| FAQ for Patients and Families
How do I contact your program?
To make initial contact with our program, call our program's toll free number, 1-800-944-8220, and ask for one of our Patient Coordinators, Beth Kaufman, RN or Stephen Locher, RN. They are available from 8 AM until 5 PM (Central Time) Monday through Friday. If you call after hours, your call will be answered by voice mail. Please leave a message. Our Patient Coordinator will help you get in contact with other members of our team. If for any reason you need to urgently reach a transplant program physician you may call the transplant inpatient unit any time at (319) 356-3330. You may also call the University of Iowa Hospitals and Clinics operator at (319) 356-1616 and ask to speak with the fellow physician on call for hematology and oncology.
How do I get referred to your program?
The usual first step is to ask your physician to contact us. A somewhat more difficult pathway is for the patient to call us directly as a "self-referral". Since your physician possesses information crucial to complete our evaluation of your case, we strongly recommend that you ask your physician to make the initial contact. We will work with your physician to verify that your disease can be treated with stem cell transplantation at our center. We will also make arrangements for you to visit us for an initial consultation visit. The purpose of this visit is to evaluate you very carefully and discuss your transplantation option.
How many transplants has your program done?
The Adult Blood and Marrow Transplant Program at the University of Iowa Hospitals and Clinics has treated more than 1300 adult patients with stem cell transplantation since our program began in 1980. Approximately 650 patients have been transplanted by using stem cells from someone other than the patient. An equal number of patients have been treated by using their own stem cells. Of those who received donor cells, more than 240 patients received their stem cells from an unrelated donor. We performed our first stem cell transplant in 1981. At present, approximately 120 to 140 adult patients are transplanted yearly.
What are the differences between bone marrow transplantation and blood stem cell transplantation?
The single most important difference is the source of the stem cells that give rise to mature blood cells in our blood stream. Bone marrow transplantation uses marrow-derived stem cells that live in our bone cavity. Marrow stem cells used in transplantation are obtained from the donor by removing a portion of the liquid marrow from the hip bone using a needle. This procedure is done in an operating room and requires some form of local or general anesthesia.
Blood stem cell transplantation uses stem cells circulating in our blood stream that originate from the bone marrow. People do not have enough stem cells in their circulation to provide the number needed for a transplant. For a person to donate blood stem cells, we need to increase the number of cells circulating in the body. We do this by injecting the donor with a drug called Filgrastim subcutaneously or just under the skin. Filgrastim is a stem cell growth factor medication that increases the number of stem cells released from your marrow into your blood stream. These cells can then be collected from your veins using a process called apheresis. The injections of Filgrastim take place for four or five consecutive days prior to the donation. The apheresis procedure is similar to other blood donation procedures like donating platelets.
Clinically, we have learned that the use of blood stem cells has several advantages over the use of bone marrow cells. Transplanted blood stem cells start to produce new white cells and platelets faster than transplanted marrow cells. This is important because transplant patients are susceptible to life-threatening infections and bleeding until their white blood cell and platelet counts return to normal levels. However, blood stem cells contain a much higher number of lymphocytes, a class of immune cells that may recognize the recipient's body as different from the donor's body. This condition is known as graft-versus-host disease. The risk of graft-versus-host disease may increase in patients who are transplanted with blood stem cells. Therefore, the selection of either marrow cells or blood stem cells is carefully considered at the initial stage of transplantation. For patients receiving their own cells in transplant, blood stem cells are most commonly chosen because there is no adverse reaction to one's own body. A great deal of research is currently underway to determine which type of transplant method is best suited for transplants involving young patients, older patients, and patients receiving related or unrelated donor stem cells.
Are there physical conditions that may disqualify me from having a transplant?
Yes, there are physical conditions that may disqualify someone from having a transplant. Certain pre-existing problems could potentially increase the chances of significant toxicity during or after the transplant. Because of this concern, each transplant candidate will have a series of tests done that will help our physicians determine if the patient may move forward towards transplant. In general, these tests involve determining the health of your heart, lungs, kidneys and liver.
How do I know if I have sufficient financial coverage for a stem cell transplant?
We encourage you to contact your insurance carrier. Insurance companies vary in their coverage of transplantation and in their contract with the University of Iowa Health Care. Your case manager at your insurance company should be able to tell you what is covered and whether you can be treated at the University of Iowa Hospitals and Clinics. People who are Iowa residents might also be eligible for benefits from the State of Iowa. We encourage all of our patients to work closely with our social worker and patient coordinator to determine if they have sufficient coverage for transplantation.
