We'll see where it all goes from here. But here we have a start. We are blessed to be where we are now. Thank you all for helping us to research trials using the drug, for every link, form, phone calls made to Pfizer on my behalf. It wasnt going to be an easy process but its great to have that rock lifted off your shoulders knowing the drug IS there. So sunny day indeed.
FINDINGS so far from Bronchoscopy done on Jan 5, 2010
1. Positive for influenza A -- Tamiflu started on Jan 5
2. Negative for CMV IgG --Valganciclovir terminated on Jan 10 -NOT CMV
3. Early evidence of fungal infection in lung --Voriconazole started on Jan 10
So those are some underlying things going on in my body, and BOOP, it seems it is no more?, I am being weened off prednisone (25mg now).
Today marks 2 weeks since Konrad and I ventured out of our house, confused and exhausted, to get me admitted to hospital. So much has happened since then.. So many emotions, but for me I have mostly just been holding on to the rollercoaster ride (and I hate rollercoasters!). The chills and the headache and the fevers, and then I'm just left to ride it out, round and round the day. At 40 C I dont know where/who I am.. at 38.5C a little better and start removing warm blankets and getting wet face cloths/body cloths.. by the time 37.5C comes, I am barely able to smile the ride has passed and just hope.. I'm READY to make this stop. I will update with what we find out at the clinical trial meeting.
To my shock, my weight was down from 47kg on December 1 when starting Prednisone to just 40kg yesterday.. I know I need to force myself to eat; but in past day or two I have been eating a little more.
On brighter note, in the last 2-3 days I have been able to get out of bed with less and less assistance. My New Years Resolution. Its scary for me to see how shaky I am on these legs now, so much muscle gone already from lying in the bed with fevers most of the day. When Karolek came on Saturday he motivated me to make one such walk down the hallway. I observed him, he pretended we were being sneeky and quiet and so walked on his tip-toes slowly alongside me ;) He proudly shouts 'hi guys, bye guys' to whoever's at the nursing station when we leave the hall and go back into my room.
As a side note, both Konrad and Karolek are on Tamiflu as well, preventative (for anyone interested, there is an influenza A outbreak). Karolek started getting fevers just before the weeekend and they would come and go it had us worried, he's doing much better, but to be on the safe side Tamiflu for him as well. It breaks my heart I was not home with him, Konrad called asking what I give him when he has fevers, I love that I can still be part of it all I just want to get out of this and snuggle up and share those germs of his when he's sick, worryfree ;)
Paulina, Konrad and Karolek
It's so important that your closest family and friends get a flu shot each year.
ReplyDeleteDid you try Ensure or Boost between meals? There is also this yummy natural fruit snack from Dole, no sugar added. Approved by Heart and Stroke fundation. It comes in pouches, the fruit is pureed and you can squeeze it out of the pouch as needed, it closes with a cap, so you can eat it when you feel like it. It's intended for kids so I'm sure your little son will also enjoy it. The name is "fruit snack" from Dole, I get mine at Sobey's.
This last post by Anonymous who shops at Sobey's does not belong here. Do your posts at the Sobey's blogs or contact your shrink.
ReplyDeletePaulina, your spirit is so strong! You're obviously still an inspiration for your son, and I'm sure he is to you too! I hope things go well on Monday with the specialist. You're in our thoughts,
ReplyDeleteLakha and Michal