Subscribe to The Podcast by KevinMD. Watch on YouTube. Catch up on old episodes!

Join Deborah C. Smith, a nurse who shares her courageous battle with T-cell lymphocytic leukemia and aplastic anemia. Diagnosed in 2017, Deborah navigated extreme fatigue, frequent transfusions, and challenging chemotherapy regimens before finding hope in ATGAM equine immunotherapy. Despite facing severe side effects and a subsequent diagnosis of congestive heart failure, Deborah’s resilience and unique perspective as both a nurse and a patient shine through. Her story offers valuable insights into managing serious illness and underscores the importance of patient advocacy and informed decision-making.

Deborah C. Smith is a nurse.

She discusses the KevinMD article, “Battling aplastic anemia: my journey with ATGAM equine therapy.”

Our presenting sponsor is Nuance, a Microsoft company.

Together, Microsoft and Nuance are leveraging their rich digital technology and advanced AI capabilities to tackle some of health care’s biggest challenges. AI-driven technology promises to revolutionize patient and provider experiences with clinical documentation that writes itself.

The Nuance Dragon Ambient eXperience, or DAX for short, is a voice-enabled solution that automatically captures patient encounters securely and accurately at the point of care. DAX Copilot combines proven conversational and ambient AI with the most advanced generative AI in a mobile application that integrates directly with your existing workflows.

Physicians who use DAX have reported a 50 percent decrease in documentation time and a 70 percent reduction in feelings of burnout, and 85 percent of patients say their physician is more personable and conversational.

Discover AI-powered clinical documentation that writes itself. Visit https://nuance.com/daxinaction to see a 12-minute DAX Copilot demo.

VISIT SPONSOR → https://nuance.com/daxinaction

SUBSCRIBE TO THE PODCAST → https://kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://kevinmd.com/recommended

GET CME FOR THIS EPISODE → https://kevinmd.com/cme

I’m partnering with Learner+ to offer clinicians access to an AI-powered reflective portfolio that rewards CME/CE credits from meaningful reflections. Find out more: https://kevinmd.com/learnerplus

Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Deborah C. Smith. She’s a nurse, and we’re going to talk about the KevinMD article “Battling aplastic anemia: my journey with ATGAM equine therapy.” Deborah, welcome to the show.

Deborah C. Smith: Thank you so much for having me.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Deborah C. Smith: I’ve been a nurse for 50 years. I had to retire a little sooner due to my health scare. I was diagnosed in 2017 with T-cell lymphocytic leukemia, which was a bit of a shock. So I went ahead and retired ahead of time, and of course then I went through 18 months of chemotherapy.

And things were going well, but then things started going downhill after that. So then a couple bone marrow biopsies later, it showed aplastic conversion. So we had to redirect the chemotherapy route and put me on cyclosporine and some other things. Well, then my doctor decided to try the equine immunotherapy, ATGAM. OK, that’s an extremely expensive, highly dangerous drug, and I had to be hospitalized for that. But I’m blessed, everything went well, I had no side effects from it, and things have gone progressively well.

I’ve ended up having three rounds of this, one per year. My last one was this past March in 2024. I did have a couple little snags along the way, but things are starting to turn around again.

But the side effects I experienced during the therapy I would like for people to be aware of, because not everybody has the same journey as I’ve had. My number one problem was I felt so cold. Your immune system gets wiped out with this therapy, and you just feel like you’ve got ice water running through your veins. You can’t get warm no matter what you do. You experience extreme fatigue because everything gets wiped out. But it usually recurs very quickly. My side effects only lasted four or five days, and by the time therapy was finished I was fine.

Kevin Pho: All right. So you talked more about this in your KevinMD article “Battling aplastic anemia: my journey with ATGAM,” or antithymocyte globulin, equine therapy. So before we talk about the therapy itself, tell us how you were feeling when you first got that diagnosis of leukemia that subsequently progressed into aplastic anemia. What led you to go to the doctor in the first place to start that journey?

Deborah C. Smith: I had extreme fatigue. I couldn’t walk more than 20 feet without having to stop and rest. And extreme shortness of breath. So my doctor did a complete cardiac and pulmonary workup, which were within normal limits, but the symptoms persisted. And hemoglobin was done, CBC. White count was normal, but my hemoglobin was only four. I was still working at the time. With a hemoglobin of four, I was about to drop my teeth with that.

