This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all – a new life! We don’t always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say ‘Hi’. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants group.

@rosemarya

Lori, in the preCovid time, I did not need to wear a mask for protection because the liver is not exposed to air as is the heart or lungs. During flu season, I was able to avoid gatherings or just stay home when flu was active in my area. I have seen lung or heart transplant patients at my local lab with masks and they have always been surprised by that.

I suppose that you don’t know whether you will need a mask with your bone marrow transplant in the nonCovid times.

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Hi Rosemary, interesting! I didn’t realize the difference between your liver/kidney transplant and lung/heart! Well, ok, besides the obvious that they’re different organs. But that you didn’t need to wear a mask before Covid. That’s awesome. So yup, you probably don’t have to worry about the same things. That would be a good question for @danab with his heart transplant and if he needed a mask before covid.

With a bone marrow transplant, my entire immune system has been replaced with someone else’s. I’m on tacrolimus to keep my new and very aggressive immune system suppressed until my body and the new cells learn to play nice and also 2 antibiotics, antifungal and antiviral meds daily. When I’m finally off tacro and finished with all my childhood/adult vaccinations I should be able to be liberated from pills and masks! But for now I have to wear a mask and did so for a over a year before Covid hit. Doesn’t bother me at all. ☺️

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Hi, This is my first comment in a MAYO connect group. I hope it's well enough matched to the topic. Here goes…I have surpassed my 30 year kidney transplant anniversary. An amazing milestone for me. Last month I called a meeting with my care team to discuss how to better fine-tune and manage transplant medications to take into account my whole body health for the next 30 years. Long story short, the side effects from long term (3 decades) prednisone use are at the forefront of many of my health setbacks. Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? My care team is working with me to gradually taper off prednisone completely. It sure would be assuring to know if anyone has gone before me on such an endeavor. Will my body really learn to make cortisone on it's own again? Thank you for reading my post. I really appreciate it!

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@looperdolly

Hi, This is my first comment in a MAYO connect group. I hope it's well enough matched to the topic. Here goes…I have surpassed my 30 year kidney transplant anniversary. An amazing milestone for me. Last month I called a meeting with my care team to discuss how to better fine-tune and manage transplant medications to take into account my whole body health for the next 30 years. Long story short, the side effects from long term (3 decades) prednisone use are at the forefront of many of my health setbacks. Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? My care team is working with me to gradually taper off prednisone completely. It sure would be assuring to know if anyone has gone before me on such an endeavor. Will my body really learn to make cortisone on it's own again? Thank you for reading my post. I really appreciate it!

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@looperdolly, Welcome to Mayo Connect. Congratulations on 30 years with your kidney transplant. Anniversaries are special! 30 years is an amazing milestone. I want to hear about your story, but let's take care of prednisone first.
I am not aware of any of our current transplant members who have mentioned a long term usage such as you describe. I want to invite you to post your question as a new discussion in our transplant group: "Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? " That way others will see it more easily. I can help you. Just let me know!

I am 12 years with liver and kidney transplant. I took prednisone for 5 years (5 mg daily) and then research showed that I could taper off. I know that 5 years does not compare to your long term prednisone, but I want to add that it was challenging for me to do as the aches and pains, headaches, moods etc were bothersome. My Mayo transplant team suggested a taper, and my local PCP worked with me when I had to adjust the taper. I also discovered that the prednisone had been covering my exercise induced/allergy induced asthma and so that involved a temporary halt to the taper.

Here is a discussion where other members on Connect are talking about prednisone. As a member, you can join in anywhere.
Groups >Polymyalgia Rheumatica (PMR) >Tapering off of Prednisone
https://connect.mayoclinic.org/discussion/prednisone/
Here is some information you might find helpful as you get started:
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
https://www.webmd.com/drug-medication/prednisone-taper

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@rosemarya

@looperdolly, Welcome to Mayo Connect. Congratulations on 30 years with your kidney transplant. Anniversaries are special! 30 years is an amazing milestone. I want to hear about your story, but let's take care of prednisone first.
I am not aware of any of our current transplant members who have mentioned a long term usage such as you describe. I want to invite you to post your question as a new discussion in our transplant group: "Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? " That way others will see it more easily. I can help you. Just let me know!

