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starringisis 09-04-2011 02:16 AM

My Anemia Story
For years, doctors have looked at my labs and said, "Eh, you're a bit anemic." Then my symptoms got worse. First it was the stamina dropping off- like my muscles didn't want to cooperate with me. Then it was the shortness of breath walking any distance over 50 ft. Then it was the muscle cramps- those were the worst. Always in my trunk, sometimes stretching around my back, sometimes just my diaphragm. Always super painful, and at very inopportune moments. Then the restless legs, the thinning hair, and the worsening stamina that makes meaningful physical activity impossible. OH! Don't leave out the cravings for ice. 24/7 ice ice ice ice, that's all I want when I can get my hands on it. I even bought a fridge that does filtered crushed ice so my teeth take less abuse. Lucky for me, I haven't busted a tooth yet!

All this, slowly over the course of the last 5-7 years. My weight gain gets worse during this time, naturally due to the lack of physical activity. My doctors chastise me- "Go home and lose weight," they'd say for every single problem I brought to them. They'd draw labs, and say, "Eh, you're still anemic." I really didn't know what that meant, and they never suggested any treatment for it, so I stupidly assumed that it wasn't a big deal. Except it was.

After being frustrated with the lack of decent care from my doctor, I started going to a new one. This one took more notice of the labs- "How long has it been like this? Years? And they never did anything?" she said. I started a long barrage of tests to see what the cause of the anemia was. My tests at that time included:

Upper GI (including biopsy to test for wheat allergy)
Lower GI (colonoscopy)
Pill Cam (that was fun- like Las Vegas in your toilet!)
Barium sonogram

And more blood tests. My new OB put me on Prometrium to reduce my period flow- works great, still taking it, but it did nothing to help my numbers.

All my tests up there? Every single one came back normal. No bleeds, no issues. I have a beautiful digestive system that is very efficient. It also hates taking the Slow Fe my doc wants me to take, which also does nothing for my levels.

Then my doc gives up. There is no longer any mention of my levels, despite the fact that last fall, my iron was only at 6. I thought I should see a specialist, but they wouldn't send me- they didn't suggest it, and I stupidly thought that it would be "rude" of me to be so presumptuous as to ask for it.

One day at work, a fellow tells me about his symptoms, and they sound so much like mine. He tells me about this great specialist he saw, and how he did the IV iron and gets B12 shots and that he feels like a new man. I ask for this doc's contact info, and I call the next day for an appointment.

Three weeks later with all my old labs in hand, I go to the doc. I bring my 17yo daughter along- she wants to be a doc someday and I want someone there to listen in case I miss anything. Did I mention that sometimes my brain doesn't want to focus like I want it to? Turns out, that too is an anemia symptom when it's severe.

The staff is ready right away- no waiting? The doc is very nice- no mention of my weight being the cause for my problems. He reviews the labs and talks to me about my symptoms. I have not written them all down, and I forget to tell him some. But the labs really tell the whole story. He says he's going to order the IV infusions for me- he says this even before he's drawn new labs and that tells me I should have come in here months, even years ago. They say it will take 2-3 weeks to get the insurance to approve the treatment, and then it will be 5 visits of 2 hours each over 3-4 weeks. They say I might have to do 2-3 rounds of this to get my numbers up where they should be. The doc sends me downstairs to the lab to get a fresh draw.

These are my current numbers, as of 8/15/2011:

Ferritin: 9
WBC: 4.9
RBC: 5.33
Hemoglobin: 9.4
Hematocrit: 30.9
MCV: 57.8
MCHC: 30.5
RDW: 21.3
Platelet Count: 483
Hypochromasia +++
Microcytosis +++
Anisocytosis ++
Methylmalonic Acid: <.10
Haptoglobin Serum: 221

I have my first IV Iron infusion with Venofer scheduled for Friday Sept. 9, 2011 at 2:30P. I am worried about having a bad reaction as some here have discussed. I am considering taking some Benadryl at home, preemptively just to ease my own anxiety a bit. I'm also really worried about the constipation issue, but the nurse says it's not as bad as it is with the oral stuff, but if I have trouble some Miralax will help. I do not like Miralax, but I like being able to take a decent crap better. (Sorry for the language, that's just the way it is!)

I have many hopes and dreams that this treatment will clear up so many of the problems I face with physical activity. My dream is to be able to be physically active again as I once was, and be able to do the things I can't do today. I just want to get healthy.

