Friday, 27 June 2008
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
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17 comments:
Whoo-hoo!! Happy weekend to you Tricia and a wonderful reason for all of us to say Thanks.
I'm at my meeting so I have to whisper, but I'm cheering in my heart!
Love you!
Marcia
Hi Tricia,
I echo Marcia's "Whoo-hoo" and add a Calgary Yeee-Haw! Now, we'll be praying about that GVHD and focusing healing energy that way. Enjoy being at home this weekend, and know that we're always thinking of, praying for, and loving you. May you feel more rested and less nauseated moment by moment.
Lots of love,
Bob & Mary Ellen xoxoxoxoox
Whoo-hoo!! Yippee!!
Way to go girl, enjoy your Canada Day Weekend!
Dear Tricia,
Thank you again for keeping us informed and up to date. We are delighted that you will be home for the weekend and for Canada Day and we will be holding you in our hearts until you are safe and healthy again.
Love, BJ
Continue to spoil us with all this good news!!! I am wondering if you are craving Froot Loops yet... ; )
Love you,
Holly
Hi Tricia...enjoy your week-end !!!
You are an awesome Warrior!!
Gentle Hugs...
Carol
Wonderful,wonderful news!!! Enjoy your weekend with your family, friends and good food. Thank you for keeping us in the loop. Our thouggts and prayers will continue along your journey!!
Sheree Martin
Happy Canada Day weekend at home Tricia! The whole country will be wearing red & white for you (well, many of us across the country and beyond for sure!) We are thinking only positive thoughts for you.
Love, Michele & Brian
Outstanding news Tricia, you have made my weekend before it even starts. Lots of love, prayers and Qi.
Ed and Deanie
How great ! How nice !
I love the fact that you already have a "transition room".
Now, like the young lady in her red shoes use to say,THERE'S NO PLACE LIKE HOME.
What a dream to be home for the long week-end.
I just love the lesson on GVHD from what I think is an expert in the field by now.
Enjoy peace and rest on this great week-end at home.
All the best
George and Dominique
Isn't that just the perfect picture to accompany your news about moving back home? You look wonderful; and Daisy's relaxed position, as close to you as possible, says it all .... Welcome home, Tricia!
Thanks for the lesson on GVHD written by one who knows this disease from personal experience. I can't help but think how aware you and your medical team have to be to distinguish between the adverse symptoms you are already experiencing and any new ones that may be occuring. You must really be tuned into every part of your body to notice changes that may signal a new attack - somewhere, anywhere. Your doctors have to know you "inside out", too. This seems like a particularly watchful time during which communication and quick action are essential.
We were thrilled to read that you are "too healthy to be taking up a bed on Unit 57", Tricia. The hospital's set-up for transitioning you from being an inpatient to becoming an outpatient sounds cautious and practical, though. We are hoping that your next stop at 57B is not until Monday, as scheduled.
Here in Scotland, we will do all we can to enjoy the Canada Day weekend. For sure, we will raise a toast to LIFE. We give thanks that you are at home, with normal blood counts, experiencing less pain, feeling a little better, and paying tribute to your Red and White army.
Cheers to you, Tricia!
Louise and David
Yay Tricia!! I am so happy to hear that you are home and I pray that you have lots of relaxing time to rest, continue healing, and soak up the beautiful sunny weekend. Too healthy to take up a bed!! OMGoodness!! Yippee!!!I love the picture that you posted and am thrilled to see you at HOME!
Hugs and love.
Barb
I'm breaking my no internet on vacation rule just to say "SWESOME NEWS" I'm so excited. Heather, Chad and I are all in Fernie and we're wishing you a very fantastic Canada Day!
I shared your Blog address with my Grandma and she had this comment: "I finally got around to reading Tricia's blog this afternoon. She is sure a brave and positive girl and I admire Brandon, too. Greater love hath no man, eh? "
I thought I should share it with you seeing that's its about you!
Take Care Tricia , you are AMAZING, AMAZING, AMAZING !!!!
I can't start to explain how wonderful it is to turn on my computer, rush to your blog and see positive news each time I visit.
Thanks for the lesson on GVHD. Your explanations are so detailed and it is great to understand the challenges that you face more thoroughly. I have to say that you should write for Wikipedia, since your explanations of each of your challenges make more sense and are more detailed than what is posted there ;)
Happy Canada Day! Cant wait for your next post.....
Hello,
Way to go!!... enjoy your weekend. We are so happy you are home for the weekend.
Love Jenalee
Happy Canada Day Tricia!
Just popping by to send you my love and positive thoughts on this beautiful Canada Day! I hope that your weekend at home has been a good one and that you continue to feel better each day.
Lots of love,
Barb
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