This is the story of my left lung, some rectal pain, death, and hope. Add in surviving the terrorist attacks and it almost reads like a dime store novel. However, between the tragedies and the pain I discovered something incredible. I actually want to live. I had never thought about wanting to stay alive before. It was just a fact taken for granted. However now staying alive is no longer an intellectual question to be talked about over glasses of wine on a windy night. My dances with death have been so frequent that I can look death squarely in the eye and not flinch.

Since I am a nurse practitioner specializing in the treatment of HIV disease I have traveled the road with the dying too many times to remember. In the early days of the epidemic it was sometimes a weekly journey. As treatment advances in HIV disease came into existence this dance with death has slowed. Then it became personal.

Up until a few years ago I thought I was a typical health care provider. Caring, kind, smart, and compassionate. Then I tested HIV positive myself. HIV was no longer a virus of others. It was my virus.

Living with HIV disease has made me a much better clinician. I intimately know what it is like to live with this damn virus and it’s treatments. My bond with a patient forms fast as we get to know each other as people instead of just clinician and patient. Living with a life threatening illness makes you a better person. You speak your mind and tolerate fool and foolishness less.

My dance with death began when I left my Cape Cod home in March of 2001 to help establish a HIV clinic in lower Manhattan. I did not know if this move was temporary or permanent. It was just something that I had to do and it never occurred to me what an adventure was laying ahead.

I was less than a mile from Ground Zero September 11th. I was looking out my office window at the Twin Towers drinking a cup of coffee when the first plane struck. I screamed as my coffee cup shattered to the floor. Fellow co-workers came running. We were paralyzed in fear and disbelief. By the time we could get to a radio turned on we stared in horror and saw the unimaginable. Another plane going into the second tower.

From my 14th floor office people I could see people gathering on rooftops with video cameras. Then it started. A woman taping the horror slipped and plummeted to the ground. I felt sick and vomited into a garbage can. We stood and witnessed the ultimate Hobson’s choice – the jumpers. People jumping to their deaths rather than burn alive.

I could no longer stand there and do nothing. After all as a nurse practitioner I would be needed. So as I threw medical supplies into a backpack as a co-worker screamed and I looked up. Tower One crumbled. We had to evacuate. By the time all staff could be accounted for Tower Two came down.

The air in Manhattan had turned from a beautiful Spring-like day to one of acrid clouds and particles. I inhaled, coughed, and wheezed my way down to help.

My experiences on September 11th have forever changed my life. After all my decades of nursing in some of the most dire of circumstances I was not prepared for the devastation and horror that rained down on Manhattan.

I left Manhattan six weeks after the attacks to return to Cape Cod. My decision to leave New York was made long before September 11th. However, I was anxious to get back home. I had had some bad experiences in New York and was ready to go home.

But before I could pack my bags I had to deal with what I thought was annoying hemorrhoid. It turned out to be a cancerous lesion. I can only say that it was a very good thing I was laying on an exam table when the doctor told me because hearing it might be cancer nearly caused me to pass out. Being a child of the 50’s the notion of having cancer was actually more horrifying than receiving my HIV diagnosis.

So off I go to have rectal surgery. The anesthesiologist started my intravenous without gloves on and was rude. As I was laying there snapping at him about the need for gloves he told he was always careful. I told him I wasn’t worried about him. I was worried about me. If he was fool enough to start an I.V. on a HIV positive man I could only imagine the diseases he had. That is when he informed me that my surgery could be cancelled because of my recent heart attack if I did not shut up already.

Heart attack? I had had a heart attack? Yup buddy, you sure did he said as he showed me my cardiogram. I could see the damage to my heart muscle wink back at me from the paper like a wicked witch.

The surgical experience was nightmare. I felt most of the procedure and my recovery was so painful that thoughts of death were welcomed. The nurses at the big time city hospital were – how does one say this – nuts. They were overworked, stressed, and did not know what they were doing. I was loudly referred to as the “guy with AIDS”. When the recovery room nurse asked me how bad my pain was I told her I wanted to die it was so horrible. She just smiled and said: “That’s nice dear.” I wanted to deck her.

Without be overly descriptive imagine passing stool over a fresh surgical site. Not a good time. It was the first instance in my life where I blacked out from pain.

