The day 100 weekend has been a little eventful and something of a backward step. Last week my platelets were low and I started to bleed. This led to a couple of days back in hospital until I could get some platelets and the bleeding stopped. Then this weekend my GVH (graft vs. host disease) flared up again – i.e. diarrhea. It seems my steroids had been reduced too far. A quick increase in steroids fixed the GVH. All this added up to further weight loss, which was disappointing. But, I also completed the 100 day tests. They included a bone marrow biopsy, blood test, lung test, bone density test and visit to the dentist. They took 14 vials of blood out of me in the blood test! Early indications from the bone marrow biopsy are all positive, praise God. So after an eventful week it’s been hard to see where the progress is. It isn’t in weight gain, it’s no longer in getting the steroids down, but the progress that matters is in my bone marrow. The stem cells need to multiply and mature and that takes time. Apparently cord transplants like I had are the slowest to mature, so I’ll be here well past day 100. So we continue to take each day as it comes, trusting God with the big picture, knowing that all his plans are good. Please continue to pray for some weight gain and good sleep.
Tag Archive: GVH
I continue to slowly struggle through this new thing called eating. My stomach has shrunk considerably after not being used for such a long period of time so it’s easy to feel bloated all day. I find I have to eat small amounts. I’ve been disconnected from the pole for a few days in a row, so that’s given me some freedom to go back to the unit with Mum and Dad. My sister arrives today for a week, which is a an absolute treat, so I’m really looking forward to that. It’s a long road but I continue to walk it knowing my loving Father who has set it before me for my good. Thanks for all your prayers. Please pray that my gut will settle down well and tolerate this food.
It’s early days yet, but perhaps the new drug is starting to have an effect. I’ve started with the very mildest of attempts to consume food – just a spoonful of jelly at each meal to test out how the gut is going. So far so good. I also had a good night sleep last night using a new sleeping tablet which feels like it’s transformed my life. It’s amazing how sleeplessness saps your will and a good night sleep brings a whole new lease on life. I think I’ve been suffering from sleeplessness for many days now, given the new energy I have today. So today is a good day and God-willing we’re turning a corner. Thank you for your prayers and pray that this new drug is kicking in and countering my GVH. Praise God that he is in control and all things happen in his timing. We take it day by day in the footsteps prepares for us.
My Graft Vs Host Disease (GVH), where my new immune system is attacking my bowel, continues and hasn’t been controlled by the steroid treatment, so now we’re moving on to a more specialized drug that specifically targets inflammation. It’s quite expensive, so they’ve left it till last and it may take a week before we know if it’s been effective. The main symptom remains diarrhea which continues, although the amount has reduced. I tried a clear fluid diet for about a day and a half but it became obvious that the bowel was not tolerating any food or drink and so had to stop again.
This is obviously disappointing news, but we take the good with the bad all from God’s hand and continue to praise him, taking it a day at a time. Nothing much has changed for the day to day life in the hospital. Tomorrow will be half way to the 100 day mark when I can go home. Despite all that’s happened it feels like it’s gone quick. Please pray that I can continue in a positive frame of mind resting on God’s strength and goodness, and pray that the new drug will have a decisive effect quickly, effectively blocking the GVH effects on my bowel.
They continue to treat what’s called graft vs host disease (GVH), where my new immune system is attacking my bowel, causing diarrhea. I haven’t eaten for over a week, being fed through IV. Each day is the same and has been a challenge to fight the hospital boredom. I have some pain from stomach cramping but the staff do well to help with pain relief. This is certainly the hardest thing I’ve done in my life. I spend most of my awake time now reading or watching TV in order to fight the boredom. I feel weak, but I know God is good and is seeing me through. Thank you for you prayers. It looks unlikely I’ll be out of hospital inside a week, but I’m learning patience and humility as I wait for the process of treating the disease to be complete. The good news is that my blood counts are strong now and I’m only receiving the odd blood product. Please pray that they find the right mixture of medication to counter the GVH and that I can have patience in the face of this boredom and weakness.
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