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Myths and Facts

Eligibility

Myth: Anyone with an upper limb amputation can get a hand/arm transplant.

Fact: Upper limb transplant is a “life-enhancing” procedure with many risks, not a “life-saving” procedure, so transplant teams are very selective about who they approve to be waitlisted for transplant. A hand or upper limb transplant is not an appropriate or effective treatment option for every person who seeks it. There are many factors that transplant teams use to determine eligibility including surgical risk, other treatment options, and other medical conditions. The number of transplants performed is also limited by the availability of organs from deceased donors. Learn more in Who is Eligible

Surgery/Recovery

Myth: Once the hand transplant is done, I will not need any more surgeries.

Fact: Recipients usually have minor cosmetic or function-improving surgeries during the first five years after transplantation. These may include tendon transfers or nerve releases (like carpal tunnel release) to improve hand function or scar revision to improve limb appearance. Routine, scheduled biopsies of the transplant and biopsies to diagnose suspected rejection episodes are also needed. Learn more in Acute and Chronic Rejection


Myth: My arm(s) will work within a few days or weeks after the surgery.

Fact: The hand therapy process can take months and frequently years for a recipient’s arm(s) to work well. That is because it takes time for the nerves to re-grow through the muscles in the new upper limb to the hand. Recovery time can differ between transplant recipients. Learn more in Rehabilitation Process


Myth: I do not need to keep going to hand therapy, because I have already been going there for 6 months.

Fact: The length of therapy is based on how much of the arm was amputated or transplanted. Therapy will take longer for above-elbow transplants than for below-elbow transplants because a greater length of nerve needs to re-grow in the muscles and sensory organs in your hand for above-elbow transplants. Most recipients go to hand therapy for 2-3 years after getting their hand transplant. Learn more in Rehabilitation Process


Myth: I do not need hand therapy to get good function back.

Fact: The amount of functional ability patients get out of their transplanted hand/arm is related to their active participation in and commitment to the hand therapy program. Learn more in Functional Outcomes


Myth: Hand/arm transplantation has few risks.

Fact: There are both short-term, surgical risks and long-term risks involved with follow-up care and maintenance. Risks of the surgery include the risk of death from anesthesia, the risk of infection at the wound site, the risk that the nerves may not regrow, and the transplanted hand may not work as expected. Long-term risks of taking anti-rejection medicine to maintain the transplanted limb include diabetes, kidney disease, and cancer. Learn more in Risks - Surgical and Medical


Myth: I will not have to pay for any part of the hand transplant surgery or medicines.

Fact: Hand/arm transplant procedures are not yet covered by insurance, so the surgery and medicines can be associated with a significant financial cost. Some transplant programs work with their patients’ insurance companies to ask in advance if they will approve coverage of hand/arm transplantation. This is called “pre-authorization.” A 2010 cost calculation based on Medicare fee schedules estimated the transplantation surgery and hospitalization to cost ~ $14,000 and the average total lifetime cost of anti-rejection medicine over 40 years to be ~ $530,000.¹ Learn more in Financial Costs

Anti-Rejection Medicine

Myth: I do not have to take my anti-rejection medicine every day if I feel fine or normal.

Fact: Even though you may feel normal, you still need to take your anti-rejection medicines as prescribed for the rest of your life in order to maintain the transplant. If you do not take your medicines as prescribed, your body will “see” your new hand/upper limb as a foreign invader and will attack it (like it would attack viruses or bacteria) to protect you. Therefore, taking your anti-rejection medicines on time every day keeps your body’s immune system from attacking the new hand/upper limb and helps keep you and your hand/arm healthy. Learn more in Anti-rejection Medicine

Life After Getting a Hand/Arm Transplant

Myth: People will not be able to tell that my transplanted hand(s)/arm(s) came from a donor.

