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Just a quick update...I got a job and was working full time, but only for 2 weeks. It was a lot for me to do, but I made it through and I'm feeling pretty good. I got a cold from the lady I was working for, so that knocked me down a little bit. That was really hard because I was told to be in bed and that triggers SO much old stuff from being so sick for so long!!!
I'd say I'm at 85-90% right now. I had quite the stressful Thanksgiving, so that took a little out of me!! I'm STILL dealing with a lot of emotional stuff which seems to be the biggest answer for me in terms of my health problems. I have gained a bit of weight which as much as I didn't want to, I really needed it. I lost a ton of weight after my GB surgery...about a pound a day for about a week to 2 weeks.
It has been the greatest gift to be able to do normal things and not be exhausted. I'm off IV Rocephin, and on only 3 "killing" meds. I hope to get off more of them soon, but I'm not going to push my luck quite yet. I'm off of everything for sleep...I don't even take anything homeopathic. I fall asleep and stay asleep for about 7-9 hours and I feel rested! That is the first time in my LIFE that has happened.
I got my GED and passed it...actually did very well on it. I'm going to start with just one class in February to see how I do. I'm also looking now for part time work, about 20 hours a week. I'm taking a cake decorating class once a week which I LOVE!!! It's so much fun!
It's with great pleasure I say all of this because this time last year I didn't think I'd ever make it to another Thanksgiving.
I hope everyone is doing well on their path to recovery!!!
I got iron results last Monday and guess what????!!!! My ferritin went from 5 to 17 in 4 weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! In all 4 years I've been fighting this iron problem, that has NEVER happened! It's looking like I won't need iron IV's. I go back in 6 weeks to have my numbers checked again.
I think I know what has caused the change, but not 100% sure. I don't really care, as long as it stays that way!
I am in the middle of taking my GED, tonight is the last night. I am also still looking for a nannying job (can't remember if I said that on here before...). I have another interview today. It's really nice to be able to get on with my life!
So as some people know I have been trying to gain weight because I lost quite a bit after my GB surgery and was too thin even before that...the weight loss post op was very rapid. I am up to 2,000 calories a day and STILL losing weight!!!! I lost almost 2 more pounds...I guess I'm so active that I'm burning a lot more calories!
You should see my breakfast...it's 12 mini van's waffles, 3T almond butter, 1 banana AND 4 sausages!!! It has become comical the amount of food I have to eat!!! My mom laughs at me when we eat together.
About the iron, it has been determined (this is mainly to Jin...) that I do not have hemolytic anemia. Been tested many times and I don't have it. It's basic tests that would reveal it, and they're fine.
I see my hematologist on Wednesday morning and he is going to re-test my blood/iron levels and we will decide whether I still need the iron IV's. I have been taking oral iron, so we're hoping it is absorbing. If it's not, then I'll have to do IV steroids and Iron.
As for how I've been feeling...I've been doing GREAT! I registered for my GED and a CPR/First Aid class with the Red Cross. I am looking for a part time nannying job and have already had 2 interviews (started looking last Wednesday). There is a job that will pay $25 an hour and they're interested in me!!!! I'm only looking at about 20 hours a week and depending on the kids ages, it might be more, might be less.
I'm also going to take a cake decorating class because I've been wanting to do that for a long time now, but was too sick or too busy to do it before...now I can do it!
Overall everything is going really well in my life. I've been so fortunate that all of my hard emotional work has brought a lot of mental healing which has led to a TON of physical healing. I finally can say that I TRULY do NOT want to be sick. I don't read anything about health stuff anymore except I come on here maybe 1-2x/week. I went to a big Gala on Saturday night in Beverly Hills and it was amazing to be able to talk about things other than my health and all that stuff.
Nora, yeah, I remember that too. I am on an antiparasitic and have been for quite a few months, and I will soon start the PPI.
Just to update everyone...my ferritin and iron is really low again, my hematologist called and told me I need Iron IV's this coming week (he wanted to do it last week, but I said no.) This is the one that 3 out of 4 patients go into anaphylactic shock. his nurse told me last year that 3 patients they gave it to almost didn't make it downstairs and next door to the ER because their reactions were so severe. She said they literally were giving them shots of epinepherine in the elevator so they'd make it to the ER.
Needless to say, I'm scared. Also, I can't seem to stop losing weight because my appetite is totally out the window since the surgery, and fats aren't digesting well and are causing pain. So, I've been losing a pound every other day...it's actually scary...I even think I look too thin which is SHOCKING! LOL!
Dr B is going to talk to Dr H about getting me on IV nutrition because I'm malabsorbing so much that all my nutrients aren't going in...anything that is going through my intestines isn't being absorbed. She also said that might help me be stronger to help fight anaphylaxis...rather than my body croaking out on me, it would possibly help it have the strength to fight back more.
