Can you tell me what tests hematologists run? What have yours looked for and/or found?

My PCP thinks that my gyn problem may be something that should be evaluated by a hematologist. She tried to refer me once before and the local guy looked at my chart and said that I should go back to my gyn.

I'm really more interested in advice about hematologists. I'm guessing the main concern would be leukemia, but I really know nothing.

I thought I would mention, though, that my PCP has always had this notion that anemia can cause heavy uterine bleeding as well as the other way around. She seems to think that my bleeding gets heavier as my anemia gets worse, instead of the other way around. Kind of a chicken and egg thing, but I wonder if this is a supported idea in the medical field or where she got the theory from.

Here's what I've found out as I went through the same process you are...my GP referred me to a hematalogist awhile ago, mostly for the IV iron, but also to make sure my bone marrow is working ok and that it isn't the cause of my anemia. The hematalogist gave me a couple rounds of IV iron and then ran a CBC about 5 weeks after the first IV to see where my red blood cell count, hgb, hct, etc, were after the iron. If your bone marrow isn't working properly, you won't be able to create new red blood cells, no matter how much iron they give you. My rbc went up a little, although not quite into the normal range. He also checked my reticulocyte count - which should be above normal if you're anemic since your bone marrow should be constanting making new red blood cells to make up for what it's missing. If the tests indicate that your bone marrow isn't responding as it should be, the hematalogist will probably do a bone marrow biopsy.
My hematalogist told me that my bone marrow appears to be working fine, and sent me back to the GI doctor to find out where I'm losing the blood from. He wasn't too much help in finding out what's causing my anemia, but the IV's of iron have been helpful, so at least he's of some use to me http://www.healthboards.com/ubb/smile.gif Good luck!

I guess you're finding out that the cause of anemia can be pretty elusive. As for the heavy periods--my hematologist explained to me that iron plays a role in constriction of the blood vessels. If your body is very low in iron you tend to bleed heavier during your periods. I did notice mine were lighter after iron treatment when my ferritin levels were up. He also stated that this wouldn't extend my periods, just cause them to be heavier for the normal duration. I've read some of your other posts and it sounds like you've got a really difficult problem to diagnose. My periods were never that big a deal and they're ALWAYS on time exactly 27 days apart! I'm on the pill now to stop them and I'm lucky in that I respond well to it so I have no periods at all. I also think that there are problems of absorption of iron that aren't determinable. I've had all the GI tests checking for Celiac, Crohns, etc and all of them came back negative. BUT my iron levels never rise on their own and keep dwindling down. Good luck in your continuing quest to find an answer. I know how frustrating it must be for you.
QS

Thanks for your replies so far. I am copying this from another post. I usually hate it when people do that, but you guys are anemic, so I guess you can understand the fatigue and depression of it all.

My D&C went fine, but my old bleeding pattern emerged about a day after the surgery. I waited a week and then I called the doc. She had me wait two more days so I called today. The bleeding is bothersome - especially when I bleed all over myself or someone else's couch - but the anemia is the worst. I have terrible headaches that get much worse for about twenty seconds after I stand up. I get dizzy if I am standing and talking at the same time - not enough oxygen to do both. I get up and cross the living room and I bump into the walls of the hallway. I don't know my numbers, but I know they are low.

The doc called back. She is terribly frustrated and out of ideas. She talked to her senior partner about me and he would have done all the same things. So, he recommended that I get the depo provera shot and get it more often than every twelve weeks. The last doc I had wanted me to get an IUD or depo, but I know both are contraindicated if you have dysfunctional bleeding and I know that both can have HORRIBLE side effects. I had discussed those things with this doc when I first started with her and she agreed, but now she wants to give me the shot. She seemed to want me there today, but she said to come in on Monday if I am still bleeding since I am two hours away - I already have a follow-up for Wednesday, but I guess the lab results from the D&C must show nothing at all.

I don't know what to do!!! My family is terribly worried about me and I have lost all quality of life. I would rather have a hysterectomy than the shot, but I don't know how to get one. My dad did talk to my PCP the other day and she wants me to see a hematologist. The one she told me to call can't see me until the end of November. My PCP already showed my file to a local hematologist and he told me to go back to my gyn who then gave me a script for sleeping pills. The only thing I can find that my PCP might be thinking of is leukemia. Could that possibly cause abnormal uterine bleeding? I know that abnormal bleeding is one symptom as well as anemia and many of the symptoms of anemia.

I guess I am rambling now, but I am devastated at the idea of getting the shot and devastated that no one can think of anything else to do. I guess I am just plain devastated.

Please let me know if you have any advice.

Hi Nik, I'm so sorry to hear all that you're going through. I know we've both been posting on this board for awhile now, along with Quietstorm, so don't feel bad about "rambling on" at all! This is a great place to get advice, but also to vent a little to those who understand what you're going through!

