WE’VE BEEN THERE!
Mary, my wife, my love, and my companion for the last 53 years, is also my caregiver. Like most married couples, we have taken turns over the years doing whatever we could to help when the random illnesses and injuries required assistance to get through the day. We took turns.
Then, in 1995, it all changed. I was diagnosed with severe COPD, and Mary found herself thrust into the role of the “caregiver”, the all-encompassing term that implies so much! As the years passed, as my lung function gradually deteriorated, our relationship evolved. Mary took over many of the aspects of our life, duties and responsibilities that I had performed or that we had previously shared.
In late 2011, I was blessed with the gift of two new lungs! Our lives changed in so many ways, not the least of which was the caregiver/patient relationship. We hope to share some of our experiences with you, in the hope that the things we have learned will help you through the physical, emotional, and educational aspects of your new role as caregiver.
YOU ARE NOT ALONE…
Caregivers are essential members of health care teams. Of the homecare services for the elderly or those with chronic illness, nearly 80% are provided by family members. There are nearly 45 million of you out there. There are support groups, both in person and online, that can provide you with information, advice, sympathy, and other kinds of support.
ARE YOU READY?
Do you have what it takes to step up into the role of caregiver? It is a commitment not to be taken lightly. It may involve months, perhaps years, of concern for the needs of the patient. It will certainly involve the commitment of time, financial resources, and emotional support so necessary for the well-being of all concerned.
If the patient is your spouse or partner, you may have some dim memory of the whole "...in sickness and in health..." thing. You certainly meant it at the time, but who could have envisioned this? In a marriage or commitment, the underlying condition that demands the change in relationship will likely have come on over a period of time, allowing both parties to gradually adapt to the "new normal". The nature of the new relationship will depend somewhat upon the interactions of the couple prior to the need for the change. Ideally, the new situation will result in an increase of the love that created the union in the first place. A mutual exhibition of respect, patience, and a sense of humor will help tremendously!
Due to the fact that most lung transplants do not become necessary until later in life, many potential transplantees find themselves living alone because of divorce or death of their spouse or partner. If that is the case, someone else must place themselves in the role of the caregiver. Are you that person? We would all like to think that we have the love and compassion to step into that vital position, but it is a commitment not to be taken lightly. If you are a sibling, a cousin or other relative, or a friend, you must realize that your life is going to change. It is of course possible for a small group of friends or family members to form an allegiance of caregivers, but such an arrangement demands a high degree of planning and coordination in order to assure that all of the needs of the patient are met.
If you are a spouse or partner who has found yourself in the new position of caregiver, and especially if you have what it takes to step into the role from outside, bless your hearts! You have become essential in the continued health of a fellow human being. Hopefully, the following will help you in your journey.
WHO’S MOST IMPORTANT?
The natural answer to that question would be the patient…the person in the equation who needs assistance in getting through his or her day. Mostly true. However, you have another job, a vitally important one. That responsibility is to yourself. There is nothing selfish in taking care of yourself, eating right, exercising when possible, sleeping as well as possible, and keeping up with your own medical issues. Not to do so is to risk the well-being of both yourself and your patient!
Read a book, watch a favorite TV show, talk to friends or family members. Don’t neglect a hobby that brings you satisfaction. If your faith is a source of strength for you, then by all means reach out to a religious leader or pray directly to the deity of your choice. There is every chance that the whole caregiver experience will result in the discovery of an inner strength that will surprise you. It will certainly offer an opportunity to strengthen the bond between the two of you.
We will talk more about attitude, but if you can stay positive, set realistic expectations for yourself and for the patient, and maintain a sense of humor, you will find that the good days outweigh the bad. If something sours your mood for a while, do your best to work through it. Enlist the help of others if necessary. Your attitude will effect the environment of your patient, and the quality of care that you are able to provide.
The potential of a lung transplant is a big deal. It is something that will tend to attract the attention of your friends and family. They will naturally be curious. In order to inform them without actually making things up, it will be even more important for both the patient and the caregiver to learn as much as they can about the disease, the procedure, and the aftermath. You will likely be a bit overwhelmed by the evidence of caring and love that will be directed your way. There will likely be offers of assistance in many forms, even if it is only to provide a sympathetic ear. Do not hesitate to accept these offers, if they will in fact be of help to you. If someone offers to, say, mow your lawn or watch over your pets or houseplants, take them up on it! Ask them if they are serious in their offer, and give them a schedule. It will help you and it will make them feel all self-righteous.
