Today my mother and I sat across from two brilliant endocrinologists at the University of Pennsylvania Hospital. “Your case is just so FASCINATING!” they both gushed to my mom. My mom and I looked at each other and rolled our eyes, but we both laughed.
The (six hour) appointment went really, really well folks.
These two women (the endocrinologists) did some fast forensic work and found that my mother has likely been suffering from bouts of elevated calcium since at least 2003. They are 99% sure that the calcium levels are high due to hyperparathyroidism.
See those little yellow things? They are there basically with one job: to keep your body’s calcium level within a very narrow range. If you have hyperparathryoidism, they aren’t doing their job.
In my mom’s case, her likely (99%!) hyperparathyroidism was exacerbated by a medication she was taking for blood pressure that also happens to raise calcium levels (a medication, in fact, commonly used to help people with LOW calcium levels), combined with calcium supplementation that all American women are told to do. This led to all of her symptoms; weakness, cognition issues, fatigue – you name it.
They had her stop taking that medication just before Christmas. She’s steadily gotten better since.
Why wasn’t this found at her last hospitalization? I don’t know. I’m angry about it, but there’s nothing I can do. She does, indeed, have Homocysteinemia (as I mentioned in a previous post, and they discovered at the last hospital) which contributed to her issues. She also had some renal issues. The reason she seemed to get better after the last hospitalization is likely because the fluids she received in the hospital reduced her calcium levels.
Now? The doctors believe that my mother’s issues are reversed. Yes, reversed.
She still has some hurdles to get over. She likely will need surgery to get the parathyroid glands that aren’t working removed. Her calcium levels will have to be monitored forever. She’s got much physical therapy to do to get back her agility and strength. There is still one pending test that could reveal a more scary diagnosis, but the doctors feel comfortable saying she’s on the road to recovery.
Hallelujah.
…..
As to where she’ll live, we have to work on that. The waiting list for the elder care apartment (it’s not a regular apartment; it’s a building for seniors with many accommodations for handicapped access, etc, with pull cords in every room and regular check ins from staff) is substantial, so she will have to wait. We’re going to meet with her social worker this week and try to figure out if she can actually stay where she is now; she really likes the facility and she feels safe there and it would give her plenty of recovery time (we don’t know what the insurance will allow, obviously). (Side note: the new place is so nice Charlie is actually looking into moving his mom there as well.)
She’s scheduled to start teaching classes a week from tonight. She’s already completed and submitted her syllabi (she teaches part time at a local community college; she hasn’t taught full time for nearly seven years for reasons that are complicated and academia related). I have absolute faith in her ability to teach, and am willing to drive her to classes until she feels ready and able to do it herself.
…..
But best of all? Today my mother gave me a lecture.
A LECTURE.
Y’all. It’s been years since she’s lectured me. Seriously. A decade.
Not only that, but we had a lengthy conversation about the internet, about the Steubenville rape case, about Anonymous and hackers and The Hive and… it went on and on.
I never once had to repeat myself. I never once had to offer more than a cursory explanation for anything. It’s amazing. It’s been a difficult year living with someone with cognition issues (and I haven’t always been patient or kind about it, I admit it), and it’s such a relief to see my mom back. She’s back mentally in a way that she wasn’t even after the pneumonia – yes, I’m saying she’s BETTER now than she was in 2011 when she moved in with us.
Anyway. WHEW.
As usual, bless you all. Bless you for listening, for holding me up, for sharing your struggles, and for not judging (much). Life is feeling pretty good about right now.
{ 37 comments… read them below or add one }
It’s like an episode of House! This is such good news. I’m so happy for you and your mom. Does she recognize how much better she’s doing?
What a relief! I’m happy for all of you that there is progress & positive change!
So glad your mom has finally got answers! The human body is a crazy thing – one simple over- or under-worked organ and the whole thing goes out of whack. I heard that phrase from my doctor too, “You’re such an INTERESTING patient!” I wish to god I was a normal one. :/
-Spokane
YAY for good news!!!
So happy for you and your mom! What a great way to start the new year!
So happy to read good news. I know that sometimes just “knowing” what’s wrong is the biggest stress reliever, because then you know you have options for tackling it. And YAY for lectures (we are yaying the lecture, right?) I’ve been following your posts, but today is my first time commenting. Big hugs to you!!!
That is great news! More interesting….your mom’s case “might” be able to help my 85 year old dad. Thyroid problems run on his side of the family, and he has recently had issues with elevated calcium levels as well. Turns out he had to have his hip replaced due to arthritis in his hip, but the cognition levels have also been a concern. While my father was not a college professor, he was a journalist, and other things in his storied career and has always been sharp and funny as a whip. I am going to pass this information onto he and my mother in the hopes that your discovery can help his as well. The internet really can be a wonderful thing! So happy for you!!!
This is GREAT news! I am so glad to hear it.
I’m glad that you all got some answers & your mom is feeling better. I know it can be very frustrating when you are dealing with a medical problem and don’t know what is causing it.
I’m so glad for you! This is such a good outcome.