Dr H of course doesn't want me to have the Iron IV's, but Dr B really does. She said that I'm looking scary and need to gain weight AND get iron! I'm SO pale...I look like a "ghost" according to her. So she said that she can treat me for the Iron and we can hope that it will work. The other thing is, she'll treat me for the steroids because she thinks I really need to get this stuff done. I agree with her...I don't feel good mainly because I'm so low in iron.
So, that's whats been going on! Fun stuff for sure!!!
Do you by any chance remember which test? I have no memory of this...
I was supposed to start Protonix which is a PPI, but since I started on Reglan we want to see what helps me...so I will wait until I see the GI Dr again next week. If the Reglan isn't working by then, we will start Protonix to see if that helps.
I'm feeling better and better every day pain wise!
I am having a really hard time eating still though. I am barely getting up to 900 cals a day...and that's a PUSH! I feel like I'm eating 24/7 to get to that. I'm losing a pound a day which sucks because I worked so hard to gain a couple pounds. Dr B said I'm starting to look too thin again...
I have been drinking Starbucks Lattes every day...sometimes 2. But they have to be fat free so they're not very high in calories, but it's something.
I had a follow up with the GI Dr yesterday. He rx'ed Reglan for my nausea because he doesn't want me to keep losing weight because my body needs to spend the energy elsewhere. It seems to be helping, but it's not helping the pain from eating. I tried almond butter (only a 1/2 teaspoon) yesterday in my protein smoothie and I couldn't eat the rest of the day. I was in a lot of pain, so I told Dr B today and she gave me some enzymes for fat digestion because she said my body will have to get used to not having extra bile there from my GB.
Also, the GI Dr said I definitely have Celiac and he thinks that the reason I'm iron deficient is because I'm still getting some sort of gluten in my diet without knowing it. He told me to re-check every single thing I put in my mouth and to not eat anything made in a facility that processes wheat. He said based on my symptoms and the fact that I'm not absorbing oral iron, it's malabsorption from unhealed villi.
I just had my gallbladder removed last Friday (few days ago) and have been facing the food thing since then. I actually have been forcing myself to eat because I have had no appetite whatsoever and have been losing weight rapidly. I ate jello (sugar free because I can't eat sugar) and popsicles the first 2 days. I have just been able to add back soft foods (soup, light protein, bananas, etc) but I wouldn't worry about being hungry. Anesthesia and all the pain meds generally take away your appetite....or they do mine.
I would make sure though that you bring more food than you think because you might be hungry. I didn't eat most of the time I was in the hospital, but I have appetite problems anyway.
Also, thank God for Starbucks Lattes!!! That's the only way I've been able to keep some calories in me.
Thanks for all your thoughts and prayers! That was a ROUGH surgery!!! Basically, I woke up from surgery with 4 staples in my stomach and just having had my GB removed, and NO PAIN MEDS!!!! AHHH!
At first they didn't believe me and thought that I was a narcotic pain med abuser, but once my heart rate was in the 140's, they realized I wasn't hysterically crying for nothing. Once they finally were able to get me out of screaming pain, I went to recovery and the nurse told me I'm lucky I didn't die because the dose of the meds they gave me was so high people's lungs usually clamp in shock!
Then I was in the observation unit with a 24 hour nurse in the room, and they were giving me morphine shots, every couple hours. I got 6 shots in each arm . My arms still are sore!
When the surgeon came on rounds yesterday morning, I couldn't talk without crying because the pain was so bad. I was supposed to go home but there was no way...and he saw it. He upped the pain meds because the morphine wasn't cutting it. He gave me orders for 2 percoset every 4 hours along with morphine shots every 2 hours AND IV Torridol every 6 hours. That finally took the edge off.
I am in less pain now, but it's still no walk in the park. I haven't been able to eat more than about 700 cals a day which sucks because I'm losing weight fast and it hurts a lot to eat. I'm supposedly going to the GI dr first thing in the morning because he said the kind of pain I'm having isn't normal for post op. I'm still having pain as if I'm having a gall stone attack, but obviously there's no stones! The GI wants to figure out what is causing my pain, so we'll see what he says.
He was really sweet and called to see how I was doing when I was in the hospital.
I will keep you all updated as I can. It's hard for me to sit at the computer, so I might just email Carla updates from my phone in bed so she can post for me.
One last check in before surgery. I'm a little bit nervous, and when I get nervous, I get busy! So I've been making food (soup, etc.) for the hospital because I won't be able to eat anything there. I don't know if I'll be hungry, but just in case, I'll be prepared.
I have quite a few friends coming to visit since my mom isn't going to stay the entire time because she gets really overwhelmed in these situations. They'll be there from the time I wake up to pretty much when I go to sleep tomorrow night. So, someone will be with me almost the entire time which is nice.