For the patient…your attitude will also play a huge part in the relationship between you and your caregiver, in adding to the enjoyment of your daily lives, and in helping them to help you! They didn’t plan this. Neither did you. However, wallowing around in guilt because they have to take care of you will accomplish nothing. If you are fortunate enough to get your new lungs, it should only be a matter of months before you are once again able to help out. If the new lungs are not to be, for whatever reason, a positive attitude will still help both of you tremendously.
A RARE BREED, INDEED!
Acting as a caregiver is a unique experience under any circumstances. However, due to the very nature of the underlying disease, the procedure, and the subsequent recovery, a lung transplant patient requires a truly different approach.
Some ailments will heal themselves, simply due to the nature of the disease or injury. The patient, under normal care, will gradually improve in health, activity level, and ability to care for themselves. Acute maladies, those brought on by accident or unexpected onset of disease, may suddenly require a great deal of care, attention, and the resultant physical and psychological demands on the caregiver. These needs then lessen as the healing progresses.
Chronic diseases, on the other hand, tend to go the other way. Chronic means that the condition is not going to go away. That being the case, the caregiver is normally faced with increasing responsibility, more physical and mental strain, simply more work as the disease progresses. In some cases, the progression is fairly rapid, requiring a seemingly constant shifting in physical needs, physician visits, medication changes, and other necessities. In other situations, such as with COPD and some other chronic lung diseases, the advancement of the disease, the worsening of the symptoms, may take place over a period of many years.
In addition to the difficulties involved in the advancement of the disease, there are other disadvantages to this slow, insidious deterioration of the patient’s abilities. The caregiver is faced with the prospect of a truly long-term responsibility, with the knowledge that the battle to keep themselves and their patient as healthy as possible will be an extended one. On the other hand, the protracted advancement of the symptoms allows both parties to adjust, to acclimate to the “new normal”. As time passes, both of you will gradually change your physical activities, your attitudes, your approach to each other. On a day-to-day or even on a month-to-month basis, you will hardly notice the difference. It is only by looking back over many months or even a few years that the changes really become apparent.
The exception to that slow progression is the “exacerbation”, the sudden worsening of the patient’s condition due to outside influences such as infection, pneumonia, or other complications. These events can cause a drastic deterioration in the patient’s health, and recovery can take a good deal of time and effort on everyone’s part.
So, the caregiver of a lung transplant patient will experience a unique set of circumstances in the relationship to the patient. Prior to transplant, the condition of the patient is definitely chronic, ongoing, and results in a measured worsening in function. The caregiver must assume more and more responsibility in handling the needs of the patient and of the household.
Then, suddenly, the call comes, the waiting is over, and the patient disappears into the operating room. It is not necessary here to go into detail about the massive replumbing job that results in the implantation of new lungs, but suffice it to say that the result is a major insult to the patient’s body. Suddenly, in the vast scheme of things, the oxygen cannula and bottles and assorted equipment have been replaced by drainage tubes and a catheter and various telemetry equipment to track an amazing number of functions.
The COPD, the chronic condition that occupied both the patient and the caregiver for so long, is gone! It simply no longer exists, assuming a double lung transplant. It has been replaced by what would normally be considered a grievous injury, an extensive wound, and many, many surgical staples. The acute care of the patient has begun.
LEADING UP TO THE TRANSPLANT…
Caregiving has been described as a life put on hold. It is not uncommon for the caregivers of chronic patients to express feelings of isolation, frustration at the limitations on their own life, and fear that the patient will die while waiting for transplant. These emotions are natural and very common.
Whether you have been acting as a caregiver for many years, and especially if you have recently found yourself in that position, there are certain basics that will help you, your patient, and any medical professionals who may be involved.
Life is filled with choices. Given a diagnosis of progressive lung disease, one can simply choose to go home, sit down, and wait for the inevitable.
That is the easy route to take, and can become a self-fulfilling prophecy.
A much wiser choice, likely the choice that has been made by the patient and/or caregiver if a transplant is being considered, is to do whatever is necessary to fight the disease. That fight begins with knowledge. There is a vast array of information available from medical professionals, from books and the Internet, from support groups, and from organizations such as the American Lung Association and the COPD Foundation. To learn about one’s disease is to gain power over it. It is natural to feel a loss of control when diagnosed with a progressive disease. However, gaining knowledge is gaining power. Therein lies the ability, the attitude, the fortitude to fight.
No two lung disease patients are alike. There are many types of lung disorders, some curable, some not. Within these broad categories are degrees of illness and combinations of diseases, each of which requires special treatment. Additionally, co-morbidities, problems with other organs may enter the picture, further complicating the treatment, the needs of the patient. The uniqueness of your patient requires that both of you be aware of and understand the diagnosis.
