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Blueberrybook
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Member Since: Oct 2017
Location: La Porte, TX
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Default May 09, 2019 at 03:01 PM
  #1
Sorry for being a stranger here. I haven't kept up with any of the posts, so I don't have a clue how everyone is doing. Lots of hugs to those needing them.

So...I still have iron deficiency anemia. I've been having medical tests, procedures, doctor visits, blood draws, you name it. I am pretty sure I posted the colonoscopy was normal, the upper endoscopy showed gastritis and a small hiatal hernia.

I had a capsule endoscopy last Friday. I spent the day with my sister and 4 year old niece as my sister lives only a 10 minute drive from the GI's office whereas I live a 45 minute drive away. Anyway, it's much less chaotic to hang out and catch up with her while my older 2 nieces are in school. It was an awful rainy day, and I had to have 2 appts. - 8:30 AM to get the monitoring equipment on and swallow the capsule and 4:30 PM to have the equipment removed. There's a clear liquid diet then a no food or water period (which so sucked) both before and after swallowing the pill. I had a killer headache and was super fatigued until 2 hours after taking the pill when I could have clear liquids again. You can bet after water, my next clear liquid was black coffee. Once I could have clear liquids, I started feeling much better (nice too as you cannot lie down during this procedure). Anyway, those results will be back in a week or two.

On iron pills still, have had more CBCs and iron tests than I can count. Some numbers have improved a tiny bit, most stayed around the same.

I finally saw the hematologist earlier this week. Hematologist thinks the cause is likely due to the surgery I had to repair a perforated ulcer in Feb. 2018, gastritis, and the Protonix I'm on, likely a combination of all 3. I got another blood panel run. His nurse called me and told me some things are better, but it still does not look like much iron is getting into my red blood cells to help carry oxygen, and my iron stores are completely depleted. The doctor now wants me to have iron infusions (likely 2 of them). Of course, it requires insurance prior authorization, God knows how long that will take. Hopefully, that will help me feel better and start being able to build up stores.

Mood has been up and down. Guess that's why I'm mixed. Being so tired makes me sometimes be noncompliant with taking the nightly dose of Seroquel until I get myself hypomanic and then I start taking it again, not a good cycle at all.

I still have ice eating pica. My husband tells me I'm not a robot, I can stop, but no, I have to have it. I run the refrigerator ice maker out of ice, occasionally go to the store and buy a bag of ice. It's crazy.

We've had lots of things breaking - had to buy a new couch, washing machine is now jerry-rigged until H gets the part he needs through the mail. Even the stupid front door knob broke off, if you can believe it. This one the day when I dropped the stapler, which landed on my foot, rolled onto the carpet and broke. Was so happy the appt. with my T was coming up when we started getting crazy hard rain and flooding. I took my daughter out of school early that day as she doesn't ride the bus, and it floods around her school horribly, my car would have been toast. My hometown had 12" of rain. Thankfully, my parents, grandmother, and aunts & uncles who live there are OK. Another heavy round of rain is expected today. So my T cancelled with the rain and thunderstorms (lots of lightning strikes).

Now I guess I wait on the capsule endoscopy results. I have an abdominal ultrasound next week Friday. I wait on getting insurance authorization and the first iron infusion set up.

Wait some more. And I am not a patient person. Sigh.

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I shall be telling this with a sigh
Somewhere ages and ages hence:
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I took the one less traveled by,
And that has made all the difference.
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Default May 09, 2019 at 03:27 PM
  #2
Thanks for checking in with us, Blueberrybook! It sounds like you are being quite strong throughout all of this. Keep being strong!

I hope you finally get some firm results soon so that you can treat your medical issues.
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Default May 10, 2019 at 10:21 AM
  #3
Quote:
Originally Posted by Blueberrybook View Post
Sorry for being a stranger here. I haven't kept up with any of the posts, so I don't have a clue how everyone is doing. Lots of hugs to those needing them.

So...I still have iron deficiency anemia. I've been having medical tests, procedures, doctor visits, blood draws, you name it. I am pretty sure I posted the colonoscopy was normal, the upper endoscopy showed gastritis and a small hiatal hernia.

I had a capsule endoscopy last Friday. I spent the day with my sister and 4 year old niece as my sister lives only a 10 minute drive from the GI's office whereas I live a 45 minute drive away. Anyway, it's much less chaotic to hang out and catch up with her while my older 2 nieces are in school. It was an awful rainy day, and I had to have 2 appts. - 8:30 AM to get the monitoring equipment on and swallow the capsule and 4:30 PM to have the equipment removed. There's a clear liquid diet then a no food or water period (which so sucked) both before and after swallowing the pill. I had a killer headache and was super fatigued until 2 hours after taking the pill when I could have clear liquids again. You can bet after water, my next clear liquid was black coffee. Once I could have clear liquids, I started feeling much better (nice too as you cannot lie down during this procedure). Anyway, those results will be back in a week or two.

On iron pills still, have had more CBCs and iron tests than I can count. Some numbers have improved a tiny bit, most stayed around the same.

I finally saw the hematologist earlier this week. Hematologist thinks the cause is likely due to the surgery I had to repair a perforated ulcer in Feb. 2018, gastritis, and the Protonix I'm on, likely a combination of all 3. I got another blood panel run. His nurse called me and told me some things are better, but it still does not look like much iron is getting into my red blood cells to help carry oxygen, and my iron stores are completely depleted. The doctor now wants me to have iron infusions (likely 2 of them). Of course, it requires insurance prior authorization, God knows how long that will take. Hopefully, that will help me feel better and start being able to build up stores.

Mood has been up and down. Guess that's why I'm mixed. Being so tired makes me sometimes be noncompliant with taking the nightly dose of Seroquel until I get myself hypomanic and then I start taking it again, not a good cycle at all.

I still have ice eating pica. My husband tells me I'm not a robot, I can stop, but no, I have to have it. I run the refrigerator ice maker out of ice, occasionally go to the store and buy a bag of ice. It's crazy.

We've had lots of things breaking - had to buy a new couch, washing machine is now jerry-rigged until H gets the part he needs through the mail. Even the stupid front door knob broke off, if you can believe it. This one the day when I dropped the stapler, which landed on my foot, rolled onto the carpet and broke. Was so happy the appt. with my T was coming up when we started getting crazy hard rain and flooding. I took my daughter out of school early that day as she doesn't ride the bus, and it floods around her school horribly, my car would have been toast. My hometown had 12" of rain. Thankfully, my parents, grandmother, and aunts & uncles who live there are OK. Another heavy round of rain is expected today. So my T cancelled with the rain and thunderstorms (lots of lightning strikes).

Now I guess I wait on the capsule endoscopy results. I have an abdominal ultrasound next week Friday. I wait on getting insurance authorization and the first iron infusion set up.

Wait some more. And I am not a patient person. Sigh.
Blueberrybook- it sounds like things are moving along. Wish they'd figure out your iron! I know that's gotta be uncomfortable. Not to mention the fasting headache/dehydration (?) headache. Those suck!

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