Why is your Primary considering leukemia as a possibility? I don't know much about that disease, but I would think that your white cells and other numbers would be off too (but I don't really know). Also, your hgb has gone up a little over this time right, even though it goes back down again. My understanding from my hematatologist was that if your numbers go up that indicates things are working ok, but your body just can't keep up with the blood loss. I don't really know anything about what the symptoms of leukemia would be, so if anemia and bleeding are among them, that would make sense to rule out that possibility. Have you posted on the leukemia board for more info?

I'm sort of in a similar situation to you (not with the bleeding), but in that my doctors don't know what to do with me either. They've done every test known to man, given me IV's of iron, and my hgb keeps dropping. Through all this, my hemoglobin once got up to 12.0, but of course now it's back down again.

Anyway, I figured I could live with IV's every now and then, even though it's frustrating not knowing what's causing all of this. But over the past couple of weeks, I've been throwing up every few days. It's not the flu, and I'm not pregnant (they ruled that out!), and it happens pretty randomly....not to mention that it's inconvenient and interferring with my work and studying (I'm just about to finish my Master's). So, they want to start repeating the GI tests again http://www.healthboards.com/ubb/frown.gif

My boss at work has been pushing me to go to Stanford Med Center this entire time - and I've finally agreed to. The advice he gave me, and he has A LOT of experience with the medical field, is that it's best to go to a larger, nationally known medical center that is used to seeing cases that are "out of the ordinary". The regional medical facilities just don't know what do with people who don't fall somewhere near the textbook cause of anemia. Also, it's easier to get referrals to see a couple of specialists at the same time, and they work really well together being under the same roof. I'm going to start this process on Monday...I just can't take getting sick every week like this anymore - I know what you mean about losing your quality of life...I'm only 27 and I'm drinking Ensure half the time for meals!

Well I've just gone on for quite a bit too...Good luck to you, and let us know what you find out next week!
Adrienne

Ditto the above. Please don't stress about cancer! I'm pretty sure that would show up in your blood tests as well in the way the numbers arrange themselves. It crossed my mind for me as well. (Most of those GI, GYN, etc. tests are checking for cancer along with other "stuff.") Don't be afraid to ASK though. Tell them you're scared and mention to them that you've worried about such possibilities. At this point they should at least be able to tell you what it's NOT. You'll also feel better for having expressed your fears. I'm surprised that the GYNs haven't been more agressive about stopping the blood loss. I can totally understand why they won't agree to a hysterectomy. I really didn't want kids EVER and here I am the mother of three and I wouldn't trade 'em for the world. I can't even tell you what changed my mind (all three were PLANNED!) It IS really hard to be agressive in requesting treatment especially if you don't even know what to ask for!! Can you get a referral for a specialist from your specialist? What I mean is, can your current GYN call on help above her/him and get you in to see someone? This way you can usually get in fast. (My daughter has a really bizarre visual deficit and was sent to three levels of specialists I didn't even know existed--none of those hot shots figured it out either BUT they really tried and ENJOYED trying to solve the puzzle--they did not give up) By what I've gathered your location is a big hindrance. The only way you're ever going to get any better is to keep at 'em! Be a ROYAL PAIN IN THEIR BUTTS and DON'T apologize for it! It's YOUR life and they're being paid for their services--it's why they're there!!!

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.

Hi Amwood and QuietStorm,

I was feeling so terrible this weekend, I almost lost the will to live. I think I picked up a virus that my nephew brought home from school and that made things worse. I am not feeling great, but better.

I am still very discouraged that my gyn can't think of anything else to do. I didn't go to see her today. I decided that she will probably have more time to sit and go over things with me if I wait until our scheduled appointment. I am not going to get the shot and I stopped taking my bcp's this weekend. That has been one constant through all of this and there is a remote possibility that the pills exacerbate things. I don't know how long it will take to get over the withdrawal, which of course means bleeding.

I'm not stessing about the cancer at all. I just can't believe that my body would turn on me like this for no reason and that there would be no cure. I only think the hematology thing is worth pursuing because it is something as opposed to nothing. I did post on the leukemia section. For both kinds of leukemia that I got responses on, anemia is a symptom and bleeding can be a symptom. White blood cells are only elevated for one. I did make blood before, but I'm not sure how well I am keeping up right now. I am still waiting for the darn nurse to call back. My PCP doesn't work every day so maybe the nurse left a message in a pile for her or something.

Hey Adrienne, what are you studying? I can't imagine working on my Master's right now. I did my coursework a few years back and I don't think I could have done it with anemia and, now, throwing up. That is one of my least favorite feelings. I had no idea the IV iron could do that to you. I was afraid of IV's until I had my surgery and it wasn't all that bad. Now, I am thinking I could even go for a transfusion! Ick! It's funny, we're both the same age. You're on Ensure and I use Depends!

Thanks to both of you for just being there and going through it, too. I know it is going to get worse as the weather gets worse. I hope to at least talk to my PCP before Wednesday and ask her to order some tests. I'd like to at least know my hgb because I haven't felt this bad yet so I am guessing something like 7. Then, off to the gyn on Wednesday. I am going to ask her to start the process of preparing me for a hysterectomy. I am guessing it is not quick and I will be able to get the other tests run and get the hormones out of my system by then. Then, if anything else turns up, I can cancel the hysterectomy. It would be sad to get one and not have the problem solved because they never got a reticulocyte count.

