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Sarah2010
03-21-2011, 10:24 AM
Howdy ya'll
I just spent the last few nights in the hospital but am home now :).....It always starts out the the same way for me and then it's a quick downhill spiral. I start with a fever...it last for a few weeks until I cant take it anymore...I start to notice the butterfly rash, My body gets weak, I'm more tired than usual and BAM..I get hospitilized. This is the 5th time it has happened this way!!! The weirdest part is...My blood work always "looks fine" when they initially check me out in the ER, then I insist not to send me home because I feel TERRIBLE and then within a few hours...my hemoglobin is sooooo low that they are rushing to transfuse me! It is crazy and it happens so quickly. IT is so weird that my blood just dissappears. I'm not passing any blood..it literaly is there and then gone.. Anyways I feel much better since my two transfused units on Saturday, but I cant help but wonder if anyone has such intense anemia with their lupus? Thanks for listening.
-Sarah

GoodDog
03-21-2011, 11:19 AM
Recently I was hospitalized 3 times because of anemia (6 transfusions). They tested me from one end to the other and couldn't find where I was bleeding from either. Ruling out everything else they said I must be bleeding from the small intestines that couldn't be reached by scopes. I was diagnosed with gastroenteric arteriovenous malformations - the walls of my veins are thin and bleed through. I start today going to a hematologist weekly for iron infusions as my doctor said it's too dangerous to keep getting blood transfusions. I hope they find your cause and you continue feeling better.

tgal
03-21-2011, 12:00 PM
Don't you just want to shoot them sometimes? You look ill but your blood work looks normal so you must not be sick. They make me soooo angry!

GoodDog
03-21-2011, 03:02 PM
Sarah, I just got back from having my first iron infusion and it wasn't bad at all. It took a total of 1 1/2 hours and the nurse said I should start feeling better in a few weeks. I took my Kindle and read so the time went by real fast. I go back every Monday at the same time. They drew blood at the beginning and are going to check my vitamins and other stuff each week too. I was in a room with chemo patients getting their treatment and it made me get off my pity-pot for sure!

Sarah2010
03-21-2011, 04:55 PM
GoodDog,
I am glad to hear your iron infusion went well, I hope that it works for you!!! You said that you will go back every monday..how long will you have to continue to do this I wonder.
No Dr has ever mentioned any sort of gastro intestional problem or has ever done any test of that sort. My Drs chalk it up to lupus..."It must be distroying its self" thats all they ever say. I really think that their is something else going on.

bunny28
03-21-2011, 05:09 PM
Hey Sarah - I don't know anything about the blood transfusions or anemia but I just wanted to say keep pushing for yourself. I am amazed at how fast things turn for you. I hope that they can figure out why it is happening and maybe give you some option like gooddog gets...Anything has to be better than emergency hospitalizations and blood transfusions. That is so scary. Take carea nd I hope things are going better today.

GoodDog
03-21-2011, 05:46 PM
GoodDog,
I am glad to hear your iron infusion went well, I hope that it works for you!!! You said that you will go back every monday..how long will you have to continue to do this I wonder.
No Dr has ever mentioned any sort of gastro intestional problem or has ever done any test of that sort. My Drs chalk it up to lupus..."It must be distroying its self" thats all they ever say. I really think that their is something else going on.

My doctors said they diagnosed me by elliminating anything else it could be. They said the blood has to be going somewhere and no matter where it's going I need to hae it built up regularly instead of always in the hospital. My doctor explained that there is a protocol they follow and that the result is getting weekly infusions possibly for life. I guess that will depend on the results of the weekly bloodwork they do.

If you have been hospitalized 5 times with this I think it's time to make some noise or go to a different hospital. My doctor recommended a hospital ER 20 miles away because she said the one closest to me probably would just send me home!

Did they do endoscopies on you? I also had the camera endoscopy where I swallowed a camera and it took pictures inside me, but nothing of significance was ever found. They said Lupus can cause the walls of the blood vessels to be thin and blood can seep out (not the medical terminolgy they used LOL). What has your hemaglobin been when they admit you. My first visit was 6.2 and the following visits were 6.8 and 7.