So once out of the hospital I had to develop my own pain treatment program and nursed myself back to health. I kept on wondering what other people not in the medical field did. Suffer, was the answer that came to mind.

So back home on Cape Cod and happy and getting ready for the holidays my body decides to test my soul once more.

I never really thought about my left lung before. It was just there. Working away around the clock. Then it collapsed. Just like that. Out of the blue. One of the nice things about timing in life is that sometimes it does work out. I was in the hospital having my regular check up by my nurse practitioner when I felt my lung go down.

All of a sudden I could feel a space develop inside of my chest. It was emptiness. The rest of my body just surged together into a clot of pain. The next thing I knew my NP was rushing me down to the emergency room where a roomful of cheerful emergency workers were vying for my case to get the chance to put in a chest tube.

Chest tubes by their very nature are painful. A chest tube is literally a hose that gets inserted between the ribs and is attached to closed vacuum system. This allows for the readjustment of pressures inside the chest that makes the lung to re-expand.

So there I was with a Doogie of a doctor slicing into my chest in unbelievable pain. He was so damn young. I wanted to ask him if had a note from his mother to be at the hospital. But I figured I learned my lesson from my surgery in New York. Do not annoy anyone who is about to impale you. However, this time I was wrong. For not more that 12 hours latter I felt my lung pop again as the chest tube feel out. Doogie boy did not suture the tube in well enough.

As I was passing out from the pain and turning blue I looked up at my nurse and told her I wanted an older surgeon. No more kids. I had had it. If you think a chest tube is fun the first time the second time is even better. There is more pain. More blood. I held onto consciousness until I saw an older African American man come in my room. I smiled. He was at least 45 and promised me his chest tube would never fall out. With that and little help from some I.V. morphine I passed out.

People kept on asking me how bad the pain was and I kept on answering. The only thing wrong with this conversation was that nothing was being done. People would smile at me idiotically and ask, “On scale of one to ten Dr. Ferri where would you rate your pain? One being no pain at all and ten being the worst pain imaginable.”

“It is pretty close to a ten considering that I have had two chest tubes inserted in less than a day. I really need something stronger. Every time I breathe I feel the tube in my ribs. Please help me.” Tears streamed down my face. I was feeling humiliated as well as being in intolerable pain.

I stared up into the eyes of young physician and begged for relief. “You know,” she said to me. “I just do not really believe in pain medicine.”

I did not know pain medicine required a belief system. I thought pain management was just good clinical practice and not an ideology I snapped back.

“Sorry,” she said. “Maybe a Percocet or two but that is where I draw the line.”

She turned to walk out of my room to be done with me. I spoke up. “I want to see your attending physician, the administrator on call, the nursing supervisor and anyone else that will help me.”

The startled young doctor stopped dead in her tracks. “You have got to be kidding?”

“I am very serious and I know my rights.” My left lung seized in my chest and my pain level is now accompanied by anxiety and anger.

Before she can even respond in walked my nurse practitioner. I am decidedly gray and humorless. I needed help.

“She doesn’t believe in pain management,” I sputtered. They both walk out of the room and I heard the words flying. By this time I am sincerely contemplating pulling out my chest tube. Every breath is mind numbing as the tube slides around my traumatized ribs, lung, and scar tissue. I am contemplating the cruelty of medicine and wonder if I have ever been a part of it. I guess in all honestly I have been Nurse Ratchet at times. Maybe this was just cosmic payback.

Before I can get too lost in my self-assessment in walked a nurse with a syringe. She gently slipped the needle into my intravenous and the pain killer inched into my blood and the relief was overpowering. It felt so good not be in agony that I passed out.

When I woke up I noticed a pump had been added to my I.V. and morphine was now being delivered at a constant rate.

Out of the big time Boston hospital and back at home I figured all is behind me. I have been living with HIV disease for years and recently diagnosed with rectal cancer but I have survived. The lung thing was more than annoying but I survived. So I ponder to myself that no more bad stuff can come my way for a while. I think I actually heard God laugh out loud.

The phone rang. It was my sister. My mother was back in the hospital and is on life support. She is going to die. Before I could pack my bags and rush home another call from my sister. My aunt, who is our other mother and always lived with us, fell and broke her hip. She needs surgery.

