Thursday, September 26, 2013

More Struggles. Tranplant is so hard.

 
 
yes, yes that's disgusting  grey things :(
i told them today please change it but they said that "no, because this is the best and now you have a GVHD, if we change it, we cant handle with the GVHD :( " so unfortunatly i have to take them..
my kidneys are not very good nowadays creatinine is getting high day by day.. i just worried about this.. 

i wonder that why Mary-E still get immunosupresents? my docs told me that totaly 180 days you will get them.. 
and i have one more question my hairs still not come :( anything... it's nearly the 60. day but nothing.. is the immunosupresents can cause this?


  

17 Mar 2013 tarihinde 20:17 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:

There is a medicine they gave Mary-E that was big and gray and smelled like fish?  Is that it?  She only took it for a few weeks in the hospital and then they changed her to Tacrolimus.  She is now on Siroliumus.  You should ask for other options.  They don't want you to be sick.  The other thing is that she is still taking her immunosupresents with no end in sight. 
 
Glad you are home... Feel better.
 


From: Gülenay Gürbüz <gulenaygurbuz@gmail.com>
To: sally lanham <quilting_goddess@yahoo.com>
Sent: Sunday, March 17, 2013 10:18 AM
Subject: hi there again,

i think you are busy nowadays, :) i hope there is a good news..
i have a question;  during the 180 days i have to take sandimmun -neoral- medicine, (of course i have more and more medicines but the most important is that one they said)
was Mary-E also got the same medicine, and if the answer yes how could she overcome, beause i cant swallaw it especially is the smell is killing me my god.. sonetimes when i try to swallow i vomit all the things :(
is there any easy way that you can show me..
:/
FROM Gülenay Gürbüz TO You
 
hi Sally, 
i asked the doc. today but he told me that we cant change the protocol :/
min. 180 days this immunsupresant gonna be with me.. and also there is a lots of pills.. because of bacterias, because of viral things because of fungal things because of kidney becasue of heart, nearly 20 pills in a day, oh dear and lots of them gonna take 1 year he told me... said that "be friend with your medicines" i'm so sad.. because i hate to take them... 
i cant walk yet, i'm not strong enough to walk, just layin down as a flowerpot.. 
i miss my own house, my husband, my life.. but i understand that, it never be the same again 😔
how is Mary-E handle with it? what is she doing? is she at home always? and school? you didnt tell me anything about her social life..

  

19 Mar 2013 tarihinde 06:45 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:
 
Here is a link the doctor should be able to access.  This is from 2007 when they were just starting to do these transplants.  There is a much better result now because they have learned so much.  When Mary-E was first diagnosed there were not cord blood transplants. 
From

 

March 20, 2013
 
 
dear Sally
i haven't got any card yet :( i'm gonna give you my mothers address, as you know i'm at home but i have some IV so all of them takes 8-9 hours nearly.. so i have to lay down always... just going to wc.. thats it.. spring is coming, everybody at the outside.. sun is shinig and my today is lost.. i'm just living in the future ( its gonna be bla bla bla, i'll do bla bla bla) or living in the memories.. ( me and my husband were bla bla bla...my mother made a bla bla bla...) no today.. today bed, today iv, today medicine, today blood check etc.. pufh 😕 i guess i depressed..
how are you? how is Mary-E ? how is wheather? and also your psychology? i have to find something to do myself. learning a new language or musical stuff can be.. because i dont like tv and facebook to much.. time not passing with them.. if you have got any good idea please give me advice..
  

26 Mar 2013 tarihinde 16:55 saatinde, sally lanham <quilting_goddess@yahoo.com> şunları yazdı:
Okay this is the very hard part of this.  Every day you need to get up and walk one more step each time.  This is a very hard time.  Hope you are feeling better.  Did you ever get our card?  I have another to send you.  I need you Mom's address.




 



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