removed in two surgeries. How much more if needed? I don’t know. Will the infection, if indeed there is one (and lab tests point to one) be cleared up with one more surgery? Will I have to have all of what’s left of my calcaneus removed? What do you do without a heel bone? When it comes to walking, that is.

On the other hand, I’m not exactly walking now unless I’m leaning pretty heavily on a walker.

Is the infection a run-of-the-mill one, albeit stubborn as heck? Or is it connected to that case of MRSA I had back whenever it was? Invasive MRSA can lead to bone infection.

Usually, I’m pretty much a Pollyanna kind of person. Oh, I sometimes think about the worst case, albeit fleetingly, but assume that it won’t happen. It probably began as a defense mechanism against my grandmother, who I spent a lot of time with. She always expected the worst. “What if you do such and such and so and so happens?” she would say.

“What if it doesn’t?” I would answer back. And it usually didn’t. (My husband takes after my grandmother a bit. I suppose at least one of us has to worry.)

Or maybe after telling everybody I probably have a bone infection, I’ll have to embarrass myself by confessing next week that I don’t. Or didn’t. Which would be a good thing. For that, I could take some embarrassment. Even a lot of embarrassment.

The other thing that happened in the past week is that I went to see my regular podiatrist, Dr. A. He’s the one who referred me to Dr. B, whom I’ve been seeing for the past year and a half (plus one week and three days, but who’s counting?).

Dr. A said he hadn’t heard anything from Dr. B, so he’d assumed all was well.

I wish. Over the past year and a half, I told him, I’ve had six surgeries. I’ve had MRSA. I’ve had C. diff. I’ve rarely slept in my own bed because the bathroom is too far away to walk there comfortably. Instead, I usually sleep in a recliner that’s only five feet away from a half bath. I’ve taken maybe two “naked” showers: That is, a shower without a plastic cover over dressings on my foot and leg. I haven’t ridden my bike. I haven’t been in a swimming pool — not to play; not to exercise. I’ve been on antibiotics almost constantly. Therefore, I’ve had diarrhea pretty much constantly. I’ve had four PICC lines. My blood glucose has been on a roller coaster depending on whether I’m on antibiotics or not. I’ve cut back considerably on work because I haven’t felt that well.

So Dr. A said he’d call Dr. B. After a meeting he had in 10 minutes. “It’s going to take longer than ten minutes,” he said. (Dr. A did not sound happy.) Yesterday, when I saw Dr. B, there was no mention of Dr. A. There was also no eye contact. He did order a bone scan right away, which is good. I’m trying to decide if I want him cutting on me again.

I’d been wanting to see my regular doc for a long time, but was hesitant. Frankly, I believed protocol was being followed. And I didn’t want Dr. B to feel bad.

Protocol dictates that, every time a referred doc sees you, he sends a note to the referring doc, a physician friend tells me. “I performed surgery on patient on date, during which I blah, blah, blah. I will see patient in my office in one week to etc.” “Patient presented with a slight infection, for which I etc.” “Infection has gotten worse; patient has been referred to Dr. C, who is an infectious disease specialist.”

Etc.

Wasn’t done. At least not after the first little bit.

As far as protocol on my part, I believe I’m to wait until I’m released by Dr. B before I go back to Dr. A. If I’m wrong, I’m sure somebody will let me know.

Finally deciding that the doctors work for me and that I’m the one who cares about my well-being more than anybody else, I called Dr. A and asked if I could please come and see him. “Of course,” he said.

So here I am. I’m not sure if I want to continue seeing Dr. B, or if I want to ask Dr. A if he’ll take over my care. Dr. B is a good doctor. I just don’t feel that he is listening to me. Dr. A is also a good doctor and has several more years of experience than Dr. B. He’s also taken care of my feet since the 1990’s, knows me and knows my quirks — including the fact that I don’t often freak out, unless I’m in fear of losing a foot or something.

One thing I’m sure of, however: With the foot thing and with the recent discovery of some background retinopathy in my eye, I’m going to stop joking about ending up as a blind, bilateral amputee being carted off to dialysis three times a week. It’s getting too close for comfort.

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Comments
  1. I hope that you get to take some embarrassment and don’t have an infection! I have been in your shoes (or should I say blue surgical shoe) before so understand what you are going thru. I also had MRSA and several other nasty little bugs, along with numerous surgeries and IVs. I did lose part of my heel because of the infection and had some foot reconstruction. If you decide you want to dump Dr. B, just make sure his replacement is a surgeon that does foot reconstruction. If I had not dumped my Dr. B, I would not have my foot today. I had to travel to another city and it was still a fight to save my leg, but it was worth it. Good luck to you!