This is the thing that continues to bother me: Why is it that the other doctors either didn't really care about my condition, or just gave up? Was I not worth it to them? Did they just see me as a fat person who didn't deserve more effort on their part? Is it simply a matter of doctors not understanding anemia and the treatments available for it? And why didn't I ask to see a specialist before this? I knew they were out there, I knew where to look, but I felt that if my own doctor looked at my labs and didn't think it was necessary then it just wasn't, even though in my heart I wanted them to tell me to see a specialist and get it fixed.

I know this is really long, but I've read a lot of your stories here and it's really helped me understand this condition better and know that I'm not alone in dealing with this. If it's OK, I'd like to keep this updated with my progress as things go along.

Thanks! :wave:

anajam 09-05-2011 01:18 PM

Re: My Anemia Story
Thanks for sharing your story. Look forward to hearing how your IV iron infusion works out.

starringisis 09-09-2011 07:28 PM

Re: My Anemia Story
First IV Iron Treatment today. Arrived right on time for my appointment, but they must have been running late because I waited about 20 minutes. I was brought back to the infusion lab, and they have pairs of recliners set up in each area, about 6 of these down a long row. The pairs of chairs are divided by glass dividers, and each recliner has two guest chairs for support people.

I'm brought back by a nice guy in dolphin scrubs who makes a lot of goofy jokes- I guess since most folks are here for cancer treatment, they really work hard to stay on the positive side. I'm seated in the recliner, and there's an older (65+) woman in my area who is just finishing whatever treatment she's getting. She's alone, and that makes me feel bad for her. My hubs has come along, and I always feel better when he's there.

The dolphin guy gets the blood pressure machine and tries to take my BP. Last time I was here for my doctor visit, the BP machine didn't work for me then. I tell him this, but he puts it on anyway. The machine fails to take my BP, but just about squeezes my arm off, twice! Dolphin guy gets out the old school stethoscope and manual BP cuff and takes my BP that way. Finally, we're on to the main event.

The nurse is overseeing at least two other patients, but she's gonna have to take a lot of time with me. She starts off with my left arm, in the crook of my elbow, but there's something wrong after she gets the tube in there, and it's not working right. She tries a new site on top of my forearm, and that works better. She starts off with 2 parts iron (which looks like strong coffee in the IV bag) to one part saline. The iron feels burn-y in my arm, and she puts a warm heat pack on the IV site to help dilate the veins. This helps for a while, but then it comes back. She ups the saline so the solution is more dilute, but then I get the sensation that my veins are "rushed" and I feel panicky. I ask her to slow it down a bit, and she does. The sweet spot was 400 saline to 250 iron. It took less time than I thought it would- we were done with the whole thing in less than 2 hours- especially since I had her slow it a little.

Once things were flowing OK, I ate some crackers and drank some water. For some reason, I was expecting to have an iron taste in my mouth, but that never came. I tried listening to a mediation podcast, but it was super boring. I switched over to the StoryCorps podcasts and that really helped take my mind off what was happening on my left. At one point, the heat pack had really cooled off, and we put on a new one.

My hubs motioned that the iron bag was nearly empty, and I was really excited. The nurse came back and ran some saline through on its own for a minute and then took all the IV stuff off me. I got up and felt tired, and my arm felt achy overall and sore at and around the site of the IV.

We've been home for a couple of hours and I'm still tired. I don't usually feel physically tired, so this is new for me. I think it's because of my stress/anxiety about today's events. We're going to have dinner and I'm going to hit the sack early since I'm hoping to feel well enough tomorrow to attend a weekend-long training.

Lessons learned today:

1. Eat something light an hour or two prior to your treatment. Not eating will not help you feel better mentally.

2. Bring a variety of stuff to do, listen to or read, because you don't know what's going to be awesome to take in while you're taking in all that iron.

3. I suggest getting noise canceling headphones if you can- I have some from Jabra that aren't the super-expensive Bose ones, but they sure do the job. No listening to the incessant beeping from your machine or others around you.

4. Bring snacks. Drink water.

5. Make sure you have heat packs in your station- when you want a fresh one, you don't want to go hunting all over for it.

6. If you're a crier like me, bring your own kleenex or hanky- the hospital kleenex is like sandpaper.

7. Wear loose and comfy clothes that don't interfere with access to your arms. I was very glad I chose wisely on this today.

8. Try to take someone with you. Yes, you're not going in for cancer treatment, but it's nice to have someone else there for support. Especially if you're like me and already have a bit of phobia about needles and IVs.

Thanks to everyone who enjoyed the first post. I'll keep this updated each week as we go along with my progress. :p

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