So my two mothers are in separate hospitals barely clinging to life. I am numb.

I walked into the ICU and see my mother hooked up to a respirator and trashing about the bed as the doctor tells me he is very concerned about her out of control heart rate and high blood pressure. He wants permission to start a medicated infusion to lower them. Nope, I say. My mother is tied to a bed with tubes in her and a look of panic and pain engraved in her face. I am wondering about the sanity of health care. Doesn’t anyone recognize pain? Doesn’t anyone care?

I strongly suggested to my mother’s physician that my mother could benefit from pain relief and anxiety reduction. Why not try some morphine and a tranquilizer?

Morphine and some Valium worked their magic as my mother relaxed and her heart rate and blood pressure calmed down. Now the vigil began.

I asked for the nursing supervisor how to get my mother removed from life support. My family had all the “do not resuscitate” paper work in order but somehow it got overlooked. This nurse tells me I have to petition the ethics committee which could take days to set up. I said no. I will not let my mother suffer. The nurse says she will make it happen today. And she did.

Sitting before the ethics committee was strange. There were over a dozen of them and just one of me. Some of the clinicians sitting around in judgement on my mother’s wishes were the same people that put her in four point restraints and did not provide pain or anxiety relief. I was having hard time with the ethics disconnect but I figured this is the game to play if my mother was to be removed from life support.

Taking the tubes out of my own mother was a surreal experience. My father and all of her children stayed with her during the 10 hours it took her to pass. In many ways it was a wonderful experience. It was the best nursing I ever did.

After the funeral my aunt is stable in a nursing home and she seems well. I spend a lot of time with her getting her to eat and helping her to grieve. I return to the Cape and try to begin to feel something. The phone rings. My aunt has died. Cardiac arrested just six days after my mother died. Again the staff at the nursing home obviously thought the DNR that we signed was optional. They called rescue and some EMT tried to intubate my aunt before my sister could rush to nursing home.

When my sister arrived our aunt was dead with look of panic and fear on her face. A botched endotracheal tube had to be plucked out of her mouth.

At least, I tell my sister, we have the funeral thing down pat. When we call the funeral director again he cries. We do our best to comfort him. You know you are having a bad time when you make a funeral director cry.

Five days after burying my aunt I wake up at four in the morning and distinctly hear my left lung pop. Another pneumothorax and off I go by rescue to the local hospital.

The physical and emotional pain I was in cannot be placed into words. As my third chest tube got slipped in I could feel it grind against my ribs and the fresh scar tissue. I begin to cry and beg a nurse for some morphine. She calls me a wimp.

Look at all your big muscles and you crying like that!

I was humiliated. I was also angry that she violated the profession of nursing. My profession. My life’s work. I love being a nurse and cannot understand the craziness I have fallen into. I still cannot figure out her remark and decide to focus in on the nurse who helped my mother die with dignity.

By now God was laughing so loudly it was becoming annoying.

Back at home once more with everything going along just fine. Then I go for my follow up x-ray at the local clinic and my lung is down again. The x-ray hung on the light box like a death warrant. I could not see any tissue where my left lung should have been. I cried deeply as the doctor called rescue.

So now it is time to be medi-vaced off the Cape on a windy day to Boston. The flight nurse kept on apologizing for the bumpy ride as she stuck a needle into my artery and wondered if I should be intubated in mid-flight. I voted that down and said maybe intubation should wait. As we were arguing the point we landed with a thud.

Off to chaos that is known as the emergency room. I felt like Charlie Brown lying in bed with the covers pulled over my head fearful of ghosts.

Tube, blades, people and needles were flying everywhere. Total strangers discovered all my orifices and felt compelled to insert a tube or needle in them. By now I was just chanting “Morphine! Morphine!” However, no one listened. Everyone was too busy saving my life to care if I was in pain.

The next several days spent in the intensive care unit made my life become unglued. No one really thinks the patients laying in the bed hooked up to machines are real people. I wanted to scream. I was not a respiratory cripple laying around at home just waiting for my turn to entertain the ICU staff. I am a real person with a real life.

