Chronic GVHD ~ Let’s talk about it!

Posted by Lori, Volunteer Mentor @loribmt, Mar 18, 2021

Those of us who have received peripheral stem cell transplants (bone marrow transplants) know first hand what a rare and amazing gift it is to be given a second chance at life. But it can come with a few interesting challenges and adventures in the form of Chronic Graft Vs Host Disease (GvHD).

At this posting, in 3 months I’ll be 2 years post transplant. So far I’ve had two serious, but quickly controlled episodes of GvHD. I’m still on a very low dose of Tacrolimus (.5mg daily) for maintenance as a precaution. From routine blood draws there is indication of slight liver involvement from GvH and my kidneys aren’t delighted with continued meds to treat the liver. My awesome transplant doctor, who is very conservative in treatment, is monitoring everything and is not concerned. He feels we’ve struck a good balance right now and expects at some point for me to be fully off the Tacro. Not to jinx anything but right now I’m feeling healthy and energetic.

C-GVHD symptoms can range from mild to severe and affect every part of the body with side effects such as rashes, dry skin and eyes, joint pain, GI problems or organ damage. It’s routinely held in check with lotions, steroids and anti inflammatory medications.

What are your Chronic GVHD adventures and challenges?
What medications or treatments have worked for you?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

edb1123 | @edb1123 | Sep 12, 2021

In reply to @loribmt "You’re doing exactly the same as I am with your diet and lifestyle. We take care..." + (show)

👍😊

athenalee | @athenalee | Sep 13, 2021

In reply to @loribmt "I’m having stone-aged internet issues this week which is really impeding my responses and testing my..." + (show)

@loribmt

I’m having stone-aged internet issues this week which is really impeding my responses and testing my patience! LOL You posed a really great question so I’m happy to see @athenalee pop in with answers because I was going to tag her into this conversation! She’s a guru when it comes to health and well-being of our bodies through foods in our diets!

A while back I discussed this with my transplant team. What can be done to avoid GvHD of the liver (and in general) The only GvHD I have right now is a slight indication of “potential” liver issues because of minor elevations in my liver function numbers, similar to yours.
A lot of our GvHD is simply hit and miss. It’s whatever our immune system decides needs fixing and starts these ‘little fires’ in our bodies that have to be stomped out with prednisone or other anti inflammatory meds. So whatever we can do to avoid inflammation is one proactive thing we can do to avoid getting those new cells all riled up…such as avoiding any illness, avoiding sun, toxins, etc.

There are some research discussions regarding Choline in the diet. It’s being studied for potential issues within the gut biome which can cause inflammation, which in turn may cause GvHD. But it’s not proven and most of these foods on the Choline list are more important to our overall health than any speculation.
They include eggs, fish, beef, soybeans, wheat germ, chicken, turkey, cruciferous veggies, almonds, dried beans, cottage cheese…you get the picture!
https://gvhdhub.com/medical-information/the-effect-of-choline-rich-diet-on-gvhd#:~:text=The%20study%20highlights%20the%20impact%20of%20diet%20on,and%20Th17%20cells%20activation%2C%20which%20stimulates%20GvHD%20progression.
So, the talk with my team focused more on what foods are GOOD for the liver rather than avoiding the Choline rich foods. And because some of the good foods contain choline, it’s really a matter of keeping a healthy body through diet, exercise and water intake.

There are liver specific foods which help promote the health of the organ.

Eating the Rainbow ~ fresh veggies and fruit filled with antioxidants
Oatmeal
Broccoli
Coffee
Green Tea
Water
Almonds-nuts
Spinach
Blueberries
Herbs & spices

AVOID
Fried foods
Too much sugar
Alcoholic beverages
Unhealthy snacks
Acetaminophen (on a daily basis)
https://liverfoundation.org/for-patients/about-the-liver/health-wellness/nutrition/

Jump to this post

Ha! A fountain of information you are Lori…a naturally sparkling, bubbly fountain that is!

Lori, Volunteer Mentor | @loribmt | Sep 14, 2021

In reply to @athenalee "Ha! A fountain of information you are Lori…a naturally sparkling, bubbly fountain that is!" + (show)

Being that effervescent makes me wonder if it’s just gas! Hahahaha!

Athenalee, you’re the knowledgeable one! Thank you for all the input you give for the health and well-being of fellow transplant patients.
Your transplant culinary arts zoom with @estrada53 sounds like a really cool idea! I’m happy to see so many people signing up because I think it will be very valuable and informative. I’m hoping to possibly join you all at some point but for now the timing will be an issue and I’d miss the meetings.
But wow, good luck! It will be fun for everyone to actually hear and see each other! A fantastic bonding experience too!

athenalee | @athenalee | Sep 15, 2021

In reply to @loribmt "Being that effervescent makes me wonder if it’s just gas! Hahahaha! Athenalee, you’re the knowledgeable one!..." + (show)

I love learning new things, so it’s been great learning from you about stem cell transplants. And, much appreciation to you for sharing your knowledge. I did copy and add the info you posted on GVHD and diet to add to my transplant culinary arts resource list.

When you feel you have the time, it would be great to have you join. We don’t expect that everyone will join every time. I was going to ask you to maybe host a webinar since there is so much I learned from you on food safety tips.

