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Tue, Jun 30 12:30pm · Immunosuppression: Watching For and Managing Side Effects in Transplant

Following transplant, you will need to take medications to prevent your body from attacking/ rejecting your new organ(s). These medications are called immunosuppressants. You will likely be on a combination of these medications as each of the medications work in different areas of the immune system. The reason for using medications that work in different areas is to allow for lower doses of each medication to be used in order to 03-2020 Immunosuppression bloglower your risk for side effects that can be associated with these medications. Even though we take initial steps to lower this risk, side effects can still occur with these medications. In this blog post, we will tell you what to look for and what to do if you start to experience side effects from your immunosuppressant medications.

Most immunosuppressant regimens will contain a type of medication called a calcinuerin inhibitor. Common names of medications in this group include:

  1. tacrolimus (Prograf®, Astagraf XL®, and Envarsus XR®)
  2. cyclosporine (Sandimmune®, Neoral® , and Gengraf®.)

Sometimes side effects from these medications are a result of an elevated blood level.

Side effects that can be associated with tacrolimus based products include:

  • Shakiness/tremors
  • Diarrhea
  • High blood sugar levels
  • Headaches
  • Sinus congestion
  • High potassium
  • Hair thinning or loss
  • High blood pressure
  • Kidney problems

Side effects that can be associated with cyclosporine based products include:

  • Shakiness/tremors
  • Gum thickening
  • Headaches
  • High blood pressure
  • High potassium
  • Leg cramps
  • Kidney or liver problems
  • Extra hair growth
  • Nausea
  • High blood sugar levels
  • Increased triglycerides or cholesterol

Most immunosuppressant regimens will also contain a type of medication called an anti-proliferative agent. Common names of medications in this group include: CellCept® (mycophenolate mofetil), Myfortic® (mycophenolate sodium), and Imuran® (azathioprine).

Side effects that can be associated with mycophenolate based products include:

  • Diarrhea
  • Higher risk of infection due to lower white cell counts
  • Increased risk for birth defects if you become pregnant while taking or handling this medication
  • Cold sores or open sores in your mouth or on your lips
  • Low red blood cell counts or anemia
  • Low platelet counts
  • Unusual tiredness
  • Malignancy (specifically skin cancers)

Side effects that can be associated with azathioprine include:

  • Malignancy (specifically skin cancers)
  • Liver problems
  • Low red blood cell counts or anemia
  • Low platelet counts
  • Higher risk of infection due to lower white blood cell counts

Most immunosuppressant regimen will include a type of medication called a corticosteroid. How long you might need this particular type of medication will depend on the reason you needed a transplant, your risk for organ rejection, and the type of organ you receive. The most common medication in this category is called prednisone.

Side effects that can be associated with prednisone include:

  • Decreased appetite
  • Weight gain
  • Indigestion
  • Thin, shiny skin
  • Rounding of your face
  • Higher risk for infection
  • Swelling in your legs
  • Acne
  • Bone injury or osteonecrosis
  • Changes in mood
  • Sleeping problems
  • Muscle cramps, pain or weakness
  • Bone thinning or osteoporosis
  • High blood sugar levels
  • Cataracts
  • High blood pressure

In some instances, other categories of immunosuppressant medications will be utilized in place of or in combination with the previous categories that we described. One of these categories is called mTor inhibitors. Common names of medications in this category include: Rapamune® (sirolimus) and Zortress® (everolimus).

Side effects that can be associated with this category of medication include:

  • Longer time for wounds to heal
  • Swelling in your legs
  • Fever
  • Foamy urine
  • Mouth sores
  • Low red blood cell counts or anemia
  • Skin rash
  • Increased triglycerides or cholesterol
  • Diarrhea
  • Lung problems

In kidney transplant, an alternative to the use of calcineurin inhibitors is a medication called Nulojix® (belatacept). This medication is a monthly intravenous infusion.

Side effects that can be associated with this medication include:

  • Swelling in your legs
  • Higher risk of infection due to lower white blood cell counts
  • High blood pressure
  • Low red blood cell counts or anemia
  • Post-transplant lymphoproliferative disorder (lymphoma)
  • Headaches

In order to decrease your risk for these side effects, it is important to take your medications exactly as you are told. They should be taken at the same time and in the same way every day. For example, with some medications, it does not matter if you take them with food or not. It does matter if you are consistent with whether or not you take your medications with or without food. You should pick one way and do it that way every day. In some instances, the amount of medication you are taking can affect your risk of having side effects. To make sure you get the right amount of medication, your immunosuppressant medication levels and other laboratory values are checked with blood tests. For the blood test results to be accurate, you need to take the medications at the right time. If you are unsure of the correct time, you should contact your nurse transplant coordinator or transplant pharmacist. Getting your blood tests drawn as recommended may help to prevent some side effects.

