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
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.
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.
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).