Dr H has requested a sample of my GB to be sent to Igenex to have a Western Blot run on it. He talked to the the surgeon today and has arranged that. Also, I will start infusing Rocephin tomorrow night in the hospital because my GB will be out! (I haven't had a dose of Rocephin since Monday night in the ER)
I also have an iron update. My hematologist talked to Dr H and he said that he won't give me any Iron IV's without steroids...and Dr H said no steroids. They agreed to disagree that I won't be getting any Iron IV's... Dr H wants me to start on Vitamin A and C (already on C) and L-cysteine to help me absorb iron from my food, etc.
The problem comes in when my ferritin drops to 0 (which will happen in a month or so) then my hemoglobin drops slowly (meanwhile I feel like a zombie) and finally I will need a blood transfusion. So that wasn't great news.
I will email or text Carla so she can update you guys as soon as I'm able.
Ok....bad news. I have to have my GB out on Friday...only because they couldn't fit me in tomorrow. I have a fever and severe diarrhea (can't eat...) so they're worried it's infected. I'm not very happy needless to say. They don't even want to run more tests because my symptoms are so severe that they said there's no point, we already know I have stones.
They are concerned about a stone being stuck in the duct which can require open surgery which is a whole other procedure than just the laproscopic GB surgery. So they're going to have my GI dr (who I met today and was SO SO nice!!!!) in the OR ready just in case I need the second surgery. They don't know until they get in there and look at it.
I went to the GI Dr's office, and he diagnosed me with Celiac, officially! He said that he also thinks I'm IgA deficient because I'm so immunocompromised, so he ordered tests for that. He's also testing for C. Diff because of the very watery, urgent diarrhea, but that could be from the GB too.
He was the nicest guy ever!!! He said he was so excited to take on my case because I'm challenging. I LOVE to hear that!! He also wanted to talk to Dr H right away to discuss me because he has questions, etc. and he is overall interested in my well being.
He examined me and then sent me right over to the surgeon's office. The surgeon was like "you've been through a lot...you're a champion!" He was so sweet! They were both so nice, I'm so glad they didn't give me a hard time about anything! Even the GI Dr didn't tell me to stop the abx because possible C. Diff.
I'm really searching for the strength to get through all of this, I have a funny feeling about this all. I don't know what, I just feel like something is off. We'll see. I will email or text Carla so she can update you guys.
Another update... My hematologist called and my ferritin is at 5. It drops about 2 points a week at this point. Especially because I'm supposed to get my period soon. So my hema wants to premedicate me and give me a different Iron IV.
I told Dr H and he was like "noooo, not this again!" He is going to talk to the hematologist tomorrow so hopefully they will come up with a game plan.
Dr H said it sounds like my GB needs to come out...I've been having wrong looking urgent D. Dr H said that I'm ruining his football season! LOL!
He wants me to keep him updated so he can give his input every step of the way. Thank God he's so dedicated!
So I couldn't get in to see the GI Dr until tomorrow afternoon. I'll bring my CT results with me. I'm praying and hoping and wishing I don't have another attack because even the strongest dose of IV fentanyl (wayyyy stronger than morphine) barely took the edge off. And, they sent me home with just vicodin which isn't very strong.
The GI Dr will want to have me have an ultrasound and probably a HIDA scan. Dr H's PA called me and told me to up my dose of Actigall (prescription med for gall stones that they give when you're on Rocephin to protect the GB) and see if maybe that helps.
My liver enzymes are also elevated, so they will possibly have to pull me off the Rocephin...but we'll decide that more based on the GI Dr's opinion with the gall stones.
Also, I have to cut all fat out of my diet which is not a good thing...I was struggling to maintain/gain weight, now there is almost no way I will be able to maintain. I just hope I don't have to stay on low fat/protein for long because I will quickly lose weight with no almonds, etc.
I was also severely dehydrated and my glucose levels were high. I'm hoping that my blood sugar isn't a problem, but it's strange because I don't eat any sugar and I only eat low glycemic index carbs/starches.
Finally, I have a pericardial effusion...which I don't have any idea about. I googled it and it freaked me out, so I stopped, LOL!
I'm exhausted today, needless to say. I was in the ER until 2.30am today. I also feel crappy when I have to eat lots of carbs which is what I'm having to do in order to keep my cals up. I can only have 6oz of protein a day!!! I usually eat that at lunch and dinner, plus protein bars and smoothies!!!
Nora, thanks for the articles! I will talk to the GI dr tomorrow about the low ferritin. They'll probably want to run more tests (endoscopy, etc.) to see if there is an internal bleed or not...also to get to the root of my nausea, possibly. We'll see.