...filled with many, many appointments and consultations, we finally have some answers.
And while it's been frustrating that it's taking longer to recover, I've never had this unusual type of iron deficiency before, so it took my doctor and I a long time to figure out why my levels weren't increasing. We're now confident we know why.
I've also never lived in an adult family home before, where sometimes one has to fight for better care. In this case, much better nutrition. But now, with four different medical professionals saying I'm getting only 60% of the protein and calories I need...things are finally looking up.
IN DETAIL:
We all know that with many chronic conditions, there are ups and downs. Almost like you're on a rollercoaster. And if you've been following this blog, you'll know that this year started on the Big Dipper.
TESTING, TESTING...
Back in May, I mentioned I was doing better, and that continued for another month or so. But then I started getting weaker again, so my doctor ran some extra tests, and the bloodwork started making sense.
While my hemoglobin and hematocrit rose out of the anemic range -- thanks to a lot of the two different folates and B12 -- my iron was still very low -- 45% below normal. And iron isn't just needed to carry oxygen, it's needed for energy, mitochondrial and immune function, and wound healing.
To complicate matters, my plasma iron was low, but my stored iron (ferritin) was still really high. This can be due to chronic infection or inflammation*, but it can also be caused by low copper levels.
So she tested that. And while they weren't officially low, they were really close. She agreed to a trial of copper supplementation, which I started about three months ago. I'm also eating cashews, which contain a high amount of copper. And while I can't get back to the doctor to retest levels until December 10th, I'm confident it's helping.
*My fibrinogen levels -- one of many markers of inflammation -- were elevated as well, so we're going to be retesting that as well.
GETTING BETTER NUTRITION...
Another reason for my 'dip' this summer/fall, is because I'm still not getting sufficient calories or protein.
My doctor wrote the owner of the adult home back in May, telling him I should be getting approximately 2,300 calories a day. The owner pushed back, with his now standard argument, telling me they serve the best food, better than any home in the area, etc.
Now while that may be true -- the food may indeed be a lot worse at other homes -- it still didn't address my doctor's concerns.
They did change the menu, and yes, we've definitely had some better meals (typically dinners) from time to time. But still, not nearly enough calories, -- sometimes even less than before -- and almost always, not enough protein.
Like this: A sandwich and a half, made with one thin slice of deli turkey (that could blow away in a gentle breeze!), one slice of Kraft Singles 'cheese' on wheat bread, with a side salad. Probably 250-300 calories, if that.
As a result, that infamous ulcer on my foot opened up again, scars started forming, and I ended up back at the wound clinic. The good news is they -- and the nurses that came here to change the dressing twice a week -- also said I needed a lot more protein.
Next, my doctor referred me to a Registered Dietician, who has just written a detailed letter to the owner, saying I'm only getting approximately 60% of my caloric needs, along with specific recommended ways to increase the protein in my diet.
And lastly, I finally made it to the dentist about 10 days ago. He extracted the first of two teeth that needed pulling, and he also said I needed 2,000 calories a day, just to heal from the extraction*.
So, that's four medical professionals who have basically said the same thing. The owner's been gone for the last four-five days, but no doubt will push back again when he gets the news. If he does, my nephew will call him and get the matter settled.
The only reason he didn't do it sooner is we both thought it wouldn't be necessary. But it clearly is, and how he has all the ammunition he needs. And thanks to your help, I'm also supplementing with a good protein powder on days when the pickin's are slim.
*It's healing well, but I had to drink four 'Boost' nutrition shakes/day, to get those calories.
ON A LIGHTER NOTE...
Back in July, dear friends gave me one of the best gifts I've ever received: A post-card sized pad of watercolor paper, along with a set of paints, brushes, AND a book of stamps, so that I'd have no excuse not to start painting again!
It's been wonderful on so many levels. Watercolor painting is very difficult, especially if one hasn't tried it in 15-20 years. So even though I painted that Christmas card a few years back, it was still very stressful, and quite the challenge.
But now, with each little card I've made, I've become a little more confident of my abilities. I know if I screw up, I'm not painting the Mona Lisa, and I can just peel it off and start over.
I use the underside of my fleece bedspread as my dropcloth, and although the days are getting really short lately, I do get good natural light in my cubbyhole for a couple hours each day.
Below are four of the cards I've made in the last 2-3 months. I hope you enjoy them.
I hope to do a slightly larger painting for my nephew's birthday, but not sure if I can get it done in time!
SUMMING UP...
I was hoping to be out of her by now, but sometimes things take longer than one expects. I do think I'll be able to move by May or June of next year though.
Thank you again for all your love and support. It's been crucial to my improvement since the beginning of the year, when I couldn't stand for more than 2-3 seconds.
As the low-iron situation resolves, and i get more calories and protein on a daily basis, things should improve in a more consistent fashion.
Wishing you All the Best Thanksgiving Holiday!
Love,
Dan