GoodDog
03-21-2011, 06:21 PM
I just thought of something. On my 2nd visit to the ER I asked the ER doctor what happens if they don't find the cause. He said that some people have to come to the ER regularly when they feel their hemoglobin is getting low and get transfused. I told my GP what he said and she got upset and said that that's unacceptable and the reason for the blood loss needs to be found. Like I said earlier, she said it's too dangerous to get blood on a regular basis and it should never be a regular treatment. That day she sent me back to the ER because my hemoglobin was back down to 7 when she checked it in her office. That was a couple of weeks after the second transfusions. She referred me to a hematologist and told the ER doctor that when she called ahead for me. I have a feeling she said some other things too. LOL I'm so grateful for her!

SandyR
03-22-2011, 08:46 AM
Sarah I'm so glad to see you on here again. I just wish you weren't feeling so sick right now. It's crazy how quickly things are going from bad to very bad with your blood situation right now but I thank God you know to listen to your own body and insist on being treated. Do the doctors have any other solutions for you? An iron tablet to start with maybe? Some nice big blood rare steaks for dinner?

Sarah2010
03-22-2011, 10:06 AM
GoodDog,
I refuse to except the fact that their is no known cause for my blood loss...I really really feel like ignoring this issue, or at least down playing is only going to hurt me more in the future. I was talking with my mom and I told her I just KNOW that something is wrong...I can feel it. Im going to spend the day surfing the internet and try to get some insite on what the heck is wrong with my blood. ALso, I am going to see if I can get an appointment with a hemotologist. No more dancing with fire..Its time to get better damn it!!
SandyR,
Thanks for the warm welcome back. I have added a ferris sulfate (iron pill) to my daily meds...It might help maintain my hemoglobin a little, so I'll give it a shot. Shoot, I'd try anything at this point even if that means rare steaks for dinner. :)

GoodDog
03-22-2011, 10:47 AM
I always get my lab results from every doctor I see and put them on a spreadsheet. I've read a lot about anemia and the doctor told me if I wasn't reproducing new blood cells as fast as I was losing them that could also cause anemia. My blood tests didn't show that was the problem but even if it did I would still need long-term infusions to maintain a healthy hemoglobin. So I don't understand why they didn't refer you to a hematologist. They didn't put me on oral ferris sulfate because they said the amount I needed to do any good would hurt my stomach. I agree that you should try to get in to see a hematologist and if I can help you with anything let me know.

Sarah2010
03-22-2011, 12:47 PM
GoodDog,

I am a terrible record keeper!! I am a right brained artistic mess..lol So the filing and spread sheet sounds like torture to me!! I do have a binder that has some records from the past, but I think I will actually try to do a better job with it. I know that keeping my own files will help me. I also wanted to say thank you for responding and giving me some insite on this anemia thing. Although I am sorry that you have the same, or similar blood problem as me, I am thankful to have someone to share info and ideas with. Keep me posted on your iron infusions and anything else you might find out. I will let you know when I get a hemotologist apt and what they have to say. Thanks again for your help.
-HUGS
-Sarah

tgal
03-22-2011, 12:57 PM
Good dog is correct. Even if you can' do the spread sheet then just make sure you have a copy of all records. Get 2 sheets of paper. One of them is for all labs that have come back out of range The second one is for you to do a brief overview of your history. Give them a snapshot of your illness since it began. No doctor is going to take the time to read all of your records but you can hand this to them as soon as you walk in the door. This way they have a brief idea of you as a person not just a patient.

You have to get control of your care because your doctors wont!

GoodDog
03-23-2011, 05:36 PM
Sarah, did they find occult blood in your stool? They asked me if my stool had ever been black and I said no but it tested that I did. I would have called mine dark brown not black but now I know what they mean. Sometimes I'm too tired to give definitive answers and realize later that I answer no when I should have explained more. Also, do you know if they did the blood test to check your bone marrow? That's where some anemia comes from because the cells aren't reproducing properly. Hopefully I got that right.