MONITOR THE PATIENT’S CONDITION…
Have a conversation with the Doctor about when you should seek their help. In general, the signs to watch for include:
More than usual trouble breathing during everyday activities
Fever…check with the Doctor as to degree
Increased production of mucus, increased difficulty in expelling mucus, or change in appearance of expelled mucus
More coughing than usual, harder coughing, chest pain
Swelling of hands, feet, or ankles
More weakness than usual, excessive tiredness Muscle cramping
Sleep disorders related to shortness of breath
While most lung diseases that may result in transplant are not curable, they are certainly treatable. Medications are available that can help curb infection, inflammation, bronchial spasms, and excess mucus. If necessary, pain medication, anti-depressants, and anti-anxiety drugs can help with overall comfort and mental state. As the disease progresses, it may become more difficult for the patient to remain compliant with the medication regimen. The caregiver must be familiar with the various meds, their purpose and dosage, and will likely deal with the renewal of prescriptions.
The only drug available for the treatment of emphysema as of this writing is supplemental oxygen. If your patient has been prescribed oxygen, it becomes your responsibility to become familiar with the equipment and its operation. Compressed oxygen bottles, portable liquid oxygen, portable oxygen concentrators, and larger home concentrators are all methods of oxygen delivery to your patient. Establish a relationship with the supplier of the oxygen and related gear, so that you can communicate with them as to the needs of your patient. Become aware of the prescribed liter flow for various activities such as resting, sleeping, and exercising. Insist that your patient wear the supplemental oxygen when it is prescribed, not just when it is convenient. There is a real tendency to resist wearing the oxygen cannula, whether through ego, shame, fear of pity from others, or just to avoid the logistics of moving about with it.
Both you and your patient must realize that oxygen deprivation can result in severe, irreversible damage to many parts of the body, most notably the heart and the brain. The effects can be pulmonary hypertension, enlargement of the right side of the heart, and congestive heart failure. Brain cells lost through a lack of oxygenation do not come back. The effects come on gradually, like most lung disease itself, so that the cumulative damage is not readily apparent in the near term. However, over a period of time the cognitive functions will suffer. When this happens, it becomes even harder for the patient to maintain medication and activity routines. The role of the caregiver then becomes more complicated, more difficult, and more necessary to safeguard the patient.
Exercise is hard. For the lung disease patient, it becomes similar to aversion therapy. That is, physical activity, any attempt to exercise, brings on shortness of breath. That is an unpleasant feeling, and we naturally tend to shy away from those feelings. Unless the patient can summon the fortitude to fight through the discomfort, to persevere despite the distress of labored breathing, there is a real tendency to slack off, to give up, to wait for another day when they will feel stronger.
Trouble is, that day never comes. To function, to maintain a decent degree of resilience to fight off the infections and other evils that await, to stay strong enough to qualify for transplant listing, the patient must exercise! Strong muscles use less oxygen than do weak ones. Thus, if the patient can keep the rest of their body strong despite the condition of the lungs, they will be able to do more, to remain more active, to live their lives with a greater degree of satisfaction, of enjoyment. Unless your patient is motivated to exercise on their own, consider joining them. Mutual encouragement had been shown to be an effective tool.
Investigate the availability of pulmonary rehabilitation classes. Many large hospitals and other medical facilities offer these extremely valuable programs. They vary in scope, but most encompass guidance in exercise routines, supervised physical activity, and a variety of classes on the various aspects of living with lung disease. There may be instruction on medications, nutrition, and simply living with lung disease.
It is impossible to overemphasize the importance of physical conditioning for the potential lung transplant recipient. Simply put, the better shape the rest of the patient’s body is in, the stronger the muscles of the arms and legs and shoulders, the better the likelihood of acceptance into the transplant program, the higher the expectation of survival on the operating table, and the easier the recovery. After the operation, the patient will not be able to use their upper body to pull, push, or lift for 8 weeks or so. During that time, if the muscles of the legs are not strong, the patient will not be physically capable of rising from a chair!
Exercise will enable the patient to remain active while waiting for a transplant, will bolster their attitude, and in the event of a negative response from the transplant team regarding the advisability of pursuing new lungs, will greatly increase the likelihood of additional good years of living.
A fingertip pulse oximeter will allow you and your patient to monitor their oxygen saturation during various activities. Encourage the patient to carry the pulse/ox with them and to use it frequently, under various activity levels, in order to monitor their oxygen level. Follow the advice of your medical personnel as to the desired saturation, and utilize the supplemental oxygen, if prescribed, to maintain it.
