Wednesday, April 09, 2008

Deb's Medical Journal

Part IV - End

The year we lost our baby, I also lost my main full time job, I lost my father and, in a precursor to the current foreclosure crisis, the house we were renting was lost by the owners to foreclosure.

We moved in with my mother, I went back to work at my second, and then only, part time job. Life went on.

This post is going to detail my issues with the female reproductive system. If you are in any way squeamish about this sort of things, I promise, you will NOT want to read this. You have been warned.

And for the next three years I would put up with the increasing worsening symptoms of uterine fibroids. I went on to several temporary jobs that were full time but included no health insurance. And finally, this past winter I found the holy grail. A full time job, great pay and that included health insurance.

And it wasn't to last. The residential foreclosure crisis also has had it's effect on commercial lending as well. The larger clients that my smaller company provided services for were no longer able to fund their projects. And my company announced that we were all being cut back to part time hours and even then only until June. In June, they would be closing for good.

I had made plans when I'd gotten this job. We would finally be able to use our savings and move. There were several houses for sale near my mother so we'd be close by. Once we moved, I'd take a bit of time and go ahead and deal with my fibroid issues.

But the American system of tying health insurance to jobs was about to fail me again. I had less than a month, and the shortest month of the year no less, to be re-examined, have my fibroids located and the UFE performed. I was determined that it was to be UFE. I simply could not bring myself to go through major surgery again.

I found a doctor through my insurance carrier's website. Actually I found several and I took the one who could get me the soonest appointment. Once I actually met the man, I told him what my problem was. He examined me briefly and told me what I already knew.

"Yep, you have fibroids." And then he proceeded to tell me about myomectomy and hysterectomy. He didn't mention UFE. Not once. Not at all.

I was very angry but at least this time I was aware of all my options. I stayed calm and told him that I wanted to have the UFE procedure. He shot a sideways glance a the medical student I'd given permission to hang out with him during the exam and then he said, grudgingly, "Well, if that's what you want, I'll give you a referral to the radiology department."

I explained my insurance constraints and he assured me that I would never be able to get any procedure scheduled that soon, but he gave me a direct number to a radiologist anyhow.

And that's what saved me. I went home and got on the phone. Two days later I spent forty-five minutes in an MRI machine, humming songs in my head to drown out the clanging. The following Monday, I met the radiologist who had ordered the MRI and came face to face with a 3-D picture of...well me, quite literally inside out. I saw the most amazing photos of my tail bone, ovaries, uterus and finally, the three fibroids that had been giving me hell for eight years, including the one that had caused the loss of my baby. We were immediate enemies on sight and still are.

He showed me what I was up against. The first fibroid, although smaller, at 2cm in diameter, I could feel through my skin. This was the one that caused all my discomfort sitting and lying down. It also sat directly atop my bladder and caused all the feelings of frequent urination whether I had to go or not. The second, although larger at 4cm I could not feel at all but it was the one likely causing constipation and my back pain. And a final tiny one that seemed benign but was probably the source of all the heavy bleeding I'd experienced.

Despite all this, Dr. Hanking concluded, I was a good candidate for UFE. There were only 3 fibroids, I hadn't developed any others and I'd lived with these for over 8 years. The MRI was well defined and showed them clearly.

And we scheduled the UFE for two days later.

Recovery
They said I would be up and around in one week maybe two. I had the procedure on February 27 and it was every day of March before I was truly back to myself. Full recovery can take 3-6 weeks but is still less invasive and involved than hysterectomy or myomectomy.

Day 1 - Immediately after the procedure
Major cramping. Bring me a morphine pump and some vicodin cramping and keep it coming type cramping. That line they give you about it being like "bad menstrual cramps" is exactly that - a line.

Day 2 - Severe cramping and nausea
I went home the day after the procedure. They actually prescribed me an anti-nausea pill which was very necessary or I wouldn't have been able to eat. I also had something akin to motion sickness and could not tolerate anyone bumping into my bed even slightly or I'd be ill.

Day 3 - 10
This had more to do with the twilight anesthesia I was given - the kind where you're out of it but still mostly awake. But afterwards I had a strong sensitivity to light, sound and smells. There was very little I could stand to eat or drink and anything remotely salty was sent away. Even a small light in my room had to be covered with a towel.

The anti-nausea pills were in frequent use and my family was happy when I was knocked out on vicodin and able to sleep. Still having cramps worthy of vicodin and spending more time asleep than awake. There was also some slight post-procedure bleeding.

By week 3
I was able to venture out of the house for short periods but I was still having all of the above symptoms and fatigue. My doctor was following up with me weekly to make sure I was weaning off the vicodin (no way) and to make sure I had a menstrual period.

UFE comes with it's own risk of causing infertility. Although the particles should only block the blood supply to the fibroids, there is also the possibility that they may find their way to the ovaries, blocking them, cause them to shut down, triggering menopause.

Living with this fear plagued me the entire time. I tried to tell myself that even if all the other symptoms were averted and infertility was the result, I'd be ok with that. But truth is, in the next couple of years, I would like to try and have another baby.

When a month had gone by with no sign of a menstrual period, they asked me to come in for a blood test to make sure my ovaries were still working. The day I was scheduled for the test my period started.

Final
The end result is, I'm fine. The fibroids are already shrinking. I have already lost weight, my belly is down and the fibroid that I could feel under my skin, well, it's still there, but I have to look for it now. Already, the immensely heavy bleeding of my periods is back to normal for the first time in eight years with a lot less cramping. And the same old emotional roller coaster - fatigue, depression, moodiness, loss of temper - some things never change.

That this was accomplished without major surgery or a loss of fertility is something I will be forever thankful for.

I've had a couple of people ask me, why I've bothered posting all this or why I'm telling this story. But thousands of women are effected by uterine fibroids. There are blogs and medical websites detailing the medical side of fibroids.

