A bone marrow transplant (BMT) provides hope for many patients diagnosed with leukemia, aplastic anemia, and other bone marrow disorders and cancers that were once thought incurable. This hope for a cure sustains patients and their families through the difficult period of treatment and recovery. Nonetheless, contemplating a bone marrow transplant, undergoing the procedure and coping with the recovery process is a trying experience for the patient, the patient's family and friends.
When a patient first faces the prospect of a bone marrow transplant, the news can be devastating. Many will not yet have come to grips with the fact that they're suffering from a life-threatening disease before being asked to decide whether or not to undergo a bone marrow transplant. Sometimes the decision must be made quickly to provide the greatest likelihood of success, adding more stress to an already difficult situation.
The sheer volume of information patients must absorb coupled with their unfamiliarity with the medical jargon used to describe the procedures can be mind-numbing. Some simply stop hearing new information as they struggle to deal with facts already provided and the prospect of their own mortality. Patients may ask the same question repeatedly, failing each time to comprehend the answer.
Little of the information BMT patients receive will sound like good news. What patients want to hear is that the bone marrow transplant will be a quick, painless, risk-free procedure. More importantly, they want assurance that it will cure their disease and provide them with many extra years of life. Unfortunately, no such assurance can be given. The patient can only be promised the "chance" of a future.
Fear that more unsettling news is forthcoming precludes many patients from asking questions. As much as they may want answers, some opt to cope with uncertainty rather than open themselves up to more disturbing news.
In an effort to provide a complete and honest description of the BMT experience, doctors sometimes confuse and overwhelm patients. They may assume that patients are familiar with medical jargon like "catheters, IVs, aspirates, biopsies, etc." which is usually not the case. As one patient put it "doctors talk medical, patients talk human". Don't be embarrassed to ask your doctor to re-explain something or to translate it into words that you can understand. Keep asking ques tions until you're satisfied with the answer, regardless of how many repetitions it takes.
Ask your doctor to help you put the complications and side effects associated with a BMT into perspective. Don't assume that the likelihood of death or severe liver damage, for example, is as great as the likelihood of temporary hair loss or mouth sores. (It's not!) Ask what the probability is that various complications will occur. It can help ease your worries.
Doctors also sometimes forget to mention that pain relief will be provided during a BMT. Thus, when patients hear about the numerous complications that might occur, they presume they'll be in terrible pain while hospitalized. While pain can occur following a BMT, pain medications can be provided in most cases to alleviate the discomfort.
Family and friends can help patients sort through the deluge of information received from a doctor. A patient who's afraid or embarrassed to ask a physician the same question for the tenth time will appreciate a family member who asks the question on his or her behalf. Giving a patient the name of someone who has experienced a bone marrow transplant and is willing to talk about it can also be helpful. Before meeting your your transplant doctor, it helps to write down any questions you might have and bring them with you.
The time spent in the hospital before, during, and after a bone marrow transplant can seem never-ending. Patients seldom make daily progress by leaps and bounds. Each day will bring a small step forward, maybe a little backsliding, or no change at all. This slow pace of progress can depress patients (and their loved ones) who want desperately to get well and put this chapter of their life behind them.
It helps to take one day at a time rather than worry about what will happen in five days, five weeks or five years. Physicians and health care workers can help by setting manageable goals for patients to achieve each day and by letting them know each and every time progress is made, no matter how small. What the medical staff may take for granted as the normal course of transplant recovery can be big, encouraging news for the patient. When the marrow engrafts, when test results are good, and when blood counts begin to rise, patients should be told and congratulated. Providing the patient with a chart that graphs his or her progress toward the blood count goals can help. Patients constantly feel overwhelmed by "bad" news. Any progress or positive news, no matter how small, can buoy a patient's spirits.
Similarly, encouraging comments from family members on days when a patient looks better can boost the patient's morale. On those inevitable days when backsliding occurs, it's best to discuss your disappointment with someone other than the patient.
A bone marrow transplant is a physically debilitating experience. Patients undergoing a transplant will be in a fragile state of health for several weeks and feel extremely weak and helpless. Walking without assistance, focusing on a book or television set, following the thread of a conversation, or even sitting up in bed may require more energy than the patient has to spare. Patients who are used to being in charge, taking care of themselves, or being the person upon whom others depend will find this physical debilitation very hard to cope with. This loss of control can both frighten and anger a patient.
