Well I’m doing really well, the doctor came around earlier and said that he isn’t going to change anything at the moment, my bloods are rising which is what we want after the dip.
The platelets in Orange they are not too concerned about dropping or my Bloods in red on graph. They can always give me a transfusion of blood or platelets if they drop too low. I will be having appointments every other day at Liverpool once I go home. Also if I need to have any more GCSF injections, I will be taking some home with me and they will give me a call at home to tell me to inject myself the night before.
I’m trying to drink a lot more which seems to be going OK using a larger glass helps. If I am only taking a few tablets, I am making sure that I drink a full glass of water with it as well. They wont let me out of the hospital until I don’t need to be on any drips of any kind. The only one I have been on regularly is the saline to get some fluids into me, so I’m being a lot stricter with myself to make sure that my input and output of fluids is going well.
So like my little graphs above, I’m full of mainly smiley faces :-)
Yippee!!
ReplyDeletehi sean,
ReplyDeletei stumbled across your blog, found it very informative and so well written. i am a caregiver to my husband, hugh, who was diagnosed with MM in sept., '09, here in the usa. he is 6 mos. post his 2nd (tandem) auto SCT, is doing fairly well with recovery, and is in CR. you have been through a great deal, and i wish you all the best in your recovery. the worst for hugh has been profound fatigue, but we hope we have what we think will help, after a consult with a urologist. hugh's testosterone levels are only 1/3 of what he needs to begin to build back all the wasted muscle mass. he is going to start on hormone replacement therapy this week - docs seem to think this will be key, along with physical therapy. we all have battles to wage with this disease, and it seems as though you are doing very well, and have come so far. your chronicle of what you have endured, the treatment you've recieved and how you are coping is a valuable contribution to all the MM patients and caregivers. and yes, from me, a registered nurse, keep up your determination to drink, drink, drink! i wish you and your family the best, and look forward to following your progress, sean. sincerely, karen
Thanks Karen, its good to know that my blog is being read and of use to other MM sufferers and their families and care givers. I personally will keep in mind the testostorone and hormone replacement if I start having the bad fatigue. It always amazes me when I read other blogs and they are running marathons after transplants. I would be thankful to be able to get up the stairs without being knackered!
ReplyDeleteMany thanks
Sean
you are so welcome, sean. we, too, often say to ourselves, "how do they DO that?!". just goes to show how MM and it's treatments affect people in so many different ways. i am not a blogger, so my only chance to tell a bit about what we've been through and be able to hopefully help others going through similar experiences is in the comments section. i would be so thankful if anything i wrote about would be of use to you. the testosterone issue is one that sometimes gets overlooked, although it seems more docs and patients/cgs are becoming more aware of it. one needs a urologist to do a PSA as a means of clearance - giving testosterone to a man who might have prostate issues would be dangerous, and could escalate prostate cancer if present. but if all is well, the replacement therapy could mean what we see as a new lease for those who suffer with profound fatigue, like hugh does. he found out he had MM after having his femur snappped completely in half. it has been a journey of pain, 2 surgeries to re-build his leg, and nearly 2 years of physical therapy. now that he's had the tandem transplants and has CR, we've asked ourselves, "What the hell good does that do if he can't go more than 2-3 hours without needing a l-o-n-g nap?". talk about quallity of life! he lost all of his muscle mass during the recovery periods, and the physical therapy Px'ed now is about all he can do. it's been so hard, so dicouraging. but now we feel poitively giddy with hope. thanks for listening. as an aside, i'm so sorry that you've had such a problem with getting your pain meds on time. i am a hospice nurse - pain control is paramount in my book. i hope that issue has been resolved and you are no longer suffering with needless pain. all my best to you, sean, karen
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