There is more to living than just not dying. (Heart Transplant Recipient, 1991)
What happens after surgery depends on the organ transplanted and the specifics of your own medical situation. There are some similarities, but many differences in experience between the various types of transplant. For example, compared to kidney transplant surgery, a heart recipient will typically have a longer recovery time. He or she is also more likely to spend time in an intensive care unit. Drug side effects and other complications occur more frequently with heart versus kidney transplant.
But one cannot assume that any two recipients of the same organ type will have an identical postoperative course of events. One recipient may have an additional illness, for example diabetes or a heart condition that requires special postoperative care. A transplant team can often deal with any other health problems that you bring to transplantation. Otherwise, they will ask a specialist doctor or nurse to help with your care. Depending on their nature, other health conditions may or may not influence your recovery after transplantation.
Your experience with other illness will no doubt affect your attitude and expectations after surgery. Kidney transplant again offers an example of what we mean. When this surgery was first available as a treatment option, surgeons offered it almost exclusively to those already receiving renal dialysis. Almost all candidates for kidney transplant had been treated for months or years with dialysis. Depending on a dialysis machine to clean one's blood can be a tremendous intrusion on one's lifestyle. Doctors place restrictions on the diet of dialysis patients. They risk periodic complications. And they must allow a great deal of time for health care. Still, many dialysis patients will report that they do not feel physically very well. Usually, the intrusion of kidney transplant is far less than dialysis. As a result, those on dialysis will often look to transplant with anticipation of relief and increased freedom.
However, it is now possible for surgeons to plan a kidney transplant prior to the complete shutdown of one's kidneys. It may be possible to avoid dialysis completely. Also avoided, is the discomfort and intrusion on lifestyle that occurs with dialysis.
Nobody would argue that this would be ideal for anybody with renal disease. But in one small way, it is a double-edged sword. Rather than view kidney transplant as a source of relief and freedom, the candidate or recipient may see the surgery as an intrusion into life and work. For example, a recipient without previous dialysis treatment will not find the side effects of anti-rejection drugs easy to tolerate compared to the hassles of dialysis. They become an irritating complication of transplant.
Years of treatment with dialysis will ready a kidney transplant candidate to see surgery as a welcome relief. Another candidate, who had never been treated with dialysis, might be more likely to view the surgery and recovery as burdensome compared to his or her previous health. It is like a man who wakes up on the morning of his wedding day and sees that the sky looks partly overcast. Assuming it had been storming heavily for several days before, he would be pleased that the weather had partly cleared. But had it been sunny for days before, the potential groom might be a little distressed.
Other types of transplant offer similar examples. With liver transplant, four out of five candidates have had several months or years of progressive illness before the time of transplant. But for the other one of five, liver failure occurs suddenly. The need for transplant is immediate. As mental confusion is common in this situation, these candidates often have little or no memory of events since the time they first became ill.
One month after surgery, a physician might find that two liver transplant recipients had recovered equally well. But the attitudes of the recipients could be very different. One who had been increasingly more ill over a period of years would likely be overjoyed at the improvement in his or her health. Another, who suddenly became ill and remembered little from the onset of liver failure until after transplant, would view their health as much worsened than before. From what others will tell them of what has happened, they will be happy to be alive. But it will take more time and discussion for these recipients to adjust to their new life circumstances.
In this chapter, we discuss the sequence of events after organ transplant surgery. The reader must keep in mind that each recipient's experience will differ. Your past and current health circumstances will greatly influence your own path after transplant. You may wish to take a few moments to think of how your experience with illness, doctors and hospitals may have influenced your expectations of transplantation and recovery.
The nursing staff who works in the recovery area will likely be the first people you see when you awake. These caregivers will ensure that you are safe and as comfortable as possible. At some point, you can expect a member of the surgical team to come to tell you about the surgery. They may have already talked with your family in the waiting area. The staff will decide when you are well enough to see visitors.
When you first wake up, you may be a little drowsy. The anesthetic drugs take a while to wear off. And a nurse may give you some pain medications. These can also make you sleepy. But this will not likely dampen your excitement about finishing the surgery. A feeling of relief and euphoria may occur once you realize that the surgery is over. Regardless, the nursing staff will encourage you to lie still and try to remain calm.
Depending on your type of transplant, you may spend a few days after surgery in an intensive care unit. A stay in this specialized area of the hospital allows your body the time it needs to regain control over basic bodily functions (e.g., breathing, heart rate, and blood pressure). The staff who work in an intensive care unit have trained to provide the care that you need to see you safely through this period. This care may entail the use of a machine that helps with your breathing (called a ventilator); tubes that go to and from your blood vessels; a small tube to empty your bladder; and a heart monitor. As your body resumes control, the staff will remove some of these connections. This will assure you that you are recovering well.
Not all transplant recipients will require a stay in an intensive care unit. After a short time in the recovery room, you may go directly to a surgical ward. Some wards now have specialized rooms called step down units. The care that is available in a step down unit is sort of halfway between that of an intensive care unit and a general ward. Any of the doctors or nurses with the transplant team can tell you in what area of the hospital you will go to from surgery.
These first few hours or days after transplantation can be a trying experience. Few find it easy to lie in bed calmly while uncomfortable. It is not usual for any of us to lie around while others care for our health and personal hygiene. But immediately after surgery, you are very much dependent upon the skills and sensitivity of the nursing and medical staff who looks after you. It is best to place your trust in them. Let them do the work that they have trained for.
