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  • Severe, Persistent Anemia & Fibroids

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    Old 05-20-2011, 02:11 PM   #16
    teri579
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    Re: Severe, Persistent Anemia & Fibroids

    Quote:
    Originally Posted by Fitness Seeker View Post
    Hugs and kisses to you, for listening to my *frustrations*!! Ok, so i will start doing 1 iron supp daily til further directions. i forgot to ask her if i shd take the folic acid, too. Do u take them after a meal? I sometimes just have a snack and take them. Internist did mention that iron supps aren't absorbed too well as they leave pretty quickly, so I'll try to eat some more iron-rich stuff (ie beans). The former family MD didn't even realize beans were rich in iron! arrrghhh...
    Okay... neither did I! Protein yes, iron are you sure? I randomly just added a can of pinto beans to our rice pilaf 2 nights ago because I figured it didn't have any nutritional value being just 'rice' - had no idea I was adding iron, thought I was adding substance in the form of protein! How cool is that?
    Yea, since i'm in my late 30s and i got married really late in life (2.5 yrs ago) and haven't had a child yet, we (gyno) was concerned about really taking care of these "issues" so we could proceed as i might have some challenges. Oh my goodness I didn't know that - then I'm SO glad you got in to see a gynecologist right away! No time to waste (what was your regular doctor thinking... let's drag this out a little further?)... that moves you up a little further on the priority list for these new doctors... that's a good thing...

    Internist also ordered a 'sleep test". I have had insomnia since i was a teen. I wasn't successful in getting a sleep test done w/ my insurance (2 yrs ago), so I did inquire abt this w/ the current internist. He says normally the insurance does accept it. I guess it's all about how they "code" the visits. I would be so thrilled if my insurance takes it. (we pay 50% of the premiums b/c we work for a very small com) so it would suck if they tell me it's not covered and will cost me $20k.
    My Lord, let's talk about insurance premiums for just a bit shall we? I have a policy I can afford for my family through my own business, on my own, and I knew I had a huge $10,000 deductible for surgeries and no prescription coverage when I took it out but it covered most office visits (or at least 1/2 of them) and ER visits have been covered pretty well (I have 3 boys, lots of those), and we just get our prescriptions at Costco where they are the cheapest and discounted on top of that - we never get prescriptions and for this affordable coverage it's been fine for years. I am in the middle of getting a new policy for myself (that I can't afford ) My husbands company is small and only pays half too, we would have been lucky if we could jump onto that (thought we'd be able to) but they only have open enrollment twice a year, so I couldn't get on that till November and I "need" this surgery asap

    So how are things with you now? Your surgery is coming up, yea? Hope all goes well....keep us updated!
    Trying to wrap things up with my business since I'll be out of commission for a while (busiest I've ever been and now I'm behind from dealing with dr apts and tests and insurance stuff... and about driving the kids to games / work / school after my surgery? It's going to be crazy for anybody that is going to help me, but I think everybody is going to pitch in to help - I have faith in my family and I have been driving other kids to games every single game so that other Moms can work so I hope they will return the favor to me in 2 weeks when I'm out of commission and in the hospital and unable to drive for 2 weeks!

    Take care, off to a baseball game now!

    Michelle

    Last edited by teri579; 05-20-2011 at 02:13 PM.

     
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    Old 05-31-2011, 09:37 AM   #17
    LauraR312
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    Re: Severe, Persistent Anemia & Fibroids

    Hello ladies,

    This is my very first post & I wanted to thank you both for your valuable information. I am hoping to be able to contribute more as I go along in this process. I only recently learned that I had a good sized fibroid last week.

    Michelle in particular: I don't want to hijack this thread, so could you PM me with some ideas of where to start? I too live in MA and I'm in the Merrimack Valley, near the North Shore. I have not had health insurance at all for the past 10 years, so I have just started that process through my local ER. I'm expecting to get declined for free state care and will be shopping to hopefully have insurance in place for August when the next open enrollment begins. Any thoughts or recommendations you have about insurances, doctors, clinics, etc would be greatly appreciated!

    Again, thank you BOTH for the valuable information you have already provided. I don't feel quite so all alone.

    Laura

     
    Old 05-31-2011, 10:38 AM   #18
    teri579
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    Re: Severe, Persistent Anemia & Fibroids

    Hi Laura; Hijacking a thread is the best way to make a good thread even better and to continue sharing all those ideas with others. When we pm info, nobody else can benefit from it, and nobody else can step in to help answer if somebody isn't available (like next week I might not be available because I might be in the hospital after having my surgery). So I'll try to help.