Sarah2010
03-24-2011, 01:39 PM
Sarah, did they find occult blood in your stool? They asked me if my stool had ever been black and I said no but it tested that I did. I would have called mine dark brown not black but now I know what they mean. Sometimes I'm too tired to give definitive answers and realize later that I answer no when I should have explained more. Also, do you know if they did the blood test to check your bone marrow? That's where some anemia comes from because the cells aren't reproducing properly. Hopefully I got that right.

I havnt ever had my stool tested, but continually their is a small amount of blood in my urine. I feel like I pay pretty good attention to what's coming out so I think I'd notice the "coffee ground" like poo. BUT maybe i'm not looking for the right things. Also U had previously asked what my hemoglobin has been when i've been transfused...this last one last week it was 7.2 which is the lowest so far. The other times they were in the high 7's and low 8's. ALso, I have had a bone marrow biopsy in the past im sure they checked it then.

GoodDog
03-24-2011, 01:52 PM
My stool didn't look like coffee grounds, it was the same just dark. The bone marrow test they did on me to check the cells was a blood test not a biopsy. Some AIs can cause the cells not to reproduce properly. Hemoglobin in the 7s is pretty low and should be dealt with. It doesn't give you much room if you have something happen and bleed. Plus you must be extremely fatigued and weak when it's that low, I am. One of the first things they did with me in the ER was a rectal exam to test for occult blood. They never did this with you?!?! I think when it happens again you should go to a different ER. Were you able to find a hematologist? Also, be sure not to take aspirin. I told them I was taking Excedrin but no one told me that can make bleeding worse until the 3rd visit to the ER!

SandyR
03-25-2011, 07:37 AM
I havnt ever had my stool tested, but continually their is a small amount of blood in my urine. I feel like I pay pretty good attention to what's coming out so I think I'd notice the "coffee ground" like poo. BUT maybe i'm not looking for the right things. Also U had previously asked what my hemoglobin has been when i've been transfused...this last one last week it was 7.2 which is the lowest so far. The other times they were in the high 7's and low 8's. ALso, I have had a bone marrow biopsy in the past im sure they checked it then.

Good Dog is right, it doesn't always look like coffee grounds. When I was first diagnosed with IBS 12 yrs ago they found occult stool. It doesn't always look like anything other then normal stools and mine never looked like coffee grounds. I've had incidents where you clearly can tell there is something going on, but most times when they test me for that it looks like plain ole poop to me.

Sarah2010
03-25-2011, 10:59 AM
OMG get this...Last night I was struck suddenly with a TERRIBLE migraine. I tried to wait it out and relax, but I KNEW that this was different. Plus after being hospitilised last week I didnt want to take any chances. My mom rushed me to the ER...When she wheeled me in they were going through all the triage questions when all of the sudden my stomach started rumbeling.......and I kid u not....I felt the gerth coming from the tip of my toes up and low and behold, I vomitted pure blood!!!!! I was soooooooo soooooo scared I started crying. IT was cherry red blood like in a movie, that then turned into black thick coffee ground like blood within the hour. They did a CT scan of my head and said it was fine, Just a bad migraine...and also they non shalantly (SP) said its probably a tear in your stomache or an ulser...and they didnt seem worried!!!!!! WHAT THE F!!!! I was spraying blood out of my body and they wernt worried????????? They gave me a ton of morpheine for the headache, which I still have by the way...and did nothing like a stool sample, or ultra sound of my stomach or anything. I know this is sort of a ramble, i am still out of it and feel shitty...but come on!!!!! No one sees a connection with the fact that I keep on getting blood transfusions and for once their was proof of bleeding comming from somewhere. My GP didnt seem concerned either.....hmmmmmmmm. I dont even know what to do at this point, my DR is usually so good. Someone help please!!! I need to see a DR who actually gives a damn!!! I havnt vomitted blood since last night, and i've managed to have a piece of toast and some water...I still have a head ache. THanks for listening.