As the disease progresses, it will become more and more difficult for the patient to deal with the entire food shopping, preparation, and eating process. Consequently, it will likely fall to you to take over the shopping and cooking, and to help guide the patient in proper meal habits. Like many of the aspects of caregiving, the transfer of culinary duties will likely be a gradual one.
Proper nutrition is important to all of us. For the lung disease patient, it is vital. Depending on the condition of the lungs, it can take up to 10 times as much energy for those with lung disorders to simply breathe. That expenditure of calories, coupled with weight loss from poor eating habits, can render the patient more susceptible to infections, allergies, and other damage.
Cook larger portions and store the leftovers. Most foods will freeze nicely, and the ability to thaw and/or reheat favorite foods will save you a great deal of time. For both of you, try to prepare balanced, healthy meals. Processed or cured meats such as bacon and sausages are harder to digest and contain a great deal of sodium. If the patient is underweight, include extra calories through the use of butter, mayonnaise, peanut butter, and honey. Watch other dietary restrictions if the patient suffers from diabetes. Most transplant teams include a nutritionist. Seek and follow their advice.
The whole eating process can be exhausting. Suggest that the patient wear supplemental oxygen while eating. When damaged lungs increase in size, they crowd the abdominal area so that the stomach has less room to expand. Also, the act of digestion takes a good deal of energy. For those reasons, suggest several small meals throughout the day, rather than two or three big ones. If the patient is having trouble maintaining weight, high-calorie snacks should be kept handy.
An overweight patient can find it difficult to breathe. The stores of fat restrict the room needed for the expansion of the lungs, and the additional body mass requires more oxygen. Again, strive for healthy, nutritious meals. Dieting that results in rapid weight loss can weaken the rest of the body. Suggest that the patient eat a little less and stress regular exercise.
MAKE YOUR HOME SAFE!
In spite of the best of intentions, your patient and consequently you as caregiver are going to spend a lot of time at home. For that reason, try to make it as safe and comfortable as possible. For the sake of both of you, use precautions as outlined by the supplemental oxygen supplier. Post a sign stating that oxygen is in use in the home. Be very careful of open flames. Oxygen is not flammable by itself, but it will certainly promote combustion. Keep a fully charged fire extinguisher handy.
If the oxygen hoses are a problem, if they offer a tripping hazard or seem irresistible to Fluffy or Rover, consider installing a series of hooks above doorways throughout the home to keep them out of the way. Grab bars in or around the shower can be helpful in preventing devastating falls. A shower chair can make an exhausting procedure much more pleasant. Run the oxygen hose up and over the shower curtain rod or the shower door, so that the patient will have a constant supply of oxygen while showering. The shower process, especially raising the arms over one’s head, can be especially difficult. For that reason, do not hesitate to turn the liter flow up to the level prescribed for exercise. Consider the use of an absorbent robe to eliminate much of the work of drying off. A shorter, less complicated hairstyle will prove much easier to maintain.
Build a nest around the patient’s favorite chair. Make sure that the remote, a glass of water, healthy snacks, a phone, and a laptop computer or tablet are within reach. Activity is good, but a well-equipped nest will add to the patient’s sense of well-being. That said, there is no reason for the patient to grow roots and avoid any movement whatsoever. If they show signs of gathering too much stuff, if their little habitat begins to look cluttered, it may be time to sort some of it out. Nesting is one thing. Hoarding is another.
ALL THE OTHER STUFF…
There is a seemingly endless list of tasks necessary to the proper running of a household. Cooking, cleaning, laundry, and yard work take a good deal of time and effort. The more cerebral pursuits, the paying of bills and checkbook reconciliation and dealing with investments and the whole income tax thing are normally either shared by spouses or handled by one or the other. Like other aspects of life, some or all of these responsibilities will likely be taken over by the caregiver. Depending upon the severity of the disease and the rate of progression, the transition may take place sooner or later in the caregiver’s tenure.
It is no secret that some of us are equipped to deal with the “bookwork” involved in survival in the modern world. For the caregivers who are not familiar with the requirements or procedures in keeping track of all of the financial stuff, help is available. For those comfortable with the Internet, instruction on such things as bank statement reconciliation is available. For the technologically challenged, there are publications available that will guide you. If any of the household responsibilities are beyond the abilities of the caregiver, or if they simply seem too daunting, it may become necessary to enlist the aid of friends or family members. Check with your bank to see if advice is available. If the funds are available to pay for expert help, the guidance of an accountant or attorney or investment counselor can be valuable.
