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Post-transplant life is different for everyone. The most noticeable difference is with healthy blood flow your skin color will look and you will feel better than you had before! Although post-surgery recovery is long, and it takes time to get your energy back, we often hear "wow, I did not realize how sick/low energy I was."
In addition to the cocktail of medication you will be taking, you do need to be aware of how being immune compromised effects your daily life. For example, your body will not naturally fight skin cancers like it would with a robust immune system. Sunscreen becomes a daily ritual and annual trips to the dermatologist get added to your to-do list. You should not scoop animal poop (lucky you) or clean a fish tank. When kids are sick at home, you do not need to move out, just keep a common sense approached to your health and report any sign of illness or infection to your nurse coordinator. As with all content on the web, please talk to your doctors directly with any questions. This recap is to show you that some random things factor in, but for the most part you are "normal."
Tell me more about being immune compromised. Will I take meds the rest of my life?
Yes. The medications keep you from rejecting your new heart and keep you alive. In additions to immune suppressants, you will take other medications to help counteract the side effects of the immune suppressants. Ironic, we know.
Will my physical activities be limited?
The general rule is "listen to your body." For the most part, you can do anything when you are recovered. We have transplant recipients that compete in ski competitions, run marathons and skydive. It's probably best to talk to the doctor before you climb Kilimanjaro to understand if altitude will affect you or before you go for a deep sea dive.
OK, what about sex? When and any limitations?
Resumption of sexual relations for both men and women is fully possible and expected after heart transplantation. Practices and positions that put stress on the sternotomy wound should be avoided until three months post-transplant for the same reasons that lifting heavy weights and swimming with overhand strokes should be avoided. After three months the sternum is generally considered to be completely healed or "knit" and can withstand normal stresses.
The usual precautions regarding "safe sex" are even more important to the immunosuppressed patient than to others. A full discussion of such precautions is beyond the scope of this column, but specific questions can be discussed with the doctors or nurses in the transplant clinic.
The short answer is "yes." Neither the transplant procedure itself nor the drugs needed postoperatively impair fertility for either men or women. We advise women to delay childbearing until after the first postoperative year, when their health status is generally quite stable. Pregnancy should be planned and managed by a team including experienced high risk obstetricians working with transplant cardiologists since drug dosages and rejection surveillance will need to be coordinated. Drug levels can change during pregnancy and will need to be monitored closely and kept in the therapeutic range. There is no track record of the drugs commonly used causing babies to be abnormal. The one exception to this rule is mycophenolate (Cellecpt), which is the newest drug and has less experience behind it as well as some hints about abnormalities in babies of mothers taking it. This drug will usually be replaced with an alternative one prior to commencing pregnancy.
Babies of women with transplants are often a few weeks premature and somewhat small for their gestational age, but grow and develop normally.
As above, fertility is not impaired in men having transplants. Also, there is no known increase in abnormalities in the children they father.
The methods for contraception available to men and women who have transplants are the same as those used by anyone. The exception is the use of intrauterine devices (IUD's) in women, where the risk of infection with an indwelling device can be significant.
Can I swim in a public pool?
Yes! You can do most anything if you are aware of your surroundings and mindful of situations where being immune compromised can put you at risk. As in, don't jump into a pool that has not been cared for.
Can I eat sushi?
The answer is no on the sushi, unless it's cooked or smoked. They can have crab and shrimp, as these are cooked. Something like smoked salmon would be OK too, and they could have any tempura or veggie rolls. Please refer to the USDA Food Safety for Transplant Patients booklet.
Can I drink alcohol?
In general, as we look at the fact there is little benefit associated with alcohol consumption (except the taste) to override the potential detrimental effects. In general drinking after transplantation is not advisable. If you feel that you need a drink to assist with psychological or medical issues (like to help you relax, or help you go to sleep) it would be better if you discuss these concerns with your transplant team, as these could be early warning signs of other, more serious, medical or psychological issues
Can I travel internationally?
Yes to most places, but talk to your doctor before going to the far corners of the earth. For example, consider what vaccinations you need to take to go to parts of Africa or Mexico. Think about how far you'll be from a 21st century hospital and your health insurance. Most tourist destinations and overseas business trips are fine. It is when you get into remote places and encounter hepatitis, malaria and other diseases that we would be concerned.
What can I do to keep my new heart healthy?
There are some things you can do to help your new heart stay healthy. 1) Be a good patient. Know your medications. Ask questions until you understand. Follow the doctor's orders. 2) Follow a "heart healthy" diet. That means eat fresh foods; limit your saturated fats and sodium. This translates to actually following the basic diet guidelines set out by the Food and Drug Administration. A Heart Healthy diet may feel like a subtle change to you or a radical food makeover. Either way, please do it. 3) Exercise. Post-transplant life needs to have an exercise plan in it. Your new heart stays healthy by staying in shape!
Will I take on memories or traits from my donor?
No; not according to the most current available scientific research.
What can I find out about my donor? Can I contact the family?
Many transplant recipients want to know more about their donor and may want to express gratitude for the donation of their new heart. A protocol for contacting your donor's family has been created in order to protect each party's safety and privacy. Respect for the privacy of your donor's family also impacts the ability of medical personnel to provide details about your donor. To give everyone some time to adjust, we recommend waiting six months to a year before contacting your donor family through a letter.
When you finish writing your first letter you will give that letter to your heart transplant social worker who will review it and send it on to the Organ Procurement Organization (OPO). The OPO will then make your letter available to your donor's family.
How long will my loved one live after transplantation?
In the medical transplant world we call it survival, and it is measured in several different ways, it is compared to national outcomes and transplant site to site outcomes, and it is carefully watched on a local, state and national level.
It is a very sensitive question. The reality is that we really don’t know how long and individual will live, but based on PAST patients we have a pretty good idea.Factors, such as age and how sick one is going into the transplant, plays a big role.
Keep in mind that for a patient to be listed as a candidate the physician has determined that ALL medical and surgical options have been exhausted.
In general, 85 percent to 90 percent of patients survive past one year and 80 percent survive three years. Many patients at Stanford have survived more than 20 years.
What's the wait time?
The actual time on the transplant team is determined by many factors, including the patient's medical condition, specific patient characteristics, and listing center.
Do I have to take medications for the rest of my life?
Yes, you will have to take several medications for the rest of your life. Importantly, the immunosuppressant's that prevent the rejection of your heart must be taken exactly as prescribed. There are several other medications that are needed to prevent infections, treat high blood pressure and keep healthy cholesterol level, in addition: vitamin and mineral supplement are important
How many adult transplants do you (Stanford) do a year?
About 40 per year.
Where does my caregiver sleep? Is there a bed in the hospital room?
Stanford does all it can to enable your loved ones to be with you when you are in the hospital.
Currently, many of our hospital rooms are singles and a caregiver can sleep on a rollaway cot or chair. Having a loved one stay with you through the night is harder to accommodate in shared patient rooms, but waiting rooms are plentiful.