I am 12 years with liver and kidney transplant. I took prednisone for 5 years (5 mg daily) and then research showed that I could taper off. I know that 5 years does not compare to your long term prednisone, but I want to add that it was challenging for me to do as the aches and pains, headaches, moods etc were bothersome. My Mayo transplant team suggested a taper, and my local PCP worked with me when I had to adjust the taper. I also discovered that the prednisone had been covering my exercise induced/allergy induced asthma and so that involved a temporary halt to the taper.

Here is a discussion where other members on Connect are talking about prednisone. As a member, you can join in anywhere.
Groups >Polymyalgia Rheumatica (PMR) >Tapering off of Prednisone
https://connect.mayoclinic.org/discussion/prednisone/
Here is some information you might find helpful as you get started:
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
https://www.webmd.com/drug-medication/prednisone-taper

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Thank you for you reply and recommendation @rosemarya. I will attempt to start a new discussion.
And thanks for the links. If my experience is at all relevant, I would say that your transplant team led you down a good path. Prednisone is a double edged sword…

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@loribmt

Hi Rosemary, interesting! I didn’t realize the difference between your liver/kidney transplant and lung/heart! Well, ok, besides the obvious that they’re different organs. But that you didn’t need to wear a mask before Covid. That’s awesome. So yup, you probably don’t have to worry about the same things. That would be a good question for @danab with his heart transplant and if he needed a mask before covid.

With a bone marrow transplant, my entire immune system has been replaced with someone else’s. I’m on tacrolimus to keep my new and very aggressive immune system suppressed until my body and the new cells learn to play nice and also 2 antibiotics, antifungal and antiviral meds daily. When I’m finally off tacro and finished with all my childhood/adult vaccinations I should be able to be liberated from pills and masks! But for now I have to wear a mask and did so for a over a year before Covid hit. Doesn’t bother me at all. ☺️

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It’s interesting learning how different our transplants are, as well as how our provider advice varies. For example, my liver team suggests being masked, especially inside, during flu season. Since I was immersed in state 3 liver disease just a short time before Covid hit and I had my transplant last August, I figured masking inside anyway is going to be a regular occurrence.

So far as I know, I’ll be on Tacrolimus and Mycophenolate the rest of my life. That’s exciting that your body will eventually adjust to your new bone marrow and immune system.

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@looperdolly

Hi, This is my first comment in a MAYO connect group. I hope it's well enough matched to the topic. Here goes…I have surpassed my 30 year kidney transplant anniversary. An amazing milestone for me. Last month I called a meeting with my care team to discuss how to better fine-tune and manage transplant medications to take into account my whole body health for the next 30 years. Long story short, the side effects from long term (3 decades) prednisone use are at the forefront of many of my health setbacks. Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? My care team is working with me to gradually taper off prednisone completely. It sure would be assuring to know if anyone has gone before me on such an endeavor. Will my body really learn to make cortisone on it's own again? Thank you for reading my post. I really appreciate it!

Jump to this post

I am not on prednisone due to a severe reaction immediately after my transplant. But I have been treated for thyroid issues by an acupuncturist. My understanding is that acupuncture can also be helpful in regulating one’s adrenal glands and balancing of cortisol production.

This could be useful as you reduce your dosage, as well, because it is also helpful for drug withdrawal symptoms, relaxation, etc.

REPLY
@athenalee

It’s interesting learning how different our transplants are, as well as how our provider advice varies. For example, my liver team suggests being masked, especially inside, during flu season. Since I was immersed in state 3 liver disease just a short time before Covid hit and I had my transplant last August, I figured masking inside anyway is going to be a regular occurrence.

So far as I know, I’ll be on Tacrolimus and Mycophenolate the rest of my life. That’s exciting that your body will eventually adjust to your new bone marrow and immune system.

