Posts Tagged ‘hematologist’

Still Anemic

October 27, 2009

Venofer, intravenous iron.

I had my sixth iron infusion yesterday. That brings the total of intravenous iron up to 1100 mg, in the form of iron sucrose. I’ve been eating lots of leafy greens, black beans, and walnuts (along with anything else that boasts a high iron content, like molasses). And my iron levels still haven’t come up. Well, to be fair, they’ve increased a bit, but not enough to excuse me from future iron infusions. My hematologist would like me to try four more treatments, but because my veins are shot to hell right now, we’re going to take a month off. I’ll go back on December 7 for an iron re-check and a visit with the doctor, and then we’ll come up with the next phase of the plan.

In the meantime, I have a new supplement to try (Salus Floravit) that’s vegan and packed full of iron, and hopefully won’t bother my stomach, either.

On Sunday, my brothers-in-law invited my husband and me sailing. I’d never been sailing before, so this was a real treat. We went out into San Francisco bay, under the Golden Gate Bridge, and into the ocean. It was wonderful. Perfect weather, great company, and I LOVE the ocean. I can’t get over how amazing it was. I have some great pictures and great memories!

View of the Golden Gate Bridge from below in a sailboat.

Of course, no good day goes unpunished, and I spent yesterday and today recovering. Yesterday was particularly painful and exhausting, and while today has improved, I’m still not up to speed, and my stomach (fibro-related IBS) is very unhappy. But I have amazing memories so it was well worth it!

Speaking of stomachs, I also saw my general doctor recently because I’ve been having new and different back pain, and lots of nausea and stomach pain. My back was xrayed (mild scoliosis and disc narrowing, so not a real explanation for my pain), and I had a Celiac test done (no results yet). She also suggested taking Prilosec OTC for 2 weeks straight (I’d only been taking it when my GERD was flaring), probiotics, and small frequent meals. The probiotics seem to be helping a bit, although I still get nauseous every time I eat. I so rarely throw up that I can ignore the nausea. It’s probably just fibro and motility problems. (That’s my guess. My doctor is great and is smart about not dismissing everything as fibro until other explanations are ruled out.)

So it’s a low-key week for me. I certainly miss the days of being Super Productive Girl, but on the other hand, a nap on the couch sure does sound like it could cure the world’s ills….


still truckin’

October 2, 2009

I was going to post a general update, but before I get to that, I just wanted to give a little shout out to the only comment about this site via stumbleupon.

from: Plank2x4 reviewed 7 months ago
Give it time, Vicodin is still a narcotic, and now she is taking it on a regular basis… Watch the show House… she will be like him in two months! Great story! (source)

Up until about 97 seconds ago, I thought that it was good that “House” educated people about unusual medical issues. “House” has even been known to mention fibromyalgia as a legitimate disorder (even if it’s always ruled out, since fibromyalgia is pretty anti-climactic in show biz), which I appreciate, along with other little understood autoimmune disorders. However, this guy, a complete stranger, just accused me of being a junkie because of a character on a television show.

And here I am, discovering this 7-month-old comment, and I’m NOT A FUCKING JUNKIE. Unfortunately, I’m *also* not a brilliant doctor with impeccable analytical and reasoning skills, but I guess I shouldn’t be surprised. Because it’s fucking television.

So, in case you’re wondering, plank2x4 (although I doubt you are), I’m still taking Vicodin, and I’m still not addicted. I do take it daily in the morning, when my back pain is the worst, and on rare occasions (about once a week) I’ll take a second or third dose that day. One pill (that’s a dose of 5mg hydrocodone) once a day hardly makes one a junkie. This has been my routine since I started taking the Vicodin, and I can count the number of back pain flareups requiring a second day of extra dosing on one hand. (Once was the weekend we walked all over Chicago. Then when we walked all over San Francisco the week we came out to find a place to live. And then the week of my bone marrow biopsy, which kept me in bed for a good week or more.)

It’s people like plank2x4 the government is addressing when they use fearmongering to scare the pants off citizens about things like over the counter pseudoephedrine, even when you have terrible allergies, and prescription opiates, even when your pain is so severe you can’t pull your pants down to go to the bathroom, carry a bottle of laundry detergent, or bend over to empty the dishwasher. (That’s me, by the way, without my morning Vicodin dose, in case you didn’t figure it out.)

So, now that my feathers are all ruffled, and you know I’m not a junkie, I’ll tell you how the bone marrow biopsy turned out.

My iron stores are low. That’s the iron that’s supposed to be in my bone marrow, but isn’t. Apparently, my serum iron levels are borderline normal, but it’s still possible to have nearly nonexistent iron in the marrow, and when that happens, things start working overtime, and the bone marrow starts pumping out whatever it can think of to take the place of the missing iron, and that resulted in too many white blood cells and platelets. The treatment is effective and relatively simple: I need to get 6 weekly infusions (by IV) of ferrous gluconate (iron). The hematologist will recheck my blood during the course of this and at the end, and then decide if anything else needs to be done, besides eating iron-rich food and taking some iron supplements (while I am vegan, and this is actually not difficult to do in a vegan way). Hopefully she didn’t mean “recheck” with a second bone marrow biopsy, because there’s a high probability that I would flat out refuse another biopsy, especially without sedation.

