Tag Archive | anemia

Difficult Conversations

“I don’t know what I’d do if I didn’t have you,” she said to me yesterday. “I think I’d just give up.” This is the second time in recent weeks that she’s used the phrase “give up.” That’s new for her. I don’t like to hear her talk like that.

Today we saw the kidney specialist and had another difficult conversation. Her kidney function is down to 13% and it’s time to talk about whether or not she will choose dialysis when the time comes. The doctor explained that she would only be a candidate for dialysis at a dialysis center, and that she would likely have to go three times a week to be hooked up to a machine for three hours each visit.  He said that it’s not painful, just uncomfortable, and that the worst side effect most of his patients have from it is fatigue, while some actually feel better and more energetic once they’re on dialysis. He went on to explain that she doesn’t need dialysis YET, but the reason he brings it up now is because she would need surgery a couple of months prior to starting dialysis, to make a fistula in her arm for the access site.

Mom shook her head firmly and said “I’ll just go home to Heaven.”

I squeezed her hand and told her she doesn’t have to decide anything now. We’re not there yet. “No,” the doctor echoed, “We’re not there yet. And there’s a lot to consider.”

Yeah. Like how in the world I would GET her to a dialysis center three times a week, for starters. I’ve already been out of work for almost seven months, and I have to go back to work as soon as possible. Once I start a new job, it will likely be quite some time before I can manage even half a day off ONCE a week.

But the bigger question is, how much would dialysis help? I’m only just starting to research this, but my initial findings on the internet tell me that there are pretty serious risks for patients over the age of 80. She’ll be 90 in in a little less than three months, and with all her other health conditions, I’m not even sure if she’s a good candidate for dialysis at all. But once it’s determined that her kidneys can’t function without dialysis, she may only live a few months.

I’m not ready for this.

I’ll close this with some good news. The two Procrit injections she received bumped her hemoglobin count up from 7.9 to 9.6, so the doctor says she’ll only need them once a month at most.

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Medication Merry-Go-Round

Mom has had anemia for some time; both low iron and low hemoglobin counts. She’s been taking iron supplements for over a year. In mid-December, her hemoglobin count dropped to 6.7, which required an overnight stay in the hospital and transfusion of two units of blood. Even after the transfusions, they only got the count up to 8.3. (A healthy RBC count is around 10-12.) The anemia is being treated by her nephrologist because it is often caused (at least partially) by chronic kidney disease.

Recently the nephrologist prescribed injections of a drug called Procrit, which stimulate the body’s production of red blood cells. The drug is expensive and requires preauthorization for insurance coverage, which took us a few weeks to obtain. I was thrilled when we obtained the preauth, but when the specialty pharmacy called to tell me the medication was ready, I had sticker shock: 6 shots, a 3-month supply, was going to cost us over $1100 out of pocket.

I got the pharmacy to fill just two doses (at a cost of $367) for now, since we simply don’t have $1100 to splash out all at once. Mom got her first injection on Wednesday. It’s not a fast-acting drug, so we won’t know for at least 2-3 weeks what kind of difference it’s making. Also, from what the medical assistant who gave her the shot said, it’s a maintenance drug that needs to be continued; if she goes off it, her RBC count is likely to drop again. And if it drops below 7, back to the hospital for transfusions she goes.

The specialty pharmacy gave me a courtesy call yesterday, and I explained that we don’t know how we’re going to pay for this medication yet. They transferred me to a department that helps patients apply for co-pay assistance, and I was given information on three foundations that help Medicare patients with co-pays. Long story short: Hopes up, then dashed again. I’ve spent the last two hours on the phone and on websites for these three foundations, and all of them have funds available ONLY for people with specific diseases. If Mom had cancer and her anemia had been caused by chemotherapy, she would qualify for assistance. If she had any number of other specific diseases, she could qualify for assistance. But nobody seems to have funds available for a Medicare patient with anemia due to stage IV chronic kidney disease.

I’m feeling very discouraged right now.

If it’s not one thing…

Friday was one of those days. Mom had her first session with the physical therapist, and it did not go well. He had her lying on her back on the bed doing leg stretches and she was having trouble breathing, and he got snippy with me because I “undermined his authority” by responding to her needs without clearing it with him first. Even with the oxygen cannula in, her sats didn’t get above 91 and she was laboring so hard to breathe that he cut the session short and let her go back to sitting in her recliner.

I was so relieved that she already had an appointment with the cardiologist that afternoon because I felt sure it was a CHF (congestive heart failure) episode. But the cardiology PA who treats her didn’t hear any congestion in her lungs or heart. They had the results of Monday’s labs sent over and noted that she’s almost dangerously anemic, which might explain the difficulty getting enough oxygen even when the fluid build-up is gone. Since we are seeing the kidney specialist next Monday, and this is something he’s been tracking, cardiology PA left it for him to determine the best course of treatment. I took Mom home and she almost immediately fell asleep in her recliner.

Worn out from a stressful day, at 9:00 p.m. I got into my pajamas, poured a glass of wine and settled in for a West Wing marathon on Netflix. At 9:30, I got a call from the owner of the board and care: Mom had a nosebleed that thet couldn’t stop and they were taking her to the ER. I met them there shortly before 10:00, and it was a LONG night. They got her into triage very fast, considering the unusually large number of people in the waiting room, and had a quick temporary fix to stop the bleeding.

Mom nosebleed ER picBut then, as you can see in the photo, they sent us back out to the waiting room. Where we waited… and waited… and waited. It was cold in that room and Mom was thankful for the cozy flannel pajamas, though she was a little embarrassed about being out in public without her dentures in.  And though she complained that the clamp on her nose was uncomfortable, I would have been thankful to have one myself when a young woman sitting across from us suddenly vomited.

It was three hours from the time we were checked in until Mom saw a doctor. He removed a massive blood clot from her nose and thought that would solve the problem, but the bleeding started up again. The culprit, a broken blood vessel, was too high up in her nose for the doctor to see or cauterize, so they had to insert a balloon catheter in her nose to stop the bleeding — a last resort because it’s “uncomfortable” (the doctor’s word). Mom cried out in pain when it was inserted and kept exclaiming that she couldn’t stand it because it hurt so much.  It was 3:00 a.m. by the time this happened, and 3:30 by the time we were leaving the ER. The owner of the care home and her husband had waited with us the whole time, and they drove Mom home once she was discharged. I got in my car and immediately began to sob from exhaustion and helplessness at not being able to ease her pain.

I got about five hours of sleep before I got another call from the care home telling me that Mom had pulled the balloon halfway out during the night. I drank a big mug of strong coffee, threw some clothes on, and headed over there. The balloon catheter was supposed to be left in place until Monday, when we had been directed to see an ENT doctor to remove it. I called the ENT office and left a message for the on-call doctor, who called me back quite promptly and said that we could leave it as is unless it started bleeding again. Thankfully, that did not happen. And the balloon didn’t hurt when it was only half inserted, so Mom was much more comfortable for the duration of the weekend than she would have been otherwise.

All’s well that ends well, I guess.