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@athenalee This really is all so fascinating…all the transplants!
You will be on Tacro and Mycophenolate the rest of your life or some form of immunosuppressant. From spending time with you on this forum I know you enjoy being educated. 😉 So here’s the difference between your transplant and mine, besides the obvious of organ vs marrow cells.

Basically, in a very large nut shell, the immune system controls ‘space invaders’ in our bodies. It’s an incredibly powerful force. In your case, with a new organ, your immune system sees your new liver as the invader. It will forever be wanting to protect your body from that liver, even though the liver is vital to your health! 😉 Meds help those two play well together by keeping your immune system suppressed.

In my case, my body is the enemy. I received an entirely new immune system via the stem cells of an anonymous 20 year old male donor who matched my HLA 10/10. Which is awesome.
It is now the most powerful entity in my body and sees my body as the invader. Given free reign, the T and B cells will launch an attack against me wherever it sees a threat and can be life threatening…every organ, skin, eyes, lungs, gut, etc… So I’m on Tacrolimus to hold it back a little. Gradually backed down from 7mg daily to .5mg. However, at some point, because the immune system has memory, it will begin recognizing my body as a non-threatening host and eventually settles down. We’re almost there!
Most marrow transplant patients aren’t on Tacro at the 2 year mark like I am. They’re off much sooner. I don’t know my donor but he is a mighty force. Haha as we joke at our house, “The force is strong with this one.”

The goal with the new immune system is to help me prevent Acute Myeloid Leukemia from returning. My old system failed to recognize the cancer cells and destroy them. The new system will and in fact has! I had an event last summer that my team feels was a Graft vs Leukemia situation and it stopped a relapse!! Yes! Fist pump!

Fun facts, I have 100% donor DNA/0% mine. I also have his blood type and male chromosomes! If you take DNA from a mouth swab, I’m still me. If DNA is taken from blood, I’m someone completely different. A chimera! The perfect crime novel in the works…

Oops, yes, and for that reason because your immune system is weakened with meds, you’ll do best with wearing a mask during flu season and inside with groups. It will be for me as well…forever. ☺️

REPLY
@loribmt

@athenalee This really is all so fascinating…all the transplants!
You will be on Tacro and Mycophenolate the rest of your life or some form of immunosuppressant. From spending time with you on this forum I know you enjoy being educated. 😉 So here’s the difference between your transplant and mine, besides the obvious of organ vs marrow cells.

Basically, in a very large nut shell, the immune system controls ‘space invaders’ in our bodies. It’s an incredibly powerful force. In your case, with a new organ, your immune system sees your new liver as the invader. It will forever be wanting to protect your body from that liver, even though the liver is vital to your health! 😉 Meds help those two play well together by keeping your immune system suppressed.

In my case, my body is the enemy. I received an entirely new immune system via the stem cells of an anonymous 20 year old male donor who matched my HLA 10/10. Which is awesome.
It is now the most powerful entity in my body and sees my body as the invader. Given free reign, the T and B cells will launch an attack against me wherever it sees a threat and can be life threatening…every organ, skin, eyes, lungs, gut, etc… So I’m on Tacrolimus to hold it back a little. Gradually backed down from 7mg daily to .5mg. However, at some point, because the immune system has memory, it will begin recognizing my body as a non-threatening host and eventually settles down. We’re almost there!
Most marrow transplant patients aren’t on Tacro at the 2 year mark like I am. They’re off much sooner. I don’t know my donor but he is a mighty force. Haha as we joke at our house, “The force is strong with this one.”

The goal with the new immune system is to help me prevent Acute Myeloid Leukemia from returning. My old system failed to recognize the cancer cells and destroy them. The new system will and in fact has! I had an event last summer that my team feels was a Graft vs Leukemia situation and it stopped a relapse!! Yes! Fist pump!

Fun facts, I have 100% donor DNA/0% mine. I also have his blood type and male chromosomes! If you take DNA from a mouth swab, I’m still me. If DNA is taken from blood, I’m someone completely different. A chimera! The perfect crime novel in the works…

Oops, yes, and for that reason because your immune system is weakened with meds, you’ll do best with wearing a mask during flu season and inside with groups. It will be for me as well…forever. ☺️

Jump to this post

Indeed fascinating! Thank you for such a great science lesson! And, congratulations on your new immune system fighting off leukemia.