-Sarah

Sarah2010
03-25-2011, 11:04 AM
I wanted to add that my mom has been the biggest help and my biggest advocate through all of this crazyness. I am so blessed and happy to have her by my side and listen to me when I swear that something is not right and that I need to get to the ER! I have the BESt support system at home!!!!! I couldnt do it without my family. Now it I could get a DR to listen to me and do something.

SandyR
03-25-2011, 11:47 AM
did they let you home then and not check you for anything else, like maybe some sort of digestive track blockage or a hernia?

Sarah2010
03-25-2011, 12:09 PM
did they let you home then and not check you for anything else, like maybe some sort of digestive track blockage or a hernia?

THey just sent me home and said to get some rest. I am trying to make a Drs apt to have them check my abdomin. Like a CT or an ultra sound or anything. I feel as though it shouldnt be assumed as to what is causing the bleeding.

GoodDog
03-25-2011, 01:54 PM
Oh Sarah!! You need to get to another hospital or doctor. Something is wrong and needs to be fixed!!! I had a team of doctors and the main one said they all met to discuss my case for over a half hour after all the tests were done. I can't believe what bad medical care you've been getting and I'm so sorry, hon.

Sarah2010
04-02-2011, 03:47 PM
OMG so when I thught it couldnt get worse..I am once again in the hospital. I was having that terrible migraine so went back to a different local ER and guess what...I had a sezior!!! the lupus caused y braibn to swell(b which is where the migrain came from) and bam!! I had a sezior in the hospital. I am recovering slowly. This has been the scariest few days of my life. I am so thankful to be alive.

GoodDog
04-02-2011, 08:24 PM
Oh no, Sarah!!! I'm glad it happened in the hospital!! Maybe now they will get to the bottom of it and find out what's going on! I'm so sorry and hope you recover quickly. I'm glad you went to a different ER. Please keep us posted as you learn more.

steve.b
04-03-2011, 01:56 AM
not everyone believes in god.
but he was watching over you.

so glad it happenned at the hospital, where all the right help was at hand.

Sarah2010
04-05-2011, 03:44 PM
still figuring out what is wrong. still at hospital. I will keep u all posted. Had another MRI today..they say its cerebritis (SP) (the brain swelling) but now I am having all sorts of self diagnosed vasculitis on my skin which makes me think it could be vasculitis in my brain?? The dr hasnt seen me since this am, then I noticed these red raised welts after he was gone. The nurse came in and said looks like hives. What do i know...SO yes i agree and take a benadrly. Not more than 15 min later, i am in a panic, sweating, faint, feeling crazy...I had an allergic reaction to the benadryl!!!!!! I didnt realize this until after they had given me two of them!!! I have felt awful all day. I dont know if this is vasculitis..I will find out in the morning. If this is not vascutiltis and it is is hives, i am scared to take any medications because i dont know if it was exactly the benadrly or some other new med they started me on this am. I HATE this and its just one thing after another..Thank u all for listening..I am sad and scared. ANd feel awful.

GoodDog
04-05-2011, 08:03 PM
That's the exact reaction I get to all antihistamines now. I took them for years for my chronic hives and never had a problem. Then one day after a surgery they gave me an injection and I thought I was losing my mind. Now I stay clear after trying all the different types with the help of an allergist. The only thing that helps my hives is prednisone. It's called a paradoxical response and it sounds like that's what happened to you.

I sure hope they get to the bottom of your problem soon and it's something minor that can easily be fixed. My heart is with you dear.

steve.b
04-06-2011, 06:31 AM
I am sad and scared. ANd feel awful.

sorry to hear you are still in hospital.
i am thinking of you constanly.
hope they find out what is happenning.

