Again I want to thank the folks from around the world who have expressed moral support for Chey. In particular I want to thank fellow veteran IT writer Mark Gibbs for shining light on the situation in his Forbes blog.
Why Not Palpate and Evaluate?
As I sit and wait for calls to be returned I get a chance to replay events of the past few days and new questions come to light, like: "Why did nobody at the hospital palpate Chey?" Okay, that sounds a bit weird if you don't know that palpate is the medical term for pressing on the patient's body (like many people I sometimes misspeak the word as palpitate).
A good doctor can tell a lot by probing major internal organs this way, as well as getting tactile feedback, i.e. patient response to touch. One of the first Google results I found on the subject describes how you would examine someone with musco-skeletal problems like Chey. You don't have to touch Chey much to tell she is in a lot of pain, yet nobody seems to have tried that.
Of course, pain is a hard thing to quantify. Different people have different tolerances for pain. For example, Chey can pick up hot things that I can't bear to touch. Is she a Spartan? Am I a wimp? Is there a way to evaluate this stuff?
Yes, there are several ways to arrive at a measure of pain, or the effect of pain. Here is the US English version of the 24 point version of the Roland-Morris disability questionnaire from MAPI, an organization that seems to focus on quality of life measurements and standards:
When your back hurts, you may find it difficult to do some of the things you normally do. This list contains some sentences that people have used to describe themselves when they have back pain. When you read them, you may find that some stand out because they describe you today. As you read the list, think of yourself today. When you read a sentence that describes you today, mark the box next to it. If the sentence does not describe you, then leave the space blank and go on to the next one. Remember, only mark the sentence if you are sure that it describes you today.
- I stay at home most of the time because of the pain in my back.
- I change position frequently to try and make my back comfortable.
- I walk more slowly than usual because of the pain in my back.
- Because of the pain in my back, I am not doing any of the jobs that I usually do around the house.
- Because of the pain in my back, I use a handrail to get upstairs.
- Because of the pain in my back, I lie down to rest more often.
- Because of the pain in my back, I have to hold on to something to get out of a reclining chair.
- Because of the pain in my back, I ask other people to do things for me.
- I get dressed more slowly than usual because of the pain in my back.
- I only stand up for short periods of time because of the pain in my back.
- Because of the pain in my back, I try not to bend or kneel down.
- I find it difficult to get out of a chair because of the pain in my back.
- My back hurts most of the time.
- I find it difficult to turn over in bed because of the pain in my back.
- My appetite is not very good because of the pain in my back.
- I have trouble putting on my socks (or stockings) because of the pain in my back.
- I only walk short distances because of the pain in my back.
- I sleep less because of the pain in my back.
- Because of the pain in my back, I get dressed with help from someone else.
- I sit down for most of the day because of the pain in my back.
- I avoid heavy jobs around the house because of the pain in my back.
- Because of the pain in my back, I am more irritable and bad tempered with people.
- Because of the pain in my back, I go upstairs more slowly than usual.
- I stay in bed most of the time because of the pain in my back.
Okay, so Chey's responses to this assessment today are Yes to every question except 19 and I would say 19 is only No because she is stubborn and refuses my help. Note that 20 and 24 are a bit tricky. Does Chey stay in bed all day? No, but she could be said to spend most of the time in bed, and when she gets up and moves to the sofa she mainly reclines on it, she does not really sit on it for long.
If, during this whole ordeal of questioning her need for pain relief, someone had used this assessment on Chey they might have understood how much pain she was in. Of course, they also could have looked at her medical records and the scans that show some pretty brutal spinal anomalies, but hey, what do I know, I'm not a doctor. Or should that be: "Hey, what do I care, I'm just a doctor."
Update: At 5pm I got a call from the patient advocate at Sharp that might be the start of a solution. Will have to see what tomorrow brings.
I happened upon your blog while trying to learn a bit about hemochromatosis. I am in treatment for Lyme Disease and CFS/Fibromyalgia, and my doctor found an elevated iron level on my most recent bloodwork. I was not able to read very many of your posts regarding your wife's health, but I saw today's and a few others. I'm sure you've had many suggestions from other readers, so this may or may not be at all helpful, but I identified with a lot of your wife's symptoms and experiences. So, I felt compelled to share with you a little bit of info on Lyme disease: www.ilads.org. It is a largely misunderstood by the medical community. It took me over 15 years to be diagnosed, and while I feel lucky to have not found myself in the terrible situation your wife is enduring now, it very easily could have been my reality if I was not diagnosed and treated. I know now is not likely a good time to start looking into new diseases, but maybe at some point in the future, the info might be helpful.
ReplyDeleteThanks for the suggestion. We did look at Lyme Disease and have ruled it out, but you are right that it very much misunderstood. In that way it is like HH because some doctors cheerfully assert that the whole thing is hoax, a non-serious, non-disease. Then you find the real experts in the disease and they will show you the stats on how many people die from HH or complications thereof, plus the stats on how manylives could be saved if more doctors took it seriously.
ReplyDeleteI also happened upon your blog researching hemochromatosis, (very helpful, thank you). Will be getting tested very soon - female 58 yrs old with Irish/Scottish ancestry and 10 yrs of diagnoses including fibromyalgia, chronic fatigue syndrome, non-specific hepatitis, mild fatty liver, celiac, osteoarthritis, osteoporosis and recently UCTD (undifferentiated connective tissue disease). Family medical history lines up neatly with this whole thing, unfortunately. So we'll see.
ReplyDeleteI have read repeatedly that arthritic type pain doesn't improve (generally) after treatment for HH, but an article on www.musculoskeletalnetwork.com states this:
"Some patients experience improvement in joint symptoms after iron depletion therapy, but the majority do not. In some patients, the first onset of arthralgia occurs after phlebotomy therapy is initiated.20-22 Currently, predicting which persons will experience improvement or worsening of joint pain after iron depletion is not possible."
A small blip in the text of the article - but an important one. I hope Chey is recovering from her recent and outrageous nightmare, courtesy of the health care system.
Michele -- Thanks very much for your comments and that article reference. And by gosh your case mirrors Chey's in so many respects.
ReplyDeleteIn fact, I think there is an epidemic of cases like yours: female 58 yrs old with Irish/Scottish ancestry and 10 yrs of diagnoses including fibromyalgia, chronic fatigue syndrome, non-specific hepatitis, mild fatty liver, celiac, osteoarthritis, osteoporosis. That reads like a summary of Chey's medical record. Fortunately, the new/better doctor that she is seeing now is the first one in 10 years to really look at the whole picture, and to see that HH might well be the culprit.
My own theory is that HH was a brilliant genetic mutation thousands of years ago when women needed all the iron they could get to survive multiple childbirths and poor diet. Monthly blood loss regulated the buildup of iron but iron was accumulated during pregnancy. This was a positive selector in genetic terms (hence it spread ahd did not die out). But thousands of years ago most women did not reach menopause and so the toxic iron accumulation in older women was seldom seen. These days, based on the women who comment on facebook.com/Hemochromatosis, it is not unusual for doctors to come up with a whole bunch of different diagnoses before they see hemochromatosis.
It doesn't help that a lot of primary care doctors don't know much about HH except that it has something to do with blood, so patients get referred to hematologists, and as far as I can your average hematologist has zero interest in HH or treating people with HH.
Maybe next month, which is National Hemochromatosis Awareness Month, we can get a few more doctors up to speed on this condition.