So then I received, emergently, four blood transfusions, and that’s when the journey began. That was in the spring of 2017. I cut down to part-time work. At the time I was a nurse educator for all the med-surg units in my health care facility, and I was also the go-to person for preparation for Joint Commission, which takes a lot of time and effort to get all that done.

So then in August of 2017 they did the bone marrow biopsy, which revealed the T-cell lymphocytic leukemia. And I thought, I’m going to be busy doing health care, going to the doctor, getting transfusions. So I went ahead and retired, and they started chemotherapy in September. It was oral, I took it every day, and it seemed to work. So then I was on it for 18 months, the doctor took me off of it, and things were going well for about six months. And then I noticed my hemoglobin started to drop a little bit.

So then the doctor put me on a different routine, putting me on Cytoxan. So I was on that, and the results were astounding. My hemoglobin shot to 15, I had energy, the shortness of breath was gone, I just felt fabulous. Well, that worked for a while, and then I started going downhill again.

Well, in the meantime, my sister with whom I live, we moved from Indianapolis to Bloomington. And for a while I was going back and forth to my oncologist in Indianapolis. Well, that was a bit of a hassle, especially during nasty weather. So I found an oncologist here, Dr. V.J. Deara, with the IU Health cancer center, and he has been a lifesaver. I mean, he consulted the doctor in Indianapolis to let him know what was going on. It’s been an incredible journey, and I feel extremely blessed with that.

Kevin Pho: Now to get everyone up to speed, tell us a little bit about what aplastic anemia is. Give us a 30-second primer just to get everyone on the same page.

Deborah C. Smith: OK. Aplastic anemia means your bone marrow is deficient. It does not produce the stem cells, they’re damaged, and so you don’t have red blood cells to carry hemoglobin around to your system, which causes extreme, extreme fatigue and extreme shortness of breath.

And the only way, there is no cure for it unless you want to have a bone marrow transplant, which is a really complicated procedure. And Dr. Deara and I consulted a physician up in Chicago, an expert, and he recommended, being my age, I’m 72, it really wasn’t that advisable to go through with that procedure, because the side effects are much worse and it wouldn’t be as effective. It’s only a 30 percent chance of success rate with my age group. So I’m doing the oral medications again, which doesn’t bother me. But so far everything is copacetic.

Kevin Pho: So tell me the decision-making process that led you to ATGAM equine therapy. And again, ATGAM is an acronym for antithymocyte globulin. Tell us the path and the decision that led to that.

Deborah C. Smith: Well, I’m very lucky to have Dr. Deara as my physician. He tells me he only has two patients in his entire practice that tell him what to do. I’m one of them.

We discussed the different options. I had regular immunoglobulin therapy first, for a week, four days, eight hours for four days. And then shortly thereafter we decided to go ahead with equine. Equine is a little bit superior to immunotherapy. The immunoglobulins are withdrawn from humans and injected into the thymus gland of a horse. They incubate for a short time, then that’s pulled away and then given as an infusion.

And the infusion is eight hours a day for four days, although it can be given for other transplants to upwards of two weeks at a time. But for my situation we decided that the four days would be sufficient for that. And you do have to be hospitalized, it cannot be given as an outpatient, because it is such a high-risk drug that the side effects could hit you like a ton of bricks and you wouldn’t be able to take care of it as an outpatient. So I made the trek to the hospital, but I enjoyed myself there, I had a good time.

Kevin Pho: Who are the candidates that would be under consideration for ATGAM equine therapy?

Deborah C. Smith: It is generally given to adults between 30 and 80. Children usually don’t respond quite as well. Well, they usually respond to other forms of treatment, and the equine therapy, that is given at a later date, you know, if things are not succeeding.

Kevin Pho: And how often would you have to go through that infusion, or is it a one-time thing?

Deborah C. Smith: I’ve gone through it three times, once a year. They don’t recommend it as very often, but in my case, since I wasn’t responding, and the doctor did us another bone marrow biopsy to see if I had converted to a myelodysplastic syndrome or if there was something else going on. And fortunately I didn’t have anything going on, so they went ahead and did the equine therapy for the third time. I did have a few side effects, but they were few and far between on that.

Kevin Pho: And is this something that you feel, or your doctor feels, that you may need to do yearly?

Deborah C. Smith: Possibly. I told him I would be willing to do it again.

