Appt With My GP #3—Iron Infusions (Monday 14 December PM)

Good news…I found out last week that I have been accepted for the clinical trials for people that have iron deficient anaemia and can now qualify to receive my IV iron infusions for free, and they will pay me travelling expenses. The nice part is that all I have to drive to is my GP’s office. This past Monday I went for my first visit. The clinical specialist drew my blood to get a baseline haemoglobin level, and then she attempted to start the IV. Well, my veins are pretty much shot. She tried three times to find a vein, and then she finally called someone from the lab to see if he could start the IV. Boom, on his first shot he found one. It was a painful one in my wrist, but still the same, he got it started. When I had to have IV iron infusions three years ago, they gave me 25mg over a six-hour period. I had to have three at $1600 a pop. I can no longer afford to go back there.

One of the things they are testing me with is a new solution that will allow them to give me 200mg IV push over a ten-minute period—such an improvement. Once the iron was injected, the clinical specialist had to observe me for 30 minutes for any type of reaction such as anaphylaxis. I did not have a reaction so I went home and turned on my stereo and sat on the couch.

An hour later, I found myself nodding off. However, it was not a case of slowly getting sleepy and just closing my eyes. This hit me like a lead balloon. I almost could not move—all my muscles felt slack. Then I realised I was bone-chilling cold. Now, to save on money, I do keep the house rather cool in the winter, but I already had on thermal underwear, sweat pants, a sweatshirt and my thick terrycloth robe. I was freezing. I tried to get off the couch to snuggle under my covers and barely made it back to my bed. It took 20 minutes before I started to feel warm. As tired as I was, over the next two hours, it seemed that I just clock-watched. However, when I got out of bed (now much warmer) I had vivid freeze-frame images as if I had been dreaming. I was not as tired, so I went to my kitchen to make a pot of hot tea. What a strange experience.

The rest of the day was uneventful so I dismissed the entire episode. I am just glad that I can now get my much-needed iron infusions free. I wonder how many sessions I will have to have to raise my haemoglobin back to normal range (it was 9.0 before the iron and normal is generally around 14-16 for females). According to the protocol for this clinical trial, they can give me up to 1000mg over a two-week period, but stop at any point once my haemoglobin is within normal limits. I hope I do not have to have too many since they had such a hard time starting the IV. You should have seen my arms after this session—I had four nicely forming bruises where each attempt was made!©2009

Appt With My GP

Ahh, Friday the 13th—ya gotta love it!

OK, yesterday I went to see my GP as a follow-up to all that fasting blood work. My psychiatrist actually called him at lunch before my 1615 appt to discuss his concerns about my apparent declining health. My psychiatrist told him that I flunked the Romberg test, so my GP performed some additional neurological tests on me. He confirmed that I have Ataxia, a neurological sign and symptom consisting of gross lack of coordination of muscle movements. There are many culprits, so I am choosing to ignore the more dreaded causes. There does appear to be an association with B-12 and B-1 (Thiamine) deficiencies, however.

On my lab results, my B-12 was within normal limits; however, not suspecting anything along these lines three weeks ago when my GP ordered the fasting blood work, he did not test for B-1. He decided to order more lab tests: Magnesium (serum), Phosphorous (serum), Basic Metabolic Profile (a repeat from the last one), Zinc, B-1, and Selenium. They are suspecting that the Ataxia may stem from a vitamin/mineral deficiency. The only problem is that my body does not absorb vitamins and minerals properly (I had gastric bypass surgery in 2003 which bypassed the ileum and a good portion of my jejunum, the two sections of the small intestine into which the stomach dumps). Most vitamins and minerals are absorbed in the jejunum, which may explain why I may have a serious deficiency. I can’t take vitamin pills; I’ve tried with no success with iron when I was severely anemic before resulting in an IV infusion of iron. Couple this with the fact that I am not eating anything (I lost 17 pounds since 21 October), thereby not gaining any nutrients from food; this can make for a nasty combination. It took three years for my ferritin (a protein that stores iron and releases it in a controlled fashion) levels to tumble down to 2 (normal is 20-200ng/mL for females) (and now it is down to 5), so maybe it has just taken longer for these vitamins and minerals to reach abnormally low levels. Sure beats the hell out of the idea that I may have some morphological problem in my cerebellum, a region of the brain that plays an important role in the integration of sensory perception, coordination and motor control. [gosh, I bet you didn’t think you’d be getting anatomy and physiology lessons on this blog :)].

I didn’t leave the GP’s office until 1800. He spent two hours with me. Now we wait for the results and these are specialized tests, which may take a couple of weeks on one or two, especially the Selenium (I hope that doesn’t translate into big $$$—I’ve enough medical bills as it is). These are so rarely ordered that the lab manager had to get out two huge reference books to look up what color top the test tubes had to have in order to collect the blood in the right test tube. And here she though she was wrapping it up for the evening when I was walked back to the lab! (I never seem to do anything half-assed). Meanwhile, I bought a cane this afternoon so I can walk without falling over. Yeah, that does a lot for my butch image…lol.©2009