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Re: Hematologists
Oct 27, 2003
Hi Nik - I'm glad you were able to get a referral to a hematalogist...hopefully you'll be able to get in to see one soon! Have you heard back on the labwork you had done last week? Since your doc has been on vacation, I'm guessing you haven't heard yet - it can be so frustrating when they go out of town..it's almost like we're stuck in limbo in this awful anemic state (although I really can't even imagine what being at a 6 is like!).

I haven't heard from the GI doc in SF yet, but he's supposed to be back in his office tomorrow so hopefully he'll call then or Wednesday to set something up. I was supposed to see my doctor this morning but she was stuck in LA (due to the fires) and couldn't fly back up north until later tonight. I did talk with her partner, who told me that my hemoglobin went down again (by 1.1 points!!)in a week, and wanted to know when I'm seeing the specialist in SF. I explained to her the situation, and mentioned that I was throwing up again on Saturday. I know she'll be talking with my doctor soon and hopefully they can get things moving in SF faster than I can. It's nice because although I live in the Bay Area, my doctor and her partner have a small practice and a small staff, which is good because they all know me and what's going on...I don't feel like I'm being passed around to the next available doctor or nurse.

As for the anemia being related to the eating disorder....that was what my doctor had originally thought. The routine labwork she ran a year ago was done about 2 months after I had been home from treatment and was just to make sure things were still ok. My weight is fine right now, and was back then too (although honestly it's a little hard with this GI stuff going on), but she thought that I might have problems absorbing vitamins, iron, etc, so I took iron supplements for about 4-5 weeks and my hemoglobin still went down over that time. That was when they tested for occult bleeding (and I was positive 3 times in a row), so I began the GI testing. The GI doctor took several biopsies from my stomach to see if I did in fact have an absorption problem and it all came back negative. Actually, the GI doctor that's been doing the testing was the same one that treated me when I was in the hospital just before leaving for treatment so he knows my entire history as well. And, my primary proceeded pretty cautiously with all the testing since she wanted to be sure it wasn't related to the eating disorder. I've talked about this with her, and she said (along with my hematalogist) that the IV iron would have taken care of any absorption problems if that's what the cause was. I was hoping that was all it was and I could get on with my life, but unfortunately I guess it's not.

So how was your walk today? Is the weather getting cold there yet? We're having one last heat wave and it's been in the lower 90's here since Friday...unfortunately it's supposed to cool down to normal fall weather by the end of the week. Speaking of walking - I was shopping this weekend with my mom, and I suddenly just felt exhausted (of course not from any physical activity, from this stupid anemia - I'm sure you know what I'm talking about), and I felt the urge to just sit down in the middle of the store and rest. I didn't though since for whatever reason there were millions of kids out at the mall and it was just too crowded...but that's so pathetic! I can barely make one lap around Macy's now....and as I type this I've got my yummy Ensure next to me to drink!

Well I think this post turned out to be really long, but I hope they start finding some answers for you! Take care,
Adrienne
Re: Hematologists
Oct 31, 2003
Hi ladies! How's everyone doing? Nik, how's the provera working? I hope your appointment next week is helpful. I heard from the GI doctor in SF today and he wants me to do the capsule endoscopy again. I had that test earlier this year and the results were inconclusive since the camera got "stuck" in area of my small intestine and that's where the battery died. Apparently in normal people the camera should be through your small intestine in about 4 hours....the camera died after about 7 hours and it was still trying to get through the same area. I'm glad that at least the doctors are moving forward, but I really hated this test! I know, there are worse tests out there and at least there was no prep for this like in the colonoscopy, but I was on a clear liquid diet the day before, no food after midnight, and I couldn't eat anything the next day until 4 hours after I swallowed the camera. Even after I was able to eat, it was from a very small list of foods that was essentially an expanded liquid diet with some soft foods. I had to stop taking my iron supplements 5 days before the test so I was exhausted by the day of the test, although that shouldn't be a problem this time since I've been getting IV iron instead. I remember being so exhausted that I didn't even want to walk to my car to sleep (which was only just over in the parking structure) so I found the closest chair in the downstairs lobby and slept. Ironically, before the test I was worried about whether or not I'd have enough time to do some shopping in Union Square and make it back in time to turn in the waistbelt...well, that wasn't an issue since I never left the hospital!

Sorry for complaining so much...I think I'm just frustrated with all of this, especially repeating some of these tests again. But, I also saw my GP today and she showed me a chart she's been keeping of my hgb, hct, ferritin, and all the other iron values....it was actually a little scary to see the pattern of things over these past few months! I've known that things have gone up and down, but to see it on paper like that was different. I'm just hoping I can hold things together long enough to get through my trip to North Carolina next week and meetings with the Ph.D. faculty at UNC! I'm really excited about their program and the school, but you guys all know how tired you can feel sometimes with the anemia, and I would hate to appear as though I'm really not that interested or indifferent to what they have to say! Not to mention the possibility of having to make a "graceful" exit from the room at some point to throw up since that's still happening randomly each week :(

Well have a happy Halloween everyone! Take care,
Adrienne-





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