Bodies are such a puzzle. My liver cirrhosis was caused by an autoimmune disease that attacked my bile ducts with antinuclear antibodies. Now, post transplant I have come down with Sjogren’s Syndrome which has brought on neuropathy in all my extremities and severe muscle and joint pain.

None of my providers has offered a reason for why it’s come on so rapidly after transplant or sadly any course of treatment other than Gabapentin for the nerve pain. So, I’m doing loads of research into RA autoimmune diseases and neuropathy. What I’ve found for Sjogren’s treatments are largely for symptoms. A couple of treatments for RA may be beneficial, including Mycophenolate which I’m already on. And, most meds for Sjogren’s and neuropathy I can’t take as they interact with Tacrolimus. Ultimately, healthy eating and exercise seems for now to be the best course…which I’m religious about now.

I hope your planning a “getting off Tacrolimus party!” Oh, and another fun fact. Tacrolimus is developed from a soil bacteria found in Japan…which is also curious given the origins of this current discussion.

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@athenalee

I am not on prednisone due to a severe reaction immediately after my transplant. But I have been treated for thyroid issues by an acupuncturist. My understanding is that acupuncture can also be helpful in regulating one’s adrenal glands and balancing of cortisol production.

This could be useful as you reduce your dosage, as well, because it is also helpful for drug withdrawal symptoms, relaxation, etc.

Jump to this post

Your acupuncture story is very interesting, as I was at the Mayo 2 weeks ago and they told me my thyroid numbers were far above normal. They did a thyroid scan and found nothing. So next week I'm scheduled locally for a thyroid uptake test. Did you go through the same process? and are you able to measure the results of the treatment as I would not know, since I feel fine and would need a second uptake test to measure.

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Hi, I am a newbie. I am a 1 yr. post Liver Transplant recipient. I have had abdominal pain since Nov. 2020. Dr.’s thought it was nerve ending damage and referred me to Pain Mgmt. In February, the right side of my abdomen area started protruding outward. After a series of tests, it was finally discovered recently by a trauma surgeon that I need to have surgery to reconstruct my abdominal wall. I would like to hear from others who may of had the same issue and any and all comments would be appreciated.

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@benlam11

Your acupuncture story is very interesting, as I was at the Mayo 2 weeks ago and they told me my thyroid numbers were far above normal. They did a thyroid scan and found nothing. So next week I'm scheduled locally for a thyroid uptake test. Did you go through the same process? and are you able to measure the results of the treatment as I would not know, since I feel fine and would need a second uptake test to measure.

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No, just TSH, which was just moderately high. My doctor said he’d jmonitor it. At the time I was seeing an acupuncturist for allergies and I told her about it. She did needle treatment and Chinese herbs, and my levels returned to normal. I’ve been seeing an endocrinologist for osteoporosis who recently tested my TSH. It’s above normal again.

I have Sjogren’s, which I have read can contribute to hypothyroidism, as can other autoimmune diseases. However, immunotherapy can apparently also contribute to it. So, I’m going to discuss this with my liver doctor next week.

Good luck with your test. Have you spoken with your transplant team about it your high levels?

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@melody12

Hi, I am a newbie. I am a 1 yr. post Liver Transplant recipient. I have had abdominal pain since Nov. 2020. Dr.’s thought it was nerve ending damage and referred me to Pain Mgmt. In February, the right side of my abdomen area started protruding outward. After a series of tests, it was finally discovered recently by a trauma surgeon that I need to have surgery to reconstruct my abdominal wall. I would like to hear from others who may of had the same issue and any and all comments would be appreciated.

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Hello @melody12 and welcome to Mayo Clinic Connect. I am really sorry to hear about your abdominal wall surgery that you now need. It sounds like this was perhaps part of your surgery outcome from your transplant but I would like to clarify to be sure.

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