OK, I'll quit for today!

Nik

Hi Nik, wow, I was just signing on to vent a little to you as well! I'm so sorry that you're not feeling any better - hopefully your doc will have more to offer on Wed. Your primary should be able to do a reticulocyte count when they do your labwork - mine's ordered it along with the CBC. That's definitely a test they should run at some point...probably should've done it already! My mom had a hsyterectomy ealier this year, and it's not a long process once the decision is made. But, it sounds like you're taking the right approach and doing this cautiously...it would be nice to know that they can tell you that the surgery would solve your problem!

I've been trying to jump through all of the insurance hoops for a second opinion and it's driving me crazy! Everything seems to have finally been straightened out, but I've got to talk with my primary and she's out of the office until tomorrow morning. I've never gone through this process before and it's really intimidating - at least for me! My primary seems to work with the same GI docs all the time, and that's who would be doing the endoscopy again (he also did it in Feb). For some reason, I feel strange telling/asking my doctor about getting another opinion from a place like Stanford. Have you guys ever felt this way too? It's almost like I was taught not to question my doctor (I think by my parents), even though I know this isn't true....

They're doing the GI testing again because I've been throwing up lately. I wasn't experiencing this earlier in the year, and it's not a result of the IV iron because I haven't had an IV in about a month. Actually, I've never had a reaction to the IV iron at all - it was probably the easiest thing out all the stuff I've had to do this year! I've tested positive for occult GI bleeding but they haven't been able to find the source, and now it seems like I'm starting to experience GI symptoms, instead of just being anemic and having hidden blood in my stools. So that's my story for the day...this is just so frustrating, and it seems like things should be taken care a lot faster than they are!!

On another note - I'm working on my Master's in public policy and will be done in May. All of this medical/anemia stuff has made school a little challenging this year, but I'm so lucky to have amazing bosses at work who are really flexible and just great people! What did you study? I had to laugh when I read your line about Ensure and Depends....it's so true though, half the time I feel like I should just check myself into the local retirement community and call it a day! I really hope you're feeling better, and keep us posted!
Quietstorm, anything going on with you? I know you have 3 kids so I'm sure they keep you busy! Have you seen your hematalogist lately? Take care,
Adrienne

I feel exactly the same. The local docs are all connected by the local hospital. I had been seeing the same gyn for about 7 years and finally had him broken in (he had a little problem with not reviewing my chart and lecturing me about safe sex when I had been infected during a sexual assault). He had been so nice to me through the cervical stuff (which isn't resolved, yet) and the anemia. He gave me tons of free iron pills and free birth control and he gave me his son's phone number which lead to a new job. So, I still feel terrible about seeing someone else. I feel like I am cheating and I hope he doesn't notice that I am not coming back next month.

But, I am also learning how i****ct the practice of medicince is. We really have to be involved and be proactive about it. Doctors simply can't keep up with it all and with us. Finding new leads and new doctors is essential if we want to get well. It just takes so much time and energy to do it. I have tons of time since I just sit here bleeding all day - afraid to get up and walk across the house because it hurts my head so much and it could be the time that I faint. It's the energy that is lacking. I think there was a woman on an oxygen tank here awhile back. I wonder how much that would help. The air is already thin way up here at 6500 feet.

Public policy isn't too far from me. I studied psychology and political science in college. For my masters, I was in a social science program, but my research was in biopsych and philosophy. I just kinda snuck them in when they were cross-listed in the social sciences. It was only a one year program and I got what I wanted - things to read and people to discuss them with. Once I finished my research, I never wrote my thesis. Oops. Let's hope you do better...and with a lot more challenges.

Nik

I'm sorry to hear about your past problems in life...it's amazing how insensitive people can be sometimes. I know what you mean about feeling somewhat personally attached to your doctor. My primary has helped me through a lot over the past couple of years - I'm a recovering anorexic and have spent about 6 months at an inpatient treatment center. My doctor stood by me the entire time when I really believe most would've given up (before and after treatment). But, here I am today, back into life (well almost considering this anemia situation) and getting back on track. I really did feel uncomfortable questioning her opinion on who should do the next set of GI tests. But, I talked with her first thing this morning and it went great. She said she agreed a second opinion would be a good idea, and she didn't know of anyone in our immediate area that's better than my current GI doc. So we talked for awhile about the nearby larger facilities...Stanford, UCSF, and Cal Pacific in SF. She's calling around to Stanford and Cal Pacific and is going to get back with me on who she thinks would be the best to see. I am SO relieved...I really don't know what I would've done if she didn't agree with me on getting a second opinion!

Nik, did you have an appointment today? Maybe being on oxygen now and then might actually help? Considering you're at altitude I can only imagine how tired you must be! I remember when I went skiing last winter (not knowing that it was that bad of an idea) I was so winded from walking up 4-5 steps in my ski boots...I thought I was extremely out of shape until my doctor told me what could've happened that day!