They talk through you, poke at you, pull your tubes and leave you uncovered. They also assume you have lost your ability to hear and say the damndest things about you to your face.

One doctor while examining me actually said he thought that maybe I had drug problem since I had so many collapsed lungs. He thought I was just looking to score some morphine. Once I could talk I assured this idiot that that was not the case and demanded to see his boss. I let him have it. He turned beat red and said he was sorry. I told him that sometimes sorry does not cut it. Also, did he have any other career interest in the world since medicine seemed to be lost on him?

The nurses ranged from good to very bad. Some were there to follow the doctor’s orders and that was all. Others who actually knew how to be a professional nurse were an incredible gift.

I developed many observations on health care and have conclude:
1. Being a doctor or nurse does not mean you are a good person – although it should, at least somewhat.
2. The stress level in the ICU for the patient and the staff needs to be dealt with immediately. You cannot keep throwing fuel onto a burning fire and not expect combustion.
3. Millions of people suffer horribly. This is a national tragedy.
4. Providers think that they are immune to illness. As long as they walk around in their scrubs with their stethoscopes bad stuff will never happen to them. They are fools.
5. Simple acts of kindness are rarely forgotten.

In the course of six months I have had five chest tube insertions, a rectal resection, and two major loses. For the most part all I have gotten from these experiences is some idiotic treatment. Health care professionals who clearly do not understand pain control or how much it hurts to have tubes stuck inside your body. All I kept on hearing was the cheery, “So Dr. Ferri on a scale of one to ten how bad is your pain?” This mandated assessment from the Joint Commission on the Accreditation of Hospitals is often accompanied by notices posted on hospital walls informing patients of their rights to pain management. Accompanying this is usually the standard “happy face scale” that ranges from Happy Face (no pain) to Crying Face (severe pain).

Everyone kept on assessing my pain but very few did anything about it. In fact, if I had not demanded better pain management I do not believe I would have received it.

Here is the real kicker. No one needs to be in pain. The research is in and the clinical guidelines have been crafted. The medicine exists to relieve pain but it is rarely given in adequate doses or sometimes not at all. If this was done in another disease, such as breast cancer, there would be massive public outrage. But when it comes to pain suffering is expected and tolerated. Just look at my left lung and me.

(Second Place, Hot Type Literary Contest, POZ Magazine Fiction, 2005.)

Dan was standing at the end of the canned-vegetable aisle at the supermarket in Provincetown. It was a hot summer morning, and everyone was at the beach or still sleeping off last night’s transgressions. Dan picked up a can of lima beans and began to read the label. He closely examined the picture of the lima beans on the label. He started to cry.

Standing in the nearly empty store, Dan could not help but feel foolish, but he could not stop crying. He had just turned 25, was a mass of solid muscle, had a great job, and yet lima beans were making him bawl like a baby.

“Excuse me,” a small firm voice said, “but did those lima beans do something to you?”

Embarrassed, Dan turned to see a small slender white-haired woman in her seventies staring at him over her grocery cart.

“’Cause if they did I can talk to the store manager for you. Can’t have lima beans bringing a grown man like you to tears, can we?”

Dan almost attempted a smile. “No, that would send the universe off-kilter.”
“That is what I think, too.” The woman stuck out her hand. Dan took it. “I’m Alice.”

“Dan,” he replied as he gently shook her hand.

“Good, now that is over. Put those damn lima beans in my cart and help me finish shopping.”

Dan placed the can in Alice’s cart and followed her. “Now, I am going to get some peanut butter. Does peanut butter make you cry, too?”

Dan managed a smile this time and wiped his face. “I’ll be brave.”

“Good man,” Alice clipped back as she steered her cart up another aisle. “Let’s soldier on.”

Dan followed Alice since he could think of no reason not to. She was about five-foot-six and very thin. Her shock of white hair was cropped neatly around her face. Dan could tell she was an old-time Cape Codder who had weathered many a storm. Seeing a man crying in the canned-vegetable aisle did not throw her off balance at all.

Dan felt the need to explain. “I suppose you’re wondering what that was all about.”

Alice shrugged her shoulders as she picked up a jar of superchunk. “Not really. I’m a total stranger. You don’t owe me any explanation.”

