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Re: Hematologists
Oct 17, 2003
Thanks so much for understanding. I have moved on to a bigger Lovelace health center in the closest city. There are others, but these people saw me the soonest. I was pleased to know that the gyn I am seeing discussed me with her boss. The local loon who offered me sleeping pills and sent me away to sleep in a puddle of my own blood never consulted with anyone.

The reason I am thinking cancer is that it is one of the only routes not pursued yet. I have never seen an endocrinologist or a hematologist and my regular doc thinks hematology should be next. I did make some blood in the beginning, but I don't seem to be making much now. I am wondering if things slow down gradually. I was down to a hgb of 8 last winter two months before my bleeding started. I had gotten to 12, maybe higher, when I had my first epeisode of excessive bleeding. I don't know where I am now. They did a CBC before my surgery, but I didn't get the results.

There may be two reasons that she knows of that seem like puzzle pieces in all of this. They are not related to the bleeding at all, but could be related to concerns about some greater disease. About a year and a half ago, I got some bizarre illness. They tested me for mono and hepatitis and never got any results. They tested me for everything. I had a fever of 104 for 12 days and my liver functioning was elevated. My liver got enlarged so I couldn't eat. It went away, but I never felt as strong as I was before that illness. Then, five months later, I broke my leg very mysteriously. I broke my tibia right by the growth line while I was flying a kite! It was a straight break on a BIG bone. It hadn't twisted and I didn't trip. I was just running with a kite on a soccer field and my leg broke. Four months later, I was carving ice and asked for a blood test and that is when I learned that I was anemic. Two months later I started to bleed.

I think this new doc has been fairly aggressive in trying to stop the bleeding. She has followed the protocol for women my age, but it hasn't worked. She keeps putting me on higher doses of bcp's. Starting high and tapering off is standard, but it hasn't worked as soon as I start to taper and that has to be a sign of something wrong. So, she did the D&C and hysteroscopy and apparently found nothing. After my uterus was cleaned out, I continued to bleed through 10 - 12 overnight pads a day.

I have always been in favor of adoption. I'm not that maternal yet and maybe I will be one day, but will I live that long if I hold on to my reproductive organs? Will they work after all of this? And, will I ever be able to leave my house long enough to date? Or get a job? The world is full of special kids that need love. And, the bible says that women without their own children are mothers to all children. I know I would have to get counseling before I could get surgery, but I am convinced the shot is a greater risk.

Long story. I keep spreading it around in the hope that someone will see something significant.

Thanks for sharing with me.
Re: Hematologists
Nov 23, 2003
It definitely sounds like our cases our similar * in that we've just completely baffled the medical community. I've almost given up hope on anyone finding out where the bleeding is coming from (even though it seems like a reasonable thing to want), but my new GI doc in SF seems to be pretty good, and I really like his approach (although not the surgery part of it)...but at least he has a plan for each possible outcome and isn't taken the same "wait and see" approach the other GI doctor was. You know, I've always wondered what exactly they're waiting for when they say that * for me to fall over one day from lack of oxygen? Anyway, I could go on and on about how much this irritates me, and how frustrated I am with all of this, and how I just want my life back...but I won't because I'm sure you know how I feel!

So what exactly does Lupron do? I'm really not familiar with the process you're going through right now, so if I ask questions that seem simple that's why. I think I mentioned this before at some point, but earlier this year my mom had a hysterectomy, but she had already gone through menopause so I'm sure the process is a little different for you. It sounds like you've found a good doctor outside of your town, although it's too bad it's so far away.

I'm hoping to get the results from my test early this week, although I'm not really expecting anything very different from the last time (slightly pessimistic, I know!). The test itself is actually quite interesting....you have to swallow a camera that's a bit bigger then a vitamin and it's got flashing lights going as you swallow it (which just goes against everything I was taught as a kid...you know, to not swallow any strange objects, especially things that are flashing...). But anyway, the camera has a battery that lasts from 7*8 hours and films as it moves through your digestive system, mainly the small bowel. The battery eventually dies, and the camera just moves through your system even after the battery dies (just like food would). Then the camera exits through a normal bowel movement....I don't actually have to retrieve it (thank god) but I do have to confirm that it's left my system....and I'm still waiting. Last time I had this test, the camera was out the next day....this time it's been 4 days....they said there's a small chance it can get "stuck" and they'd have to go in and get it, either through endoscopy, colonoscopy, or laparoscopic surgery, depending on where it is. So we'll see....I have faith it'll come out on it's own.....

I've had to change my T*day plans a little this year....last year my younger sister and I did the Run to Feed the Hungry in Sacramento and then made whatever we felt like eating for dinner, with some good wine :) We were going to do the Run again this year, then volunteer at a women's shelter in Sac and serve lunch, then go home and make our dinner, and sit around in our sweats and drink wine and listen to Christmas music! But, I think we'll just work at the shelter and then cook dinner...no 5K run this year :( It's interesting because last year around this time is when I found out I was anemic....I did the 5K run on T*day and was really winded/exhausted, even though I had been working out consistently before then, so of course I made myself work out a little harder after that, thinking I was just really out of shape. The week after T*day I had a regular appointment with my primary and she did labwork, and was really surprised to see that I was "severely anemic", as she put it....and here I am today, still anemic....

