I'd writ
ten this about "new" pain we experience and how doctors need to keep listening to us after my last disastrous time in the hospital two weeks ago.I think we can ignore pain changes to our peril. The first doctor I had cost me three additional days of hospitalization and untold agony. She might have cost me my life if I had been "bleeding out" from LAM tumors.
Many more untoward things happened on this stay but I though this had the most relevance to the
CPL readers -- PAIN, and health care providers. I know it's long and I've got shorter, more upbeat things in the hopper but this was really on my mind. If it works out great. I won't be so long winded again. Since I'm trying to get some strength back and my arm is still bruised and swollen it is hard to forget what happened.
In Pain and in Big Trouble
Those of us living with constant pain try to find ways to deal with it and continue. We become so used to our pain "level" that new pain can be ignored for a while until it takes us down. It just happened to me.
The little pain chart with the unhappy or smiley faces and the 1-10 scale are usually a good way of relaying how much pain you are in to health care providers. Unfortunately for those of us in constant, excruciating pain there is no rating of "13" or a screaming, agonized face portrayed, however. But doctors and nurses are always supposed to believe you about pain. You feel what you feel and just how strongly you feel it. When they don't listen and don't believe it's bad enough. When they don't care and SAY they don't care you are in trouble.
I was in the hospital and in trouble. My lungs had shut down from smoke inhalation and a really terrible asthma attack. I was truly writhing in pain from my right flank, making it difficult to keep the oxygen mask on. I'd received great ER care. I'd gotten a lung CAT scan to check for blood clots, O2, breathing treatments, and they'd insisted on giving me more IV pain meds (as watching my pain made them uncomfortable.) They wanted me admitted to find the very real cause of the NEW, severe pain. They feared LAM, which can cause tumors on your kidneys, had. Those tumors might be bleeding out. Only a kidney CAT scan with contrast would show that. I also needed a PICC line for IVs, blood draws, inserting meds, etc., as my veins were collapsing. The ER staff was efficient, caring and concerned.
Once admitted however, I ran into Dr. J. H. - a brick wall. She flatly stated, "It's not my job to treat you. I'm not interested. It's my job just to watch you until Monday. I don't care if you are in pain. It's not my problem." She went on to tell me that our regional TRAUMA center didn't run CAT scans, routine tests, put in PICC lines, or administer many pain meds (read narcotics) over the weekend. According to her the weekend began Fri. morning. I'd collapsed and been admitted Thurs. night.
Of course the trauma center does routinely do all of those things, but only if your doctor orders them. I'd been assigned this doc by the vagaries of both the hospital and Medicare. I was stuck with her until I could gather myself enough to call outside the hospital and raise a fuss. I was having trouble breathing, let alone raising "a fuss" on my own behalf.
I did manage to say I was concerned about bleeding out from kidney tumors. She said again she was "not interested." Most LAM women carry not only their medical records with them but a small booklet for docs explaining the disease. It has a 1-page chart listing complications and appropriate tests. But she said, "Let me be clear. I am not going to read the booklet. I am not going to look at the chart. I am not going to even look at the cover of the booklet. I'm going to do nothing for you and neither is the hospital until Monday, if they do then ... If you want something else check out and go to the Mayo Clinic." She turned and left never even introducing herself. I had no idea what her name was. I only knew she had said she would do nothing until Monday.
But, even that was not true. She cut the IV pain med down to almost nothing. My pain continued to rise uncontrollably. It rose far above my "normal" levels. It rose beyond that of all the natural childbirth pain I'd ever experienced having 3 kids during long labors without any pain meds. It rose beyond the ability to practice relaxation, distraction, or rational thinking. I retreated to a small corner of my mind and soul. I became an unthinking thing repeating small prayers when I came around for a few seconds.
Meanwhile, they could no longer get any blood from me (for the blood tests supposedly not being run.) I kept blowing IVs and they couldn't keep me hydrated. The team from the trauma center's emergency, lifeflight helicopter was called in to do blood draws and try to get in IV lines. Finally even they asked to stop trying. My veins just kept disintegrating. My arm was a mass of huge, deep purple bruises and they also feared blood clots. I really needed to be taken to surgery to have that PICC line put in.
God is good. Caring others advocated for me and at 12:30 a.m. Sun. morning I got an additional doctor -- Dr. Wendy, a pulmonoligist, who listened, observed and CARED. She read the booklet, chart and lung scan. She got a kidney CAT scan done. She found out I had kidney stones. Kidney stones are very painful. (No kidding.) I currently don't have any kidney tumors. At least now I know. She immediately really increased the pain medication and scheduled a pain specialist as well as surgery for a PICC line on Mon. She is referring me to a reputable "pulm", she trusts because it is so hard to find one who even wants to learn about LAM. She took the time and listened. Then she acted, acted to help me.
Dr. Wendy followed what I thought was the first thing doctors were supposed to do according to their oath. I believed it was, "first, do no harm."* It is always important to be listened to. When you are in pain it is important to find the cause. When you are in constant, chronic pain it is even more important our health care providers continue to listen to us, the patient, as to how we feel. They need to respond when our pain becomes intractable, changes, or needs another method of care. We may always be in pain from our injuries or illnesses. That's what chronic pain is, isn't it? But when those who are supposed to care for us are "not interested" even in caring, let alone caring for us, perhaps it is time for them to find another profession. Maybe they should work at a car wash where inanimate objects don't tend to feel as much as humans do. If the pain we feel changes that should never be ignored by those who care for our health.
Dr. Wendy got that. She also knows what it means to be truly human. I believe she was God sent. And she's learned and practiced what we'd all best remember:
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these."
George Washington Carver
Our life doesn't end here but our chance to interact with and assist others does to some extent. I'd like to go far with God's help. Just like Dr. Wendy. God bless everyone. Breathe in Peace, Kathy
Recent Comments