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6 days ago · 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

6 days ago · Specific Information about COVID-19 for Transplant Patients in Transplant

As COVID-19 spreads across the country, we know that this time is more stressful for transplant recipients than others. After all, your transplant centers have been telling you for years that you are at a higher risk for illness and infection and you should avoid contact with anyone who is ill. Now the entire world is learning what you’ve already become an expert at doing – social distancing. At every Mayo Clinic we have staff working around the clock to help stop the spread and to treat those who’ve become ill. We will continue to do everything we can for our patients and for those around the world that need our expertise and resources.03-26-20 COVID19 Post

As you can imagine, our inboxes and phone lines are filling every day with our patients wondering how to stay safe. Mayo Clinic’s providers, even those in transplant, are following CDC guidelines for protections for our patients. This article, posted on the Mayo Clinic web page, can help you learn and share the correct information for patients who are at high risk at this time. Some of the bullet points from this article are:

  • Take precautions to keep space between yourself and others.
  • Make sure you have enough supplies.
  • Have a plan in case you get sick or your caregiver gets sick.

Details about these topics and more can be found on our web page. Other trusted sources of information include:

Mayo Clinic COVID-19 Q&A Podcast with Dr. Gregory Poland

Mayo Clinic Appointment Guidance during COVID-19

COVID-19 News and Resources – Mayo Clinic News Network

CDC Coronavirus (COVID-19) Web Page

Mayo Clinic’s priority right now is the health of you and your family. The changes we and other hospitals are making are temporary to protect our patients and our staff so that we can continue to offer the best care. We hope that you understand the changes happening around you, and we want you to know that you can look to us for guidance in the coming weeks.

If you have any specific tips for others during this time about how to stay busy and content at home, please share below!

Thu, Feb 27 12:58pm · New Transplant Blog Posts in Transplants

Who has stayed in one of the transplant hospitality houses during their transplant journey? What did you find most comforting about your stay? Transplant houses can provide patients with a unique housing option that a hotel can't provide – staying with patients who are going through a similar journey to yours. They can also provide a sparking clean environment that's important for patients after transplant. Learn more about the other conveniences of this option for housing when you need to visit your transplant center.

https://mayocl.in/388g7T8

Tue, Feb 25 8:56am · Are you one of the 20,000 transplants performed at Mayo Rochester? in Transplants

@seahorstmayo and everyone – if you were transplanted prior to February 10, 2020, you WERE one of the 20,000!

Wed, Jan 22 8:58am · Transplant Caregiver Advice: Got Tips to Share? in Transplants

@gingerw and others, thank you so much for having this great discussion. I am hopeful that everyone is learning from each other about how to navigate the caregiver role. As a transplant care team, we try to provide the information as best we can, but as you all know, going through it gives you a much higher level of expertise than we could ever have. That said, we wanted to collate some of your discussion information into a blog post with the hopes that even more people would benefit from your knowledge. We were able to post that info yesterday, and we hope that you will all read and comment about other things that you've experienced in your caregiver role. Thanks!

https://mayocl.in/38qVNwM

Wed, Jan 22 8:54am · New Transplant Blog Posts in Transplants

Recently, our Transplant Discussion Group has been actively talking about caregivers and the struggles they face. They are on the search for reliable, trusted, and most importantly HONEST information about what it's like to be a caregiver. We are trying to help with our blog post yesterday "What to Expect as a Transplant Caregiver". We hope that we hit on some of the topics that will better prepare you for your role as care taker for your loved one. Let us know the other struggles you have had in this important job.

https://mayocl.in/38qVNwM

Tue, Jan 21 12:30pm · What to Expect as a Transplant Caregiver in Transplant

A caregiver can be many things. For transplant patients, the caregiver can be the difference between a successful transplant and a failed organ. Most transplant centers require patients to have a caregiver at all times throughout the process both pre- and post-transplant. Most centers also provide helpful tips and even printed education materials so caregivers know what to expect.2020-01-21 Caregiver Blog

Our discussion group members consist of patients, donors, caregivers or loved ones. Recently, they talked about the role of caregivers and some of the things that they didn’t expect to happen when they took on that role.

Here is a list of 5 things that didn’t always go according to the pre-printed plan of what to expect.

Not enough time in the day.