Dan leaned closer to Alice. “Aren’t you at least curious?”

“Curious? Sure. I’m as curious as a room full of gay Republicans in a whorehouse.” Going past the peanut butter, Alice stopped in front of the pickle section. “Here’s a little life lesson for you, Dan. Never buy generic pickles. Those fuckers are limp and tasteless.”

“Point noted. No generic pickles.” Dan’s voice trembled, “You see, Alice, I’m gay.”

Alice just looked up into Dan’s eyes with her no-nonsense face and said, “Well, so am I. Guess we won’t have to worry about any Harold and Maude thing happening.”

Dan tried not to look surprised and Alice caught him.

“Even gay people age. You will age. Those muscles and perfect tan will both fade.”

Alice tossed some milk, cheese and chicken into her cart.

Dan’s mouth went very dry, but he decided he needed to tell someone. Anyone. “You see, Alice….” Dan paused as Alice examined some fillets. “I got my test results about an hour ago. I’m positive.”

Alice slowly shifted her head and looked at him. “So you go to a grocery store and cry over a can of lima beans?”

Dan just shrugged. “I didn’t know what else to do,” he said softly.
“OK, so now I have to ask: Why lima beans?”

“Honestly, I was just walking around in a daze, and when I saw them, they reminded me of damaged blood cells. You know how they’re kind of poufy and have a funny shape.”

“You think lima beans look like damaged blood cells?”

Dan just looked at her. “Is that all you’re going to talk about—lima beans? I just told you I tested positive!”

A tired-looking mother passed by, failing at keeping her child from grabbing packages of straws from the shelves and flinging one into Alice’s cart.

“Guess I needed straws,” Alice mumbled.

Dan’s face was becoming red. “Lima beans and straws!” He was nearly yelling now. “What about me?”

Alice looked up at Dan’s twisted face. “You will be fine. A man who tests positive then cries over a can of lima beans will get it together. When I tested positive, I got drunk. Drank a whole bottle of brandy.”

Alice continued to shop. Dan stood still.

“But Alice, how in the world can you be positive? You’re…” his voiced trailed off.
Alice finished the sentence for him. “I am old and a lesbian.”

“Look, Alice, I am sorry. My mind is just so damn fucked up right now.”

“Let me give it to you in a nutshell. I had a girlfriend for 30 years. After Mary died, I went into hibernation for five years. One day I told myself I had to snap out of it. So I started to go to the social events at the senior center. I met this man and he seemed nice enough. Very pleasant. He asked me out to dinner. Well, I had never dated a man before, but I figured what the hell. A new adventure, right? One thing led to another and we ended up in bed. I got infected. He left town. End of story.” Alice paused. “You know what really still pisses me about it? The sex was terrible.”

Dan let out a small laugh. “Yeah, the guy who I think infected me wasn’t that great in the sack, either.”

Alice did not miss a beat. “Yeah, but I bet you went to bed with strangers for a lousy gin and tonic.”

“Never!” Dan protested. “I only drink scotch.”

“Who knew I was speaking to such a class act?”

“Well, another life lesson. Go with quality and not quantity.”

“I never imagined that I would learn so much grocery shopping with a stranger.”

Dan grabbed the other end of the cart. “But how do you cope, Alice? I keep thinking of the things I have to do. People I have to tell. Decisions I have to make. I have this jumble of thoughts ricocheting in my head.”

“It will calm down. I know exactly what you’re talking about. It is overwhelming. But trust me on this: In a few weeks, you will be thinking a lot more clearly. The only thing you have to do now is nothing. Don’t tell anyone. Don’t make any treatment decisions. Don’t become a rodeo clown. Just let it all calm down.”
“That simple?”

“Look, Dan. In any of life’s rough situations there are basically three choices. First, is to deal with it. The second is to avoid it, and the third is to slash your wrists. I just don’t see you as a guy who believes in denial or someone fond of leaving this planet before your scheduled departure. So the only thing left is for you to cope.”

Dan looked at Alice and could feel a little relief creep into his head. This made sense. He found out he tested HIV positive less than two hours ago. Then he cried over a can of vegetables and met Alice. Things were already looking better.
“So what do I do now?”