I've started a little work on my thesis...hopefully I'll finish it in time. I've talked with some other people in my program who aren't planning on finishing their's right away. But, after I graduate I'm thinking about going on for my Ph.D. in public policy, so I'm going to try my best to finish by May...I'm actually headed to North Carolina in a couple of weeks to meet with some people at UNC - hopefully I'll at least have some of this anemia/GI stuff under control by then! Well, hang in there...I hope your docs have something new to offer you this week!

Hi Guys!
Sounds like you're each doing a little better--at least making some headway in the medical arena. It took me a VERY long time to find physicians I could actually talk with which is why my anemia went on for soooo long. And, lets face it do you know ANY women who AREN'T tired? It's almost expected. It IS a LOT harder to get care in a small town. It can also be really uncomfortable. Everybody knows everybody and EVERYTHING about everybody!! I live in a large metropolitan area now so I'm surrounded by research facilities. The doctors here don't hesitate for a second to send you to a "higher authority."
I've actually been doig pretty good. My blood levels, although low, aren't plunging as much as they were. My hematologist checks me out every 6-12 weeks. I haven't had to get any IV iron for almost a year now! I think my problem is a glitch in the system as opposed to any significant or worsening health issue. I just seem to have a really hard time getting iron--I don't think I lose significant amounts.
As young as you two are you DO need to be really agressive about seeking the care that you need. If I were you Panik I'd probably want a hysterectomy too. It IS drastic only because of your age. BUT, it sounds like you've tried all of the options and weighed the consequences as well. If it does solve the problem it'll be worth it. There aren't any "good" options. Good luck to both of you. I check the board every once in a while to kind of check up.
Robin

Hi Robin and Adrienne,

I went to the doc yesterday. We had a long discussion, almost heated, about my options. I want her to make sure everything has been checked. I know they have ruled some things out without testing me and I need to know why. I finally convinced her that the shot was not an option and she finally realized that I have never been on the regular provera. She wants to try that. I told her I had stopped my other pills because they have been a constant through all of this and could be part of the problem so she said I could wait through the week of withdrawal.

She sent me out with some good news - my cervix looks healthy right now. Looks like I may have beat HPV. Then, she sent me off for a CBC and about ten tubes of blood disorder tests. I have wanted them done, but I didn't know they would take that much blood! Each drop is so precious. I wish someone would have ordered them three months ago when I was at 12. I was supposed to call her Monday for the results and to talk about the Provera, but she had a nurse call me because I am at a 6 now and they want me on the provera to make it stop now. I was hoping to stay away from the hormones to see what mine would do. I don't know how I will react to the progestin or how long it works. But I guess I will be happy if it stops it for even a few days. At least it is something new.

They took the ten tubes and they did a bleed time on me. Interesting little test. I sat there longer than I had expected and bled all over the chair! (Oh, not from the tes, from my uterus.) The lab tech was so understanding. She let me change in their bathroom so that I didn't have to walk through the hospital wearing my red badge of courage.

I also think I have developed diaper rash. I have to travel with a diaper bag, too, so that I have extra pads and clothes in case of an accident.

Oh, and she would not talk hysterectomy at all!

It is so nice to have you two. Thanks for readng, again.

Nik

Oh Nik, you're at a 6! What are they going to do about that, besides the hormones? Have they started talking to you about a tranfusion? Or maybe try the IV iron to see if that works better than the supplements? Wow, I hope you're doing ok and that you don't have to get up and do anything at all today, or anytime soon! My hemoglobin got to a 7.4 once and my doctor said that they don't transfuse people at that point, but that was something I should keep in mind if things didn't change with the IV infusions (this was just before I had started the IV iron). I remember feeling so exhausted when things got that low...and on top of my hgb being low, I was scheduled for the small bowel series test that day, and then I went to work, and then to class that night....I don't think I could do that again even if I tried (actually, I only vaguely remember most of that day)! I did talk with my doctor about transfusions though, since I don't think I could get one if I ever needed one (just a fear of mine). She said that there's really no set standard on exactly when to transfuse someone or not, it's all evaluated on an individual basis. She was a little worried about me since I had developed a heart murmer due to the anemia, and the lower my hgb gets, the more strain is put on my heart, and the worse the murmer gets. Has anyone ever mentioned this to you, or have they even checked that out? Considering you live at altitude I would look into it!

I really hope they get things figured out for you soon...I can't even imagine going through what you are right now! I know, the grass is always greener on the other side and we're both anemic, but even though I hate throwing up I can at least make it to a bathroom and get on with my day....

Well I'm about to leave work right now and go to class but I just wanted to see how you're doing. I just can't believe they're stuck right now on what to do...I hope the labwork they did today will at least give them a direction to head toward. I know what you mean about them drawing all that blood...one time after they had taken about 4-5 tubes I stood up and felt light-headed for awhile...they really should do those tests sparingly!! I just had labwork done this morning too, but they only took 2 tubes today! Well take care and take it EASY!
Adrienne

Six is an ugly number! The gyn didn't say anything about doing anything and my PCP was on vacation last week. My dad called and yelled at a nurse and then we found out she was gone. No one bothered to return my calls. I guess they just took my messages and left them for her.

