Can you explain that one more time? (long)

Things in my last post got complicated right after “there is no cancer in my pituitary gland” so I want to try one more time.

First, go read this:  A several page explanation of Sheehan’s Syndrome from the Mayo Clinic.  But you have to come back here after. 

So let’s say the severe low blood pressure episode while having George damaged my pituitary.  Since prolactin, the hormone that makes mamas make milk, comes from the pituitary, that would explain nursing failure despite practically living in the lactation consultant’s office for George’s first month…

But what about the adrenal hormone part?  Well, we “accidentally” were treating that by using steroids for other things.  Necessary and important things like cancer.  HOWEVER, we might have created a bigger mess even while all those drugs were doing their job.  Here’s the deal:  our bodies have a very elegant system for regulating hormone levels.  For example, the pituitary makes a chemical called ACTH.  (except mine.  Mine doesn’t.  But we’ll get there in a minute.)  This chemical goes to your adrenal glands to tell them to make cortisol.  When your adrenal glands send out the cortisol, your pituitary notices this and quits making as much ACTH.  If your adrenal glands aren’t making enough cortisol, your pituitary makes extra ACTH to tell the adrenals to make MORE!  NOW!

It’s like 10 year old boys, mothers, and the dishes.  Mom tells son to do the dishes.  Son does the dishes, mom doesn’t have to tell him again.  But what if mom tells him and he forgets?  Mom tells him again, and maybe starts getting louder.  She keeps reminding him until the dishes are done.   Once they are done, Mama leaves him alone.  Does that analogy make sense?

If it does, let’s continue it:  What happens to the 10 year old, the mama and the dishes when grandmother arrives?  Grandma does all the dishes all the time and the 10 year old is sent out to play right after lunch and supper.  If Grandma stays for a long time, our ten your old might get so lazy and spoiled that he forgets how to do his chore!  So no matter how much mama fusses, it just doesn’t get done right. 

That’s what happens to your adrenal glands when you take lots of steroids.  They quit making their hormones, because your blood is full of enough already.  Your pituitary isn’t sending it’s ACTH messages either, to tell the adrenals to make more, because there’s already enough.   So when the outside steroids stop, your adrenal glands have gotten lazy, lazy, lazy.

Are you with me so far?  OK.  So let’s talk about my situation specifically.

My adrenal glands are lazy.  Way worse than our fictional 10 year old boy and his dishes.   My pituitary is not participating either.  Because my adrenal glands are doing NOTHING, the pituitary should be sending out HUGE amounts of ACTH and other hormones to get them to work, but it’s not.

We think this is from Sheehan’s syndrome, which you know all about now if you read the linky thing.  But because adrenal failure can be SO DANGEROUS, especially in someone who might get sick while immunosuppressed, or throw up from chemotherapy, we owe my body a 2 month trial of work to see if we can’t coerce my adrenal glands into participating. 

We have to give my body some of the adrenal hormones it’s missing.  Life depends on them.  If we fully replaced all the hormones at their regular level, I’d feel pretty good and I’d just have to do all the special stuff when I got sick or when I have surgery or chemo.  HOWEVER, that’s just like always having Grandmother there to do the dishes. 

So the endocrinologist has to balance it.  He has to give me enough hormones to keep me alive, and out of the hospital.  But there has to be enough of a deficiency for two months to see if my adrenal glands can do any on their own.

How do they know how much to give?  If my blood pressure is so low that I faint regularly AND I’m vomiting daily, I need more hormones.  If I feel pretty much OK (other than the lung troubles, the nerve damage, the lymphedema and all) then they’re giving me way too much.  If I am quite weak and if I’m nauseated every day, the dose is right.  I’m totally not kidding.  That’s how they do it.

Also, obviously the guy who invented this system was NOT a parent.  The docs dose these drugs very precisely, time-wise.  First dose 5:30 AM, second dose (half size) at noon.  The plan is that the wonderful drugs that let me get off the sofa and do my job are all out of my system by 5 PM.  What in the world were they thinking?  ANY mama could have told them that 5 PM is when we need to be at our BEST! 

I’ve been on the plan, faithfully, for a few days… enough to know that I can’t do it exactly like this.  Managing from 5 PM and soccer practices, altar server training, finishing the school day and then through supper then getting Danny’s equipment ready and wrestling a toddler who doesn’t want to settle down and then getting up several times at night when Danny’s pump alarms go off just DOES NOT WORK when your medication plan is designed to have ZERO hormones in your system at those times. 

So I called the endocrinologist today and told him.  We have to change something.  He knows that I fully understand why the plan is the way it is, but I told him I can’t do it.  He is going to think about it tonight and call me and talk some more tomorrow.

14 thoughts on “Can you explain that one more time? (long)

  1. I forgot just how good you are at putting medical issues in such easy to understand terms, but so sorry you are having to go through all this.