There is a great deal of value in learning to work smarter, not harder. If that involves seeking outside help, paid or unpaid, you may well be doing yourself and your patient a big favor. Do not, in any event, let the household responsibilities slide. Therein lies the gradual decline in the condition of the home, the state of the finances, the health of the patient, and your own mental state.
Preparing for a lung transplant is, under the best of circumstances, a harrowing ordeal. For the patient, it involves a seemingly endless parade of interviews and testing. Meetings with pulmonologists and surgeons and all manner of medical support personnel are interspersed with conferences involving financial coordinators and nutritionists and social workers. The transplant coordinator will become the patient’s new best friend. The testing will encompass several days, and will involve bodily functions of which the patient was previously only vaguely aware.
The battery of tests is, of course, designed to uncover any other disorders that might interfere with the transplant operation or with the patient’s likelihood of survival for long enough to warrant the operation. In addition, the test results may well suggest other procedures that should be performed, either before or after the transplant. All of the poking and prodding might just result in a much healthier patient. Again, knowledge is power.
For the caregiver, the whole testing and interview process can be alternately encouraging and terrifying. Just knowing that the possibility of a transplant exists can seem like a miracle. After years of watching the patient deteriorate, any answer to the continuation of the slow slide toward the inevitable seems too good to be true. Waiting for the results of each medical test can be stressful for both the patient and the caregiver. The caregiver must also realize that they are being evaluated along with the patient. The role of the caregiver is so vital that most transplant programs will not even consider the possibility of transplant unless the relationship is in place.
Given favorable test results, the knowledge that their patient is due to undergo major surgery is disquieting. The photos and diagrams of lung transplant that are available on the Internet are informative, to be sure, but will do little to settle that feeling in the pit of one’s stomach. Don’t say that we didn’t warn you!
After undergoing the most complete physical that the patient has likely ever had, and after the evaluations from all of the other members of the transplant team, a decision will be made as to the advisability of placing the patient’s name on the transplant list. In most cases, the decision involves input from most or all of the transplant team. There are many aspects of the patient’s condition and situation to be considered, and each member of the team will have gathered their own information, their own opinions. Remember, the primary concern is the well being of the patient. There will certainly be circumstances in which the ordeal of a transplant would not be in the best interests of the patient. If underlying diseases, lack of physical conditioning, or the mental state of the patient indicate that a transplant might well do more harm than good, it is the responsibility of the transplant team to deny the operation.
If, on the other hand, the indications are good that the procedure would enhance the quality of life for the patient, prolong that life significantly over what might be expected without the transplant, then the patient will be placed on “The List”! The patient’s name and medical information are entered into the database of the United Network for Organ Sharing (UNOS). The national computerized listing organization adds the information into the “pool” of eligible patients. Then, when donor lungs become available, the computer generates a list of potential recipients who match the donor organ(s) in blood type, tissue type, size, and other respects.
Pack a bag for both of you and keep them fresh with clothing, necessary medications, toiletries, and other essentials. A small supply of the patient’s regular medications should be packed. If the transplant is a go, the hospital will take over the drugs for the patient. Obviously, a goodly supply of meds should be packed for the caregiver. If you do not live near the transplant center, the preparations are even more vital. Once the patient is called, there will be a window of only two to three hours until they should be at the hospital. The hospital stay will last from a few days to a few weeks or more, so plan accordingly. Keep the “ready” bags in the car, the gas tank near full, and the car in good repair. When the call comes, you do not want something minor to delay you.
IN THE HOSPITAL
Again, every patient is different, so there is no “normal” length of hospital stay after a lung transplant. It can range from just a few days to several weeks, depending on the condition of the patient going into the procedure, the closeness of the tissue match, the tolerance for the transplant and anti-rejection drugs, and many other factors. It is best to stay flexible and suspend any expectations as to discharge date.
The first view of the patient after the transplant operation can be shocking. They will very likely be unconscious. They will be intubated, a tube inserted into their mouth and trachea to help them breathe. There will be a tangle of wires leading from their body to various machines to monitor their vital signs. A urinary catheter will be in place. Drainage tubes, usually four of them, will lead from the chest and upper abdominal area, and intravenous lines will be in place to deliver pain meds and other drugs. And then, of course, there will be the incision. It will be big and impressive and will, in the event of a double transplant, stretch from under one arm across the chest to under the other. It will be lined with surgical staples, upwards of 60 of them.
