GVHD...what is that???
When speaking about my bone marrow stem-cell transplant, I usually get this reaction when I mention GVHD (Graft vs. Host Disease). Basically, its my body fighting the donor cells and it is exhibited through a variety of symptoms.
GVHD is very common in transplant patients. I have definitely dealt with a lot of it!!! My GVHD seems to go in phases and I'm hoping some of those outbreaks do not return any time soon or really ever!!! I can handle some of it but not the more extreme cases I had had.
Some forms of GVHD I have experienced has been nausea/vomiting, skin rashes (or burns), gastrointestinal issues, asthma/lung issues, and dry eye. I really hope that's all I know and the symptoms I experienced early on post-transplant, I'm hoping and praying I do not have to experience again.
Most of the time, medication, is used to address these symptoms and the majority of the medication is steroid related. So, not only have I had to suffer with the GVH symptoms themselves, but the side effects to the medications, which has included, weight loss/gain, the typical steroid "moon" face, eating or lack of. It's been a total roller coaster of emotions and side effects.
Every transplant patient I'm sure has experienced some form of GVHD. Noone experiences the same thing and each experience can be brief or long-term. There really is no way of knowing how long I will have to deal with these side-effects. It could be a few months, years and even a life-time. And knowing that it may never end, can be very frustrating. I guess it's just a matter of learning to live with and knowing that there is a possiblity of it just ending or lasting forever. And the quicker, someone can come to terms with it, maybe, lasting forever, the sooner of getting your life back. Because here again, is yet another thing that can't be controlled. So why worry about something that may or may not go away.
I think one of the biggest struggles for me has been the "sun" issue. I really have never been one to lay out and soak up the sun. I have never been in a tanning bed and, ususally, the times I have ever been to a beach was spent under an umbrella. I have never tanned well and always seemed to burn. But, at least, I had a choice of whether I wanted to sit out in the sun for a little bit, whether it be at the beach, a picnic, party, etc. I still had that choice. Now, I don't. I have to seek out the shade wherever I am. And if there is no shade, I need to create my own, either by using an umbrella, an umbrella tent, or layering up in clothing. This really has not been very much fun. Sometimes, it can be quite chilly in the shade, and I crave the warmth of the sun's rays. But, it's either hiding out in the shade, or risking a GVH flare up. My doctor had informed me that not only can the sun cause skin issues,like rashes/burns or even melanoma, it can also cause a GVH flare up. And, that flare up could be any I have experienced before or maybe something new. I have been told to keep lathering myself in sunscreen, even during the winter. I need to be aware of how much skin is exposed in the car and I also need to protect my eyes by wearing sunglasses when I'm out, even on cloudy days, because the sun's rays still penetrate through the atomosphere and clouds.
I guess I never really thought how much we are exposed to the sun. I do need to be more diligent in applying sunscreen. I just hate that heavy, oily feel. So if anyone can recommend a skin-sensitive, oil-free sun lotion, please let me know. I need to protect myself from any future GVH issues and any bouts of possible melanoma.
I have said, in my previous blogs, about all the changes that one faces when dealing with a bone marrow stem-cell transplant, and as you can tell, there are many. It's all about taking things day by day, because if you're constantly looking at the big picture and trying to figure things out, you're going to make yourself crazy. And, I have had many people say to me "at least your alive". Well, I hope now, some of you can see that it's so much more than that. Yes, I am very thankful to be alive, but it's about coping and processing all of these changes and restrictions. It's a different life from the one I've had before and this won't be the last of the changes. We are forever evolving as human beings, internally and externally. I'm just coping and processing this current journey and I'm hoping that the future won't be so complicated, but if it is, I will get through it, just like I am now!!!
Image source: http://blog.logmycalls.com/Portals/155740/images/what_is_it-call-tracking.jpg
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