    I’ve heard you “explain” your way to many a doctor ( or school situation!) and they usually understand your situation…(or do they just “give in”? Anyway, I hope they work it all out soon and that fictional 10 year old boy can get back to work!

    Love, hugs and LOTS of prayers coming your way!

  2. Prayers, prayers, prayers… I wish I had something awesome and inspirational to say. I am the one who is inspired, though, by you. If our family could help your family in any way, I am on the homeschool roster. JMJ

  3. Would you even consider calling on your wonderful support network in the Charlotte area to cover suppers, soccer practices, altar training, any other post school into evening activities and even possibly readying Danny’s equipment just for the next two months on the days that Dixon is working? – Well maybe the cooler fairy could come the whole time…tee hee!

    I know you do not like to ask for help, but you need to take care of YOU so let others help you out. Two months is not a long time. Maybe you have friends who are medically trained who might be willing to spend a night to cover Danny’s needs so you don’t have to get up multiple times, just on the nights when Dixon is working. If you do not want friends spending the night, would you consider paying a visiting nurse or someone like that on the nights when you are there alone with the kids?

    I understand that you do not want others in your home, that you want to do this on your own as much as super-humanly possible BUT you need to be realistic here. Until this all gets righted around, you will not be letting your children down if you do not take them hither and yon after school and in the evenings, or fix their suppers for the next two or even three months. YOU are more important to them than just being a chauffeur, homework checker, altar trainer, etc. etc. etc. You might aim for quality of time with your precious children rather than quantity just for the next 8 weeks or so. You can count 8 -10 weeks just on your fingers and it would be actually be only 4-5 weeks depending on where Dixon is in his work rotation. You can count that on 1 hand!

    Please think about it, Elizabeth. We need you too.

  4. Elizabeth, Please consider some of Teri’s suggestions. I understand how difficult it is to be the help-ee when you have always been the help-er. Maybe God is helping you to learn a very important lesson:to give and receive. As always, love and prayers. Nancy

  5. Pingback: What do I do? | Senior Health Wisdom

  6. Elizabeth, FYI – your Mother DID NOT have a single solitary thing to do with my earlier post or even knowledge I was going to comment yesterday afternoon! I called her last night to say that I sincerely hoped I didn’t offend her or you with my post, but I just needed to lay my feelings out on the table for all to see.

    The message is from just me, an older woman who is a daughter, mother, sister, aunt and friend and from where I am standing – way outside your daily realm – what I wish for you is that you slow down and take care of YOU for this brief two month time period. You have given your children quality and quantity time for all these years. For just the next couple of months, couldn’t you try to gear down and have the time with your children be quality time, especially the weeks that Dixon is works?

  7. I finally read “the linky thingie”. I just love those symptom lists that say:
    – weight gain
    – weight loss

    How any doctor ever diagnoses anything with self-contradictory symptom lists is WAY beyond my ability to understand. I’m SO TOTALLY grateful that you don’t have a pituitary tumor and that the doc diagnosed this “linky thingie” Sheehan’s Syndrome. I’m sorry that the treatment is “weakness and nausea means we have the meds *just right*”. That rots. I will pray that those doggone adrenal glands kick in pronto.

    There used to be a car commercial here that aired for a while. Actually I think it was a truck commercial. It showed a guy in slow motion, just barely moving at all. A *HUGE VICIOUS* dog rushes at him and nearly rips his face off. He doesn’t even flinch. His friends, when they see that, realize that their friend doesn’t have enough adrenaline. The fix – he needs a fancy new four-wheel drive truck with a hemi. OK, so the first time the commercial aired I thought it was funny. Now that I know that adrenaline insufficiency is completely NO LAUGHING MATTER, I feel a little bit badly that I laughed at the guy who needed a new truck.

    Maybe if you just get a new four-wheel drive truck with a hemi then you’ll be all set. You think? 🙂

    Love and hugs, Esther

  8. elizabeth, i think i understand what drives a mother at times like this, because i do it too: it’s not that your children need you, it’s that you need them. that you don’t want to miss out on anything in their lives. and i wouldn’t deprive you or them of that, ever. so i hope and pray the doctors will be able to work this out for you.

    as always, much love, respect, admiration, and did i say love?


  9. I hope the doctor has been able to change your schedule so that you are able to spend time with the kids when you still an ounce of energy left.

  10. Dear Eliabeth,
    I am overwhelmed with amazement with how you handle the things in your life.
    You have been an inspiration to me today and every time I visit.
    I continue to pray for you and your family.
    I have no idea really how each of you really copes with all this. As a wife and Mummy my heart just breaks with what you have before you each day.
    I pray you get the meds sorted for the best.
    God Bless

  11. Elizabeth, thank you for keeping us updated. I’m in awe of you, your strength, your weakness, your faith. I’m in awe of the crosses God is choosing to give you. I am in awe of your amazing family and children who take good care of you despite their young years. I will pray for you.

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