Two strategies can help to reduce the fear the patient feels during this period. First, patients should be assured that a loved one will be their advocate while they're too weak to fend for themselves. If a patient needs pain relief, has questions, or needs some other form of help, being able to rely on a loved one to track down the appropriate hospital personnel and get the problem solved can be an immense relief. Patients know that physicians and hospital staff have many patients' needs to juggle. Knowing that someone dose will be an advocate for the patient, and that patient only, can be very comforting.
Second, patients' fears can be needlessly heightened by a vacuum of information. Isolated in a private room, patients often wonder whether anyone is reviewing their case each day and following up on questions or complaints. Asking physicians, interns, and nurses to touch base frequently with the patient throughout the day, even if there is no new information to report, helps assure patients that they have not been forgotten.
Patients are frequently put in the hands of medical technicians, transport workers or other unfamiliar hospital staff for x-rays and other tests.
The fear engendered by their weakened condition is often heightened during these periods. X-ray technicians who handle patients clumsily or leave them stranded on tables for what seems like an eternity, transport workers who manipulate controls on IV lines during transport, etc. can frighten patients who lack the physical strength or medical knowledge to correct a problem if it arises. Similarly, tests that in some way physically restrain a patient, such as those requiring tight-fitting masks on a patient's face, or CAT scans that enclose the patient in a confining space can be frightening. Having a loved one or trusted nurse present during these procedures, or providing a mild sedative, can calm the patient and alleviate stress.
Patients often react to the loss of control over their body with anger. This anger may be directed at physicians, other medical personnel or even at the patient's loved ones. There are several things caregivers can do to diffuse the patient's anger and frustration.
Most importantly, treat patients with respect. Even in a debilitated state, adult patients want and are entitled to be treated as adults. Their intelligence should be acknowledged, their modesty respected, and their need to assert some control over their own situation understood. Patients can react angrily to persons who try to "dictate" rather than tactfully encourage them to do things they'd rather not do. Giving the patient a chance to assert some control over these decisions can lessen their feeling of helplessness and anger.
Respecting a patient's modesty and privacy can also stem a source of anger. As sick and helpless as patients may be, there's no reason to require them to bare their bodies and souls to the world.
Patients often need time alone with physicians, psychologists, or social workers to discuss private concerns and feelings. Family members and friends should respect this need. Sitting in on discussions, especially between the patient and psychological or pastoral counselors, may prevent the patient from expressing feelings and concerns with which he or she needs help coping.
The special precautions taken to protect BMT patients against infection after the transplant while their immune system is suppressed make many patients feel lonely and isolated. Transplant patients crave a normal environment where they're not the center of attention, where they can interact freely with family and friends without special precautions or protective garb, and where they can think about something other than their disease and treatment.
Converting a hospital room into the patient's room can make the patient feel less detached from normal life. Having pictures of family members on hand, displaying cards and well wishes, substituting pictures of the patient's choosing for the "art" that normally adorns hospital room walls helps. Bringing in the patient's own bed clothes, a tape deck with favorite music, books, a VCR, etc. can also make the hospital room seem homier. When family and friends visit, they should talk about the world outside. Positive, upbeat anecdotes about family members and friends, descriptions of stores or museums visited, plays or movies that have been seen, the latest gossip from work or school - anything that brings the outside world to patients - will make them feel less isolated and cut off from normal life.
Some side effects of the high-dose chemotherapy and/or radiation patients undergo prior to transplant as well as post-transplant medications and complications can be stressful for patients.
Temporary hair loss can change one's self image, making some patients self-conscious or embarrassed to be seen by family and friends. During the hospital stay, wearing a head scarf, turban, or hat may make a patient feel less conspicuous and can be more comfortable than a wig. Meals, too, can be a stressful time. Hospital food, even on the best days, can be a pretty miserable bill of fare. Mouth sores, a common side effect of the treatment, can make eating uncomfortable. Some of the drugs administered to patients during treatment may radically alter the taste of foods, making them unpalatable. Patients often appreciate having family members bring in "comfort foods" that are more appealing to the patient (provided they've been approved by the doctor).
The large quantity of medications patients will need to take orally each day can be daunting, and some may have difficulty as they try to force the pills down. The battery of tests administered to monitor the patient's overall physical condition, while not painful, can leave patients feeling like their bodies are under constant assault. Though little can be done to curtail these necessary medications and tests, sympathy from all caregivers can help patients cope with the stress they produce.
In some cases, it is possible to reduce the physical discomfort associated with a test and thus reduce stress. Pre-medication with demerol or morphine prior to a bone marrow aspirate, for example, can calm a patient and make the procedure more comfortable. Patients should not be reticent about asking for pre-medication or other pain relief if they're worried about discomfort. Don't be intimidated if the medical staff seems resistant to your request. There's no reason to endure more pain than necessary.