But it was the individual comments and stories of the women that finally convinced me that I should not ignore this problem any longer and also, what it would be like. If my story can help someone, anyone, then it was worth it. And from my referral logs, I can see that it already has. I've had several emails asking for the end of this story, which I'm glad to finally post here.

So, this is dedicated to all the women with fibroids. I hope this journal is helpful to you and I hope you'll find the best way to deal with this.

Bless you all.

Part I
Part II
Part III

6 comments:

  1. First and Foremost, Peace Be Unto You. I'm sorry to hear about the sorrows you've endured Sista DeborahGirl. My thoughts and prayers to the Creator Most High are with you and your family. Earlier, I said "ENDURED" for it seems as if you are a fighter not a quitter and that's so important when on the battlefield, and yes the 'battlefield' is not always in the streets carrying a sign and a bullhorn. The battlefield is life period.
    You are not alone sis remember that always.

    Your Sista on the Battlefield of life,

    BLACK FIST, BLACK POWER, BLACK NATION!

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  2. ...the 'battlefield' is not always in the streets carrying a sign and a bullhorn. The battlefield is life period.


    Oh my, can I quote you on that? Thank you, thank you, thank you.

    I promise not to use this an excuse for not doing more, but I will remember for the days when I think that everyday living is not enough and that I should be out with a sign and bullhorn.

    There is so very much to do in this world.

    Thank you and blessings : )

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  3. Yes dear sista, you may quote me ;-)
    And you are very very welcome.

    Always remember Sis. DeborahGirl,
    There's a job in this struggle for everyone. In my most humble opinion, the best way for you to do your part at this moment in time is to stay strong, stand proud, hold onto love, nurture your spirit and fight everyday to regain your health, for your health is your wealth, and General Nikki X wants to see you my sista, a very wealthy woman!

    Peace & Blessing To You Always,

    Black Fist, Black Power, Black Nation!!!

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  4. Hi Deborah, I'm impressed by your blog output. I'm replying to a comment that you left on my blog in november about war, the tar sands, and the dollar. Sorry I didn't get back to you sooner but I only just saw it today. Thanks for your comment. As to your prediction then that we are heading into another great depression you appear to be right. I guess that's pretty obvious considering all that's gone down since then. Glad to see you are rooting for Obama. So are we up in Canada. the name of my blog is earthjustice.blogspot.com.

    Charles

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  5. Deborah:

    Almost a year ago, I found my way to your blog after reading your comment to one of Barbara Ehrenreich's posts. Since then I have visited your blog, but have not commented until now.

    Recently my neighbor, a young black woman who is barely past her teens, asked me to drive her to a doctor's appointment since she was in too much pain to use public transportation. As I drove to the doctor's office, I listened as she described her ordeal with uterine fibroids, which she had since the age of eight. Her mother had also been diagnosed with the disorder. I have known women who had this condition, but none of them had a case as severe as my young neighbor. So when you began posting your detailed account of dealing with uterine fibroids, I was interested in learning more about this.

    But when I read Part IV of this series, I was struck by this observation:

    "Yep, you have fibroids." And then he proceeded to tell me about myomectomy and hysterectomy. He didn't mention UFE. Not once. Not at all.
    I was very angry but at least this time I was aware of all my options. I stayed calm and told him that I wanted to have the UFE procedure. He shot a sideways glance a the medical student I'd given permission to hang out with him during the exam and then he said, grudgingly, "Well, if that's what you want, I'll give you a referral to the radiology department."
    I explained my insurance constraints and he assured me that I would never be able to get any procedure scheduled that soon, but he gave me a direct number to a radiologist anyhow.


    Like you, I do a lot of research on the Internet concerning health issues. Lack of health insurance forces you to be thoroughly prepared when you arrive at your doctor's office. So I did some research on UFE and came across an article that may explains why the doctor did not include UFE in the options.


    With less invasive treatments available, why would unnecessary hysterectomies be so common? One answer is that some doctors recommend hysterectomy for various reasons such as the complications of myomectomy or additional medical factors for the individual patient. Another answer may be found between reading between the lines -- and that also happens to be where many uninsured and underinsured women fall.
    A quick review of one common condition resulting in hysterectomy provides some insight. Fibroids are solid benign tumors on the outside, inside, or within the wall of the uterus. An estimated 30 percent of all women get fibroids by age thirty-five. Black women are more likely to have them and more likely to develop them at a younger age.
    Many treatment options for fibroids depend on how early they are diagnosed and many women are first diagnosed with fibroids during a pelvic exam. Pelvic exams require medical visits and many women are unable to afford those appointments. Access to affordable dependable healthcare plays a large role in whether a woman is left with several options or few alternatives. And it is at that entry point where access meets coverage where some disturbing facts are found.
    The number of underinsured Americans continues to grow as premiums rise and benefits are cut. Some 45 million Americans are uninsured and the women of that number are not getting access to cutting edge treatments or a variety of medical opinions.


    The article I quoted from was entitled Reading Between the Lines and was written by Pamela Merritt. Here is the link.

    I think your account of dealing with this illness touches upon so many issues, most notably the lack of affordable healthcare and the fallout from the housing crisis, both of which are compounded by inequalities due to race and gender. I hope you will make this article available to more women, perhaps by posting it to Blogher (although I am unsure how their rules on copyright and ownership actually work.)

    My best wishes for your continued good health.

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  6. Hi JB. Welcome to DebLite and thanks for reading!

    I hope you're right and that doctors have medical reasons for suggesting the other two procedures. I'd like to think that no doctor would ever put profit over giving patients all their options. It just scares me that UFE has been performed successfully since the 1970's and some doctors still aren't telling people about it over 30 years later.

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