Approach the time immediately after surgery with the attitude that others will look to your needs. Let them know how you are. If you cannot talk, write your message on a notepad. Even if you cannot write, surgical and intensive care unit nurses become expert at interpreting your gestures. Let them know if you are in pain, confused or frightened. They will do their best to make you as comfortable as possible. Of course, the only time that you will really be comfortable is once you are sitting at home in your favorite chair.
Major surgery can disrupt your sleep for a few days or more. The surroundings are unfamiliar. It may be noisy. Or you may fall asleep during the daytime and then find yourself alert in the night. The drugs and other treatments that the team will prescribe after surgery can sometimes interfere with sleep. The team might prescribe a sedative to help you get some rest. But this does not guarantee a peaceful sleep. This may be a problem that has to run its own course. Your sleep should eventually return to what is normal for you.
During this time, it is not uncommon for some transplant recipients to have dreams while they are half-awake. If this occurs let the staff know. They may or may not need to do something about the problem. It may pass on its own. But it will make their job easier to know what is happening with you. Sometimes, disorientation accompanies sleep disturbance or waking dreams. Staff will call this delirium or confusion. We discuss delirium more in chapter eight.
As you recover your health, the team will expect you to be more active. At times, you and your doctor or nurse may disagree about how active it is best to be. For example, you may not feel well enough to be out of bed as much as they wish. On the other hand, you may feel able to do much more than the team prefers. Should disagreement arise, discuss a compromise. Better yet, try to accept their guidelines.
We suggest this because how you feel at any moment is not the only, and may not be the best indicator of how much activity is advisable. Remember that the team uses many factors to measure your state of health. These include their bedside examination, laboratory tests and other observations. The team has extensive experience. They know the potential pitfalls of too little or too much exertion. They care about how you feel. And they can respect your opinion. But they have many other things to consider. You may know best how you feel. But you do not have their experience or perspective.
Everybody would wish that after surgery, you were home free. You have crossed a great barrier. And there are some lucky recipients who sail through their recovery with no setbacks. But this is not always the case. You should know of the two main complications that can sidetrack your recovery. These are organ rejection and infection.
It is important to remember that both of complications are common and treatable. You are likely best to count on a few setbacks after surgery. Your transplant team considers it a daily part of their job to deal with side effects and complications.
|
|
|
Adaptation implies that something has changed. Consequently, you must shift or make some change. Seasoned recipients will tell you that adaptation after transplant continues throughout life. How you must adapt depends on how illness or transplant has affected your life.
Talk of adaptation after transplant may surprise some. Most undertake transplant with the goal of resuming their normal life. This is usually another way of saying that you want the life that you had before you were sick. This is a natural expectation. Organ transplant can offer a miraculous opportunity for a second chance at life. It is also true that after an extended illness, your life will normalize with transplantation. But just the fact that you have had an organ transplant means that your life cannot again be just the same.
Your satisfaction with life after transplant depends on several factors. How successful was the transplant? Are you able to work or do the things that you enjoy? Have you lost things that were important for you? Some results will not be entirely within your control. But satisfaction also depends on your adaptation to life after transplant. It may be helpful for you to think of life after transplant as a new reality to enjoy. That was then, this is now.
Despite how successful your surgery and recovery were, some things will have changed in your life. It is to these changes that you must adjust. Your satisfaction with life is in part, dependent upon your ability to adapt. Fortunately, you have a great deal of potential influence on this part of the process.
|
|
|
|
|
|
As we have discussed, most transplant recipients will notice some changes in their bodies or their lifestyle. But some also report changes that seem to occur within themselves. These can take many forms. You may hear a recipient comment that their priorities or goals for their life have shifted. This can occur after living through a serious illness or recovering from transplantation. Some say that they are much less preoccupied with long range plans. They focus more on their life as it unfurls one day at a time. But it can surprise some that changes occur in their interests, relations with others, and what they consider important.
|
|
|
|
Andrew, Monica and Julia each found some shift within them after recovering from transplant surgery. Rather than working late or spending as much time with his friends, Andrew enjoyed himself at home with his family. But he didn't plan this adjustment. He just noticed that it had occurred.
Monica noticed within herself a compelling sense that she must give something of herself to others. While present before, this desire took on greater importance to Monica after her surgery. She made changes in her life to fit in volunteer work.
Julia sensed urgency about her life. She felt well after surgery, with better health than she had enjoyed for years. But she feared it would not last. It was never far from Julia's mind that her life was fragile and the future uncertain. She felt physically vulnerable. This is a difficult reality to deal with. Unfortunately, Julia rushed a major life decision due to a sense that she must act urgently to enjoy her time.
There are many reasons why transplant candidates or recipients may notice changes in their outlook on life. Truly, life is short. And it is fragile. Serious illness or transplantation can make these realities hard to ignore. They compel you to evaluate how you allot your time, to review what is really important.
Also, illness or transplant can force changes in your usual habits of daily life. This is usually an unwanted intrusion. But sometimes, it can help one to break out of the rut of living life automatically. One heart transplant recipient commented, "When I look back, it seems as if I was sleepwalking. The days moved on. But I stayed the same. I lived out the routine that was supposed to be me. I woke up the day my doctor told me that I would not likely live two more years without a transplant. Life has never been worse since then. And it has never been better."
I don't seem to remember things as well as before the transplant. What could be causing this?
I would like to thank the donor family. Is this possible?
What if I am not always in the mood for visitors after surgery? Is it rude to let people know this?
I have had a kidney and pancreas transplant. Is it safe for me to play sports?
