A patient advocate: This is her partner

Dr. Suzanne Koven's story:

     For many years I've provided primary care for two women in their 70s who have lived together for decades.  Perhaps because of the era in which they came of age, they'd never identified themselves to me as a couple, though it seemed clear that they were.  They finished each other's sentences, took notes at each other's medical visits, and, when I called to discuss one of their test results, both got on the phone.

     I sometimes wonder whether I should have encouraged them to be more open with me about the nature of their relationship, but I sensed this was not what they wanted. I'm still not sure I was right.

     Once, one of the women became critically ill and required months of hospitalization outside of Boston.  The other was at her bedside all day, every day.  The doctor on the case called periodically to update me - progress was at times discouraging - and her companion also phoned regularly.  She always left messages that began by identifying herself as the patient's "roommate" or 'friend."  

     Eventually, because of excellent medical care and, no doubt, the "friend's" loving attentiveness, the patient recovered and was able to return home.  When I got the call with this news, the message was slightly different:  "This is her partner...", it began.

     A small word, a subtle shift, and yet I couldn't help but read volumes into it.  I imagined the woman, after months by her partner's side, after decades of denying their relationship, finally saying to herself, "Dammit, I've earned the right."

     Of course I don't know for sure if that's what she said to herself.  But I do know this:  I received dozens of phone messages every week, thousands very year - and I can't remember one that moved me more.

     Read another story about the healing power of love in a glamorous younger couple.  Thanks to Dr. Koven for this story, reprinted from today's G section of the Boston Globe.

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

I couldn’t make it without my friends: A wrong drug error

Sharon’s story (last name withheld by request):

I had been on Effexor for a good five years at different levels; I had been decreasing it for a long period of time, but had also been using free samples the doctor had given me, for years. They come in those packs that you push through, and I collected them from other people, so I was happy to have them for free.

When I ran out and the drug company stopped sending them, I had to get a prescription and go to the drug store for the first time in a lot of years. I took the script to Sam’s; they were great; they handled it. I had it filled and started taking them.

I started not feeling well pretty immediately, but I didn’t realize that. The next two days, I started not feeling well. My symptoms were nausea and dizziness; I was light headed, and extremely tired. I had to come home from work about 3:00 to lie down. A couple of days later, I called my doctor (not the one who’d prescribed the Effexor) and they fit me in and I went in that day, because I’m not usually sick. My friend Joan says I’m always zooming around, but saw that I wasn’t at all. I started having heart palpitations--that scared me.

I went to the doctor’s and first he was convinced I was pregnant! He wanted to do a pregnancy test! But I knew I wasn’t. I had an EKG, and they did a lung X-ray--all these tests! Everything checked out OK, and he basically told me to give it a few more days. It probably was Day 8 now, and I was laying on the couch feeling crappy and Joan came over, and we were talking about all my symptoms, and she asked me all these questions: Have you been eating anything different? Are you taking a new kind of vitamin? Have you changed pharmacies? She said she read an article in Newsweek that the pharmacies made mistakes all the time—she had just read it, and that’s how it started. I told her I didn’t change pharmacies, and she asked if any of my pills looked different, and I realized they did. But because I’d been getting free samples, I didn’t put it together –I was like an idiot--because a lot of times they do.

So the next day, I still took the pill, like an idiot, and I went to the doctor, and I asked him for a copy of the prescription, and I told him what I thought might’ve happened. The doctor pretty much knew when I told him. So I took the scrip and the 9 pills that I’d taken out of the 30-day prescription, and I took it to the pharmacy, and said, Is this what I am supposed to have here? They said they have a hard copy on their computer files—I didn’t know they could do that. And they looked at the script and the bottle, and went, “Woops! This is not what we filled”!

They immediately gave me another bottle of 30 of the right timed release ones. They told me that they were sorry, and they didn’t charge me for the new bottle.

The next day I got a phone call from the pharmacist that prescribed it, apologizing, and wanted to know how I was feeling. The same day, I got a call from an independent insurance agent of some kind, who said that by law they had to report on the error, and she asked me to tell the story of what happened as well.

Three days later, I got a call from the same woman, who said that she was able to make me a one-time settlement if I was prepared to accept it today. I said, “What settlement?!” And all this information came out of the blue for me. I told her I was NOT willing to make any kind of settlement, that I needed a couple of days to think.

She had made me an offer of $1,200.

I called my friend who is an attorney, and we talked strictly as friends—I wasn’t paying him anything. And he explained to me that this could be a huge lawsuit and the company was trying to avoid it, and that I needed to think about how I felt about all of this. I explained to him that I was never thinking about suing, and that I was not comfortable with the idea of getting a lot of money from them. My friend explained to me that I had a legitimate complaint and deserved to be compensated. So we talked about different options as far as my pain and suffering, how much time I missed from work, and all my doctors’ bills—I was concerned about that because I work for a nonprofit, for nothing, practically, and I was concerned about all the medical bills I had just created.

So we came up with a number that covered all my medical expenses and covered me missing a week of work--$2,200.

Now, I still feel that Sam’s has been the best pharmacy for me over the years. They’ve been great, before, and since. Now I always open the bottle of pills when I get there. Mistakes can happen anywhere. It’s a business, but it’s human beings filling the scripts. It’s scary, I tell everybody: Check your meds!

I had two advocate friends. My life is run by my friends. I couldn’t make it without my friends.

Advice: Get a friend like Joan and Sharon’s lawyer friend to advocate with you.

Read a story about another victim who chose not to sue .

How He Saved his Manhood: Unnecessary surgery

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact.

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

Shock Number Two came six days after that scan, when I went for an appointment at the hospital's urology department.

The Registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion." They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the Internet.

But the Registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, " I think I'd be angry."

This didn't register with the Registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But he promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" -- a consulting physician -- maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consulting physician called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that it was possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

I had the operation. The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consulting physician was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the doctors' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

I thought I knew better - and, thankfully, this time I did.

Nigel’s Advice:

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the Internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.

Read the fuller story.