The patient will spend some time, from a few hours to several days, in the Intensive Care Unit. There, they will gradually regain consciousness and a sense of wonder as to what has just happened! As soon as practicable, the ventilation tube will be removed, and they will hopefully be able to breathe on their own, without oxygen! Again, the timing varies, but ideally the new lungs will have taken over the task of oxygen delivery.
During the hospital stay, the caregiver may experience some sense of relief from knowing that others are now in charge of keeping the patient functioning. It is a good time to take a few deep breaths and relax in the knowledge that part of the battle is now over. All of the months, perhaps years of work and worry and care have paid off! The patient was delivered to the transplant team in a reasonable condition, still healthy enough to be considered for the major surgery that is lung transplant. It is a time to be proud of the tremendous efforts that have led the two of you to this momentous event!
However, the relaxation may be short-lived. During the time that the patient is in the hospital, the caregiver will be faced with a whole new learning curve. As wonderful and efficient as the transplant medical team is, there will be times that some of the more minor needs of the patient must be met by the caregiver. Anything involving needles or monitoring equipment or anything unrecognizable would be best left to the nurses and other professionals, but they will likely appreciate help with the more minor wishes of the patient. If the caregiver is unsure as to the limitations, they need but ask!
Not long after the patient graduates to their regular hospital room, the visitations will begin. Both the patient and the caregiver will likely visit with a nutritionist, a social worker, a pharmacist and others. Physical therapists, inhalation therapists, and the guys with the X-ray machine will appear and disappear with some regularity. Vital signs and blood draws will become part of the day, as will increasingly frequent and successful attempts to get out of bed and walk the halls. Considering the presence of drainage tubes and a catheter and the related receptacles, not to mention various intravenous tubes for medications, these walks will initially resemble a mildly untidy space walk.
Due to the fact that the patient’s immune system will have been effectively destroyed, there will be many precautions taken to guard them against any risk of infection. Any visitor to the patient’s room, including all medical personnel and especially guests, will be gowned, masked, and gloved. The patient will wear a mask on his or her forays up and down the hallway in their efforts to exercise, but the patient and usually the caregiver will be the only ones in the room without a mask.
Both the patient and the caregiver will have heard tales about the large number of pills that will be required to be ingested after the transplant. All of these tales are true! The antirejection drugs will not only guard against the patient’s body attacking the new lungs, but will also do their best to destroy the immune system. That being the case, supplemental medications will be necessary to help prevent bacterial and fungal and viral infections. Certain of the medications will serve to deplete calcium and magnesium, so supplements will be necessary. By the time vitamins and stool softeners and bone density meds are added, the number of daily pills will have grown to seem outrageous. If the patient has any other medical conditions, they will be represented by even more colorful little pills or capsules. If the patient has difficulty swallowing the handfuls of medications, the use of applesauce or something with a similar texture may be helpful.
It is not unusual for the onslaught of new medications to cause some side effects. The patient may exhibit an intolerance for certain of the drugs, and there is always the possibility of drug interactions. The transplant team will have selected the medications carefully to minimize these problems, but every patient is different.
These side effects can range from mild discomfort to hallucinations. It is not at all unusual for the patient to experience illusions, visions of things that seem extremely real, even feelings of paranoia. When and if these conditions manifest themselves, it is important for the patient to communicate them to the medical personnel, and for the caregiver to offer patience and understanding. Having been through a four-day bout with paranoid psychosis, I can tell you that the fantasies are as real to the patient as they can be. It is really hard to deny something that you see right in front of you. It is also the responsibility of the caregiver to report any strange behavior to the medical staff. It can be frightening, but it is a temporary situation.
Ideally, the patient will improve, grow stronger with each day in the hospital. There may be setbacks, even attempts by the patient’s body to reject the new lungs. The condition of the patient will be very carefully monitored, so that any changes that indicate a problem will be spotted early. Most situations can be rectified with adjustments to medications.
As the discharge date approaches, the caregiver will be responsible for handling the logistics of moving the patient back to civilian life. In many cases, the first move will be to temporary housing near the transplant center. The patient will be subject to pulmonary function tests, x-rays, and clinic visits on a frequent basis after discharge.
When the time for leaving the hospital arrives, the patient will likely still be just days past major surgery. They will be weak, and will be restricted from using their upper body for much for 8 weeks or so. Because of the healing incision, they will not be allowed to lift more than the lightest objects, or use their arms for pushing or pulling. For that reason, it is vital that the patient’s leg muscles be as strong as possible, so that they can rise from a chair.
Certain items will help the caregiver in the home care of the patient. Things such as a walker, a shower stool, or a toilet riser may not be necessary for long, but they will likely come in handy. Arrangements for rental or purchase of the items should be made prior to discharge.