Alice smiled. “Help me home with my groceries.”

They paid for the groceries and headed out to Alice’s car. Alice drove to the end of Miller Hill Road. Her house was the last one on the short street and it abutted the woods. It was small but solid. Just like Alice.

She pulled her car around to the back of the house and they got out. Dan carried the groceries and placed them down in Alice’s sun porch as Alice began looking for something in a closet. She pulled out a gun.

“Can you shoot a BB gun? Alice asked.

“Of course. I was a Boy Scout.”

“Good.” Alice fished in one of the grocery bags and found what she was looking for. She marched out to her backyard fence and placed the can of lima beans on a post.

“OK,” Alice shouted. “Shoot the damn beans!”

Dan took aim and with remarkable precision hit the can dead center four times. He put down the gun and smiled as Alice came walking up to him.

“So how do you feel?”

“Great.”

“Well, it’s the same thing with HIV. Got to take aim and fight.”

Alice and Dan went inside, opened a bottle of wine and started to make lunch.

Anemia is frequently observed in adults and adolescents with HIV infection, although the reported prevalence varies based on the definition of anemia, the severity of HIV disease, gender, race/ethnicity, and the prolonged use of myelosuppressive chemotherapeutic and antiretroviral agents. Although the prevalence of anemia in HIV-infected patients has declined since the introduction of highly active antiretroviral therapy (HAART), anemia continues to be problematic for many patients.1

For example, the annual prevalence of anemia in 1,791 patients with HIV infection and hemoglobin concentrations between 9 and 11 g/dl only changed from 12.8% in 1995 to 11.5% through June 1998 2. Among 361 HIV-infected patients seen at an urban infectious diseases clinic, 80% had received HAART sometime between 1996 and 1998, and 21% were diagnosed with anemia (hemoglobin < 11 g/dl)1.

Etiology of Anemia in Patients With HIV Infection

Anemia is not a specific entity but a sign of an underlying pathology. The multiple causes of anemia in HIV-infected patients can be categorized into those that arise from decreased erythropoiesis, ineffective erythropoiesis, or increased red blood cell destruction. Anemia will also develop in patients who experience excessive blood loss. Anemias caused by decreased erythropoiesis include those resulting from bone marrow damage due to infiltration of certain cancers and opportunistic microorganisms or the use of myelosuppressive agents. 3

HIV Disease Progression and Survival
Numerous studies have demonstrated that anemia in HIV-infected patients increases the risk of disease progression and death. An analysis of the survival data (n = 19,213) from the Multistate Adult and Adolescent Spectrum of HIV Surveillance Project revealed that anemia (hemoglobin < 10 g/dl) was associated with a 148% increase in the risk of death for patients with baseline CD4+ lymphocyte counts of at least 200 cells/μL, irrespective of the presence of clinically manifested AIDS and the use of antiretroviral therapy4 . Across all CD4 categories (baseline counts: 0–49, 50–99, 100–149, 150–199, and ≥ 200 cells/μL), median survival was significantly shorter for patients with anemia than for those without anemia. Additionally, failure to recover from anemia was associated with a 170% increase in the risk of death 4.

Fatigue and QOL
Anemia is associated with fatigue, reduced energy and activity levels, poorer overall QOL, and an increased risk of dementia in HIV-infected patients5. Fatigue is generally recognized as a highly prevalent symptom in patients with HIV infection, occurring transiently in the majority of patients at the time of acute infection and then re-appearing with the progression of HIV disease.

Anemia and Adherence to Antiretroviral Therapy
Fatigue, an important symptom of HIV infection, has implications for adherence to complicated antiretroviral regimens6. Currently, there is no published research describing causality or an association between fatigue and drug-adherence in HIV-infected patients. Future studies should be conducted to assess this relationship, so that the appropriate treatment strategies can be put into place.

After excluding other causes of anemia such as opportunistic infections (e.g., those caused by MAC) or neoplasms, asymptomatic patients diagnosed with mild anemia should receive nutritional support (education, dietary supplements), and be monitored at least every 2 months.

