Day + 19: Farewell June

It's hard to believe it's July. Not even a month ago I was just getting ready to check in to the hospital. June sure was an incredible month. The weekend was wonderful....beautiful weather lured me outside several times, and mom and I even went to Eau Claire downtown and walked along the river, grabbing a coffee on our way out. Mom, dad and I ate outside a few times, and really just took it easy. My fatigue is quite significant and the nausea comes and goes so I really appreciate mom and dad these days - they make extra trips up and down the stairs when I can't get enough energy to get up. Overall though, I continue to improve and am amazed to be at home.

Yesterday I returned to Unit 57B for most of the day, getting bloodwork, fluids, tests and seeing Dr. Chaudry. He's all smiles these days. My blood counts continue to move further into the strong end of normal, and the pain in my abdomen is almost completely gone. He's made an appointment for me tomorrow with Dr. Brown in the Bone Marrow Clinic, where the plan is to snip my hospital ID band and actually discharge me to an outpatient status, which is remarkable for a Day +20 3rd transplant patient (oh yeah, they don't have another 3rd transplant patient to compare to!). No more hospital nights!

So now my primary challenge is having patience with the medications, fatigue, nausea and lack of appetite. I just have to remember not to get frustrated. If a whole day gets "wasted" on sleep and sitting, so be it. It's an investment in the next day. I only have to recall all the other things I have faced over the years to realize that this is a pretty easy challenge in comparison. I will enjoy every non-fatigue moment I have!

Happy Canada Day! Thanks again for all your support.

Day + 15: Moving back home

From this picture, you can see that I am again at home, with Daisy laying on top of the sofa above my head. A pretty wonderful spot to be. My pass home yesterday was of course amazing, although I had a lot of nausea, significant fatigue and basically drifted in and out of sleep the entire day. My stomach is having a bit of difficulty adjusting to food again. It's par (more likely an eagle) for the post-transplant course and it was sure incredible to be home in my bed or on the sofa while feeling yucky.

This morning I checked back into the hospital and was pleased to see all my belongings had been removed from my room and were on a cart. That's the sign that you're too healthy to be taking up a bed on Unit 57, and they instead move you to 57B next door, where they have 4 day-beds in unassigned rooms used to transition inpatients to outpatients. I received some fluid, had bloodwork done, saw Dr. Chaudry and had my medications refilled. The pain in my abdomen is virtually gone, and my bloodcounts are all normal. The watch now is for Graft Versus Host Disease (GVHD), and he let me go home until Monday, pending any new developments in my symptoms. Hard to imagine that I'll spend the weekend home, although now that I've tasted the "good life" again, it's equally as hard to imagine going back to Hotel 57.

GVHD occurs because the new marrow recognizes the new body as foreign and tries to attack it. A similar thing happens when an organ is transplanted - the immune system recognizes the new organ as foreign, and tries to attack it. The difference with a bone marrow transplant is that you are transplanting the immune system itself, and therefore the entire body is foreign. Where and what is attacked is unlimited and unpredictable. In both cases, anti-rejection or immune suppressive drugs are administered to limit the strength of the immune system in its attack. Gradually, these drugs are reduced if possible as the new marrow is accepted. Acute GVHD occurs in the first three months post-transplant, and can be severe. Chronic GVHD shows up after the three-month point but up to several years post-transplant. Steroids are often administered to counter GVHD when it arises, especially if it is acute, but some chronic GVHD does remain forever. In my first two transplants, I had GVHD in various forms - liver, skin, eyes, GI tract, and tendons. Obviously, if GVHD hits the lungs, heart or other key organs, it can be extremely dangerous.

There's your lesson on GVHD! I did write the above paragraph purely from my eleven years of experience with transplants. Feel free to investigate more reliable sources! Basically, the doctors will monitor the levels of the anti-rejection drugs in my blood, consider any symptoms I have, and adjust the dose of those drugs accordingly.

Today I feel a little less nausea and am VERY excited to be at home for the weekend, knowing there is no room waiting for me back at the hospital. Since it's really the Canada Day weekend, and the red and white will be flying everywhere, consider it a tribute to all of you, who helped me arrive at this point. Enjoy the outdoors, your friends and family this weekend! Cheers... Tricia