Ok, well I just rambled on for while so I'll stop for now :) What are your plans for the holiday? It sounds like you're a pretty good cook so I'm sure you've got something planned for the holiday! How often does your mom have bead shows? My older sister loves to shop at the bead stores in Berkeley, although I've never actually seen her make anything with the stuff she buys! I hope everything's going ok...and try not to use up those new red blood cells all in one day!! :)

Adrienne~
Re: Hematologists
Nov 23, 2003
Hey girl,

I am so sorry about your T-Day plans. It really sounds like volunteering and cooking will be a very full plate for you, without the run. I used to spring, but running has never been for me. Our plans aren't too big. My mom has had extra to deal with since I have been sick, so the motivation around here is a little low. We did a huge mexican dinner for my grandfather's 75th birthday last month (wow was that only a month ago when I bled all over his couch after my surgery?). Anyway, we usually have that stuff plus turkey for Thanksgiving. This year, we are just doing the turkey and a few pies. My mom is so funny, she always does a huge turkey. We have a 22 pound turkey for just four people. Of course, we will have guests later in the day for pie, but only four for the meal. I have seen cool things to do on the food channel, but Thanksgiving is about tradition. I'd hate to change anything from the way I have always had it.

The next day is our big local craft show, so I will be saving my energy for that. I am also going to sell some baked goods. I'm just making everything we give out anyways and putting it for sale so that maybe it will all pay for itself. It's one little thing I can do to contribute, in addition to making a few beaded items. I also made some cool gingerbread houses that look like adobes. I used caramels to make luminarias which are the local style of Christmas lights made out of paper bags and candles and I used tootsie rolls to make vigas which are the big wooden beams that stick out on the edges of adobe buildings. I even added a little bread oven on the outside.

We are doing six shows this season. We did two last year before Easter, but the Christmas ones are the big ones...especially the one on the biggest shopping day of the year. We make some cute angel earrings and pins that people like to buy as gifts.

Lupron is a drug most people don't know about. It will block my natural estrogen and send me into menopause...sounds fun, right. Hopefully, my bleeding will stop eventually and I can make enough blood for the surgery. Plus, it will help draw out some of the blood in the uterus so that she doesn't have a bloody mess in the OR. I guess the odds of getting hepatitis are pretty high and she doesn't want to take my uterus and give me that in exchange.

I started to realize I was anemic about a year ago, too. I broke my leg in October and then I started PT. I thought I was so out of shape when I started the therapy. I was shocked at how fast it all goes when you spend a few weeks stuck in bed with your leg elevated and iced. I started putting things together - like my pathological ice craving - and figured something else must be wrong with me. So, I asked for a test when I had my pap in February and my hemoglobin was at 8. It started to climb so quick after I got on the iron. Who would've ever imagined it would get this far?

I sure hope that little camera found something. Then, maybe you can skip straight to the corrective procedure and skip all of those other diagnostic ones. If that happens, you will probably be in the OR before me. I guess you will have to travel for yours, too. Maybe they can fix you and find the camera at the same time. How long do you wait before they go in after it? How about your throwing up - has it gotten any better?

Wow, another epic post. It is just so nice to have someone who can feel the fatigue to share it all with.

Let me know when you get your results.

Nik
Re: Hematologists
Nov 29, 2003
Hey Nik, how was your holiday? I hope your huge 22 pound turkey turned out ok...I'm sure you've got some leftovers for a little while now! My Thanksgiving was good - like I mentioned before, I didn't do the 5K run this year :( but my sister and I served lunch at a women's shelter (which was a lot of fun), and then went back to her place and made our dinner. We had a couple of friends over, had some good food, good wine, and good dessert...all in all, a good day!

I also got a flu shot last week - my doctor literally dragged me into the lab room for the shot, telling me the whole time how I was in the "high risk" category. Her and the nurse thought my fear of shots was quite funny, considering they draw my blood ALL THE TIME and it doesn't bother me. I tried to explain that it's just shots I'm afraid of, but by then I was in the corner of the chair and almost on the floor trying to avoid the needle...I'm sure they have an easier time giving shots to 8 year olds! Speaking of shots, how is the Provera shot working? You mentioned you're starting to feel the effects of it....did they tell you what to expect from this? Is it going to be similar to menopause? Has the bleeding at least slowed a little?

I haven't got the results from the capsule test yet. I get so frustrated at this whole process....the doctors take forever to get test results back to you, and you would think that with the holiday weekend they would at least try to talk with you before the long weekend! It's not like I just had the test yesterday....grrr. I'm just all too familiar with this whole stupid process....you get a referral for a GI test, they schedule the test for about two weeks later, then you wait at least a week to get the results, then they tell you the next test you have to do, and the process begins all over again...and here I am, a year later and still anemic!! Oh, and still no sign of the capsule, but I think it's "exited"....I've been pretty regular if you know what I mean, and I don't really want to get into too much detail here, but it's a little hard to monitor bowel movements in a public restroom....so anyway, I'm sure it's left my system at some point.

I just learned a huge lesson today, the hard way....a couple of weeks ago when my hemoglobin had dropped and my doctor had told me to be on "couchrest" as much as possible....well I did my best to follow that, but I really didn't want to miss that much school so I went to my statistics class that week (just one night from 6-9pm)...I just didn't think that was a good class to get behind in. Anyway, I knew I was pretty out of it that week, and I only stayed for half of the class since that was enough activity for one day. Well I was talking with one of my classmates tonight about our final report that's due....I thought it was due this week, he said it was due on the 11th...long story short, it was due this week but my prof changed it the night I went for half of a class....I looked back at my notes, and I had written it down the date change right but didn't remember a thing about that class at all!! I looked over the rest of my notes and it was a complete blur....I would've been better off not going to class and getting notes from someone else - someone who was coherent the entire time!

Sorry for venting so much here...this is all just so frustrating and I just can't wait until it's over, or at least until I'm on my way to a solution!

Well, I hope all is going well with you. Do you have any appointments coming up? Hope you had a good holiday!

Adrienne





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