    Do you have Anemia too? When you got diagnosed, did they say you need to have a hystorectomy or what did they say? Was it small enough that they could take it out in the office? Who diagnosed you?

    As for insurance. Do you have your own business? If so, how long have you been in business? I was not able to switch to my husband's company insurance right now because I 'just' missed their open enrollment and they only have it twice a year, and I can't wait till November for my surgery. We currently have our (family) health insurance (affordable but huge deductible for surgeries which basically makes the surgery not covered) through my own business, it's a group insurance (even though I'm the only employee of my business) and all we could (and still can) afford. We did not qualify for free care through the state a couple years ago but my doctor did tell me to try to get Mass Health again, apparently they can give you a discounted coverage, sort of subsidized. I didn't bother because I did this for my older son for a year (when he was 18 1/2) and I found it was like a full time job just to keep on top of this to keep the coverage and understand everything and then they would make me drive to Tewksbury and I would have to wait for half a day to speak to someone and then he STILL ended up losing the coverage because of something not being verified and I had even gone in person to try to verify everything and basically I got REALLY mad at this whole mass health thing thinking I AM WORKING AND PAYING (through my taxes) for people (many who don't work or WONT WORK) to have this coverage and I CANT GET THIS COVERAGE FOR MY OWN SON WHEN HE REALLY NEEDS IT! It's so completely unfair. Anyway I am so super busy with my business that I do not have the time to spend days and hours just trying to make sure that every day we are STILL covered! We probably wouldn't qualify again anyway. So I bought another group policy for "me". We can't afford this, I have to borrow the premium $$ so I will have to go into debt over this I just bought a cheaper car this weekend, am picking it up tonight, selling one of our cars that it replaces this week (hopefully we can sell it, I can't afford both payments). Then next month we have to do the same thing with my car (the family van and my work vehicle) - we just can't afford our current car payments and health insurance premiums of this magnitude.

    The good news though is that I have never felt this good since I was in my 20's. I feel just amazing since I've been on the iron. My levels all went up, not sure what they are right now but when they tested me a couple weeks ago they were all going up where they were supposed to and down where they were supposed to so my hematologist said once I have the surgery I should still stay on the iron until my levels get where they are supposed to be but that I could keep them monitored through my regular doctor or my gynecologist from now on! Wow, how encouraging. My aches and pains have even gone away, every weird symptom I've had for the last few years that I just chalked up to getting older has disappeared (well, 75% of them). So too bad I still have to have this surgery, my body and my mind are ready to 'really' get back in shape right now! Instead I'm going to be in bed recovering from surgery, yuck!

    Hope this helps. I'm trying to postpone my surgery right now for a few more weeks until my kids are all out of school and I'm able to finish a couple more jobs so that I can pay cash for my surgery deductible (oh joy!)... oh yeah and so that I can help sell the car(s) too.

    Go ahead and PM me if you have more questions that are private.

    Michelle

     
    Old 05-31-2011, 11:02 AM   #19
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    Re: Severe, Persistent Anemia & Fibroids

    hey ladies....welcome back from M-weekend....sorry to hear about you not having insurance, Laura and Michelle, with your insurance issues. I, too, also never had insurance from the time I was an adult to about 3.5yrs ago, (I work for the school, adult sector and apparently we get no fringe benefits. boo to them). If i didnt' get inadvertently diagnosed with anemia at a college clinic some yrs ago, i prob wouldn't have purchased insurance now.

    Keep us posted...I can't wait for my test appts next week b/c I won't be able to see my internist for another month or two til all the results come back.sigh. And not sure if a 'sleep test' would help. Does anyone know how to interpret results from them? I had one done as a volunteer 3 yrs ago. My internist wants me to do one as a diagnostic.

     
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    Old 05-31-2011, 11:27 AM   #20
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    Re: Severe, Persistent Anemia & Fibroids

    Hi Michelle,

    As long as there is no objection from Fitness Seeker, I am fine with posting here. Thank you so much for your quick reply.

    I do not know yet if I have anemia, but my boyfriend is always encouraging me to take OTC supplements, particularly when I get my period which is always very heavy & exhausting. I have literally just started this process and know nothing yet other than a CAT Scan at the ER detected a fibroid.

    I think I'm just in a state of shock at the moment and just can't think straight...so many thoughts running through my head. But, to answer your questions.