SandyR
04-06-2011, 07:27 AM
Sorry that I missed this thread the last week or so. I'm so so glad you had that seizure in the hospital. Finally the hospital docs had to see that something is not right! Are they checking your digestive issues now? Are you still having the blood issues? Have they ruled out MS or Bechet's or another vascular disease? I'm sorry you are scared and feeling alone right now. I will make a point to come check this thread more often (have to write myself a note so that thought doesn't get lost in Fogland). If you weren't 1000 miles away I would just come on down and visit you in the hospital. I'm a really good hospital visitor - have had tons of practice with it - and would bring you your favorite foods and a book or magazine and something to make you smile like a funny card.

Sarah2010
04-06-2011, 05:19 PM
THis is not vasculitis..it is a definate allergic reaction. my lips face eyes etc are swollen along with hives. I am afraid to take anything for it because i do not know what has caused this issue. they started me on so many new medications this last week, it is impossible to tell where the allergy is comming from. The best option we decided was to stop all medication. I am even scared to take prednisone!!! I have been laying here for over a day with a terrible allergic reaction but am refuing to take anything in fear it is the culpret. Good dog, how long did your adverse reaction last with the benadryl. I was given it yesterday at 12 would i still be having an allergic reaction to it? Some how i went from being pretty good the other day on the 1st to terrible now. any suggestions tips anything??? It even could be a food allergy?? I mean the possibilities are endless any one can be or become allergic to anything.
help

GoodDog
04-06-2011, 05:42 PM
The fact that the benedryl not only didn't help but made you feel the way it did is suspicious. Have you taken prednisone before with no problems? The prednisone is the only thing that helps me now. My reaction lasted 24 hours and it took a little longer for the hives to completely disappear. They told me that benedryl takes 24 hours to leave your system. It could be that you're allergic to something and the benedryl made it worse. That happens with a paradoxical response.

Sarah2010
04-15-2011, 05:29 AM
Good dog...
I am home from the hospital now. My allergic reaction went down...no one knows wht caused it...but i think it was the potassium infusions. I am still experiencing flair symptoms..pain, swelling, rash etc. despite starting cellcept almost 3 weeks ago. My body cant help but to feel like something is NOT right. I dont know if its the disease or all these new meds that r making me feel so badly. I am having so much anxiety because i just dont feel right!!!I was released tues and have a drs apt this am hopefully i will start to feel better or these side effects will subside. I am a mess...

Sarah2010
04-15-2011, 05:31 AM
Hi good dog...I just typed a whole thing but lost it!!! SHoot.

Linda From Australia
04-15-2011, 05:46 AM
Glad you are home again. How are you coping, are you with your parents or living on your own. It must be tough when you have been in hospital so much

Sarah2010
04-15-2011, 01:05 PM
Linda....We are coping the best we can. My son and I moved back from FL to my parents house in IN almost a year ago. It is a lot of stress with my mother taking care of me when I am sick, AND taking care of my 3 1/2 when i physically can not do it. Our entire lives were changed when I was DX a year ago...Now that I have had a seziour most recently that adds stress also, as I am not to drive for 6 month nor be the only responsible adult around. I am thankful to have such a wonderful support system with my family...I am truly blessed. I just worry about the stress it causes on my mother. As for my physical coping from juet getting home from the hospital...well I feel like crap...my steriods r being reduced so i am once again swollen and tired.....but i HAVE to get off of these steriods, or atleast taper down...they were giving me 1000mg IV in the hospital...i am down to 60...and hope to taper, taper, taper...I HATE PRED!!!! Every day is different, i just hope my body will start cooperating and respond to the new cellcept I started in the hosp two weeks ago. Thanks for listening.....I hoope you are well.
-Sarah

GoodDog
04-16-2011, 01:11 PM
Oh Sarah!! I'm glad you're back home and please post about your doctor's visit. What is he saying he thinks is going on? I'm so glad you have your mother to help you but try to relax and not stress...as tgal often says, "it won't always be this bad."

steve.b
04-18-2011, 06:26 AM
glad to hear you are out of hospital.

on the road to recovery.............