The caregiver and the patient should be familiar with the myriad of medications. The transplant pharmacist will have ordered the initial prescriptions, but arrangements will need to be made for refills. The caregiver should insure that all necessary medications are on hand on the day of discharge, to avoid any last-minute confusion.
AFTER THE TRANSPLANT AND BEYOND…
Any situation can become the “new normal”, even the phenomenon of the gradual deterioration of the patient. After becoming accustomed to providing more and more care, suddenly the caregiver for a lung transplant patient sees the situation reversed! It will all take time, but the incision will heal and the patient will grow stronger. As this minor miracle takes place, the relationship will necessarily change between the patient and the caregiver. Ideally, the dependency relationship of the pre-transplant era will be replaced by an escalating feeling of partnership. The roll of the caregiver may evolve into that of a coach, a supervisor, perhaps a cheerleader.
The transplant team will want to keep close tabs on the patient. This attention will seem intense at the beginning, but it is in everyone’s best interest. The list of precautions given to us upon discharge is reproduced below.
Call your Coordinator immediately if you experience any of the following:
Shortness of breath
Fever (temperature over 100.4)
Coughing (cough may be dry or productive)
Feeling tired or dizzy
Feeling like you did before the transplant
Anything that is red, swollen, warm to touch or that has a discharge
Burning in urination/difficulty urinating/no urination
Flu like symptoms
The patient will be asked to monitor his or her own vital signs on a daily basis. Taking and recording the vitals will point out potential problems, and will also reveal any trends…readings that indicate a gradual change that may indicate a setback. A blood pressure monitor, a thermometer, and a fingertip pulse/oximeter will keep track of the major signs. An inexpensive spirometer is available that will measure peak flow and FEV1, the measurement of the amount of air blown out of the lungs in a second. It is not unusual for the transplant drugs to cause diabetes in the patient for a period of time. Consequently, a blood glucose level meter will be necessary.
I keep a spreadsheet on my computer that records my vitals daily. It shows the date, time of the reading, glucose level, insulin administered if necessary, and my weight. Next is my temperature, blood pressure, pulse rate, and oxygen saturation level. Presence or absence of a bowel movement, my peak flow and FEV1 expressed in liters and as a percentage of the ideal is next. Finally, there is a column for comments and for the type and duration of exercise activity.
EVERYTHING IS A TRADE-OFF…
The implantation of fresh “new” lungs, the newly discovered ability to actually breathe without the aid of supplemental oxygen, may seem like a miracle, and in many ways, it is! However, nothing in life comes without a price. The job of the transplant medications is to knock out the patient’s immune system, so that the body has less of a tendency to reject the new lungs as foreign objects. We spoke earlier about susceptibility to the infections and pneumonias that lurk out there. Without an immune system, you and the patient must do everything that you can to ward them off.
Cleanliness is vital. The wearing of surgical masks is highly recommended whenever the patient is exposed to possible infections. Crowds, hospitals, medical offices, and anyone exhibiting signs of the sniffles are to be avoided. Hand-washing and sanitizer and rubber gloves can help tremendously in resisting germs. The patient should try to avoid touching their face with their hands, as that is an excellent way to transfer germs to the eyes, nose, and mouth. As time goes on, both you and the patient will tend to become more cavalier about the precautions, but both of you will have to beware certain situations for the rest of the patient’s life.
The handful of transplant drugs will likely include antibiotics, antivirals, antifungals, and other medications to boost the patient’s resistance. Like the other pills, the patient will be taking them on a daily basis from now on. Certain of the new drugs will result in side effects, some temporary, some necessitating changes in prescriptions, and some just bothersome. Prednisone can cause diabetes, hand tremors, unusual hunger and the swelling of cheeks. Other effects may include weakening of bones, muscle weakness, or mood swings. Normally, the dosage of prednisone will be decreased as the patient recovers, but many patients will continue on a low dose forever. Thankfully, many patients tend to adapt to the drug over time, and their side effects will diminish.
The other transplant medications can have their own effects. It is wise for both the patient and the caregiver to research all of the drugs, through the Internet and/or the materials provided by the transplant team and their pharmacy.
THE DREADED REJECTION EPISODE:
There are several classifications of rejection of the new lungs. Hyperacute Rejection can happen within minutes of surgery, or within a couple of weeks. As the technology of lung transplantation has progressed, the incidence of Hyperacute Rejection has almost been eliminated.