Fact: Transplant teams do their best to match donor upper limbs to the recipient on the basis of sex/gender, skin tone, body size, and hair color, tattoos, among other factors. Transplant candidates can still be offered and accept a donor hand/arm that is surgically compatible but does not visually match their gender or skin tone. The site where the donor’s limb is attached to the recipient’s residual limb will have visible scarring. Some recipients maintain a skin flap at the attachment site which is needed for successful attachment of the limb. Learn more in Risks – Surgical and Medical


Myth: People are always comfortable with accepting the deceased donor hand(s)/arm(s) as part of who they are/themselves/their identity.

Fact: Hand/arm transplant recipients have different emotional reactions to their transplanted hand(s). Many recipients come to feel that the donated hand/arm is their own arm and that they have accepted and adapted well to their hand(s)/arm(s). Others have a harder time feeling like the donated hand(s)/arm(s) are a part of themselves. Learn more in Risks – Psychosocial/Psychological


Myth: Right after the upper limb transplant, I can be independent, live alone, and do activities of daily living without relying on the assistance of caregivers.

Fact: Hand/arm transplant recipients will still need the help of a caregiver for several months and possibly years after their transplant surgery. Having a caregiver can help recipients accomplish day-to-day tasks (e.g., eating, toileting, dressing), drive to follow-up appointments and hand therapy, and keep track of their anti-rejection medicine regimen. Learn more in Lifestyle Changes


Myth: The hand/arm transplant will work like a healthy, congenital hand/arm.

Fact: The hand/arm transplant will not function exactly like your upper limb before your injury or loss. It will take several months, or possibly longer, before a hand/arm transplant recipient can or should attempt more than mild physical activities with their new hand(s) or upper limb(s). With time and rehabilitation, recipients have been able to do activities such as feeding themselves, driving, doing yardwork, exercising, and returning to work. Learn more in Lifestyle Changes


Myth: I do not have to be careful about how I move my new hand and arm. It is okay if I get scratched, play rough with pets, or do gardening.

Fact: Hand transplant recipients can use their hands as any other person would. However, recipients need to be careful not to injure themselves. Even small scratches and blunt trauma to the arm can trigger a rejection episode. When you take anti-rejection medicines, you are more likely to get an infection than people who are not taking anti-rejection medicines. Learn more in Lifestyle Changes


Myth: I will not have to wear sunscreen after the upper limb transplant because I never had to do so before.

Fact: It is even more important for hand/arm transplant recipients to protect their skin from sunburns. People who take anti-rejection medicines have even higher chances of getting skin cancer than people who do not take anti-rejection medicines. So, it is essential to cover your skin, wear a hat, wear sunscreen, and stay in the shade when outside, even on cloudy days. In addition, sunburns can cause organ rejection episodes, which may require more anti-rejection medicine to treat the rejection episode. Learn more in Lifestyle Changes


Myth: I can eat whatever I want after my hand/arm transplant.

Fact: After your hand/arm transplant, you will work with a dietitian to create a healthy-eating plan. Maintaining a healthy diet is important for recovery and to prevent infection. Learn more in Lifestyle Changes


Myth: It will be fine if I drink alcohol after my hand/arm transplant.

Fact: After the transplant, alcohol in moderation, such as a glass of wine or beer with a meal, may be okay depending on the patient, and when coordinated with your doctor. Anti-rejection medicines do not work as well when patients drink alcohol. Learn more in Lifestyle Changes


Myth: Getting a hand/arm transplant will solve all of my problems related to my amputation.

Fact: A hand/arm transplant can be a life-enhancing procedure. However, it will not solve or prevent all problems, whether physical, mental, emotional, or social, from affecting a person’s life. It is critical that recipients seek regular care from their transplant team to address their medical and mental health issues. Learn more in Potential Benefits

 

References

Sources

  1. Chung KC, Oda T, Saddawi-Konefka D, Shauver MJ. An economic analysis of hand transplantation in the United States. Plast Reconstr Surg. 2010;125(2):589-598.