My numbers have been ranging 0-2k for the last three weeks. I just finished my 4th session of rituxan last week, I get Nplate once a week, and have recently started cyclosporine. Any thoughts on this? any suggestions? I've been in the hospital nearly 6 weeks, I have had 2 nose bleeds in the time of being here, very minor petechiae, and no bruising. Is there still a chance the meds are going to kick in, anybody else take awhile? thank you
Im so very sorry that you have been in Hospital for that long. I was fortunate in that I was only for 6 days followed by 5 days at home then back in hospital for 4 more days when i received my first Ritux treatment and nplate injection.
I hope that you have been able to have things and personal effects brought in to you. They were not permitting visitors when I was in because of Covid so luckily i did remember to have my phone charger with me. I was also able to Door Dash some items to the front desk that would be brought up to me. I ordered disposable razors and shaved(very carefully even though I was not supposed to) on the fourth day of my first stay in hospital. Nurses noticed immediately that I had shaved and I was told to not be naughty and do what I am told lol
Hang in there, it took my 4 Ritux treatments a couple of weeks after the final infusion along with weekly Nplate before I saw any positive results with my platelet levels
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Splenectomy this early is totally against protocol. "If possible, splenectomy should be delayed for at least 1 year after diagnosis because of the potential for spontaneous remission in the first year." You can find the latest guidelines here pdsa.org/journals.html.
May I suggest you ask your haemo some questions regarding them. The responses will indicate whether his/her practice is up to date.
Platelets are 0 today, I chose to hold off on the vaccinations for the splenectomy for now. Going to give my body and the meds a little time, they are giving me a platelet transfusion today, overall feeling good and will probably walk off some stress shortly. Thanks for the replys
hope you have an area outside of your hospital room to walk. For some reason they put a fall risk band on my arm and turned the hospital bed alarm on that would trigger if I got out of bed during the first 4 days of my first hospital stay. I insisted that I was fine and could walk to the bathroom to take care of things when I had too. It took my 4 days to convince the nurses that I was perfectly fine to do so and I convinced them. Luckily I had a long hallway without much foot traffic down at my end of the Cancer Ward so I was walking up and down that hallway throughout the day staring out the window at my Miata that I could see in the parking lot wishing to be out there, having a smoke and a Monster. Dont worry. You will get there soon yourself. Hang in there
Luckily the doctors got orders that let me go outside to the healing gardens, I am also allowed to walk the halls of the floor I'm on, So i guess it sounds like i've got it pretty good! haha I sure miss my family and truck though! I also started working over the computer, so that has been keeping me preoccupied. Really appreciate the replies. I'm learning more and more every day about this disease reading the different discussions. Nplate Tomorrow.
thats awesome that you are able to work some over PC and have a nice out of doors garden to walk and get some fresh air. You definitely deserve having been in as long as you have. Whats funny is that I had never been a patient in a hospital. Not in all 54 of my years(well did have tonsils removed as a kid). I had zero experience. Have to say. I was impressed with the breakfast, lunch, and dinner menus at Riverside.
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