She called today and said they don't like to transfuse people my age. And even less so since they haven't stoppped the bleeding. It has slowed on the Provera. Anyways, I finally got the referral to a hematologist. They are simply begging the ones in the city to see me even though the preferred one is on vacation. Maybe it will happen soon. But, I think it will be out of network which will cost more, but I guess it will be worth it.

How is your referral to the special GI doc? I have been wondering. Is there any chance that there is permanent damage left behind from your eating disorder? That could be a tough question to answer, I know. I was just curious if that could be a possibility.

I hope you are well. My mom is coming over for lunch to take me for a walk around the block!

Nik

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

Hi Adrienne (and QS and anyone else reading):

You know, I had a college roommate named Adrienne. She was one of the sweetest, nicest women I have ever met, but I only got to live with her one semester because she got married and moved out of the dorm.

I got a call from the hematologist's office today. The name of their office is New Mexico Oncology and Hematology. To hear the oncology part first was a little jarring. I was having trouble getting the bloodwork from last week sent to them, but then the nurse - at an office I had never had any contact with - said she called the hospital where I had it drawn and got it faxed over. A little shocking that it was that easy, but I wanted them to have it anyway. They looked it over and they are going to see my Nov. 4th.

I think I am adjusting to being at 6. I don't think it is good for the body, but I am feeling a little better. I know exactly how you felt at Macy's I felt exactly the same way at Walgreen's last week. I had to get the Provera filled and they didn't say how long it would take. So, we went to the grocery store and came right back. An hour later, we were still sitting there. It was dinner time and that made it worse. We were walking out - without my meds - and I was just overwhelmed with fatigue and sorrow and and embarassment and that overall sense that something just isn't right. I just started to cry right there, but I kept on until I got to the car. I stood at the door crying - not enough energy to sob - while my mom yelled at my nephew for dawdling in the store.

Imagine - two twenty something girls that can barely shop. Something must be wrong, as if you couldn't tell from the diapers and the ensure.

That is when I realized that the headaches that I have been getting along with the photosensitivity are the same feelings you get after a good cry.

I hope you hear from your new GI doc soon. I don't know a thing about occult bleeding, but if you tested positive three times, wouldn't they want to find the source? I sure hope your new doc can help you. Maybe we are both close to complete recovery thanks to our new docs!

You know, I have always wanted to visit SF. I dated a guy in grad school who was dating a girl there. Ah, the life... Anyways, yes, it is getting cold here. Last week it was 80 during the day and 30 at night. This week it is a little cooler. I live in a high desert and we usually have snow on Halloween. I haven't seen any in the forecast this year, though. I have been watching the fires on the news - daytime TV, ick. I have a friend who drives water trucks and I keep thinking - he would only be twelve hours away. Why don't they mobilize people from other states? It looks like the pentagon sent some good help today, though.

I'm going to call the neighbor to see if she has an egg I can borrow. I got all ready to make cookies and had no eggs. I made them once before without eggs - oops. Didn't work so well. So much for trying to do something fun during my time alone today.

How do these messages get so long?

Take care!
Nik

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 http://www.healthboards.com/ubb/frown.gif

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

Hi girls. I've been having the aniema thing for a while. Mine responds to iron supplements, when I take them. This may be something you've gotten WAY past...but I do the best when I avoid caffine (No Dr. Pepper kills me). I was told by my doc that caffine doesn't allow your body to absorb iron, and that it absorbs best if it's taken with vitamin C. I have 4 kids, am 32, and have had extremely heavy periods my whole life. It wasn't until after my last child that anyone notice the anemia problem. I stay so exausted all the time I have trouble keeping up with anything. My levels seem to stay between 6 and 9. I've been following your posts for a while, they've been a big help to me. Hope you find out what's going on. Definately be a pain in the Dr.'s butt, their job is to help you, if they won't help, suggest he/she change professions. Good luck to all of you.

It's good to hear from you.

Staying between six and nine and taking care of kids sounds like no fun at all! Have they offered you anything to slow down your periods? I really think most women respond to treatment. That is why they can't figure me out.

I am going to try to be strong. I have two appointments in the next two weeks and I am going to beg for an ablation or a hysterectomy. I am going to start the search for a doctor that will help.

I saw the hematologist and he was wonderful. Nothing hematologically wrong with me, though, still. He wanted to put me on IV iron, but his office is two hours away and it would need to be done three times a week. Turns out I was responding well to the iron all ready - I can make tons of blood, I just need to stop bleeding. So, he had me double my iron pills to six just to try to sustain me until the bleeding stops.

Hi girls, it's been awhile, how's everyone doing? Nik, how's the provera working? I just read your post about your upcoming appointments - I really hope you can find a doctor who has your best interests at heart, who really tried to HELP you, and who really looks at the "whole picture" and doesn't do anything unnecessarily...it sounds like a lot to hope for, but I know that doctor is out there somewhere! Just hang in there, and I'm glad that you at least found a hematalogist that you like, even if he is a couple hours away!

