Adventures in Boston

I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.

There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.

Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.

I made it in OK and was relieved to see that my labs are fine.

After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.

First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!

Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.

Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.

He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.

Meanwhile, on to the award for the most annoying nurse of the day:

When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.

"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.

I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.

She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.

After the procedure when she was removing my IV, she started in on me again.

"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.

I repeated that my kidneys are FINE.

With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.

Laments of a pill-popper

One down, 21 to go.

When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.

My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.

Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.

If I read all the side effects of all my pills, I would probably freak out.

I take several drugs as preventatives because the prednisone inhibits my immune system.

When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?

Answer: "When you stop taking prednisone."

 I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.

I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?

And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"

OK, so, the big question: "When can I stop taking prednisone?"

Answer: When my liver function returns to normal.

Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.

It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.

I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.

Up stairs, down stairs

Monday started out perfectly. I went down to Longmeadow and hit some balls on a clay court with Donna. Donna was very patient. I can hit them, if you count miss-hits, but I can't move more than a step from each spot. She mostly hit them to me and we managed some decent rallies. It felt good just to hit with her.

Things went down, and thankfully back up, after that.

Dr. Alyea called that evening at 10:30 after I had gotten my blood tested locally after tennis.

He said the lab just called him about some results.

I sat down at the bottom of the stairs, panic setting in. What kind of news does a doctor deliver at 10:30 at night?

But he quickly got to the point. My glucose was very high – 400 – (normal is 65-105) and my potassium was high too, at 6 (normal is 3.5-5). He wanted me to have blood drawn the next day. The plan was for me to call Melissa in the morning to have the paperwork sent over.

Whew. I didn't realize until later that 400 was dangerously high, so I went to bed relieved.

Yesterday morning, Melissa said they actually wanted me to come in; that way if there was still a problem, they could fix it. "Could I get the blood test today and come in tomorrow?" I asked. "We'd rather you come in today," she said.

Okaaaaay.

Katie had my car with her at work (she's a camp counselor), and Joe needed his car to get to his baseball game. If it was an emergency, he would have bowed out of the game to take me, but it wasn't. We couldn't go pick up my car for me to drive, because then Katie would have been stranded.

So Joe drove me to Boston around 1, came back for his game, then turned around and got me around 10 p.m. It's an hour-and-a-half each way, not too bad once you get used to it, but kind of much to do twice in one day. Then there was the issue of me getting stranded there until around 10 p.m.

My counts weren't bad. Thanks to a dose of Kayexalate (ranks up there with Mepron when it comes to foul-tasting medicine) my potassium went down to 4.9. My glucose went down to 223 (I don't know why), still high but much better. Sodium is still low, at 125 (normal is 135-145), but blood pressure was high.

I don't know what to make of this. Melissa said much is probably drug-related. I bought a blood-pressure monitor, which I'm supposed to use once a day. Also went back on Glipizin, a pill that lowers sugar levels. I guess I'm temporarily diabetic, but the pill should get me back to normal. My diet probably doesn't have a lot to do with it, but I should lower my intake of carbs, which I eat too much of anyway. Not sure what to do about the blood pressure. They already raised my dose of bp medication, and nobody wants to raise it again.

I was done around 4, which left about six hours to kill. Diane was at the Cape. Margaret was at the Cape. Wave of self-pity. EVERYONE is at the Cape. Talked to Ben. Paraphrase: "It's a beautiful day and you're in one of the greatest cities in the world. Just go out and wander around!"

Up I got. Adventure time. Took the T to the Prudential Center. Climbed a lot of stairs. Found the Cheesecake Factory on the first level and got a table outside. Ate salmon and salad and read Lucy Grealy's "Anatomy of a Face." It was a good spot to watch passers-by as the sun cast its afternoon glow on the busy street.

Next stop: the train station at the Hynes Convention Center, where all of the multiple green lines converge. My plan was to go to Diane's and wait for Joe there. I like to consider myself a New Yorker, and my city instincts would probably come back to me if I moved, but now I am a hobbled country bumpkin with memory problems. Had to remember Riverside D (the line she's on) and Eliot (her stop). Repeated it several times.

Walked quite a ways on Massachusetts Avenue. Saw the Hynes stop. Also saw people eating ice cream. Turned the corner onto Newbury Street and found shop selling homemade ice cream. Diet starts tomorrow. Ordered chocolate chip cone. Perfect. Rich and creamy, it dripped down my hand. Transferred to cup and went outside, part of a crowd doing the same thing.

Joe called and said he was about half-way back to Boston. Found Riverside line. More stairs. Took train to Eliot, where Joe met me in the parking lot.

Home around 11:30.

This morning watched some Wimbledon, mostly Nadal-Soderling.

Fell asleep sitting up.

Balancing act

Fix one thing, another goes out of whack. That is often my experience.

I went to Boston Wednesday instead of the usual Monday so I could meet with a kidney specialist, Dr. Humphries. When I first saw the note that I was scheduled to see a nephrologist, I was taken aback due to misunderstanding the word. I thought it meant someone who studied dead people. "I think I'm still alive," I thought. Then I remembered that this was someone for kidneys and that a necrologist was for dead people. Geez.

Barry drove me in because I felt kind of shaky. My hematocrit had gone down to 24, meaning I would need a transfusion if the number didn't pick up on its own.

First I saw the kidney doctor, who was very pleasant. My ankles have been swelling, and he said that's because I'm taking in too much salt. My sodium has been quite low, so I was doing what I thought was best for bringing it up: salty snacks, salt on food and salt tablets. Melissa had said I could take two a day, and then I read the bottle and it said up to five a day. So I added a third.

That finally brought my sodium to the lowest end of normal, but apparently it was too much. I don't change my meds without asking, but I thought a salt tablet didn't count. Apparently wrong. Now I'm off salty snacks and the extra tab. I hope my sodium stays up there. My potassium, which had gone too high, finally got down to the high end of normal. I am supposed to take a sandpapery powder in water, Kayexalate, to bring it down.

He said my kidneys looked normal now but they were badly scarred from the kidney failure.

He said he'd be in touch with Melissa and Dr. Alyea and that he'd see me in four months. ("Four months!" I thought. "He expects me to be alive in four months. Cool!" Kind of depressing thought process, but understandable. I hope with time this sort of thinking abates.)

Meanwhile Melissa said my hematocrit came back up by itself to 27. My white count was stable at around 8, but my platelets had fallen from over 100 back to 59. That really worries me. But Melissa said she had talked to Dr. Alyea and he said not to worry. They've bounced back and forth before. Okaaaay then, I will try not to worry if he says not to.

Physical therapy has been going very well. My therapist said on Thursday that I was doing some balancing exercises that I couldn't have done when I came in. I like it when they bring out the toys: balls, hurdles, bouncebacks etc.

I'm supposed to do something at home every day, but going out of the house gives you more motivation. Also for some reason I feel stronger there. Often at home I get stuck when I try to get out of a chair, but at least I do get out, and I manage most days to do my mile and a half or more walk, alas, without a dog for now.