    Diagnosis was through the ER attendant on duty. He ordered a CAT scan & told me that's what was found. I went in because I was feeling uncomfortable & was scheduled to go away for vacation. I was thinking I might have a UTI and wanted to get some meds if they were needed. Figured I'd suck up the cost for the ER visit and the meds to get it done. Was not expecting this diagnosis.

    I have to wait to get my insurance in place before I can start the process of seeing a PC and getting a referral to an OBGYN. Hopefully I can hang on till then as the discomfort seems the worst around the time of my period. Some of the gals I work with that have had fibroids confirmed they used to feel the same way and it does wane from day to day.

    I work for a company that does not offer any kind of health insurance. It's a small one & the owner decided to take the penalty for NOT offering it as it was the less expensive route. I am, however, the owner's right hand person so I make too much money to qualify for free Mass Health. Gotta wait for that rejection in order to apply for Mass Connector insurance plans which will blow my budget out the window too. It's a vicious cycle.

    I just started taking a daily OTC supplement that contains iron, so I'm hoping that will help until I can get the insurance issue resolved. There is no way I can afford an out of pocket surgery in full AND have unpaid time off from work to recover from major surgery. Hopefully it won't come down to that.

    Just a little scared about every aspect of this & am kinda all over the map at the moment. Thank you so much!

    Laura

     
    Old 05-31-2011, 12:07 PM   #21
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    Re: Severe, Persistent Anemia & Fibroids

    What hospital would you be going through? Did the CAT scan say how many centimeters it is? Don't be in shock, it's really so common that I think that it's more uncommon if you don't get fibroid cysts in your lifetime! I think I read that 50% of women between the ages of 30 and 50 have fibroid cysts. Most of them are removable in the office, like outpatient surgery. Mine is unusually large (like a cantaloupe) this is not common, and this is the only reason they have to do a hysterectomy on me. The reason I asked about the hospital you would be going to is because you need to ask them if you can speak to someone who does health insurance counseling, tell them what your situation is, what you were diagnosed with and that you need help finding insurance that you can afford.

    I hear you about the time off work not paid etc. I've been dealing with this issue for a month or so now and have not finished any jobs in the meantime, which means I don't get paid. So this is one of the reasons I'm hoping to have the surgery a couple weeks later so that I can get caught up on my business (and of course, get paid too!).

    The supplements might make you feel better, but they won't help the discomfort from the fibroid nor will they lighten your periods (at least I don't think so, I actually haven't been on my supplements long enough to have a period yet, so I'll let you know if I get my period before my hysterectomy otherwise we'll never know!). Any doctor should take you for a brief office visit to discuss your problem and do a round of blood tests. Discuss ahead of time that you have no insurance and see if they will negotiate a discounted rate for your visit and your bloodwork? I was surprised that my blood tests were not really that expensive - I have to pay for a bit more than half of each of them (my current insurance negotiates a rather large discount - it does not pay for any of this). My balances are in the low $100 range so I think most of them were around $220 or something in total. I'm hoping they will allow me to make payments on these since I had 5 of them done and I saw 3 specialists plus my regular doctor twice (plus ex rays and a sono-hystogram). You won't have to see all the specialists and have all those rounds of blood work most likely. I was an extreme case, a month ago I felt like I was wearing a 110 year old body, I felt like I had bone cancer and arthritis and my blood work was all messed up... so they had to do extra rounds and send me to specialists but that's probably not going to happen with you so I don't want to scare you. Anyway what I'm trying to say is that maybe you can have a consult with a PC and she can order one round of blood-work based on your symptoms, tell her what's going on and that you suspect anemia etc. The office visit may cost you a bit more than $100 and maybe the blood-work will be in that vicinity also? Or maybe you can come up with a figure that you can afford and ask if they'll see you and if you can make payments or something.

    Oh, and the first thing my 'substitute' doctor had me take was prenatal vitamins. Then my regular doctor came back from maternity leave and said she would have said iron 3X/day but that I should get in to see the gynecologist immediately, then the hematologist. Then the hematologist said iron 3X/day but I could keep taking the prenatal vitamins too since I thought they were making me feel better. Don't take iron 3X/day without having your blood tested though because you can overdose on it if you don't need that much! I needed that much. I think I'd start out with prenatal vitamins once a day and try to get in to see a PC, and talk to somebody at the hospital that can counsel you on the health insurance piece. Good luck! Keep us posted...

     
    Old 05-31-2011, 01:08 PM   #22
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    Re: Severe, Persistent Anemia & Fibroids

    You two have already been such a big help today! Thank you, thank you, thank you!