    Posted by Kelly Booth |
  2. hi jan–

    i am so sorry for you for what you have been put through. in my opinion and if i am understanding your story correctly, the doctor that put you on a treatment (experimental ???) protocol not only should have report/told the (your) referring doctor not only what was done, why, when, and the result of the intervention/treatment, but the fact that you had been enrolled in a “protocol” should have been included in his letter as well. in my professional opinion…SHAME IN HIM.

    now, regarding your actions/thought on whether or not to continue seeing this “protocol” physician, the national institutes of health (NIH) MUST approve any and all treatment protocols. as such, there are several rules/rights/privileges present that are designed to help or direct what the not only what participating patient(s) should AND are able to do when (the patient”s) concerns are raised. perhaps the most important one is the simple FACT that the patient may withdraw from participation (inclusion) in the treatment protocol AT ANY TIME. additionally, and this is simply part of YOUR options/responsibility as THE PATIENT, you are in no way required to continue to see ANY physician if you feel that your treatment results are not to your liking or understood expectations. furthermore, and this is simply a difficult (and embarrassing) situation resulting from the paternally-oriented (read this as “i (the “all-knowing” physician know what is best for you) attitude under which my professional colleagues practice their profession. you need to understand that this is NOT necessarily anything that is a fault/attitude of this doctor, but could, and has been shown to be, a result of the particular programs (school and residency) through which the physician received his/her training. all that said, as the patient, it is incumbent upon you to ask your physician any and all question you may have; and it is the responsibility of the physician to answer them…even if his answer is “i don’t know.” with this answer/situation, the physician must then search out the answer for the patient.

    i hope i haven’t been to wordy with my response but i really felt that these thoughts should be presented to you.

    Posted by luis e remus, iii, phd, md |
  3. Jan! I am so appalled at the lack of communication in this day and age of “electronic” communication. I worked for many years in the health care field, have been type 1 diabetic for almost as long and doctor to doctor communication today is so terrible! And communication with patient is even worse. What can we do? So sorry to say but your problem is just one of many and I wished I had an answer. My own best doctor. S

    Posted by Sudy O |
  4. Jan, thoughts & prayers are with you. By all means, if you feel uncomfortable with Dr. B & Dr. A says he will see you, go back to Dr. A. It’s your foot and you want to keep it. It’s also OK to be grumpy. I’m getting a good case of crankiness just hearing your story. Diabetes can be a damned nuisance.

    Posted by Cathy A, |
  5. Jan,
    Hoping to hear you are totally embarrassed and DO NOT have a bone infection! That would be wonderful. This has been a very bad year and you deserve some good news. I agree with all the posts here in response to your questions. All doctors’ communications in the present day do not meet any of my expectations–both with other doctors and with me. Doctors once sent letters to other doctors when a patient was referred. I know because I worked in a clinic and saw the letters in the patients’ charts. They explained what they found and what treatment they were using. Just common curtesy. Now days I don’t think they even send an e-mail. Beats me how any doctor ever knows what is going on when the patient has to return to see them and fill them in on every thing that has occurred. But you definitely do have the right to see another doctor anytime you are uncomfortable with treatment. I would ask Dr. A about other specialists you can see–the very best he can refer you to. Praying for the very best.

    Posted by Linda M. |
  6. I don’t think I’m going to be embarrassed. I’m not a professional, but I’ve seen enough bone scans lately and these look a lot like the last two. Both of those times, I had a bone infection. Maybe I’m reading them wrong. However, I will say that the technicians indicated they agreed when I commented it didn’t look good.

    I do have to say I love this community! Bless you all for your suggestions and words of encouragement.

    Jan

    Posted by Jan |
  7. The way I handle things is to find another foot doctor that comes qualified and is seemingly interested (whether he really is, or not) in his patients. Then I ask my primary doctor to refer me to him. My doctor supports me in doing this. Doctors are usually agreeable to getting a second opinion.

    It seems more and more that we “diagnose ourselves” and find our own preferred specialists. Find a qualified doctor through asking friends and your primary doctor. The patient representative at a local hospital is a friend of mine and helps me locate capable doctors. If you have a nurse friend she probably hears discussions about doctors. Of course you can be more comfortable with words of wisdom from a friend. You’ll probably be surprised at how many others have foot problems, too, though not as serious as yours.

    I’m certainly not qualified to tell you what to do but I am diabetic and have some other issues. So I’ve been the one who searches for what I need.
    Hope you find a good doctor soon!

    Posted by Beth |
  8. granny, i am hanging with ya, and I am sad that you aren’t red with embarrassment…..fire Dr. B and find another doctor….Where are you seeing your docs? In Indy, I assume? Maybe you need to go to Chicago for better care? it shouldn’t have to be that way, and I too am a frickin’ pollyanna, but dammit this sucks and I am mad that your doctors won’t play straight with you…..i love you. hang in there my darling!!

    Posted by Sara Smarty Pants |

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