I saw my GP today and that didn't go that great. I really haven't been feeling well the past couple of days, and I had to leave work early yesterday and missed class last night because I felt like I was about to pass out anytime I did anything...even sitting at my desk was hard! Our poor receptionist was the only one in yesterday and she was so worried I was going to pass out any second because I was so pale, and I kept having to sit down while I was talking to her! Anyway, my doctor checked my hemoglobin in her office today and it had dropped about 2 points in less than two weeks. Needless to say, I left her office today with a form for a disabled parking permit (because of parking on campus and work), and was told to be on "couchrest" whenever possible until the GI test on Wed - this is pathetic, 27 yrs old and parking in handicap b/c of this anemia! And I know the clear liquid diet is going to be exhausting for the capsule test, if that makes any sense to you guys. I'm tired enough as it is, and then to have to eat Jello all day doesn't help..and no coffee - yikes!

But, on a more positive note, my trip to North Carolina went really well. I didn't get sick in any of the meetings :) and I loved Chapel Hill! I was really impressed with the faculty and directors I met in the doctoral programs I'm looking at, and I met some of the students and they were great too! Although, I couldn't tell you how to get to Chapel Hill or Charlotte since I slept the entire way there and back, but I'm glad I went even though it seems I'm paying the price for it this week! Well I hope everyone is doing well, and Nik, good luck with your upcoming appointments...let us know how it goes! Oh, and motherw4, thanks for your response...I've heard the same thing about caffeine, but I can't quite give up the Starbuck's yet - although I have cut back! Take care,
Adrienne

Hi Adrienne,

I can't believe you dropped two more points so fast. You had already dropped right before that, too, right? I guess this procedure couldn't come at a better time. I know the diet will make you weaker, but you have to get to the bottom of your blood loss very soon. Have you had any throwing up lately?

I went to the doc today and told her I want my life back. It was a very tough conversation, but she finally consented to a hysterectomy. She has tried everything else, but she wanted me to have the provera shot even though the oral provera didn't work. Instead, I am going on Lupron for three months and then she will take it all out. The Lupron will slow the blood flow to my uterus so that I won't bleed as much during the surgery. She is very much against transfusing me, so she wants to slow th flow and give me time to make my own blood.

I didn't get the Lupron today. I have an appointment with my regular doc next week and I just wanted one last chance at something else and soem reassurance from another doc. Then, I will get the shot and start getting ready for the surgery. It gives me three months to talk myself out of it, but I don't think that will happen.

I didn't think she would consent, but she did. Now I really have to face it. I may or may not keep my cervix and I will keep my ovaries, unless she sees endometriosis.

Have you had enough Jello yet? I used to be a jellophile and had lots of good recipes for jello shots. I have a great one for margarita jello and one for pina colada jello. I guess that doesn't help you, though, does it?

I'm kinda tired from the trip to the city. I'll check back with you in a day or two.

Oh Nik, I don't know what to say...it sounds like the hysterectomy is what you want, given your current situation, and I can definitely understand feeling like you just want your life back. Even still, I can imagine this was a difficult decision for you and the next few months are going to be challenging. From what it sounds like, you've got a great family and they all seem supportive. Let me know how your next appointment goes and how everything is going. Have they at least slowed the bleeding a little since your last appointment?

I'm definitely ready to get my life back also! My hemoglobin is now hanging out in the low 7's, and I'm having a REALLY hard time keeping up with school, work, group projects, my thesis, and finals coming up. I went into work for a little while yesterday and had to leave early because I was just too exhausted (um, yeah, and I work at a desk so this is pathetic!). Anyway, I'm am so lucky to have an amazing boss who told me just to come in when I can, and my schedule is up to me as far as when I come and go. It helps that I work on campus and I'm only part time (20 hrs/week) since I'm going to school full-time....so at least I know the office isn't going to come to a grinding halt if I'm not there. Although, I do send out a weekly newsletter so that won't be done for a little while, oh well. I called in today and told my boss I'm going to take the rest of the week off - I was going to take Wed and Thurs off anyway for the GI test. I really never take days off work (except for actual vacations of course!) so it's really hard for me to have to call in and take so much time off...but I've finally accepted that at least for this week, my body really isn't going to let me do much.

My friend who's taking me into SF for the test tomorrow just told me that she got me a hotel room for the day so I can hang out there, work on my laptop, sleep, eat, do whatever I want....I think that's one of the most thoughtful things anyone's ever done for me! Last time I had this test I didn't realize I would be so tired that day, and all I could do was find the nearest chair and sleep all day! Well, that's the latest here....sorry it's not more positive right now, but hopefully things will turn around after this test. I hope everyone's doing well, and Nik I hope your appointments go ok, and that you get all the information and help you need.

I'm off to have some jello - I used to be pretty good at making jello shots back in the day also! I should've thought of that when I was making a batch last night...hmm, that could be something to do today...anything to make couchrest more exciting! Take care ~
Adrienne

Hey Adrienne, good luck today. I sure hope that little probe travels further this time. Tell them to put an extra strong battery in it! And, make sure you don't push too hard. Use that hotel room to rest and watch TV if you need to.

