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Old 01-06-2013, 09:26 PM   #1
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After the transfusion...

First off hello from a newbie!

So, I was in the hospital this weekend for a transfusion. My hemoglobin was 3.7 and my hematocrit was 15 point something. I hadn't felt "good" in months, but to be honest, I didn't feel in danger of falling out and was still working, cooking, and functioning okay, so maybe that's why it didn't feel as serious as it was. They kept pressing me at the hospital that I was really, really sick and my body had just adjusted. So I got 3 bags of blood and a bag of iron and was able to get out of there. And I can't lie, I feel great. I keep looking at my palms because I can't remember them ever being so pink unless I've burned myself. Also, I was only released yesterday and my nails (which were peeling in sheets) are already starting to heal. I am truly amazed.

However, they were pretty alarmist and have scared the crap out of me. One doctor said it's not a question of if I'm bleeding but where. So now I'm freaking out at the mere thought that I'm randomly bleeding from somewhere. They ruled out kidneys and bleeding from the brain (whew!), but I haven't gotten any of my other test results.

So my questions are 1. Is it really as bad as they say? and 2. If so, does anyone know around how long it is probably going to take to get some sort of answers as to where I'm bleeding from?

Maybe I'm being impatient, but I hate not knowing.

 
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Old 01-07-2013, 05:29 AM   #2
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Re: After the transfusion...

If your doctor says it is bad then it is bad. The ladies here are not doctors (that i have seen yet) Those are low numbers. Be thankful you have a pro active doctor! A lot of ladies here are complaining that their doctors aren't doing anything.
So I suggest do what the doctor says and try to stay healthy

 
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Old 01-07-2013, 09:44 AM   #3
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Re: After the transfusion...

I know what you mean about having a proactive doctor. I just switched docs so this one is brand spanking new for me.

A few years ago I was experiencing fatigue, vision spots, etc. It wasn't as bad as this time (I finally went to the doctor because of blinding headaches and going through like a bottle of pain killers in 2 days), but it was bad enough that I wanted to at least get checked out. That doctor never took one blood or urine sample. He just looked at me and told me I was depressed and put me on Zoloft. It was such a bad experience I avoided going to the doctor until now (3 years later).

In retrospect, my iron was probably low then and I wonder if I had a decent doctor at the time would it have ever gotten as low as it had last week?

I'm still ready to go to the next step and see what's going on. I have to wait an extra few days because my doctor is on vacation until next Wednesday. The suspense is killing me!

 
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Old 01-07-2013, 11:27 PM   #4
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Re: After the transfusion...

Ok so first thing is first, welcome! My Dr. did the same thing to me and handed me anti-depressants. Thank goodness that the labs are fast here and I knew the next day. He called and said we needed to trade the antidepressants for iron. Reason being that being low on iron can cause anxiety and depression so he wanted to treat the low iron first and see if my depression/anxiety improved. It's been a long fight.

Having said that WOW, 3.7! That is crazy low and you definitely needed the blood. I think mine was about a 8 and I was blacking out. Being anemic is kind of a big deal, so yes I agree with the other poster be glad you do have Dr's that are being proactive because there are a lot of ladies here that do complain of not having a Dr. that cares. This isn't something you want to brush off. Sometimes people do not feel the full effects of anemia but even if you aren't feeling them doesn't mean it's not serious. Iron is what helps our bodies get oxygen, cells, organs etc. It's pretttttty important!

The reason they are checking for bleeding is that is usually the cause, but sometimes it can be from other things including Celiac's disease which wouldn't hurt getting checked for either as well as low B12.

Do you have a period? Do you bleed heavily every month? If not maybe an ulcer? Gastric bypass? Anemia is just a symptom, unfortunately. I think in your future you will probably be looking at iron infusions, I don't see iron/ferritin numbers but I'm guessing you are pretty low.

Last edited by Heatherx5; 01-07-2013 at 11:28 PM.

 
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Old 01-18-2013, 10:10 PM   #5
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Re: After the transfusion...

Update: I had a follow-up appointment Wednesday. They haven't found any internal bleeding at this point. However, I'm dropping already and have low white blood cell and platelet counts so they are sending me to a hematologist.

I'm actually feeling a bit tired again, but I don't know if it's my blood or that I have a cold.

I hope they find the cause soon!

 
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Old 01-19-2013, 07:26 AM   #6
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Re: After the transfusion...

Have they done any oscopies yet? I had a colonoscopy and an endoscopy done on the same day because my doctor wanted to rule out any bleeding in my digestive tract. The doctor who did the procedures told me there was no bleeding. My primary care doctor told me when we talked about having the oscopies done that if they didn't show anything, we might do a bone marrow biopsy. I haven't heard back from the doctor's office yet, and the oscopies were done on Dec. 27, so I don't know if he still wants to do that or not.

 
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Old 01-21-2013, 07:00 PM   #7
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Re: After the transfusion...