How long can I expect to be in the hospital for my transplant?
If your experience is like most people, you will spend four or five weeks in the hospital for your transplant. During the first eight to nine days you are in the hospital, you will undergo radiotherapy and/or chemotherapy to prepare your body for transplant. Your new stem cells will then be infused. The next two weeks are a time of recovery as the new white blood cells begin to grow and circulate in your body. The last one or two weeks are a time of physical recovery as your body gains strength and your new immune system continues to develop.
The exact time for discharge is determined by an adequate white blood count, being able to take some oral medications, being able to ingest adequate amounts of fluid and being able to provide a significant amount of your own care outside of the hospital. Whether you return immediately to home or remain in Iowa City following discharge depends on where you live, the availability of sophisticated medical care and your general medical condition. A valuable general principle we follow in making these determinations is to minimize risk-taking since your life depends on both you and us making the best decisions.
What should I bring with me for my hospital stay?
The word to keep in mind is comfort. Plan to bring comfortable, loose fitting clothing, your favorite comforter, and some personal items like your favorite pictures. You are welcome to bring things that interest you like books, a cassette or CD player and tapes or CD's. You are welcome to bring your personal computer with you. Many people enjoy using the Internet during their hospitalization as a way to stay in touch with family and friends.
My family wants to stay close to me during my hospitalization. Is there a special place for my family to stay?
We understand the importance of being close to a loved one during a hospital stay. The University of Iowa Health Care has a special facility named the Helen K Rossi Volunteer Guest House. The Guest House is a 14-room hospitality house located within the hospital for adult patients and their families. Guests are eligible to stay while the patient is receiving medical treatment at The University of Iowa Hospitals and Clinics.
In general, motels in Iowa City have a special rate for long-term stay for the family. Many motels offer free shuttle service to and from the hospital. Our social worker will be happy to work with you to identify the best arrangements for your family.
What are the first signs that my transplant has been successful?
A noticeable rise in your white blood cell count is the first sign that your new stem cells have taken hold and are beginning to make new blood cells. This usually happens about three weeks after you have received your new stem cells. This is the first sign of engraftment. Your white cell count will continue to rise and we will begin to see a rise in your platelet count.
How long will it take for my immune system to recover?
Once discharged from your initial hospitalization, you will need time at home to continue to regain your strength and to let your immune system mature. The development of your new immune system is a slow process. Most people who are about six months out from an autologous transplant will have regained approximately 50% of the immune power of a normal immune system. Recovery of the immune system for patients who have had an allogeneic transplant may be delayed for 12 - 36 months. People who are required to take medications to control graft versus host disease may continue to be susceptible to infections.
Therefore, during the early phase of recovery, you are vulnerable to infectious complications. You are more susceptible to catching illnesses from other people. We advise you to take special precautions along with several preventive antibiotics during the first six to twelve months following your transplant. We would advise that you not go to places where you may run into large crowds of people. When you are one or more years out from your transplant, your immune system should eventually be able to protect you reasonably well from infections.
How long after transplant can I expect to return to my normal activities?
People who received their own cells in an autologous transplant are usually able to return to work or their normal activities in approximately six months. People who received donor cells in an allogeneic transplant are usually able to return to work or their normal activities in twelve or more months.
After I am discharged from the hospital, I would like to have minor problems that may arise treated at home as much as possible. How do I arrange this?
There are certain circumstances that may be handled at home by well-trained visiting nurses such as daily nutritional fluid, daily antibiotics, dressing changes of the central line on your chest, or blood product transfusion. Simply let our social worker know about your wishes and we will contact your insurance company and home health care agencies to learn if this will be an option for you.
I heard taking drugs that decrease fever such as Tylenol or Advil is not a good thing to do within a year after my transplant. Why?
When you have fever within a year after your transplant, we need to know if your fever is being caused by an infection. A fever is a very important sign from your body letting us know that an infection may be present. Drugs such as Tylenol or Advil may decrease a fever or prevent your body from having a fever even though an infection is present. By not taking these drugs, you are allowing your body to give you the warning signal you need. In fact, the simple presence of a fever may be the only sign of a catastrophic infection in your body. The first thing you need to do if you develop a fever is to contact your physician or transplant physician right away, even if it is in the middle of the night. Our Adult Blood and Marrow Transplant Program always has a physician available 24 hours each day to answer a phone call of this kind.
I had chills after I flushed my central venous catheter. What should I do?
If you develop chills after you flush your central venous catheter, you need to stop flushing your line any further and contact your physician immediately. Developing chills after flushing your line could potentially indicate the presence of a line infection.
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