In a perfect world, we would have time to care for our loved one, work outside the home, care for our children, clean, do the shopping, exercise, and cook healthy meals. Every doctor and transplant team member will tell you to remember to care for yourself so you can be there for others. But how can you fit it all in? The honest answer – sometimes you won’t.

You have to try to be ok with letting stuff go. Don’t clean the house every week like you used to, do it every other week. Grocery shop online while you are waiting for appointments with your loved one and pick it up on the way home. Maybe it’s time to try one of those healthy meal delivery services so you don’t have to cook a couple nights a week. You could have the pharmacy deliver medications if that’s an option in your area.

Most importantly, don’t be afraid to ask for help. This is very hard for some of us, but it’s often necessary when you are trying to do more than is physically possible. People are willing to help, but sometimes they need to be asked. Don’t be afraid to reach out to other family and friends to see if they have any spare time or resources to assist you or the patient.

Know the worst case scenario – even if you never have to experience it.

Transplant is successful most of the time, and patients go on to recover and live a great life. But not everything goes our way 100% of the time. There are ups and downs to recovery from major surgery. Not everyone gets better overnight and not every patient fits the mold that the doctors hope they will fit. People change, diseases relapse, the unexpected happens, and we need to be prepared.

After learning what great things can come from a transplant and how recovery should go (and probably will) ask your transplant team about the worst case scenario. Sometimes our loved ones aren’t happy with their outcome. How will this affect you if the person you are caring for is negative and wish they never would have gotten this new organ? Sometimes patients go through depression – they can’t do what they thought they could and are recovering slowly, or they are sad that someone had to die to give them their new chance at life.

All of these are rare circumstances, but they are possible, and you should be prepared for a less than optimal outcome after transplant. Knowing what could come is the first step in learning what to do to help.

Don’t assume the patient needs you 24/7.

We have all experienced someone who tries to help too much. Remember the last time you just wanted to be alone? Patients who are doing well after transplant may not want you around all the time. Have honest conversations with your recipient so you understand how much help they want from you. Don’t assume they need you all day every day, because you might be doing more work and causing more stress than you or the patient needs.

When you are healthy and active, it can be frustrating when the recipient is not.

Especially in situations when the caregiver is also the spouse, it can be frustrating for both people when there is a difference in activity level. If you as a caregiver want to go for a run, but the recipient isn’t able to even take a long walk, both of you can be frustrated. Don’t give up on your plans. This situation can be helped by the bullet above – don’t assume the patient needs you 24/7. Most of the time, you could go for your run and take a short walk with the patient when you return. Or find an activity that both of you can do together. Most physicians want transplant recipients to be active when they can, so this plan can benefit you both.

Consult your transplant center for help ANY TIME.

Transplant teams have nurses and social workers who want to assist you with caregiving challenges. Don’t let the job of caring for a loved one become a burden because they don’t fit the mold of a model patient. Contact your patient’s care team for assistance, advice, or to share changes in the patient’s recovery. Some of the changes in personality, ambition, or abilities might be related to their medication or their organ transplant and should be discussed with their care team. At the transplant center, we also care deeply about the caregivers. We want our patients to do well, and we want their friends and family to be able to assist them without transplant being a burden on their lives. Reach out and get help when you need it.

Finally, we want to thank the patients and caregivers. Without feedback from our discussion group, our patients and their families, we wouldn’t be able to provide the education and help our patients need. Thank you especially to our discussion group. We don’t know if they know it, but they help many more people than they realized each day. If you haven’t already, be sure to take a look at the discussions and participate if you can. You won’t regret it and may even be able to help others understand transplant and recovery better.

If you are a caregiver, were you given enough of the “real” information about what to expect?

HELPFUL LINKS

Dec 10, 2019 · New Transplant Blog Posts in Transplants

Hello from the frozen tundra that is Minnesota today! I wish we had a warmer blog topic for you such as hot cocoa or fireplaces, but instead, today's topic is about education! Even before we started Mayo Clinic Connect for transplant patients, we have been working to educate transplant patients and caregivers through various efforts. In today's blog, you can review some of those educational resources and learn how to easily share that educational information with your friends, family and followers. Maybe you can read and learn with a cup of hot cocoa in your hand and a warmth in your heart!
Stay safe, friends!
-Kristin

https://mayocl.in/2YBtZCd