This weekend I started having stomach pain. I also started having more frequent bowel movements. The pain eventually became fairly constant, and very painful. It would often have me doubled over in the bed. I didn’t have a fever, so I held off on calling the doctor. Saturday night the pain and the frequent bathroom trips kept me up for most of the night, so I decided to call the doctor. Because of what was going on with my stomach, and the rash, and the eating difficulty, they asked me to go to the hospital.
I was assigned a room on P2 and checked back in to Henry Ford. I was told to expect to be there for 24-48 hours. I was hooked back up to the IV and lots of blood was drawn. My stool sample came back positive for C-Diff, so I was put back on those antibiotics. After a couple of negative blood tests, one of my blood samples came back positive for a bacterial infection and a fungal infection, so I was also put on those meds. It looks like I might be here for a while.
The bumps seem to be spreading down my chest. They now appear on both sides of my chest down to my chest plate. Still no itch. The doctors prescribed a different cream and a gel. They don’t seem to be making a difference, but the doctors aren’t concerned. It looks really bad, but doesn’t appear to be harmful.
On the eating front, I’ve started having a little more success with chicken noodle soup. Eating is still a huge chore. It’s been muscle milk, apple sauce and soup. I’ve had a couple small bouts of nausea, mostly when taking pills, but nothing major.
I was able to get out of the house for a little bit today. My parent stopped by, and we all got in Lisa’s car and drove around downtown for a while. We went to Belle Isle. Brandon and I had a chance to fly the drone for a bit. It felt good to get out.
My face is still bumpy, and my hands are peeling a lot. Luckily they aren’t painful and sensitive anymore. I also noticed a rash starting to form. I’m noticing a bunch of small black dots in my groin area, and also on my neck and upper-right chest. They don’t itch, and they aren’t raised or bumpy. Very strange. The doctors don’t seem to think it’s GVH, but aren’t sure if it is fungal, bacterial or viral. I also have the jock itch, so I switched to boxers. The doctors prescribed an antifungal powder for the jock itch, and a steroid cream for the new rash. I also got a steroid cream for the bumps on my face, which they think is mild GVH.
Today was my birthday. My parents and cousin Robert stopped by. I was pretty run down for most of the day, so definitely not one of my favorite birthdays. The rash on my face spread down to my cheeks and chin. I’ve been trying different foods to see what I can get down. I’m able to drink more juices now, so I supplement water with Gatorade, Vitamin Water, Muscle Milk and apple juice. I haven’t had much success with soups. Even Campbell’s Chicken Noodle Soup doesn’t taste right. I’m able to eat mandarin orange cups, apple sauce and other soft foods. Oh how I would love to have a steak right now!
DAY 22. The sensitivity in my hands is diminishing, but they are starting to peel like crazy. I’ve also started having gut issues again, having to go every 2 hours or so. Not fun. It turns out that I have C Diff again, so I was put on Vancomycin for 10 days. I’ve been pretty run down lately, most likely due to the fact that I’m not getting good sleep or eating well. My taste is still off, although it seems to be getting a little better. A few tastes come through, mostly sweet and sour, but I still can’t eat meat. I can chew it, but my throat doesn’t want to swallow. I’ve also started getting a rash on my face. Right now there is a small patch in the center of my forehead, and patches on my nose and down the sides to the top of my mouth. This might be signs of Graft Versus Host Disease (GVHD). This is an expected condition where my new immune system sees my body as foreign and attacks it. Some signs of GVHD are good, because they show that my new transplanted cells are engrafting. I’ll only need to worry if I see rashes on a large percentage of my body. So far my blood counts are looking good. I’m looking forward to being able to eat again, since this is probably the most difficult part of the recovery process for me right now.
My magnesium infusions were increased to twice a day – 4g in the morning and 2g in the evening. We had issues with the first pump. We kept getting Upstream Occlusion and Air in Line errors every 10-15 minutes. The pump was switched to a smaller, more portable pump and that one works a lot better.
DAY 16. Today was the first day of home nursing care. Part of my treatment involves getting magnesium infusions. The Prograf that I take as anti-rejection medicine causes me to have a magnesium deficiency. I need to have a 2-hour magnesium infusion every day, so the nurse came by today to train Lisa and I on how to use the IV pump, and how to flush and maintain my trifusion catheter. The process is relatively straight-forward. They plan to have a nurse come out on Saturday and Sunday for additional training. After that we should be able to maintain the pump on our own.
Today I was discharged! In the morning I met with doctors, then I met with the Pharmacy technician. I was given a pillbox with 7 different prescriptions, 5 required and 2 as-needed. I realized when I took a selfie that my face had darkened a few shades, as if I spent the last 3 weeks at the beach. I feel good today. There are a couple of treatment-related issues that I’m dealing with. My taste is starting to return, unfortunately it is the metal taste that so many people describe. It is almost like everything is soaked in old coffee, so when I eat food I get the texture of the food but the slight coffee taste. The other issue that I have is with some skin sensitivity, especially in my hands. The palms of my hands have darkened, and are very rough and very sensitive to touch and heat. In an unfortunate turn, I also have sensitivity in my scrotum, which has me walking like a cowboy sometimes. All of these issues are relatively minor, but hopefully they clear up soon.
Good news. My counts are going up and I should only be here for 2-3 more days. I was taken off the Prograf IV and the antibiotic IVs. The TPN IV comes off tonite. I will also be transitioning to pills later. I’ve been feeling good today. I’ve gotten a couple of walks in already. No improvement on the food front with regards to taste or appetite. That will need to wait until I get home I guess.
Happy Easter! Another major holiday spent in the hospital, to go along with Christmas, New Years Day and MLK Day. When I took my shower this morning I was able to rub off most of my hair with a washcloth. I still have my eyebrows. My throat is getting better. Still not eating a lot but it’s staying down. Food seems to taste like absolutely nothing, even my favorite fallback peaches. My mouth is still raw in spots and rough in other spots. The roof of my mouth is also still very rough. This causes different parts of my mouth to respond to heat and cold differently. I had a strange moment eating peaches when a spoonful would feel cold in part of my mouth and room temperature in other parts, all at the same time. Lisa brought me a plate with some ham, green beans, mac & cheese and a crescent roll. I took a few bites, but my taste buds didn’t cooperate.
The throat pain finally began to subside. I noticed in the middle of the night that I could swallow without the sharp pain. The pain changed more to irritation and more of felling of something being stuck in my throat. I was able to drink small amounts of water and eat soft foods, but this would aggravate the pain somewhat, and at times the food would want to come back up. As the day went on, swallowing became easier and more comfortable. On a side note – I noticed that the hair on my head is starting to fall out.
The issues with my throat escalated quickly. With each swallow it felt like razer blades were cutting across my throat. Each time I attempted to swallow a pill or drink water it would immediately cause me to regurgitate. Medications were moved from pill to IV, and I was also put on a supplement called TPN. I was wiped out from an energy perspective and spent 3 straight days in the bed. I also started noticing a lot of skin changes. The back of my left hand is dark and scaly again. Also, the palms of my hand are very dry and rough, but extremely temperature sensitive. My face is a lot darker. My legs are spotty – all of the hair follicles are darker.
The mucositis has been picking up. I started getting some tenderness near the back-bottom of my mouth. My tongue and throat has become more tender. I then started feeling some roughness on the bottom side of my cheeks. I also started feeling irritation all the way down through my stomach. My tongue is becoming more rough and coated. There doesn’t see to be too much happening on the roof of my mouth, but definitely on my tongue, throat and cheeks.