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Updates Continued |
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| I guess my team of doctors will not risk my progress with any changes for now until we are done with the remolding of the house.. I asked does everything have to be done because Gary has done tons.. My house looks great.. It's just a few things left but they are the big things too.. my bathroom is almost done & we have everything for it, just gotta get it done.. Gary works long hours ya know so he's trying bless his heart.. I feel so bad for him the way he works his butt off for me.. All the wood flooring threw the house & the bathroom upstairs hasn't even been started... The counter in the kitchen & to paint the ceiling in the kitchen/dinning room is all... All the doctors agree that my medication is hurting my liver, kidneys, blood & stomach.. But at the same time I can't come off them or even have them decreased for now... Grrrrr I'm so confused... When I was in St Louis last month they told me & Vicki that they would start to decrease my meds.. Now they wont till the house is done.. Oh well I just can't catch a break.. We also have to yet find someone to install the Air Purifier that was donated to us.. All 3 of my medical team are all in agreement that right now... at this very moment we must have the perfect combination for what my plan is for my lungs.. So there fore they are not willing to change anything.. I guess it just reminds me of what a gal (who I miss) from TX Support said all the time "Suck it up princess" So as of right now we have made great strides in improving the quality & length of my life.. With the start of the Fresh Air purifier we purchased from my niece Heather's husband Kris (please contact me if you are interested in this awesome machine, it's worth the free trial on it, trust Gary & me on this) then the almighty removal of the mold from our house was a big project, but 80-90% done. Then the remodeling project is going good.. My medications are strong but they are working.. I do have some side effect issues but they are not un-manageable. Were dealing fine. And the Oxygen therapy with Exercise... It's all a great package that seems to be working for now. So there you go... I'm sure I forgot tons.. but you get the point... Again not a horrible day, but would have been great to get a better report.. Just frustrates me that when I feel better I should be & come to find out I'm a little worse even just floored me :( But on the bright side.......... I'm doing fine, breathing is still going good, my God still has a plan & He is still the boss man!!!!!!!!!!!!!!!!!!!!! I do have to wear my O2 a bit more then just while sleeping.. Like I rest on the couch often.. so I'm back on the hose somewhat. I went with hopes of decreasing my prednisone &/or cytoxan with no luck.. then they add another medication for my nerves/sleeping & pain.. The doctor doesn't think I am sleeping as much as I think I am.. well resting I mean to say. So he has added Amitriptyline to my med list.. And placed me back on the Prevacid cuz the other stuff didn't work. I need to remember my mask more & go out less during the cold months.. Dr Wong agrees that I don't have to use the O2 24/7 & to watch my O2 with the oximeter & I will... so there you go.. I hope this finds you & yours warm, safe & healthy!!!! I'm sorry this is so long & feel free to holler if I confused you beyond help... Lord knows Gary & I are very confused & I'm sure I forgot tons of stuff.. I'll take some snow now please with less ice this time............ |
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Feb 1st 2005
Some of my test are back..
Dr Wong called this morning & said...
white count 2.5
hematocrit 13
Iron 2
BP has been 80's/60's for 11 days now.
I have PFT/Stress
Echo
Contrast CT
tomorrow @ West
if things don't look better in a week several things could be a possiblitiy... another lung biopsy (to see what's going on) another bronch (also to see what's going on) another blood transfusion. So that's all I know for now.. They have decided to lower my Cytoxan (the cancer med) by 25 mg, so now I take 75 mgs a day instead of 100 mg. They are wanting to re-do the blood work in a week before they make up their minds as what they are going to do with me.. Dr Wong also has to talk to my tx center in St Louis before he can do anything.. So it's a waiting thing.. I'll let you know information as it's told to me.. Dr Wong didn't mention my liver ensymez, so I wonder if they wern't back yet.. Cretia said sometimes they don't all come in at once. Aanyway.. Thanks for your prayers & support.. |
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I came home tonight to find a msg to call Masina.
She is my transplant coordinator in St Louis..
So I called her & she said looks like April 18th (that week) I go back up for re-eval testing to see where I'm at.. She informed me to come prepared to look for a place to live & get ready to move. She asked what all test I'd had done lately & when. When was I at the hospital last.. doctor last.. stuff like that.. She needed all my meds updated, so I did that.. So it looks like were ready.. NOT So Gary and I were smacked in the face that this is going to be a reality very soon... Of course I had a melt down... Cried allot.. Gary just held me & said "we knew this was coming & we will get threw it" I'm just not ready.... I am freaking out..... I hate being alone, I am still wondering where all the money will come from that we will need.. Again Gary said "God knows what He's doing & He knows how this will all pan out" After talking to my Aunt Robin, Judy & Chris.. I did feel a little more calm.. But WOW.. it's so overwhelming..... So now you know what we do... Please again, keep us in your prayers.. God brought me to this... He's going to see me threw it, I know it..... Ohhhh one other thing I do need... when I go in a few weeks I will need a list of who all will be willing to help with my after care.. Once I move down there I will be fine alone before (wont like it - but I can do it) but after my transplant I can't be alone.. They wont get me ready with out a tentative list of who all would be willing to help us.. Obviously I would choose my Gary any day.. But I have to be realistic.. He has to work.. He will stay with me as long as his boss will let him once I am out of the hospital.. That's when I feel I will need him most. So if anyone could or would be willing to help us out it would be greatly appreciated.. few days here week there.. whatever you can do would be great. I'm sure my boys will help too, but there is only so much they can do... I think most everyone knows I'm having issues with the whole "needing help to the bathroom" aghhhhhhh I just freak out thinking about it.. a few people I have met & spoke to about after transplant assure me I wont care.. So we will see cuz as of now I do.. LOL Anyway, I again thank you in advance for your prayers & thoughts.. We love you all more then you know..
xoxo
Windy & Gary |
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