When can I go home?
Several factors will decide when you may return home safely, including:
When your absolute neutrophil count has been above 500 for at least 3 days in a row. When you don't need platelets more than 3 or 4 times a week. If the in-patient attending physician considers your condition safe for discharge, and if the practical and insurance problems of receiving frequent platelets at home can be solved, you may be able to go home even if you need platelets more frequently. Other factors: When you are able to eat 1,000 calories a day. When you diarrhea is less than 500cc (1 quart) a day. When you have been without a fever for 48 hours. When intravenous (IV) medications have been changed to oral medications and you have no problems with taking oral medications. Occasionally, if you are "medically stable" and on intravenous medications, you can go home if adequate (safe) home care can be arranged. When nausea and vomiting are controlled with the use of oral medication.
What do I need to know before I go home?
The proper technique for changing your Hickman/Groshong dressing. Note that the Ray Marshall Shield is not used after discharge. The proper technique for flushing your Hickman/Groshong catheter. The proper technique for changing caps on your catheter. How to give yourself your medications—how to do it, which drugs you need, what they are for, and what side-effects to look for. Since the drugs that you will take need to be reviewed in the clinic, it would be helpful for the clinic staff if you bring in a written list of your medications. You should receive such a list before discharge. If you will be on Cyclosporine, don't take your morning dose before coming in for clinic visits. You will have blood drawn to check for the blood level of Cyclosporine. Bring the Cyclosporine with you and you will take your dose in the clinic after your blood is drawn.
I have children at home. Does this create a problem for me?
Some considerations if you have children: If your child is still in diapers, do not change diapers. School-age children increase the risk of exposure to certain viruses, so avoid having children visit your home. Call us immediately if children in your home have been exposed to, or develop, chicken pox or measles. If your child is due for any vaccination, discuss this first with your BMT physician.
Can I have animals where I live?
You may have animals where you live, but do not handle litter boxes, birdcage linings, and fish and turtle bowls. Avoid the saliva, urine and feces of animals (no handling of pooper-scoopers). Avoid being bitten or scratched by pets. If you live on a farm, discuss this with the BMT physician prior to going home.
Can I have plants where I live?
Yes, but avoid contact with soil or standing water. This includes digging, re-potting, and emptying water from vases. To avoid contact with bacteria and fungi that are in soil, we also recommend that you avoid going camping. Along the same line, we recommend against chopping, sawing, and handling wood.
Do I need to have my home cleaned before I go home?
A normal state of cleanliness is sufficient. Avoid doing housework until 100 days after transplant. Especially avoid situations that create dust. Have your furnace/air conditioning filter changed before you get home (and regularly after that). Try not to be at home when the filters are changed.
Do I need to be on a special diet after I go home?
The following neutropenic diet is recommended until post-transplant Day 100 (for allogeneic patients) and Day 50 (for autologous patients): No raw fresh vegetables. All cooked (steamed, baked, boiled, broiled) vegetables are allowed. Canned or frozen vegetables are also permitted. No raw fresh fruits except those that can be peeled. (orange, grapefruit, banana, melon, peach, nectarine, apple, pineapple, kiwi, mango, etc.) Wash fruit thoroughly before peeling and again after eating. Other fruits such as grapes, berries, and plums should only be eaten after cooking, not eaten fresh. Canned or frozen fruit is permitted. No fresh shellfish. Canned or frozen shrimp, crab, and lobster are permitted. Fresh fin fish is allowed as long as it is thoroughly cooked. Make sure fish is very fresh and cook soon after purchase. Canned or frozen fish are allowed. Wash hands before food preparation and again after eating. If someone else is cooking for you, ask them to wash their hands, too. Observe sensible food sanitation practices. Keep counters clean, wash lids of containers before opening, store food in closed containers, and cook foods thoroughly. Use a hand can opener, not electric, and wash opener after each use. Wash the tops of soda cans with soap and water before opening. Do not eat in restaurants (because of the need to avoid crowds). Carry-out food is permitted, but exercise caution when bringing it home. Eat food soon after arrival or reheat before eating. Take a multivitamin supplement (no iron) daily. Iron is not recommended for the first few months due to the blood transfusions you received during transplant. After Day 100, iron supplements are allowed; however, we suggest you check with your transplant physician. Concentrate on high protein, nutritious foods. Your body needs replacement of essential nutrients. Don't be discouraged if home- cooked food doesn't taste the same as you remember. Your taste buds have been affected by the chemotherapy. Ask the dietician for specific ideas for your taste changes. Remember that this will slowly return to normal.
What else do I need to do to keep from picking up infections?
Wear a mask. Your physician or nurse can supply specific information. Avoid public places when they are most crowded (for example, go shopping early in the morning and avoid weekends.) Even if these places are not crowded, wear a mask. Avoid close contact with anyone who has a cold or other communicable disease. Do not allow visitors who are sick. Also, avoid children who have been exposed to chickenpox or measles. Remember that hand-washing is the most important thing you can do to prevent catching a cold from someone. Avoid construction sites (because of bacteria and fungi that can become airborne from the soil).
What restrictions are there on my activities?
If you have had an allogeneic transplant or if you have had a transplant using Interleukin-2 (IL-2), then you need to wear sunscreen (SPF 15 or higher) and protective clothing (hat, long sleeves) when outside. Exposure to sun may stimulate or exacerbate graft-vs-host disease (GVHD). We suggest that you do not swim until your Hickman/Groshong catheter is removed. A tub bath is OK as long as you don't soak the catheter insertion site. Showering is preferred, since even though the catheter site gets wet, it is fresh running water. As in the hospital, do your catheter site care immediately after the bath. You will find that it takes quite a while to regain your strength. Plan your activities so that you can slowly increase your strength and endurance.