I'm having the same issue as you. One dr I saw stated that they need to test and rule out certain things so its good they are doing something for you. How about a stool sample test for blood? My dr ordered one and indicated that you can lose super small amounts that equal up to a lot overtime and not even realize it. I was told also if the testing goes far enough they will test bone marrow. Have your docs talked of that? Just keep pushing for tests until you get the answers you need. Hoping for some good news for you!

 
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Old 01-22-2013, 02:39 AM   #8
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Re: After the transfusion...

They asked me if I'd seen any blood in stool, and I haven't, so the issue hasn't been pushed. I guess they ruled it out because the colonoscopy came back clean. Bone marrow test was mentioned when my primary doc ordered the oscopies, but it's been almost a month since I had those, and I haven't heard back from him yet about doing any more testing yet. I do go back in April, so he may be waiting until then, or maybe he feels I'm okay for now (*shrugs*).

 
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Old 02-11-2013, 10:08 AM   #9
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Re: After the transfusion...

I had a stool sample while in the hospital but no oscopies. Whatever came up in my blood work has them leaning away from me bleeding internally. About 10 years ago I was told I had a malabsorption issue by my university clinic (which I do admit they thought was serious at the time), but I ended up graduating and leaving the state and never really thought about it again until this happened and I had to pull it out of the recesses of my mind.

I've been having terrible luck with the iron supplements. They pushed me from 2 to 3 ferrous sulfate tabs a day and apparently my body is like "yeah right, nice try" so I lost like 10 lbs from the loss of appetite and diarrhea it was causing.

Anywho, I finally have my hematologist appointment tomorrow. I'm looking forward to it.

 
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Old 02-11-2013, 03:38 PM   #10
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Re: After the transfusion...

So far I've not been doing too badly with the iron. My only problem is remembering to take all 3! I was doing fine until I came up hypothyroid and started on Synthroid, which can't be taken less than 4 hours before or after an iron supplement -- they don't work and play well together for some reason, so I've taken to having my Synthroid almost as soon as I get up, but by the time 4 hours has gone by, I'm in the middle of my Pre-K class and the very last thing I'm thinking about is taking my iron (until lunch comes around and I have a minute to breathe, that is). I try to get the other two in before bedtime, but sometimes I only get in one more.

 
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Old 02-21-2013, 12:44 PM   #11
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Re: After the transfusion...

The hematologist believes I have a malabsorption issue with no serious underlying cause and that I'll just have to have my iron checked every 6 months for the rest of my life.

That said, I was was supposed to start iron infusions, which I was so excited about because with my iron dropping (again) my nails were starting to peel in sheets (again) although I still feel pretty great since the transfusion and the iron infusion with Venofer that I received after my transfusion.

So, they were to start me with InFed, but lucky, lucky me had an allergic reaction! During my test dose my throat started closing up and I turned into a lobster. After a double dose of Benadryl and some saline they sent me my merry way. So we have to try again next week once they approve a better (read:more expensive) iron with my insurance company.

 
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Old 06-14-2013, 08:12 PM   #12
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Re: After the transfusion...

I understand about your not knowing your hemoglobin was so low. I was doing everything, working, shopping and traveling. On May 1st 2013 I went to dr. I was losing wait without trying. He sent me to hospital and they admitted me with 3.3 hemoglobin. I had no clue, it had taken me longer to get dressed that morning, but that's it. I got 4 units of blood went up to a 7.9 and was released from hospital. I knew I had to go to a
Hemotolgist, I am very fortunate to live in a town with a research hospital, for cancers. I felt good during my appointment then my blood came back 5.5 was admitted right away . First they gave me cat scan, ( little did I know they were checking for serious cancers...negative )so I got more blood like 4 more units. They a bone marrow test, ( which honestly if you ask for strong pain meds isn't so bad. ) Then came the waiting for results the stress is amazing. The results were negative. So I left the hospital, at 10 hemoglobin. I went for blood tests and was up to 11.5. I made reservation to travel to my vacation home with kids for Labor Day yeah!!, Boom I was back to 9.5 terrified and all the kids went I stay at home terrified so it was down hill from there. I had been on 60 mg prednisone apparently not working. To me the scary part is I don't have a clue if my hemoglobin is dropping. The only indication is when I get blood test results. since May 1st my life as an independent person has disappeared. The stress waiting for results is awful.
My doctor who is amazing ( thank god I don't have second guess him) had put me on rituxan, 4 infusions 1 each week for 4 weeks. Had my first one on Wednesday, it went well but I won't know anything until next Tuesday when I have an appointment with dr.
My life is so out of my control since May 1st . How could this happen, why did this happen and will it be cured or just put into remission. I could a accept a lengthy remission. I get scared at times, but keep working, gardening, going to concerts however the thought of my new disease doesn't leave me. So, next week should I plan to travel after seeing the doctor or what will he tell me ...the airlines must love my cancelled tickets fee and more importantly what if the rituxan doesn't work......this sucks!!!!!
Unbelievable

 
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