Severe Multiple-Organ ACUTE GVHD – Part 1 – SKIN GVHD

Note: Explicit medical photos. I you are squeamish, then you have been warned.

Here is a description of ACUTE GVHD. For detailed information on each type, please see each individual postings. It would have been too long to include them all in one posting.

It is often believed that Acute GVHD happens within 3 months of the stem cell/bone marrow transplant, and Chronic GVHD anytime after that. Well, if that was a fast rule, then we’d know everything about GVHD and that would be it! Well, not so much.

See, not much is known about GVHD, no matter if it is Acute or Chronic. A lot more research needs to be done to fully understand why some people have it and some don’t. It has all to do with the T-Cells (not going into details on that one as it is far too complicated at this point). Some people have one or the other form of GVHD, some have both, and some have a slight case for a short period of time, then nothing ever again.

A little GVHD is always good as it means the new immune system works. However, sometimes the new immune system never really settles down and constantly sees the host’s body as something foreign and constantly attacks it (my case). Some have it in a life threatening form (Ta Da! That would be me as well – ain’t that Special!) Every one is unique and reacts differently. There is no way to predict how someone’s body will react to a stem cell/bone marrow transplant, whether it is a related or non-related allogeneic donor.

So here goes. I have had the ‘regular’ multi organ Chronic GVHD (excessively dry eyes, nose, mouth, throat, GI tract, Skin GVHD, liver GVHD…) since August 2011. So, I pretty much got used to living that way. Not pleasant, but you’d be surprised what you adapt to.

The when I relapsed with the Richter’s Transformation in January 2012, things got complicated and since I had to stop the immunosuppressant drugs and steroids I was on, which was somewhat keeping everything in check, my new immune system (donor’s) began attacking me with Severe Acute GVHD.

This is when all hell broke loose. I began experiencing a more severe form of dry mouth and throat, and my digestive system was getting worse as well as I was beginning to have severe diarrhea. Swallowing pills, food and drinks were quite challenging and I was beginning to have massive shortness of breath. Not to mention an inability for my body to absorb nutrients.

I had not been able to eat solid food since mid-January 2012 and was losing a considerable amount of weight, not to mention breathing was challenging. So I called my friend Monika and on February 11, 2012 we made our way to the emergency. A BMT doc was waiting for me but unfortunately I fell through the cracks of the system and was ‘followed’ by a generalist for a few days, which might have delayed an appropriate treatment for me. So be it, you cannot change the past.

I was admitted in the general population ward on February 12. ACUTE MOUTH GVHD began.

Here are some of the ACUTE GVHD that have kept me hospitalized for this long…and still dealing with it for more than 2 months now. When will it stop? Your guess is as good as mine and the doctors’ right now.

So let’s do this chronologically as it developed for me. Please remember that there was some overlapping with the ACUTE GVHD issues along with the ongoing Chronic GVHD which is still ongoing since August 2011.

The doctors would increase the amount of steroids to deal with one issue. As they would begin to taper off the steroids, then another ACUTE GVHD would develop. And of course, you can’t rely on GVHD issues to have the decency to allow one problem to be dealt with before another one arose. So it was a constant battle of finding a balance in dosage.

In the meantime, you also have to realize that the once Chronic LIVER GVHD has always been a huge problem since Transplant in February 2011. Therefore, every meds, every treatment, every increase in steroids, antibiotics, anti-fungal, anti-viral, immunosuppressant meds affected the liver enzymes and gradually made it worse where it became the biggest life-threatening issue of them all.

The LIVER became life-threatening ACUTE GVHD as soon as they began treating me for all the other ACUTE GVHD issues. This has been the most challenging for the doctors and the scariest for me. It gave me an insight as to what I could possible die of other than the Lymphoma itself. It became so serious that the aggressive, life-threatening Richter’s Transformation (large B-Cell Transformed Non-Hodgkin’s Lymphoma) became secondary. It is rather scary when a life-threatening disease such as these can be overshadowed by side-effects of a Stem Cell/Bone Marrow Transplant.

ACUTE SKIN GVHD

Mild Skin GVHD 25 Jan 2012

Mild Skin GVHD 25 Jan 2012

Around January 18, 2012 I began experiencing SKIN GVHD where my skin began getting really itchy and looked like I had a sunburn on my chest.