This is such great news! I am so happy for your mom and you. That her health is drastically improving and that your both getting some real answers.
This makes me so very happy for both you and your mom. So awesome to get her “back” like that!
Wow, that is fascinating. I take calcium chewables. Wondering if that’s what’s wrong with my brain these days.
I am glad they were able to help her. It’s the worst when you don’t have an answer so finding someone who can help is wonderful – someone who knows which part of the body is causing it. Yay for you both!!
Congrats!!!! So glad you got your Mom back and hurray for Penn for figuring it out!
This is absolutely incredible! What fantastic news! So relieved for all of you.
Yay!! What good news! And how wonderful to have such a great conversation with her! Hope the social worker meeting goes well.
Answers, even if they are complicated and not necessarily easy to deal with, are such a blessing. Yay for answers! And cheers to you all for the road ahead. :)
Answers are good….progress in the right direction and I’m happy for you!
My mom also has hyperparathyroid problems, and I want to thank you for continuing to post about your mom’s health. I am learning so much from your posts! My mom’s doc recently asked her to start monitoring her blood pressure and she went on a low salt diet. When you posted last week about hyperparathyroidism causing high blood pressure, I told my mom and she was surprised to hear it. I’d bet her own DR never connected the two conditions.
I don’t think my mom needs a surgical solution [yet], but I have noticed some vague cognition issues recently and because of you I will be tracking this much more closely. My mom is 74 and is a breast cancer survivor x2. Her health issues can get pretty complicated, just like your mom’s.
Doctors amaze me. Think about all the detective work they have to do to find these things! So glad these were good detectives and you finally have the right answers.
So glad for you all. Continued wishes for a full recovery!
Take charge of your health. I learned the hard way that doctors don’t have all the answers. I miscarried my baby in 2009 because my doctors did not know the dangers of hypothyroidism and pregnancy. Please be sure to do more research into your mother’s health troubles. Don’t underestimate the power of the thyroid gland.
WOW, Cecily. This is wonderful news. As Bette Davis said, getting old ain’t for sissies. Thank goodness you guys found a medical team that is solving the mystery of your mom’s fascinating (yes, I think it is!) case. Good luck on ironing out the living arrangements.
Great news! 2013 is looking better already, no?
I am so glad that they are finding answers — and that she is improving so rapidly! This is wonderful. I’ve been wondering whether it was a parathyroid issue since you first mentioned calcium involvement. Please feel free to disregard this, but I had hyperparathyroid issues a few years ago because of a benign parathyroid tumor, and I learned some things the hard way. The first thing is that the parathyroid glands are really, really hard to find. Sometimes they’re buried in the thyroid, sometimes they’re in some other tissue, and they’re as small as a grain of rice, so they can hide very well. Surgeons need to do a *lot* of parathyroid surgeries before they’re considered experienced. Look for someone who has done more than 500 (1500 is better) and who does them several times a week. Endocrinology surgeons are better for this than general surgeons. I won’t share my whole story, but I ended up at the Mayo Clinic to get my parathyroidectomy redone because the local surgeon was very good — but not quite good enough. I want your mom to get it done right the first time. She deserves an uneventful surgery followed by an easy recovery.
What wonderful news — I’m delighted you’re able to provide *this* update.
(Am I right in understanding that the parathyroid glands, though physically close to the thyroid gland, are actually something else — a different gland, not part of or directly related to the thyroid? Just curious!)
Congratulations to you all on what sounds like really good news. It feels odd to congratulate someone for receiving a diagnosis of a debilitating condition, but having both an explanation for her symptoms AND a way to treat it is so important. Wishing you all the best.
What great news! You are lucky you found those endocrinologists! Happy days are here again.
Great news – I can only imagine your relief! So glad to hear your Mom is on the road to recovery!
What good news! Continuing to think good thoughts for an optimistic outlook and smooth recovery.
I’m so happy to hear that you’re getting some answers! Well wishes for a speedy recovery to her! :)
Woo hoo! That is great for all of you. Hoping your Mom keeps it up and good luck with the insurance and the elder care and all that jazz.
You explained this medical situation very well. Have you considered expanding your writing portfolio to include this sort of doctor-speak to layperson translation?
Thank God, Cecily! Oh, sometimes the clouds do lift! Prayers going out to you and mom, and hope she just feels better and better.
Cecily, thank you so much for this post! My mom had thyroid cancer in 2009, and you made me think about whether my mom still has these glands, whether they’re working properly, etc. She has issues with tingling and joint/bone pain which, while fairly generic symptoms, are enough for me to ask her about this next time we talk.
I haven’t commented in a while, so belated and blessed annversary, Christmas, and New Year’s! I hope the year is, indeed, an abundant one for you. And remember, even when things are careening downhill in a handbasket, there is no place so dark that the Light can’t reach it.
Wonderful to hear this! Glad you can rejoice in having your mom lecture you – sounds silly huh?
So many women go from one doctor to another and on average it takes between 6 and 8 doctors to get diagnosed with thyroid disease. I am so glad to hear that you got to the point that you finally know what is wrong with your mom’s thyroid and will get a qualified help.