Families of BMT patients should take an active, aggressive role in advising physicians and hospital staff of a patient's discomfort and needs. Family members know the patient's personality best and will know the extent to which a patient will be stoic about pain and discomfort before asking for help. The hospital staff needs to know if the patient will request relief as soon as pain begins or only after the discomfort is really intense. The speed with which they respond to the patient's call for help is often influenced by this important information.
Anxiety and stress are a normal and expected part of the BMT experience. Patients who become very anxious or agitated are not "weaklings" or losing their minds. They're reacting in a very normal way to a very stressful experience.
Most BMT patients benefit from the services of a psychiatrist or psychologist during the BMT process and patients should be encouraged to take advantage of their professional help. If your physician does not volunteer these helpful services to you, ask for them.
Some patients will be shocked or embarrassed at the notion that they may be incapable of coping with the stress of a BMT on their own. This is particularly true of persons who've never before required the help of a psychologist or psychiatrist. Needing and seeking psychological or psychiatric help during a BMT is normal. It does not mean the patient is falling apart, or that he or she will require ongoing psychiatric help after the BMT.
Psychiatrists often help patients manage stress with sedatives and anti-depressant medications. Most BMT patients never before will have needed or used these medications. Short-term use of these drugs during the hospitalization is common, and does not mean the patient will develop a long-term drug dependency.
Sedatives and sleeping pills are particularly helpful in managing a very common problem experienced by BMT patients-insomnia. Deprived of sleep, a patient can quickly become exhausted, unfocused and extremely irritable, making it even harder to cope with daytime stresses. Medications are available to counteract insomnia; there's no need to put up with sleepless nights and the stress they produce.
It's extremely important that family members be involved on a day- to-day basis with the patient's care. Often, the best thing that family members or friends can do for the patient is to just " be there." Just having a loved one or friend close at hand can be very comforting. Don't feel you need to keep up a non-stop conversation during your visit. Read, chat with the patient periodically, watch television, share time as you would at home. It's your presence that counts most.
Throughout much of the hospitalization, the patient may be much too weak to visit with guests or even accept phone calls. Nonetheless, it's important for patients to know that family members, friends, and co-workers are concerned about their progress and rooting for their recovery. It can be very depressing for a patient to feel that he or she has been forgotten by someone. Cards, handwritten notes, and words of encouragement passed along through family members or friends can mean a lot to a patient who feels isolated in a hospital room. Installing an answering machine on the patients phone is one way to let family and friends communicate their well-wishes without requiring the patient to engage in exhausting phone conversations.
Sometimes friends and acquaintances are afraid to "intrude" and therefore do not call or write. If you're concerned, check first with a family member; but more often than not your expression of concern will boost the patient's spirits and help the recovery process. Other gestures like donating platelets for the patient, helping with family household chores, caring for the patient's children, providing an evening off for the patient's support person, or filling in for the patient until she returns to work will also be greatly appreciated.
Nights are an especially stressful time when patients feel most isolated and lonely. There are fewer distractions and fewer familiar faces upon whom to rely for help. Alone in the dark, fears that normally grip the patient during the day are intensified.
Many transplant facilities allow a support person to spend nights in the patient's room on a cot or daybed. Having a loved one present in the room at night greatly relieves patients' stress. If your transplant center does not routinely provide overnight accommodations for support persons,they may be willing to make special arrangements.
The day of hospital discharge can be both exciting and frightening. On the one hand, patients are glad to leave the isolation of the hospital room behind them. On the other hand, losing the "safety net" of hospital personnel who've been available to support the patient's every medical need can be frightening.
The sights, sounds and smells of the world outside the hospital will assault the patient's senses. It's a very moving and exhausting experience when patients take the first step out of the hospital and start back on the road to a normal life.
During this period of recovery, patients desperately want to feel normal and be treated as such. They don't want pity. They want to be able to take care of themselves to the extent possible, and don't want to be singled out for special treatment unless absolutely necessary.
Family members, friends and co-workers sometimes have difficulty re-establishing their relationship with patients. Patients will look different. They may have lost weight, will have temporary hair loss, be wearing a face mask to protect against infection, or look physically drained. Because the patient will have been "out of circulation" for several weeks or months, he or she will not have shared as many experiences with family members or friends as usual. Vlsitors can feel awkward as they grope for an appropriate topic of conversation, and this awkwardness can discourage some people from calling or visiting.
In some cases, particularly with children, ignorance may make a person fearful of associating with the patient. One high school adolescent reported that, upon her return to school the school corridors would literally dear out each time she appeared. The other children were afraid they might "catch it" and were uncomfortable interacting with a classmate they believed was about to die.
