Archive for October, 2017

Been a rough summer

I have not been feeling well and have had an insane amount of appointments. I apologize for the lack of updates during this time.

Skin: After decreasing the prednisone, I began to have problems with my skin. My arms swelled up to the shoulders, my legs swelled from my calves up to the top of my thighs, and my lower abdomen swelled around my entire body. The skin in these areas became hard, tight, and thick, making it difficult to move. The skin is also lumpy. This has caused a great amnount of pain and discomfort. I have been diagnosed with skin GVHD (Graft vs Host Disease). Apparently this is one of the most difficult types of skin GVHD to treat. How is it treated? Photopheresis and anti-rejection meds. We moved me from monthly photopheresis to weekly and started me on Sirolimus, an anti-rejection medicine. The Sirolimus causes urinary issues, edema and abdominal swelling for me. It also gives me very shaky hands/tremors. Photopheresis is usually a 3 to 4 hour treatment, and is given 2 days in a row. In other words, each completed treatment is a 2 day ordeal. Per my GVHD doctor, decreasing prednisone too fast can cause the skin GVHD to spread. I had a very small amount of it unknowlingly prior to the prednisone decrease. I will begin seeing a dermatologist in a couple weeks. I have also just started a new medicine for GHVD called Jakafi. It’s been recently approved by the FDA for treatment of GVHD where prednisone failed.

Strength: I’ve also been going to physical therapy 2 days each week. My range of motion and strength are terrible, and many parts of my body are seized up, especially with the skin GVHD…for example, I can’t straighten my elbows or knees. I will begin occupational therapy in a couple weeks, which will address my hands. I was able to puchase a quad cane, which has been a great help. My knees still continue to give out if I bend them too much.

Eyes: My right sclera lens has been running the eye. I developed a cyst on my eyeball because of this, and have had a total of 3 lenses for that eye now. My warranty has expired, so the next one I order I will have to pay the $400 full price. My doctor is looking into having the lens vaulted in the section where it’s rubbing my eye.

Teeth: Pehaps the best news – I have begun to get dental work done, thanks to the donations that I’ve received! So far I’ve had 3 teeth pulled and 6 cavaties filled. Most of the cavaties were fillings that had fallen out of the front of my top teeth . I am no longer scared to smile. I have a lot more work that needs done, but it’s a good start.

Gut/Food: I’ve also been disgnosed with GHVD of the gut and put on a new medicine for that. It’s a steroid medicine that coats my digestive system. I’m also back on an acid reflux medicine. I feel a little better now that I am on these meds. Fortunately I have been able to gain weight, and I’m at a healthy weight again. I continue to have a very dry mouth and choke on just about everything I eat, so the eating has not been any easier, especially after having 3 teeth pulled.

It’s getting increasingly difficult to manage my meds and appointments. I’m up to about 20 medications, and I don’t even know how many specialists I am seeing. I can’t swallow pills, so they either need to be crushed or they have to be liquid. I have been sleeping a lot, and I’m back on pain pills, mostly for my mouth and legs. I spend a lot of time with my feet up because of the pain and swelling in my feet and legs. It’s quite unpleasant.

Of the donations that I have received so far, I have enough to cover one more set of fillings at the dentist and 1 replacement lens for my right eye. Anything that you’re able to send my way is greatly appreciated!