Some medications and foods may change how immunosuppressant drugs work. Before you use any other medications, talk to your nurse transplant coordinator or transplant pharmacist so they can make sure the new medication is safe to use with your transplant medications. You should do this for both prescription and over-the-counter medications. Over-the-counter medications would include vitamins, supplements, and herbal products. Some common foods and beverages that may affect how your body uses your immunosuppressant drugs include grapefruit or grapefruit juice, sodas with grapefruit juice in them (ie. Squirt, Fresca, or Sundrop), Pomegranate and pomegranate juice (ie. Pom), Seville oranges, also called Spanish, sour or bitter oranges, and more than 6 clementines per day. These foods should be avoided if you are taking a tacrolimus or cyclosporine product , sirolimus, or everolimus.

In the event that you do develop a side effect that is particularly bothersome to you and is affecting your daily activities, talk to your transplant physician, your nurse transplant coordinator, or transplant pharmacist about the best way to deal with the side effect. Some side effects of immunosuppressants can be treated by changing to an alternative medication or with the addition of a new medication. An example of this would be treating high blood pressure with a blood pressure lowering medication.

Some side effects may last only a short time and be mild. Others may last a long time and be more serious. Some ways you can protect yourself from long term side effects include keeping your bones healthy, caring for your teeth and gums, and protecting yourself from the sun.

For more information or questions about your particular side effects, please contact your transplant team.

We know this post was long with a lot of important information to learn. What advice to others do you have about transplant medications?

HELPFUL LINKS

 

Fri, Jun 19 10:56am · New Transplant Blog Posts in Transplants

Happy Friday to all!
Today's blog post is something we are asked about frequently at Mayo Clinic. If I have a relative who is in critical condition in the hospital in need of a liver transplant, can I be their living donor? Today's blog post addresses the appropriate situations for living donor liver transplant. As health care teams, we want to do what's best for our patients and the living donors who so graciously agree to give the gift of life. We hope this blog post offers some explanation about when living donation is appropriate and when a deceased donor is the best option. Have a wonderful weekend!

https://mayocl.in/2V2q7tD

Fri, Jun 19 10:45am · Living Donor Liver Transplant: Is it Appropriate for Patients in Critical Need? in Transplant

Living donor liver transplant offers some patients a speedier alternative to waiting for a deceased donor liver. Patients generally have a shorter waiting period and experience fewer health complications if a living donor option exists. You and your medical team are able to select the ideal timing of your surgery. If your situation is urgent, however, a living donor liver transplant might not be the best option for you.06-16-20 Living Donor Liver Tx Blog Post

Each patient is different, so you will need to meet with your medical team to determine if living donor transplant is best for you, but here are some general ideas about who should and should not pursue living donor liver transplantation:

Urgent Cases

In cases where a transplant is needed urgently, the patient is very sick and may not live more than a few days without transplant. This urgency also may not give the care team or the potential living donor enough time to evaluate and fully consider the situation prior to donation. Becoming a living donor is a big commitment in a person’s life. The donor needs time to thoughtfully consider their situation and the surgery to be sure donation is the right choice for them. Urgent cases may not provide enough time for all of these necessary steps to occur. Luckily, these urgent patients are given a priority to receive deceased donor livers.

High MELD Scores  

Patients with high MELD scores, for example in the 30s or 40s, are more likely to get a deceased donor liver transplant than patients with lower scores. These patients’ scores are high because they are very sick, and this situation requires careful discussion with the care team to decide if living donor transplant is optimal. In addition, with a very sick patient, sometimes the need for a whole liver, and not a partial liver, is more important because the patients are less likely to be able to tolerate the time period for liver regeneration.

Sick Patients with Lower MELD Scores

While the MELD score is used to identify patients who are sick and need a transplant sooner, they sometimes don’t accurately reflect the patient’s need for a liver transplant. Examples include patients needing frequent tap or removal of ascites fluid or patients with frequent hospital admissions for confusion. These complications often do not raise the MELD score but still depict a greater need for transplant. Another example of patients who may benefit greatly from living donor transplant are those who have liver cancer or cancer in their bile duct. They may have a long wait for a deceased donor liver. These patients would benefit from a living donor transplant, because they would be able to receive their transplant before their tumors grow, and before they become too sick for transplant surgery.

Alcoholic Liver Disease Patients

Most transplant centers, including Mayo Clinic, require patients to be alcohol free prior to being placed on the transplant waiting list and prior to living donor surgery. Most patients are also required to attend alcohol treatment and AA. Once patients are able to complete these recommendations, they may be eligible for either deceased or living donor transplant. In the cases of hospitalized or urgent patients, as we said above, living donor transplant with a partial liver may not be the best option for them.

It’s important to remember that living donor liver transplant is putting a healthy person at risk with a major surgery. Donors go through a complete health evaluation, and they need to have time to think about their donation to be sure it is something they can and want to pursue. The doctors and care teams also need time to thoroughly evaluate both the donors and the recipients to be sure they are both safe enough to recover from surgery. For these and the reasons above, living donor liver transplant is not typically performed in urgent situations, but it can be a great option for those who have average MELD scores and are in need of a liver transplant to improve their quality of life.

Did you have living donor liver transplant surgery? Tell us about your experience with the process in the comments below.

