another blood transfusion...

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CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/20/2007 10:01 AM (GMT -7)   
hi all! unfortunately things continued to worsen for me since my last email in regards to my blood work and i had to go in for another blood transfusion yesterday. i got all but 10 cc's of 2 units of blood. i spiked a fever of 101.1 so they discontinued the transfusion. it is normal for your temperature to go up, but not to that level. they gave me tylenol and held me until my temperature came down. i felt it truly break last night when i was sleeping as i woke in the middle of the night covered in sweat. aside from being a little tired still, i feel good this morning.

to get a better idea of how quick of a turn around i had, here are the results of my blood work from the last month:

August 14 September 4 September 14
hemoglobin 10.3 8.9 8.6
hematochrit 31 28.6 27.1
WBC 4.9 3.2 2.0
RBC 3.62 3.57 3.54


so even my GI doc is confused about this. i am still waiting for authorization from the HMO to see a hematologist. perhaps this doctor can provide some answers. kinda odd how all my numbers dropped rather dramatically in 4 weeks time except the reds. makes me wonder if being on 6-mp (purinethol) for so long (since 1995) has something to do with it seeing how it is a cancer drug. probably not the best idea to be on it long term. at least i've cut the dosage in half since this anemia problem first appeared in june of this year. or perhaps it is from long term use of remicade as well? i began taking that drug soon after it became available and only stopped taking it in december 2006 after i felt it was losing its potency and it seemed i no longer needed it since the benefits of the makers' diet was kicking in. it has only recently been released that one should not take a drug such as 6-mp concurrently with remicade due to adverse side effects. whoops. hopefully my bone marrow is not screwed up from this stuff. but then this could be doomsday thinking - who really knows what is going on and why did it start now? at least i am still feeling fine in regards to crohn's. hopefully worst case scenario is i get weekly iron infusions and b-12 shots for a while.

oh yeah, when you are anemic your b-12 levels are normally low too. i that test added to my standing order so on september 14 they were reported at 332. my GI doc told me normal is between 211 and 911. that is a huge range. i also found out that in europe the range is between 400 and 1000. so here i am considered normal but in europe i'd be considered low. well, good thing i started taking a b-12 supplement like 3 weeks ago which was prompted by my own research into vitamins.

so far i havent been to work this week. i was fine until late sunday night when it hit me all of a sudden and i knew i was in trouble. but with this latest blood transfusion perhaps i will feel up to it tomorrow. just been feeling really really fatigued these last few days.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 9/20/2007 6:52 PM (GMT -7)   
Hope you're on the upswing soon Harry...wishing the Hematologist gets you straightened out. I worry alot about doing the imuran & remicade in the past and now the imuran & humira cocktail! I'm severe to moderate and a year and one month out from my first resection. Have not seen remission yet. I am more functional overall than last year this time. Keep us posted!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


megamax
Regular Member


Date Joined Apr 2007
Total Posts : 217
   Posted 9/20/2007 7:01 PM (GMT -7)   
I hope you feel better soon...harry what the maker's diet? I am going to google it !!!
Megamax
 
 
35 yrs female, dx with crohn's on july 13th 07 increasing my  entocort 9mg . starting imuran 250 mg  pariet ,dx with depression in 2002 ,effexor tappering off, welbutrin,resperidal and lemotrogine.
 
 


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/21/2007 5:10 AM (GMT -7)   
Harry
My now 13 yr old daughter had leukemia and was on 6mp for 2 yrs. Sometimes like you her counts would bottom out if there was a viral or bacterial infection. Did they do cultures to check for infection? If you wbc gets to low there is a drug called GCSF that can boost it temporarily to help you fight the infection. Even a small virus can lower the counts this way. If your wbc gets lower than 1.0 I would ask about the GCSF they stimulate the wbc and worked every time for my daughter.
Hope to hear you are doing well soon!
Chris

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/21/2007 5:04 PM (GMT -7)   
megamax -

i encourage you google and do all the research you can on the maker's diet. it worked for me and i know it has worked for others. but it is quite intensive at first as you go through a detox phase. but stick with it. after that is easy sailing once you learn how adjust your eating habits and eat properly. but it takes time and discipline.



nikki0249 -

thanks. i'll keep in the memory banks in case i get even worse. for some reason i dont think i have an infection since i feel ok, especially now that i got a transfusion (again). i would think that if i had an infection of some sorts my whites would go off the chart high in an effort to fight it, but then i am not a doctor and it seems your daughter had the opposite response, so who knows. they havent done any cultures to check for an infection. i'll bring that up when i see the hematologist. my referral went through so hopefully i'll get in to see this doc in a week or two, depending on the availability of course...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon

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