Let me know how it goes.

Thanks for your post! Well the test went fine yesterday, uneventful, so that's good. The hotel room my friend got was great...I brought my laptop to do some school work, but I slept most of the day and watched a little bit of Days of Our Lives...I felt really out of it yesterday (probably from lack of food and the anemia, not a good combination) so anything I would've written for school probably wouldn't have been coherant anyway!

I won't find out the results until next week - the doctor has to upload the info and then burn it onto a disk to view it...isn't technology great! But, I did talk with him for awhile yesterday. We went over everything that's been going on since I saw him last. He said that in a lot of cases with GI bleeding, it either eventually goes away and they really never find out what the cause was, or it happens every now and then (depending on what the problem is), but in my case it's been continuous and he said they need to find out what's going on. He said that if the results from the capsule test come back the same as last time (inconclusive, with the camera getting stuck in a "tumor-like" area in my small intestine), he would repeat the colonoscopy and endoscopy as standard procedure, and then he wants to do exploratory laproscopic surgery. I really feel like this is a no-win situation - if they find something on this test, I'll probably have to have surgery (from what I've read and heard about problems in the small intestine), and if they don't find anything on this test I'll still have to have surgery. But I guess anything is better then what's going on right now....with my hemoglobin going up and down all the time...I think I've forgotten what it feels like to be in the "normal" range and to have energy, which is probably good because I'm getting used to being at this point...it's amazing how your body can adapt to things...

I really won't know anything until next week, hopefully before the Thanksgiving holiday. I'm going to call my primary today and talk about the options the GI gave me and get her thoughts on it. For now, I've taken the week off work but I'm going to try and make my classes this week since now is not the time to get behind! How are things going with you Nik? Have you had any appointments lately? You must be getting snow soon, if you haven't already...I'm much more of a summer/sun person and I really don't like the cold...fortunately it hasn't been too cold yet, but it's supposed to cool down a lot this weekend :( Oh well, I guess that just means more snow in the Sierras to ski on...hopefully I'll able to ski soon! Take care,
Adrienne

"He said that in a lot of cases with GI bleeding, it either eventually goes away and they really never find out what the cause was, or it happens every now and then (depending on what the problem is), but in my case it's been continuous and he said they need to find out what's going on."

That sounds exactly like me. We put so much hope and faith in doctors and their books and journals, but so much of it is just guessing and waiting. I guess you need your intestines, though, so they do have to figure it out. I am giving up simply because the medical community doesn't seem to have a good answer for me yet. Surgery seems to be the way to go.

Hey, what happens to the camera once it is done filming inside of you?

I understand how you feel with the up and down hemoglobin. Nine was so depressing and felt terrible about six weeks ago. But then I went down to six and came back to nine and it felt so good. I have been so productive, but probably a bit too productive. I haven't been resting enough and the increased activity usually means that I will bleed more.

I guess I don't have any appointments for awhile. I was going to see my primary Monday, but we spoke on the phone and she said she doesn't have much to offer me. I coudl go in and see if she had anything more reassuring to say face-to-face, but it would cost me $25 I don't have and it is tough to get in with her, so I am sure someone else can fit in that slot. So, I went and got my shot yesterday. I didn't want to drive to ABQ to get it, so I asked a friend who is a mid-wife to order it for me. It was waiting for me at the clinic where my first gyn works. His nurse gave it to me and he saw me in the hall so he asked her what's up. He's the one who only did one ultrasound and tried one type of hormone and then sent me home with sleeping pills. He called me to tell me he thought the Lupron shot was a good idea. He wasnt so sure about the surgery, but he listened to me for awhile and offered to do it here. He is so sad that I won't be making babies - small town doc. His call was mostly just annoying. I really feel like the doctor that has agonized over this and tried hardest is the one who should get the procedure. It would be so nice not to have a two hour drive home and to have my parents stay at home, but I think I will stick with the doc that I have been seeing.

Before I got the shot yesterday, I hadn't bled in about 30 hours or so. It made me want to second-guess myself, but then I got the shot and I was bleeding an hour later. I woke up soaked late last night. I think I will bleed more when I stop the Provera, but the Lupron should kick in within a few weeks. Then I can start making blood to use on the slopes, too.

We did get snow, today. It's the first snow and it's about a month late. The ski areas got snow a few weeks ago which is good. It's also terribly cold and windy. Tomorrow our high is supposed to be 36. I'm not a huge fan of the cold, but Gallup is warm compared to Chicago. Most days, we are cold at night and cool during the day. You can tolerate it if it is only cold when you start the car in the morning and then it warms up by lunch.

Let me know when you get your results. How is the school work going? Any big plans for Turkey Day. I'm going to keep baking. Whatever doesn't sell at our next craft fair can be given away. Come on over...