It gradually began spreading over my entire body and felt like it was constantly crawling with ants along with the sensation of an extremely severe sunburn. Blisters began appearing in my hands and in between my fingers. Eventually, I began having brown spots all over. Thankfully, not that it mattered much, I was lucky enough that I never had any spots on my face itself. There were some on the side of my neck and head.

Skin GVHD 24 Feb 2012

Skin GVHD 24 Feb 2012

I had topical steroid cream that I applied twice daily but it was efficient only for a few hours. It felt like chicken pox and drove me insane.

Skin GVHD looking like dirty brown spots

Skin GVHD looking like dirty brown spots

The one thing I never realized, is that when it got better, the spots sort of sloughed off. Again, very similar to a sunburn. I would just rub my skin and the surface area would just come off like dirt.

As my eyes were getting jaundiced from the elevated liver enzyme, I admittedly had a more ‘leopard’ look. Not so much what I would say attractive but funny enough.

As soon as we began massive doses of steroids for other GVHD issues, the skin GVHD subsided. The whole episode lasted about 1 month (mid-January to mid-February 2012).

Marie-Chantal

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About Marie-Chantal Marchand

I'm a Photographer, a Writer, and a foodie. Used to be a Professional Development Coordinator and a Meeting Planner. Now, I'm Marie-Chantal Marchand, Survivor - Warrior! This is not 'my' disease. Nor do the TP53 w/17p Deletion, Richter's Transformation, stem cell transplant, GVHD, life-threatening and physical complications define me. It is only passing through. This journey has taught me to remain cautiously optimistic, hopeful and have faith that my attitude and sense of humour will get me through the challenges. There is never a situation serious enough where you cannot find something to laugh about. I will try to keep this lighthearted and humourous however serious information might sneak in. This blog is for all my friends and family wishing to follow my progress, as well as anyone else on a similar journey wishing to share. Comments, encouragements, positive energy, visits and hugs are highly welcome. Thank you for being with me on this journey. Marie-Chantal
This entry was posted in Acute GVHD, Possibility of dying, Post-Transplant Issues, Side effects of long term steroids. Bookmark the permalink.

4 Responses to Severe Multiple-Organ ACUTE GVHD – Part 1 – SKIN GVHD

  1. my father had bmt in 2004 to make a long story short he started out with the text book symptoms you find everywhere but eventually it started with open heart surgery, pericardium removed then he was diagnosed with pulmanary fibrosis, COPD, diabetes, i know im forgetting something but most recently congestive heart failure and he passed away january 6th 2013. I dont want to scare people but he would have loved to trade his illnesses for the ones he had in beginning

    • i’m sorry about your loss. How old was your father? Hopefully he had a wonderful long life surrounded by family and friends. And yourself?

      I’m 44 yrs old and I don’t wish what I have nor what your dad went through on anyone.

      Marie-Chantal

      • he would have turned 64 on february 3rd. this year, oh yes whether he wanted it or not we have a huge family and were very close his illness actually made us even closer and him closer to his siblings so thats a plus. Im sorry if i sounded cold i was just doing some research and couldnt find anything about gvhd that my dad went through which i know wioth transplant all organs can be affected but it was like he was being tested something he had 3 different lungs diseases, his heart was a fib and weeks before he passed his kidneys were startin to fail he was just too weak and tired but he put in one hell of a fight for 10yrs poor man was amazing. if i cld give u any useful advice from our experience would be go to doctor often at first dign of anything that dont feel right, i dont know if he just didnt like the hospitals or didnt think it would be anything but my dad would not go to doctor if he wasnt until my mom woouldput her foot down he would then be scolded by his docs for waiting and him having pneaunomia probably for at least 2mnths b4 he went in with his already bad lungs last winter really wiped him if it wouldve been taking care of right away i think he would still be here right now no it wasnt pneamonia that klilled him but what it took the docs to get rid of it was too much for his aleady worn out body. So dont dont hesitate to run to the ER if somethings off if u wanna be healthy and live as long as ppossible let the doctors earn their pay and care for u

  2. Marie Claude Dufour says:

    MC…. je te trouve tellement forte … !!

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