Friends and family members of patients can overcome some of this post-transplant awkwardness by not losing touch with patients while they're undergoing treatment Sharing normal life experiences with the patient either during a visit, by a note, or with a phone call can help make the re-establishment of relationships post-transplant easier.
Children of adult transplant patients, as well as friends and class mates of children undergoing a transplant, should be prepared for the return of the patient, with the myths of "catching it" or the inevitability of the patient's death dispelled well in advance. This will not only ease the patient's stress, but relieve unspoken fears the children may have about their parent or friend.
Oftentimes friends will be unsure about how and when to re-establish a normal relationship with the patient, and will look for a cue from the patient before making a move. Some patients have found that asking friends to help with a small task such as picking up a prescription at the drug store, taking the patient/s child to a school event, or returning a purchased item to a department store will "break the ice" and let friends know that the patient is ready for their companionship.
Friends of transplant patients may help ease the transition back to normal life by inviting patients to accompany them to places or events that do not pose undue health risks. Despite the fact that the patients may need to wear a face mask when going on these excursions (which will make the experience less than perfect), their desire to get back into the normal flow of life may overcome their aversion to being conspicuous, and the invitation will be much appreciated.
During the recovery period, graft-versus-host disease (GVHD), a post-transplant side effect that affects many patients who undergo allogeneic transplants, can also be very stressful. GVHD is discussed at length in Chapter 9.
A BMT is difficult, not only for the patient, but for support persons as well. This is especially true if the support person has ongoing family and/or job responsibilities. Here are a few tips that may help.
While some memories of the transplant experience dim with time, the trauma of the transplant will be remembered for many months, even years. It can take a very long time before a patient gets through a single day without reflecting on the transplant experience. Innocent remarks or events totally unrelated to the transplant may stir up unpleasant memories, leaving the patient shaken.
Many people who have been through the experience find it difficult to talk about, particularly with someone not intimately involved in the experience. They prefer to forget about the difficulties of the past, and go on with their lives.
Others want an outlet to talk about the experience. Support groups can be helpful for some patients, while others may prefer one-on-one discussions with counselors, other BMT patients, a family member or a friend.
Family members and friends of BMT patients often feel "shut out" by the patient who is unwilling to discuss her feelings with them. They must realize, however, that as much as the patient may love them and appreciate their concern, patients need to cope with the BMT experience at their own pace and in their own way. Unfortunately, patients seldom have enough emotional energy to help both themselves and their loved ones deal with the experience, no matter how grateful they are for their support.
A long-term, stressful side effect of the chemotherapy and/or radiation experienced by many BMT patients is infertility or sterility. Sperm banking, cryogenic embryo preservation, adoption, and assisted reproduction with donor sperm or ova are strategies some BMT patients are considering to cope with this problem. These options are discussed in more detail in Chapter 11.
Despite the emotional upheaval a transplant causes, life after transplant can be very special. Patients no longer take the future for granted, regardless of how promising their prognosis may be, and often enjoy each day of living more fully. As the months of survival turn into years, patients experience the added pleasure of being able once again to look forward to many more years of life.
On Saturday, June 15,1991, we celebrated the 10th Anniversary of our Shands Hospital, University of Florida Bone Marrow Transplant Unit. It was a time of renewed acquaintances, and never was it clearer to us all that time heals. Many 'graduates' whom we had last seen struggling and weary from their time in the BMT unit were now returned to their shining, healthy selves. What an array!
The laughter and tears flowed from all of us. Here is a poem dedicated to all who have faced this life challenge.
A lifetime of steady, schooling: alphabet-rotes, number recital, history's dates, cake-baking, fuse-fixing, slow-dancing, how we are bom and grow and age and die didn't ready you for the naked facts of our Consent Form.
A lifetime of educated modesty: closing your bedroom door, covering your body, segregating girls from boys, separate facilities for men and women, learned euphemisms for your body's functions - didn't ready you for our free inspection of your daily portapotti.
A lifetime of careless risk-taking: climbing trees, jaywaLking streets, diving rock-pools, floating to sea, driving fast cars, flying airplanes, rash rollercoaster thrill-seeking - didn't ready you for the chill reality of this life challenge.
A lifetime of practicing precaution: sheltering from harm, not overdoing it, running in the middle of the pack, getting by with the least amount of effort, okay grades without too much distinction didn't ready you for our accolades of this your hero's role.
John Graham-Pole, MD, University of Florida, Professor of Pediatrics
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