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~

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

Well I'm completely procrastinating on doing some homework right now so I'm on the internet instead! I'm building a gingerbread house right now too! But it's really not all that creative - it's the one from Costco that's essentially already laid out for you...but it's still fun and festive.

So did they ever find out why/how you broke your leg? Have you ever had a bone density test? That's another health issue I've dealt with this year, although that one is directly related to the eating disorder. I had a bone density test earlier this year and found out I have osteopenia...not quite osteoporosis, but basically decreased bone density. I take calcium every day now, and should be able to stop it from getting worse, but I'm still at a higher risk for breaks and fractures, although I've never broken anything in my life. Anyway, I was just curious if they were ever able to tie together what happened last year with what's going on now?

I don't have the test results yet, but I really don't think I'll hear anything until Wednesday, I hope...I really don't want to have to dwell on this over the holiday. But, still no sign of that little capsule yet.....
But, I'm feeling better then I was last week. I haven't had my hemoglobin checked since the last time it was in the low 7's, but I'm sure it's gone up since then :) Either that or I'm just delerious from lack of oxygen....
I haven't been throwing up as frequently as I was before, but it still happens about once a week or so, and it usually lasts for a few hours (once it was all night), and then it goes away. I have no idea what's causing that (but I'm guessing it's related to whatever's going on in my GI system). I've tried to make any connection between foods I've eaten, my level of activities that day, anything at all, but I can't really find anything that would cause this. Oh well, hopefully the SF doctor will have more to offer....I'd be happy if he can just stop the bleeding - I can learn to live with the throwing up!

Well good luck at your upcoming shows! That sounds like fun and a good way to get into the holiday spirit! It's so nice to have someone who understands the frustration, exhaustion, and frustration (oh, did I already mention that?!) about all of this. We've got a lot coming up over the next couple of months, but who knows, we may both be on the slopes in time for some good spring skiing! Take care,
Adrienne ~

Hey Adrienne,

Do you have any results yet? How about the camera?

I just got a flu shot. I had asked about it before but the doc blew me off. I got the little hand-out on the vaccine after I got it and anemia is listed as one of the primary risk factors. Looks like I could be even more sick this weekend, but it will be better than a serious case of the flu.

Two shots in one week. It just doesn't seem age-appropriate, does it? I am sure you agree. The hormone roller coaster I am on has made me very crabby. I hope it doesn't get worse.

I aactually just stopped by to wich you a very Happy Thanksgiving! I am sure we will both over-do it, but we'll have time to recover before the next big one. I keep getting overwhelmed with trying to do it all. I can't wait to be well again!

Well, happy day.

Nik

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

Hey girl,

I saw your news and I am so happy for you. You know, in retrospect, it seems a little odd that they never investigated the place where the camera got stuck before. It sounds a little scary, but definitely sounds like progress. Do you have any idea what the surgery will be like. I don't know much about mine yet - I sure hope she can get it out vaginally. I tried to schedule my appointment for my next shot and our pre-op chat. The receptionist couldn't fit me in. I had hoped that she would at least get me on the OR schedule for February. If my levels had gone up, I was really hoping that she would schedule me for January. Now, I won't see her until January 14th. I am being a baby about this, but my last surgery wasn't until after 1:00. I do not want major surgery that late in the day. Since I have to wait three months for it, I want to be the first on the docket that day.

As for my shots, I totally agree with you. I'm not phobic about them, but I would prefer to give blood than to have a shot. There is a big difference between having blood drawn from a vein and having chemicals shot into your muscle. The lady that gave me the flu shot just jabbed it in. The nurse that gave me the Lupron shot was very gentle and made me breathe and relax. Both still ended up sore! My bleeding did slow over the weekend and it stopped Monday and Tuesday. It started again yesterday and I am in considerable pain today. Ugh! I have heard that it could take three weeks. So, I have another week. If it doesn't stop completely after that, I am calling the doctor!

The menopause hasn't kicked in much, but I have been really emotional. Mostly just cranky. And, a little nauseous. I have mistaken it for hunger and I have been eating all the sweets in the house. Very bad! I bought some lemons and ginger, but I haven't done anything with them.

When you wrote about looking back at your notes from the week your hemoglobin was so low reminded me about the time I donated blood. I really didn't weigh enough, but they had asked us to do it in one of our classes and offered extra credit. I really wanted to do it so I had a big breakfast and went on in. They let me donate, but then I ended up really dizzy so they had to lay me upside down. I had class right after that and remember feeling a little goofy. You can go back through all of my notes from school - except for the math classes that were so easy I wrote notes instead of taking them - and they are all really neat. That day, it looks like a third grader was in class. Right after class I went to my dorm and slept all weekend.

Soon, I will be able to donate! For now, I bake cookies and take them for the donors whenever there is a blood drive. Once I get this bleeding problem under control, I will have extra blood!

I shouldn't keep you any longer with all of your projects and finals. I have to remind myself that not everyone is homebound.

Take good care,
Nik

Hey Nik, I don't know if you just check this thread or others on the anemia site, but I was going to start posting more info under the anemia thread I started the other day here....I'm sure nothing happens if these get too long, but still.....