Patients diagnosed with mild symptomatic or moderate anemia should be treated aggressively. Currently, epoetin alfa is the treatment of choice for mild symptomatic or moderate anemia, after excluding other obvious correctable etiologies of anemia. Immediate medical steps must be taken when patients are diagnosed with severe anemia to ensure adequate delivery of oxygen to tissues before irreversible change occurs. These include red blood cell transfusions, administration of electrolyte and colloid solutions, and possibly supplemental oxygen administration7. Improved hemoglobin concentrations can then be maintained with the use of epoetin alfa.

Blood transfusion is recommended for severe anemia but not mild symptomatic or moderate anemia. The risks and benefits of red blood cell transfusion for patients with HIV infection are the same as those for non–HIV-infected patients8 and needs to be carefully weighed. Red blood cell transfusions provide an immediate increase in hemoglobin concentrations and an improvement in energy levels. However, there are several disadvantages to blood transfusions, including an increased risk of death; transfusion reaction; transmission of blood-borne viruses such as cytomegalovirus, human T-cell lymphotropic virus (HTLV–I/II), and hepatitis C virus; increased expression of HIV; and immunosuppression9. Additional disadvantages include the inconvenience of administering the transfusion in a hospital/outpatient facility, transient improvements in the correction of anemia, and a limited blood supply10. Thus, to avoid additional blood transfusions, epoetin alfa should be administered along with the initial transfusion.

Mild symptomatic or moderate anemia be treated with epoetin alfa. As the clinical evidence of the relationship among anemia, quality of life (QOL), and survival increases, there may be a rationale for initiating epoetin alfa therapy in patients with mild anemia, regardless of symptomatology.

After determining that there are no underlying etiologies responsible for anemia, such as occult blood loss, iron, folic acid or vitamin B12 deficiency, opportunistic infections, or malignant processes, patients with endogenous erythropoietin concentrations below 500 mU/ml are started at an initial SC dose of 40,000 units administered once weekly. Serum hemoglobin concentration should be monitored once weekly during the dose adjustment phase of therapy. Generally, a full response is not seen for at least 4 weeks. Additional dosage instructions are as follows:
• If hemoglobin concentration has increased more than 1 g/dl at Week 4, continue the patient on 40,000 units once weekly
• Increase dose to 60,000 units once weekly if hemoglobin concentration has increased less than 1 g/dl at Week 4. If hemoglobin increases more than 1 g/dl at Week 8 with 60,000 units once weekly, continue at this dose. If at Week 8 hemoglobin concentration is still less than 1 g/dl, check iron, folate, and vitamin B12 concentrations
• Decrease epoetin alfa by 10,000 units once weekly when hemoglobin concentration reaches the normal range. Titrate to maintain desired hemoglobin
• If hemoglobin exceeds the normal range, temporarily withhold epoetin alfa therapy
• Finally, it is important to recognize that several factors affect the initiation of treatment, including the hemoglobin concentration, rate of hemoglobin decline, clinical status, symptoms of fatigue and other QOL parameters, comorbidities requiring drugs that may induce anemia (e.g., ribavirin for hepatitis C, drugs that induce nephrotoxicity), age, lifestyle, substance abuse, the use of myelosuppressive drugs, nutritional status, cultural issues, and socioeconomic issues 11.

1. Mocroft, A., Kirk, O., Barton, S. E., Dietrich, M., Proenca, R., Colebunders, R., Pradier, C., d’Arminio, M. A., Ledergerber, B., & Lundgren, J. D. (1999). Anaemia is an independent predictive marker for clinical prognosis in HIV-infected patients from across Europe. AIDS, 13, 943-950.
2. Moore, R. D., & Chaisson, R. E. (1999). Natural history of HIV infection in the era of combination antiretroviral therapy. AIDS, 13, 1933-1942.
3. Kreuzer, K. A., & Rockstroh, J. K. (1997). Pathogenesis and pathophysiology of anemia in HIV infection. Annals of Hematology, 75, 179-187.
4. Barroso, J. (1999). A review of fatigue in people with HIV infection. Journal of the Association of Nurses in AIDS Care, 10, 42-49.
5. Abrams, D. I., Steinhart C., & Frascino, R. (2000). Epoetin alfa therapy for anaemia in HIV-infected patients: impact on quality of life. International Journal of STD and AIDS, 11, 659-665.
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