I had my second infusion this week, and it’s going fairly well. After the first one, the very next day I went grocery shopping for the first time by myself in over a year. This is unheard of! I had mental clarity, and a little energy. By the end of the week, I was pretty tired, but that was the fibro talking from doing more than I was used to all week. I was still mentally alert! I still am now, actually. After the second infusion, I didn’t get much more energy, and I developed phlebitis at the IV site. They used the same site for both infusions, but this week the nurse used too large of a needle (they usually need to use the smallest), and banged me up pretty good (hurt like hell going in). It was rough. I had to go back to the treatment center just so they could check on it, and they said it should improve, but no more using that site for awhile. Since I don’t have any other less difficult spots, I’m kind of dreading my infusion on Monday. I’m not sure where they’ll stick me. :(

It’s pretty nice to have some of my brain back, though. I was really feeling… dumber. I still do stupid stuff (like forget to turn on the oven when cooking, or the coffee pot when making my husband coffee in the morning), but that’s more like “fibro fog” and less like my brain cells are wasting away, which I was starting to worry about. But apparently it was low-iron-fog instead. ;)

Anyhow, so currently my only (new) complaints are a near-constant stomach ache, probably from the massive doses of iron, and the phlebitis in my left hand. My hand is improving, and hopefully my stomach will either adjust, or return to normal when all these infusions are done.

I know a lot of “fibro bloggers” give lots of advice, but for now I’m just documenting this whole process, and my new found adequate healthcare. Honestly, what works for me might not work for you, and vice versa. Next time, I’ll talk about what’s working for me and my fibromyalgia.

I’m creeping a little too close to the 1000 word mark, so I think it’s time to wrap this up. Thank you for reading about one fat girl’s fibro journey. :)


September 8, 2009

I was going to start chronologically when it came to updates but I think I’m going to start with the most recent and then work back logically from there. I’m starting with the most recent because it’s the most painful and biggest obstacle right now.

For several years, I have had a high white blood cell count and a high platelet count. Every doctor has dismissed it as not relevant or useful or meaningful. My current GP sees it for what it is, a symptom of something, and sent me off to a hematologist. My great GP reminded me that she did not think I had anything serious or life threatening but did give me a heads up that she was sending me to a cancer center. I appreciated the warning although I admit my blood pressure was STILL through the roof when I got there.

So I was tested for various autoimmune diseases and simple anemia, as well as leukemia. Eveything was negative. I was tested for a proliferation disorder (where bone marrow just makes too many of certain cells), also negative. So the next test needed was a bone marrow biopsy.

This is sound logic and I appreciate that simpler blood tests were run first. However, I have a disease that makes me hypersensitive to pain and prevents me from recovering from trauma and stress in a timely manner. I expressed my concerns and, to be honest, I don’t think these people have ever worked with a fibro or cfs patient before. The assured me that lidocaine would be sufficient and absolutely would not sedate me, despite having read that sedation is not uncommon these days. The nurse practicioner was understanding and offered me morphine by mouth beforehand, because that was the best she could do.

So I went in for this procedure on September 3. I will spare you the details because they are upsetting but the gist of it is this: the pain was as close to unbearable as I ever want to get. I felt everything they did. I was in tears and I suspect I screamed. And on top of it sycking in general, it took 3 tries to get the bone sample out of my pelvis.

In hindsight, there wasn’t a lot of sympathic gestures. There wasn’t even a wheelchair offered to get us to the valet parking (walking was so very painful, and still is). They did not know I was allergic to latex until I got my husband to ask about the bandage they were putting on after. They were quick to offer benadryl. Pls dont sue us. They did bring orange juice when they found out I hadn’t yet eaten and the pain was making me sick to my stomach.

I think they were surprised at how I responded. I know I was. You know how you get all stressed about certain things and they turn out fine? Yeah… This was the worst experience i’ve ever had. And I didn’t think it’d be all that bad and believed most of my stress was fear of the unknown.

Since that day, I’ve been mostly in bed. I’ve taken a lot of naps and sat on the (uncomfortable and temporary) couch a little. I’ve been regularly taking vicodin that I use for my back. And that barely touches the pain.

Today is the first day I feel I can say “the pain has decreased,” but that puts it at an 8 out of 10 when it was 10 (or 100, it doesn’t matter) before. However, I’m still so tired. Like coping with pain is exhausting. And if only I could sleep enough, maybe it will stop hurting.

I’ve been useless at home, which is guilt-inducing. I also keep having hospital flashbacks (which are not uncommon for me but it’s never this severe). I jolt physically and remember the pain no matter what I’m doing when the memory is triggered (it’s often just feeling the current pain that makes me relive the experience). They give me nightmares. I hear people often saying that we forget pain. But I never do. I still remember how I felt when I broke my leg when I was 7. And how it felt to walk through 3 airports, return a rental car, and drive myself to a clinic with a broken foot. I remember this pain in my pelvis like it just happened.

I guess technically it did just happen.

I have a follow up appointment to go over the biopsy results on the 16th. I’ll let you know what happens.