It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board

  • Advice for setbacks, emotional concerns

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-05-2010, 02:06 PM   #1
    GreenGal77
    Member
    (female)
     
    GreenGal77's Avatar
     
    Join Date: Oct 2008
    Location: London, Ontario, Canada
    Posts: 78
    GreenGal77 HB User
    Advice for setbacks, emotional concerns

    I haven't been on here in awhile, was finally starting to do a bit better after a long struggle with fairly severe anemia, and am having quite the setback. When it all started, my ferritin was at 0 and my hemoglobin was only 77. I squeaked by without a transfusion; however, needed weekly iron injections that I now receive monthly, in addition to oral supplementation and B12 supplementation.

    I try very hard to eat right, get regular exercise etc. The anemia is the result of severe endometriosis, which I have had two surgeries for and am now due to have a hysterectomy. Just waiting for the date to come (I live in Canada, long wait lists) Anyways, it all started a couple of weeks ago with a bad flu/strep throat infection that I just couldn't shake. My doctors weren't too happy with me as they advised I take a week off from work (I work long hours on my feet, and I have a second job from home doing freelance writing so I work almost non-stop) and I only took a day and a half. After the half day my day job was on my case about the time I had missed, giving me crap and saying that I couldn't miss anymore.

    I had an extended absence from work (almost 8 months) which was medically supported while this was going on, and when I returned, they basically expected me to be 100%. They seem incapable of understanding that perhaps a person won't be 100%, there are shades of grey. They don't get that. My doctors were tempted to keep me off indefinitely, but I wanted to go back as I started feeling better, and I was on a disability so I couldn't do my writing either without jeopardizing my pay and I missed it.

    Long story short, I have now had two periods inside of three weeks, am freezing cold, dizzy and have had two minor black-outs. The pain is nearly unbearable but i live alone and am frightened to take any pain meds because I can't take NSAIDs and the narcotics will make me more dizzy.

    Last count (before the two very heavy periods) my ferritin was at a 9 and my hemoglobin was at 120, but the way it was explained to me, because it's so low, it would be very easy for me to drop very quickly again. I'm bleeding so much, I called my surgeon and she told me to stay on bedrest today and she can see me first thing tomorrow morning, as she is trying to keep me out of the ER. Of course this resulted in missed work, so now I'm upset and scared that I'm going to get in trouble.

    Any advice? Is it accurate that with a ferritin of 9 I could potentially see a rapid drop in my hemoglobin due to one heavy period? I'm definitely paler than normal, can't stay warm for the life of me...and I'm foggy and have a terrible headache so something is certainly going on.

    I'm just wondering how you guys cope with this kind of thing? I don't have many supports, work is upset with me, my family says they can't understand why it "keeps happening" and also tends to say things like how "it's not like you have cancer or something really serious" and they just make me feel really guilty. So when I'm supposed to be resting, I'm crying and feeling badly about the whole situation. It really sucks. I just hate that it keeps getting in the way of my life, I feel like the epitome of 2 steps forward, 1 step back if you know what I mean. And it's just so frustrating because I want to do so many things, and I would to be reliable and dependable and everything...but I can't control these things happening, and when they do, they wipe me completely out.

     
    Sponsors Lightbulb
       
    Old 01-06-2010, 09:20 AM   #2
    janinco
    Junior Member
    (female)
     
    janinco's Avatar
     
    Join Date: Jun 2009
    Location: Colorado
    Posts: 10
    janinco HB User
    Re: Advice for setbacks, emotional concerns

    I feel for you! I had very heavy periods caused by a uterine fibroid. I was already averaging a hemoglobin of 6 and was so wiped out I could hardly function. I usually dropped a point when I had a period - two in a month would be pretty rough. Is there a way you can get a standing order for hemoglobin or is there a clinic where you can get a quick fingerstick to be sure you're not dropping into a dangerous range?

    The more anemic you are, the more unstable the red blood cell membrane becomes and the easier it is to lose more RBCs. That's probably what your doctor meant. I have a hemoglobin meter that I use to keep track of my levels because I have hemolytic anemia and exposure to certain medications, drugs or even a virus can knock out cells so rapidly it causes heart and liver failure.

    Hopefully you'll feel much better after the blood loss stops. Will they be giving you a transfusion before the surgery? I don't tolerate oral iron supplements or iron IVs and but I have done really well with dessicated liver powder. I will never be "normal" because of the constant hemolysis but at least I'm only mildly anemic instead of critical.

    Jan

     
    Old 01-06-2010, 10:03 PM   #3
    GreenGal77
    Member
    (female)
     
    GreenGal77's Avatar
     
    Join Date: Oct 2008
    Location: London, Ontario, Canada
    Posts: 78
    GreenGal77 HB User
    Re: Advice for setbacks, emotional concerns

    Thank you so much for your response and I'm sorry to hear that you have had such severe troubles too, I don't wish this stuff on anyone and it seems that so many people are incapable of understanding what we go through (both period related and with the anemia)

    As for the finger stick thing, I have no idea to be honest. I would assume that it's possible though no one has mentioned it to me. She did check my levels today and I will have the results tomorrow so that's something, but with the headache and dizziness and everything I'm pretty confident I will have dropped. I can barely wake up in the morning, I'm disoriented, dizzy, nauseous...I fell asleep when I got back from the surgeon today and woke up around 5PM, spent a good twenty minutes fumbling around my apartment trying to get ready for work before I realized that it was the afternoon and that I wasn't working. I hate this.

    As for the transfusion, I don't know...is that something I should ask for? From what I understood they are trying to use the iron injections to just keep me high enough so that they can perform the surgery and just have blood on hand (I believe)

     
    Old 01-07-2010, 06:29 AM   #4
    janinco
    Junior Member
    (female)
     
    janinco's Avatar
     
    Join Date: Jun 2009
    Location: Colorado
    Posts: 10
    janinco HB User
    Re: Advice for setbacks, emotional concerns

    Hopefully the iron infusions will help you maintain until the surgery. I think most doctors will do surgery all the way down to 7 but are ready for a transfusion like you mentioned.

    Can they give you hormone therapy to stop your periods until then? Some women get Lupron shots about 3 months prior to a hysterectomy to help them build their blood count. That would probably be coordinated by a gynecologist if you can get into one on short notice.

    Jan

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    I have a large lump, and i am not sure how to seek medical advice. Taiwan Cancer: Colon 2 11-21-2008 01:50 PM
    Advice on dealing with sexual abuse of nephew: MarkTS Mental Health 76 11-20-2006 03:24 PM
    calcium deposit on baby's heart....need advice please! mpsweetie77 Pregnancy 16 06-15-2006 09:34 PM
    Would you say my boyfriend has a drinking problem? advice please? single22 Family & Friends of Addicts and Alcoholics 7 09-04-2005 02:10 AM
    Need Advice on Self Confidence write Cerebral Palsy 30 05-17-2005 11:18 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:40 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!