Kevin Pho: You mentioned as part of your story some of the side effects when you were undergoing equine therapy. So during those four days when you were being infused, and the time afterwards, tell us what that was like.

Deborah C. Smith: A feeling of very extreme fatigue. I was encouraged to get up and move around, I wasn’t bedfast at all with this. In fact, I got up and got dressed every morning and just had access to my port so they could give me the drug. But I was able to get up and move around. I was not on a restricted diet, I could eat whatever I wanted.

They did give me prednisone for this, Solu-Medrol and Lasix. The Solu-Medrol, if it’s given too quickly, causes extreme tremors, and it’s like I had a vibrator stuck on the bottom of my feet and I couldn’t stop jiggling. And then they gave me Benadryl to kind of counteract all that, and it kind of made me snockered, and I was quite entertaining, I understand, after the Benadryl, because I couldn’t talk. I really had trouble with my speech.

So the two main side effects, extreme fatigue and the bone coldness, internal coldness. No matter how many covers you put on, no matter how many sweaters you wear, you’re going to feel ice cold all the time. Those were the two main things. But miraculously, after the infusions were finished, after the four days, those symptoms all went away.

Kevin Pho: So how do you feel today, and how are you?

Deborah C. Smith: I feel beautiful. I feel really good. My hemoglobin is up to 9.1, which is still low, but my body has accommodated for the lower hemoglobin status, so I’m able to carry out my normal activities of daily living. I can do whatever I want, I can eat whatever I want, I’m not restricted at all.

Kevin Pho: So tell us the message that you want readers of your story, and those listening on your podcast, what’s the message you want them to hear?

Deborah C. Smith: I want them to know that not everyone has the same side effects, not everyone will undergo the same line of treatment, but these are definitely options that you might bring up with your physician. Don’t be afraid to talk to your physician, to do your research.

But then also be aware that you can’t always believe everything that you read online, so go to a reputable source like National Institutes of Health, American Cancer Society. And they have access to all kinds of articles, research, that you can use to help make a decision. Talk to your doctor.

I’ve been lucky with Dr. Deara that I’ve been able to give him articles that I have found about the different types of therapy, and he says I keep him busy, keep him on his toes, keep him current on things. And it’s really been a wonderful collaboration. Do you want to do this, or would you be interested in this? Not, you’re going to do this, or this is what I want to do. That’s been a blessing in disguise, to do that. It’s been a lot of fun. I don’t mind going to the doctor now.

Kevin Pho: Now, when you underwent the ATGAM equine therapy and you had those side effects and you went through that experience, was that something that you had expected through your discussions and your research? Did anything catch you by surprise?

Deborah C. Smith: No, not really. Well, the tremors caught me some by surprise. But I have restless leg syndrome anyway, and I take a drug called Mirapex. I found that if I took that a couple of hours before the therapy started, it helped control the tremors. Also discovered that if you take your time giving the Medrol and the Benadryl, kind of space it out a little bit, the symptoms aren’t as bad. Which was a help, I was able to function.

Kevin Pho: We’re talking to Deborah C. Smith. She’s a nurse, and we’re talking about her KevinMD article “Battling aplastic anemia: my journey with ATGAM,” which is antithymocyte globulin, equine therapy. Deborah, we’ll end with some of your take-home messages that you’d like to leave with the KevinMD audience.

Deborah C. Smith: I’ve done a lot of work with residents and new nurses. Two things I’d like to share, would like them to share: they have superpowers. The power of observation and the power of listening.

Go ahead and embrace the technology that’s out there, because that’s going to help you, but your patient is your number one source. Listen to what they have to say. What might be subtle or inconsequential to the patient could make a big impact as far as their treatment is concerned.

Use your powers of observation. If you’re going to be seeing that patient frequently, you’re going to pick up on subtle changes in that patient’s condition. They may not be aware of it, but you might be.

And I also tell the patients, OK, when you’re first diagnosed with cancer or anemia or whatever, it’s going to be a shock and it’s going to be scary. Write down your questions before you go to the doctor the first time. Also write your medical history down, because you’re going to be nervous, you’re going to be scared, and you might forget something. If you have it written down, you can share that with your clinician, and they will be able to figure out what’s going on and plan the best plan of care for you.

Kevin Pho: Deborah, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Deborah C. Smith: Thank you so much.