Acute Rejection is most common, and will be a continual threat. The monitoring of vital signs on a daily basis is very important for the detection of changes in readings that might indicate a rejection episode. When the symptoms appear, they can be treated by medication changes, steroid infusions, or possibly admission to the hospital.
Recurrent Rejection is the term used for persistent, repeated episodes of Acute Rejection.
Chronic Rejection occurs over a period of time, and gradually results in the deterioration of the new lungs. It is characterized by repeated infections, and is not as likely to respond to treatment.
It is said that all transplant patients will experience a rejection episode. Most of these episodes will not cause permanent damage, but they are to be guarded against. Compliance with medications, the tracking of vital signs, staying physically strong, and keeping in close touch with the transplant team will all keep the patient and the new lungs healthy.
It is not unusual for the transplant patient to exhibit a certain friskiness…the tendency to try doing things that had become difficult or impossible due to the loss of lung capacity. Within reasonable limits, this is all well and good. As we discussed previously, the use of the upper body will be limited for 8 weeks or so, to allow the healing of the incision. That does not mean, however, that walking or an exercise bike or a treadmill is out of the question. Quite the contrary. Two days after I left the hospital, I did 5 minutes on an exercise bike. The following day, I did 10 minutes on a treadmill. Within a few weeks, I was doing something active for 45 minutes to an hour a day. I truly believe that my exercise habits both before and after my surgery have kept me alive and healthy! Before I was listed, I was on the treadmill for 45 minutes a day, at 8 to 9 liters of oxygen, in order to keep my oxygen saturation at proper levels. When I was listed, I increased to an hour a day. After the transplant, just as before, it is the responsibility of the caregiver to help the patient stay active. Lack of some manner of regular exercise can lead to loss of strength, infections, rejection, and basically the waste of the gift of new lungs.
Transplant patients should not expose themselves to sources of infection. That seems obvious, but germs can hide in some unexpected places. Shopping cart handles, theater seats, menus, and the exposed food on a buffet table may harbor bacteria or microbes that can result in nasty infections. Small, sticky children may be adorable, but treat them with the caution reserved for any other little germ factory. The patient must not clean feline litter boxes. Toxoplasmosis is a parasitic disease that can result from a cat scratch or exposure to cat feces. It can result in encephalitis, neurological diseases, and death.
The transplant team must clear any medications or supplements other than those prescribed. With so many drugs involved, the chances of interactions are multiplied, along with the resultant problems. The use of alcohol should be strictly controlled. Recreational drugs must be absolutely avoided, and smoking or nicotine use in any form is, in a word, brainless!
The caregiver can help to keep the patient’s home clean and dust-free. Replacement of carpeting, the use of fresh furnace and air conditioning filters, and regular vacuuming can help to reduce irritants. Pets should be kept clean, and the patient should wash their hands after petting them.
Another effect of the immunosuppressive drugs is to increase the patient’s susceptibility to some cancers, most notably skin cancer and lymphoma. Make sure that your patient avoids sunlight, especially during the middle of the day. If they are exposed to the sun, make sure that they wear a good sunscreen. A big hat and long sleeves will help to avoid the harmful rays.
It is no secret to you that the whole transplant journey is an emotional one for everyone involved, especially the patient and caregiver. Fear, excitement, confusion, euphoria, and depression may all pay a part, both before and after the transplant. These mood swings are not unusual, and are the result of medications, the trauma of major surgery, and the amazing roller coaster that is lung transplant. The patient and the caregiver may both experience fatigue, sleep disturbance, or anxiety. Be patient with each other.
The patient will be scheduled for frequent checkups by the transplant team. Chest X-rays, pulmonary function tests, blood tests, and a visit with the clinical staff will be included. The frequency of these visits will decrease as time goes on.
Periodically, other tests will be performed. A bronchoscopy, also at decreasing intervals, will tell the team the true condition of the new lungs. If there is any sign of rejection or the growth of anything infectious, the team can take the necessary steps.
In addition to the clinic visits, the patient should make regular appointments with a dermatologist, a dentist, and an ophthalmologist. Colonoscopies should be performed to insure that the weakened immune system has not allowed the formation of pre-cancerous polyps. Both the patient and caregiver should keep up with their flu and pneumonia shots.
Assuming that your patient has undergone his or her transplant, and further assuming that everyone is behaving as they should, congratulations! You, as the caregiver, have performed a tremendous service! Your work is not over, but be proud of the months and years of service that you have given in the effort to keep your patient as healthy and active as possible. You have been, and remain, an extremely important, vital member of a team.
We admire you and we thank you…
Uncle Jim & Aunt Mary