    I went to Lawrence General Hospital in Lawrence and after evaluation, I did sit down with the billing & insurance department. They always start with the application to Mass Health first & review other options with you after you get rejected. So I'm waiting on that.

    The doctor that I saw that day did give me a referral to an OBGYN but my sister just told me about a health care clinic in the area. I can go to them for a small fee & hopefully they can advise me of the insurance issue. I'll keep you posted.

    Oh, and the attending at the ER said I did have a good sized one. He didn't give the dimensions.

    Laura

    Last edited by LauraR312; 05-31-2011 at 01:09 PM.

     
    Old 05-31-2011, 01:58 PM   #23
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    Re: Severe, Persistent Anemia & Fibroids

    Then the records MUST be on file. They have to have the dimensions. I had to call my gynecology office back to find out the exact centimeters. You should call and find out, that's your right to know and tell them you are trying to talk to specialists and doctors about it to figure out what to do next and who to go with and that information would be extremely helpful to you in your search and in determining who to go with for treatment.

    A 'good size' one? What's that? The size of a golf ball? A baseball? A cantaloupe? They'll probably tell you in centimeters because that's how they measure these things in the medical field. Mine is ten centimeters.

    Good, I'm so glad you already sat down with one of those people that gives you options based on your situation. I really hope they find a solution for you soon so that you aren't uncomfortable anymore Funny thing with my big fibroid is that it never really bothers me 'pain-wise' - I don't feel it. It just causes symptoms that are completely unmanageable (like the heaviest and longest periods on planet earth) and silly me, never realized that all that blood loss was draining me of what my body needed to function. The pain that it caused me was the arthritis all over my body and bone and joint pain. That is subsiding more every day. Oh, and my lower back pain I believe (and so do my doctors) is caused by the fibroid cyst pressing on my spine.

    I'm going to Beverly Hospital - but I hear Lawrence is REALLY good. I've heard of other people that have had to have surgery purposely having it in Lawrence because they're known for being top knotch in our area for surgery.

    Keep us posted So glad I've been able to help - ask away - anytime - I know how comforting it is to know you're not alone when it comes to things that are totally foreign to us. This forum was an absolute God-send when I first got all these results around a month or more ago.

    Michelle

     
    Old 05-31-2011, 02:30 PM   #24
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    Re: Severe, Persistent Anemia & Fibroids

    I'm very confident in Lawrence General. It might be in a bad city, but it's still a top notch hospital. Beverly Hospital is a good one too so I'm sure you are in good hands.

    Been doing some more research since my last post & I'm going to call a couple OBGYN's in the morning to try to line something up. It seems as though a couple of the doctors I like, might be affiliated with the practice the ER recommended for follow-up. I can figure out a PC after that once insurance is in place to find one that has the same insurance carrier.

    I'm feeling mine more often now but I'm not having sharp pains, thankfully. It just feels like muscle aches when you sleep too much. I also have the heavy, nasty periods. I didn't think much about them because I have always had regular, heavy periods from day one. They've always been 5-7 days and I've always been achy around that time. I just figured they were changing as I was getting ready for menopause. That's what you get when you self diagnose!

    Well I'm gonna stop the research for now & go do something fun. Will keep you posted with what I find out tomorrow.

    Laura

     
    Old 06-13-2011, 10:10 AM   #25
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    Re: Severe, Persistent Anemia & Fibroids

    Hi ladies; Back from my surgery. Sort of a nightmare, but I'm here, so I guess my nightmare could have been worse My biggest fear was not the surgery, but that something would happen in surgery and I would lose blood and I didn't have enough blood in the first place to lose so...

    My doctor said ahead of time he was ordering 3 units of blood for the surgery but that I shouldn't worry, he wouldn't need to use them. Surgery was regular 1 1/2 - 2 hrs. beginning at 10:30am Almost as soon as they woke me up in recovery, my blood pressure plummeted and I could not breath and that gas mask went right back over my face (this was the worst part of the whole thing believe it or not, what a horrible feeling, like being smothered). I kept pulling it off saying "I can't breath", they gently put it back on, whizzed me down the hall back to O.R. I was bleeding internally and fast. Thankfully they went back in and found it but it took all afternoon, I was woken up at 7pm from the second surgery. I was given 5 units of blood in the second surgery. I was in ICU Mon night and all day Tuesday. Wednesday to a regular room, but they still had to transfuse me and give me 2 more units of blood over a 6 hr period. So I received 7 units of blood (I guess we only have about 9 in our bodies in total, I had less than that since my levels were low going in). I went home Thursday afternoon, been pretty much in bed, only walking to and from the bathroom, he wants me to stay off my feet as much as possible. I feel good though - much better than I thought I would right now. I can't go back on my iron supplements for one more week because they will constipate me and I literally just had my first bm yesterday after the surgery. I haven't needed any heavy duty pain medication since Friday night, just ibuprofin since then (Friday would have been day 5 from surgery date), so I think I'm doing good! Staples come out tomorrow afternoon already. Looking forward to picking up where I left off and enjoying the rest of the summer and hopefully will be able to take at least a short walk by next week? We'll see

