Could there possibly be anything more frustrating for us than healthcare in the U.S.? 

For days we have been in doctors’ offices and at the hospital searching for answers as to why our daughter’s left foot turns purple when she stands up, why she can’t move her toes, or rotate or flex her ankle.  She hobbles on her heel, because she can’t put weight on the ball of her foot.

Nothing is broken, she hasn’t been bitten by anything, and she doesn’t have allergies.

So what’s the problem?  She can’t drive, walk, or work and she can’t get the time of day from her doctor.  After numerous phone calls, she saw his physician’s assistant.  She ordered a vascular study, thinking it could be a blood clot, though her foot is cold as ice.  We traipse over to the hospital for that study.

Pronouncing the test “normal”, daughter falls apart.  “What is wrong with me?  I’ve been like this for 12 days and I can’t get any help or answers.”

We made the decision to camp out at the Dr.’s office until she could talk to him.  The nurse kept popping her head out to the waiting room telling us that “they will have your test results next week”, “the test results were normal” (amazing what they can find out when they try) “I’ll see what the dr. says.”  Daughter told her we weren’t leaving until she saw him.  Daughter had gone so far as to take pictures of her foot and ankle from every angle.  The nurse showed the pictures to the doctor.  She then came out and announced that they had made an appt. at the hospital for another vascular study!  The vascular study done earlier that morning had only tested the arteries.  This one would test the veins.  What the heck!!  Why didn’t they do both, if it was a vascular study?  X-rays and blood work were on the orders as well.

Back to the hospital we go.  Keep in mind that she has yet to see a doctor.  Hours later, we get a phone call from the dr.’s office.  By this time, daughter’s ankle had lost mobility.  “The tests were all normal.  The doctor said you can go on your vacation now.” said the nurse.  “I can’t walk! 

I can’t work!  I can’t drive!  I certainly can’t get on a plane for two hours.”  She was terribly upset.  “I need to know what is wrong with me.”  The receptionist muttered something about the tests were all normal.

Next day, there’s no word from her dr.’s office.  Through a chain of friends, she made contact with a cardiologist group.   They told her to go to the ER.  The ER doctor made a call or two and pronounced that she has RSDS Reflex Sympathetic Dystrophy Syndrome, and that she needed to see a neurologist and pain management doctor.  The doctor’s office was to call her the next morning.

Meanwhile, the pain encompasses her entire left leg.  We come home, where we both research RSDS.  Daughter says, “I don’t have these symptoms.”  “This doesn’t make sense to me.” 

This morning, daughter receives a call from the dr.’s office, (which she still hasn’t talked to or seen her primary care doctor), telling her they had made an appointment with a DERMATOLOGIST!  Daughter loses it.  “I need an appt. with a neurologist.  Please call Dr. X.” she told the receptionist. 

She later received a call with an appointment for January 26th!  Today is the 9th!  RSDS, if left untreated can result in permanent damage to skin, blood vessels, muscle, and bone.

What’s the problem with health care in the U.S.?  Are there too many people and too few physicians?  Are the insurance companies to blame?  One thing is for certain.  They all want to treat symptoms instead of finding causes.  This isn’t health care!  How can you treat something when you don’t know what is causing it?  Way too many deaths can be accounted for using this type of reasoning.

And do you know what?  We put up with it.  What can we do to change things?  Call our congressmen?  Yeah!  That really helps.  They’ve done so much for us in the past. 

Our incoming administration has made lots of promises to us.  How can they fix or change a mindset?  We must take control of our own health care.  We can no longer expect anyone else to do it for us.  We must not accept a diagnosis or misdiagnosis.  We shouldn’t self-diagnose, but we should be pro-active in our diagnosis and care.  Our lives depend upon it.

5 thoughts on “Healthcare Is a Wild Goose Chase

  1. Pam,

    For the past 8 years, our health care industry has been permitted to run amuck with overcharging patients and ripping off various federal health care programs. Some doctors have been running scared because of lawsuits from a slew misdiagnosed illnesses and I just don’t think the Govt. cared to monitor the situation. This is the result.

    Hopefully, your daughter will find the right doctors to take care of her medical condition. She may have to search a little harder but I’m sure he (or she) is out there.

    By the way, you should submit this as an article somewhere. It’s a really good post!

  2. Pam,
    Your story of pain and frustration has gripped my heart. I can’t imagine going through this and seeing your child in such distress. This is outrageous! It’s almost as if some in the medical field have turned into a bunch of zombies without compassion or soul.
    I pray that Abby gets into see someone who can help her IMMEDIATELY and mends fully and quickly. I’m also praying for her mom who’s certainly been through the wringer herself.
    Please know your friends are thinking of you both.

  3. Pam, as frustrating as it is, you are on the right track. You must take control now and let the doctors know that they are dealing with a patient who will take charge of her own health care and demand results. One who is knowledgeable and will not take his words as gospel.

    10 years ago we went through the same sort of scenario. My straight “A”, very active daughter was suddenly failing and lacked the energy to even get out of bed in the morning. After a trip to the doctor and several blood tests, he pronounced that she was fine and it was all psychosomatic and she should see a therapist. Possibly it was stress-related. Now I know my daughter and I knew in my heart she was ill but here I had a doctor telling me it was all in her head and because I (at that time) believed all the tests, went back and told her she was fine and that she just needed to face up to whatever was bothering her and get back on track because “it was all in her head”.

    Things went from bad to worse and one day, 18 months later, in the parking lot after a meeting I was attending, someone had the misfortune of asking me how I was doing. It had been a particularly bad day and quite uncharacteristically for me, I unloaded – everything. Well, the Lord must have had a hand in this, because after I was done, the women I was speaking to said it sounded just like her sister who had been diagnosed with Lyme disease. I immediately went home, got online and looked up Lyme disease. Sure enough the symptoms sounded just like my daughter. I called the doctor the next day and told him I wanted more tests. He said he had done them all. I asked about Lyme disease and he said no, he hadn’t done one. I insisted that he do it and it came back positive. When I asked him why he hadn’t run a Lyme disease in the beginning he said because she lived in town (I guess only country ticks carry Lyme disease. Them thar “city ticks” don’t get it!).

    Lyme disease undiagnosed can cause a multitude of problems and to this day she still suffers from the aftereffects. Plus our relationship was strained for a long while because I did not believe her when she tried to tell me she really was ill.

    Keep pushing! Keep researching and asking and don’t give up until you get a diagnosis that makes sense. Many doctors today just want to run as many patients as possible through their practice so they can collect that last dollar. Don’t let them push your daughter aside. And don’t be afraid to discuss your research findings with them. Hopefully you will find a doctor like the one I see currently who knows that I can discuss my health intelligently and respects my knowledge and treats me like a person – not a dollar sign.

    I’m praying for you and for her.

  4. It’s sad but so true. A person could be dying for all the doctors know and you will still be put on hold before getting to see them. I have had appointments scheduled months down the road. Good thing I wasn’t that sick.

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