When can I return to work/school?
Most BMT patients don't feel ready for a full workload for about 6 months following transplantation. When you feel up to it, you can return to work or school gradually, initially for just a few hours a day, progressing to half-days and finally to a full schedule. A number of factors could delay your return, such as the presence and severity of GVHD, susceptibility to infection, the type of work you do (manual labor, teaching, desk work), and your age.
Can I wear contact lenses?
We prefer that you not wear contact lenses until you are cleared by your physician to do so. This is especially important if you have had an allogeneic transplant, since you may have a problem with dry eyes.
When can I resume sexual activity?
Men and women both may notice a temporary decrease in sexual desire after BMT. This is due to a temporary decrease in the production of sex hormones. Fatigue may also affect your sexual relationships. Women may experience physical changes such as infrequent or absent menstrual periods and decreased vaginal secretions. To counter this discomfort, we suggest a water-based lubricant. Although the treatment given during conditioning may have reduced fertility, there is still a chance that pregnancy can result. Use appropriate birth control. We also recommend condoms to prevent the spread of infection. In breast cancer cases, do not use birth control pills or IUDs. As long as your platelet level is above 50,000 and your absolute neutrophil count is above 1,000, you can resume sexual intercourse.
How often will I need to visit the clinic after discharge?
You will need to come to clinic 1-3 times a week for the first few weeks after discharge. On the day of discharge, the discharging physician will tell you when you need to be seen in clinic. Before going home, make your first clinic appointment with the BMT secretary at (603) 650-4628.
What do I need to with regards to my medical insurance?
Contact your insurance company to find out if you need referrals for your outpatient appointments. If your insurance company requires them, ask your primary physician to fax them to (603) 650-7791, or you can hand-deliver them at the time of the appointment. Remember, without a referral, your insurance will not pay for the visit and you will be billed. If you belong to an HMO or PPO: prior to your workup (100-day, 6 month, and annuals), you will need to contact your HMO (primary physician) or your insurance company to verify if the workup can be done at Dartmouth. The HMO or insurance company may want workups done through them or at another facility. If you are required to use your primary physician or another medical center, we will fax or e- mail the work-up to them. Once again, be reminded that if this has not been verified with your insurance prior to the visit, they may not pay and you will be billed.
How long do I need follow-up by the BMT team?
If you have had an autologous transplant and have had no bone marrow transplant- specific problems that need to be followed, you can go back to your referring physician in 50 to 100 days. If you have had an allogeneic transplant and have hand no bone marrow transplant-specific problems that need to be followed, you can go back to your referring physician in about 6 months. However, if you have problems that physicians outside of bone marrow transplant are not used to dealing with, you will need to be followed here longer. Most significant are the issues concerning graft-vs-host disease (GVHD), associated immunosuppressive medications, and the risk of infections.
Generally, we like to follow BMT patients for at least 100 days after transplant.
What is the 100-day workup?
At 100 days after transplant, you will have tests to assess the effectiveness of the transplant and its effect on you. Tests that may be performed on allogeneic transplant patients include: physical exam, skin biopsy, bone marrow biopsy/aspirate, blood drawing and urinalysis. Other tests may include: chest x-ray, pulmonary function tests, eye exam, dental exam with lip biopsy, bone scan, resting RVG (right ventriculogram), audiogram and CAT scan of the chest, abdomen, or pelvis. Once results of all these tests have been reviewed and found to be satisfactory, the Hickman/Groshong catheter can be scheduled to be removed.
What about after 100 days post-transplant?
Even if you have gone back to your referring physician, there are times when you will need additional tests. The tests done at Day 100 are needed to assess the effectiveness of the transplant and its effect on you. Your referring physician can do these tests. Tests are needed at 6 months post-transplant, 1 year post-transplant, and annually thereafter for 5 years. The 6-month visit consists of blood drawing and possibly a bone marrow biopsy (depending on your disease). The 1-year post-transplant and annual visits may consist of: physical exam, bone marrow biopsy/aspirate (autologous patients may not need this), eye exam, dental exam with lip biopsy (autologous patients may not need a lip biopsy), chest x-ray, pulmonary function tests, blood drawing, bone scan, audiogram (patients with breast cancer only), mammogram (patients with breast cancer only), or CAT scan of chest, abdomen, and/or pelvis.
Will my treatment affect any future blood transfusion treatments?
Yes. It is important to understand that any blood products you may receive need to be irradiated prior to transfusion. Therefore, you should wear a medical bracelet or carry a medical alert card at all times which indicate that you have had a bone marrow transplant and should only get irradiated blood products. Your BMT physician can assist you in obtaining this.
What about vaccinations?
At year 1 after transplant, you should get diphtheria, tetanus, and inactivated polio vaccines. Also, hemophilius influenza, the appropriate flu vaccine of the year, and pneumococcal vaccines should be administered. At 2 years after transplant, you should be checked for immunocompetence. That is to say, your titers (level of antibodies) against particular organisms that can cause disease should be checked. Alternatively, you could receive actual immunization and then have your titers checked. If you are immunocompetent (have antibody activity), you should receive vaccines for mumps, measles, and rubella 3 times every 2 to 3 months, as with newborns. Your referring physician will be responsible for these vaccinations.