HELPFUL LINKS

Wed, May 20 8:55am · Transplant Team or Local Provider: Who Do I Call for Medical Advice? in Transplant

@danab and @contentandwell – you both hit the nail on the head. The mutual respect that transplant teams have with local doctors is so important. Your local providers tend to know you best because they've been with you for the long term, and our transplant providers rely on that knowledge to do what's best for you from a transplant perspective. Also, this post is not meant to limit the reasons why you should contact your transplant team. If you think you should call, then call (or message through the online services). Our team is here for you 24/7. This post was just meant to help guide you in those decisions when you might be stressed or ill and not really know what to do. I hope it helps!

Tue, May 19 10:05am · New Transplant Blog Posts in Transplants

Good morning everyone! Today's blog post might be helpful for you – especially if you've recently had a transplant and aren't sure about your recovery process just yet. Today we talk about who to call when you need to talk to someone. Most transplant centers want to follow their patients, at least for a few years after transplant. At Mayo Clinic, once a patient – always a patient. But who should you call when you have an issue? What does your transplant center need to know about? If you have a minor issue, do you need to call multiple doctors? Read more about who to contact when you need medical advice. As always, if you have a medical emergency, please call 911.
Have a wonderful week!

https://mayocl.in/3fXlt8W

Tue, May 19 10:00am · Transplant Team or Local Provider: Who Do I Call for Medical Advice? in Transplant

Once you embark on the transplant journey, you will find yourself intricately connected to your transplant team. From pre-transplant visits to yearly follow-ups after transplant, you might feel like you see your transplant care team more than you see your extended family. At many transplant centers including programs at Mayo Clinic, after receiving your organ you continue your relationship with them for life. However, that lifelong relationship doesn’t mean you shouldn’t have other people on your team who can care for you when you don’t necessarily need your transplant team.Local vs transplant doc blog

Having a local doctor who can care for your general health before and after transplant is typically required. Whether you choose a specialist or a family practitioner, your home provider can work with your transplant team to coordinate your care.

When you have a medical issue, who do you contact – your transplant team or your local provider? Here are some general tips regarding who to call when you have an issue or question about your medical situation. If your transplant center has given you information that differs from this list, you should follow their recommendations.  In all cases if you have a medical emergency, you should call 911 or go to your local emergency room.

Medications

Immunosuppressive medications need to be taken consistently and correctly. If you miss a dose of your immunosuppressive medication, contact your transplant center team for instructions.

Transplant medications can be expensive. If you are unable to obtain your medications due to cost or pharmacy issues, be sure to contact your transplant care team.

Whether a new medication is prescribed by your local doctor or you obtain it over the counter, you should contact your transplant team prior to taking anything new. Some medications are safe to use with your transplant medications but some may not be safe.  Your local provider should be able to manage all of your non-transplant medications, but if you have questions about a certain medication, contact your transplant pharmacist.

Symptoms of Illness

If you are feeling ill or having symptoms of illness, contact your local doctor. Common cold symptoms, minor aches/pains, minor injuries, and other common symptoms should be able to be addressed locally. Your local provider can collaborate with your transplant team  to ensure that the course of action suggested is safe for your transplanted organ. After you visit the local provider, notifying your transplant team is important.

If you are diagnosed with any form of infection (urinary, bladder, pneumonia, etc.) or have been recently hospitalized please contact your transplant nurse coordinator.  It is also important to report any changes made to your immunosuppressant medications by your local provider.  Reporting any malignancies such as cancer to your transplant team is important as well.

In any emergency situation, you should call 911 or go to your local emergency room.

Life Changes

If you have changes in your life that might affect the care of your organ, you should let your transplant care team know. These might include a change in your insurance coverage, changes in your employment, recent hospitalizations, accidents, or diagnosis of a new disease or illness. To provide you with the best transplant care, your transplant team relies on a collaborative relationship with you as the patient and your primary provider.

Remember, if you have questions specific to your personal situation, it’s always best to contact the transplant team caring for you.

What have you done to help keep your doctors updated on changes to your condition?

HELPFUL LINKS

Wed, Apr 15 8:47am · Transplant Events in Transplants

Cancellation Notice:
Hello everyone, I hope everyone is safe and healthy on this beautiful Wednesday morning which, in any other year, would be Tax Day! Today we have some unfortunate news for those who attend our yearly picnic in Rochester. Due to the uncertain situation of COVID-19, the Transplant Center Patient and Donor Family Picnic to be held in Rochester, Minnesota, has been cancelled. The picnic is an annual event that was to be held on July 26. Our primary obligation is to the safety of our patients and their families, and we hope to see you again in summer of 2021!
Please share this post to anyone who may need to know, and stay home and stay safe in the coming weeks!
All my best,
Kristin

Thu, Mar 26 2:12pm · New Transplant Blog Posts in Transplants

In today's blog post, we have given you resources about COVID-19 specific to transplant patients. We know there are many resources out there, and we want to be sure you have the most trusted and up-to-date information. If you find yourself with questions, consult these sources, or contact your transplant care team for information specific to your situation. Take care and stay safe!

https://mayocl.in/3bpWmIX