We’re excited to be able to discuss and share with Connect folks live! Especially these days with Covid still so prevalent. Plus, people can still join and be anonymous through Zoom if they choose, but still gain from the experience.

cathyherman | @cathyherman | Sep 16, 2021

I’m so grateful for all of you! Love some input on if anyone has had gallbladder issues? I’m a caregiver for my juvenile onset type 1 diabetic/ kidney failure stage 4 for my sister. Diabetic for 50 years. Her doctors have never mentioned gallbladder. Issues with stomach and severe back pain/ bathroom issues (TMI) . Hemoglobin 5.8 required blood transfusion. Couldn’t find where she or if is bleeding somewhere. New word for my list Hyda nuclear scan which test for slow leak in an organ. Doctors never mentioned maybe a small bleed out in an organ. A doctor mentioned that new word above. Her numbers aren’t stable even after transfusion. Please share your experiences. I’m contacting a G.I.fingers crossed. P.S. working on not being do wordy !

Lori, Volunteer Mentor | @loribmt | Sep 17, 2021

In reply to @cathyherman "I’m so grateful for all of you! Love some input on if anyone has had gallbladder..." + (show)

Hi Cathy, I was just reading over some of your other discussions about your poor sister and all that’s been going on in her life. With her diabetes, kidney failure and now all the agony of these digestive issues she must be feeling so miserable! A hemoglobin of 5.8 is super low! I’m betting she felt like moving at a snail’s pace!
You’re very loving and generous to be so dedicated and committed to her health and medical care. Caregiving can be pretty stressful so I hope you’re also taking time for yourself to decompress!

Just a quickie…don’t worry about being too wordy! Think of us as all sitting around the kitchen table with a cuppa in the morning. In my group of family and friends we’re never economical with words. A good chat is how we help each other. It’s all good!

With your sister’s unexplained possible blood loss resulting in a low Hgb level, did she by any chance have her Covid Vaccinations? There are discussions in our forum with members who have had the virus or vaccines and are experiencing similar symptoms with low hemoglobin or low iron levels in their blood. Most have had tests and scopes to determine if there is a slow blood leak somewhere only to find it is related to the vaccine. I’m certainly not implying that this is her situation but it might be something worth mentioning to her PCP
https://connect.mayoclinic.org/discussion/iron-depletion-in-blood-and-covid-vaccine/?pg=7#comment-625176
I’ve not had any gall bladder problems personally. But the test your sister’s doctor mentioned is called a HIDA scan. I posted a link from Mayo so you can see what that’s all about.
https://www.mayoclinic.org/tests-procedures/hida-scan/about/pac-20384701
Do her doctors suspect the gall bladder for her stomach and digestive issues?

cathyherman | @cathyherman | Sep 17, 2021

In reply to @loribmt "Hi Cathy, I was just reading over some of your other discussions about your poor sister..." + (show)

She is vaccinated. Looking to see when she received shots and I’ll compare blood work before and after the shot. Helpful information!pancreas isn’t producing enzymes . Put on Creon Which helped immediately. Researching that medication maybe a coincidence symptoms began around that time. Her digestive system has been a mess . Webs sites are very helpful greatly appreciate any knowledge I can get my hands on. Love the support!!!

Lori, Volunteer Mentor | @loribmt | Sep 17, 2021

In reply to @cathyherman "She is vaccinated. Looking to see when she received shots and I’ll compare blood work before..." + (show)

Hopefully the Creon will do the job getting her pancreas functioning normally again. Boy, she’s really been through the wringer with all of this, huh. Digestive issues are just awful on top of everything else she’s going through. But it really does sound like she is getting good medical care. Unfortunately, these complicated medical issues can take time to get resolved.

cathyherman | @cathyherman | Sep 17, 2021

In reply to @loribmt "Hi Cathy, I was just reading over some of your other discussions about your poor sister..." + (show)

Doctors haven’t mentioned gallbladder. Scans show her gallbladder not an issue. I’m reading different information even when GB doesn’t appear to be an issue. Her symptoms align with GB symptoms. If GB doesn’t look compromised in a scan can it still play a role in digestive symptoms?

Lori, Volunteer Mentor | @loribmt | Sep 17, 2021

In reply to @cathyherman "Doctors haven’t mentioned gallbladder. Scans show her gallbladder not an issue. I’m reading different information even..." + (show)

Hi Cathy, I only mentioned Gall Bladder because you brought it up in your previous post with the comment of the doctor saying something about a HIDA scan, which checks for potential issues with the GB.

But your sister has since been diagnosed with a pancreatic enzyme deficiency which can certainly explain her digestive issues. It can cause a host of serious gastric symptoms with pain, weight loss, diarrhea, etc..

I know you are very concerned for her welfare but it doesn’t pay to explore the GB issue further as the scans showed nothing amiss there. The signs are pointing to her pancreas. So give the new medication to correct her enzyme deficiency a chance to work. I know our first reactions are usually to head to the internet to check for symptoms but that can be a detriment too and often adds unfounded worry.
It sounds to me like her doctors are zeroing in on your sister’s problem and are taking her situation seriously. So give yourself a little break from all the stress and let the medical team do the worrying for you.

Is your sister in the hospital at this time?

View More View Less

Please sign in or register to post a reply.