    Michelle

     
    Old 08-28-2011, 06:35 AM   #26
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    Re: Severe, Persistent Anemia & Fibroids

    Dear Fitness Seeker

    I have been living with fibroids for three or four years and while the truth is everyone is different, the reality is we all need to learn and try some of the same things. The sheer volume of info on the net is daunting.

    I used to have ten day periods, mostly heavy, often painful. And of course as a result came close to actual anemia (you need to have had a number of transfusions before being officially anemic and I averted them)

    The first time it got bad was when I bled so long I was tired, couldn't even do my own dishes. Of course you are depressed sweetheart.. it can seem so hopeless. But often its not.

    While doctors will not relate fibroids with estrogen, the truth is women who have experienced the life.. do. Doctors are trained to open the hood and dig around, don't expect more. Get all the right tests and know your position through your doctors. Then get busy and learn what they don't or can't tell you.

    I researched, I saw naturopaths, I saw endocrinologists (that I had to pay for out of pocket because my doc refused to believe my situation could be at all hormonal ... yet it subsides at menopause when your estrogen drops like a lead balloon)

    Ultimately, I did put it all back together for ME, my solution was to reduce estrogen however I could - and then increase progesterone to balance me out.

    That means giving you liver all opportunity to flush out excess bad estrogen, that's how your body gets rid of it. It means eating properly, sounds easy but its not. Look up estrogen dominance in Google, the stuff is in everything. All the pesticides on your veggies and fruit mimic estrogen. The hormones in meat are estrogen related. The bundle of hormones you have been piling in since your teens is hard to reverse, but you can do it.

    After a year of moving to a diet of about 90 percent organic.. and taking proper iron.. the improvement is dramatic in me. You can get so much organic food, yah it's 20 percent more expensive but hey, you save that on tampons and misery. You need to get in shape, that helps the body to move out bad estrogen. And depending on your progesterone levels, you might find a topical cream helpful. Don't be asking a doc for a shot, first of all, sent in that way it just doesn't work so well (so they fire in tons and hope a bit will stick). And the stuff they use is not the kind your body wants. Topical natural stuff gets into the blood in ten minutes and via small doses.

    Again, do some research, check out Suzanne Sommers site on that topic, her research is massive and she shares good research info. There is a huge diff between the crap used by the medical community and topical stuff.

    Lastly, if you have cysts too, its a double edge sword as estrogen helps those shrink and be stable. So the trick there is to balance your excess intake with things like perhaps a cream or even added liver helpers so it can do a really good flushing job.

    Look up serrepeptase too, it plays a major role in many fibroid successes. As well, helps allergies (again look up estrogen dominance to see how those and fibroids or prolonged bleeding actually do relate ) the stuff is known to eat away at cysts and assist in fibroid management.

    Doctors, especially men, do push for surgery, but your uterus is a vital organ, hang onto it if you can. Try all else first and don't feel pressured. Doctors are fabulous and we need them, but in science you can only discuss that which is proven scientifically. 40 years ago doctors had to assume that smoking may not be the cause of lung cancer because there was no evidence. But .. we knew. Not until the evidence was in were they allowed to be so vocal. So this is not a slam on Doctors but an understanding of their hands being tied.

    My periods are now 4 days! One is heavy and the rest light. That is better then ever in my life... and six docs pushed me to have it yarded out. Always ask... Do I have cancer? And if not then ask what happens if I avert surgery? I strongly felt that I owed my my body the chance to work it out, and you need to find and try all the weapons nature gives us first if you can if you feel the same way.

    Big hug my dear, I know how lonely you feel. Be diligent and take control, don't let this get you down. Own this thing. Take your iron! (I still take three a day during my period and one a day the rest of the month) Right now I am back to how I felt when I was 25. Life has become normal.

    Last edited by jocool; 08-28-2011 at 09:54 AM. Reason: Sorry about all the typos.. I was using an Ipad..

     
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