lots of blood drawn seemsto take its toll

[jetjetjet]

on nov 2 nd rheumy ordered lots of tests [this is good ].on nov 3 rd tests in reg lab work done. later on the day of second draw , lightheaded, gitters , nausea,fatique, memoryloss. ben home from work ever since. i learned that some of the tests, the ones i could get codes deciphered were for vitamins deficiencys, metobolic panel , one may have been a lipid panel 21 vials in all [ i think ]. got ahold of nurse on inr . inr shot rite up there. lel said if i feel its continuing to climb , of to er.i go. so far so good i guess. has any one else had this or some thing similar. or is this my wackco system????. jet

[MaryF Administrator]

Hi there.... not so sure, I always feel ghastly in a hospital setting,....but sounds like an interesting thread, I shall look forward to seeing what others have to say. Mary F

[jessielou]

Hi jet,

i have low blood pressure and the vampires have always took loads (a neg blood group), so always feel dizzy, sick, headachy and not with it after bloods being drawn.

Sounds like tested for everything, hope gives a picture of whats going on with You!!

I went lipid clinic yesterday, crazy professor commented on holes in vein both arms, sorry Mr prof but everytime i walk in docs or hospital some vampire waitin for me.

Hows that inr? No being greedy now 4-5 enough!! Be careful jet!!

Hope feelin better.

Take care gentle hugs sheena xxxxx jess xxx

[Storky]

My two pennys worth......last time I was at London Bridge they took at least 11/12 vials. I always take myself straight to starbies for a quick cuppa and a nice cake to quell the shakes and reward myself!. After a sit down and a stroll through my hand held I have usually forgotten the experience by the time i have to move again!

Can you imagine my waist size (not brilliant now) if they kept taking that amount of blood LOL

[paddyandlin]

Hi Jet

when i was first ill and they were checking for everything I was there for 10 mins and the fill a whole load of vials and bottles up and had to stab me about 4-5 times as my vien kept collapsing and i felt dizzy i was told it was due to my blood pressure rasiing and me being stressed about going and the Blood clinic was reallyt hot so a mixture of them all now i do not seam to have issues when they have to do lots of bloods so i am not sure maybe worth asking the doc but that was my experience.

Paddy

[Izzchick]

Hi Jet,

I had a similar experience in November last year when having a LOT of blood drawn at the hospital. I was only on 75mg Aspirin at the time and i'd been having a relatively ok kind of day until this point, not feeling poorly. I had never had any trouble with needles or blood tests before this incident.

At first the nurses had trouble drawing blood at all, and it was after they had tried a few times that I became faint, confused, dizzy, shaky and my left leg and arm felt 'buzzy', sort of vibrating and weak. I ended up in a hospital bed for a few hours as every time the nurses tried to sit me up, off i'd go again.

I kept telling them that I felt like death - something felt REALLY wrong - but they just kept 'reassuring' me that I was simply anxious. I wasn't at all anxious before i'd begun to go 'funny'!

After this incident, I was left with a weakness in my left arm and leg for some months, and in hindsight, it's been said by one Rheumatologist that it's possible that it may have actually been a TIA. However, as I didn't have a brain MRI until 6 months AFTER this incident, nothing showed on it, and I suppose we'll never know for certain.

I've only since had one 'woozy' experience, this time in INR clinic. Again, the nurse had trouble drawing blood and it took quite a while, however other than dizziness and feeling 'fainty' for a short time, it was nowhere near as bad.

I hope this help and they get you sorted out soon.

Siân. x

[jessielou]

Hi Jet

Any news on the copious amounts of bloods taken yet? Hope you feeling better.

Take care gentle hugs Sheena xxxxxxxxx Jess xxxxxxx

[jetjetjet]

hi jess i am just finding out , of the 19 vials taken 23 ,tests were done , i wont put them out on the site til i find out more of them, seems rheumy is being very aggressive with me , this can be a good thing , but still be ok.thou i am finding out what the test are, i have to give new dc a chance to tell me just what he is doing , why , and a prognosis. i am still talking to my very 1 st dc via the comp.this gives me very much of a comfort , with my problem.i still havnt heard back from her . still waiting ???! but as soon i can figure out just what is actually going on i will, i promise i will let you know. thanks again for friendship. and concern . as i am sure we went to differnt schools together , your freind jet.

[jessielou]

Hi jet

pretty sure we did too. So glad new rheumy being so thorough. Very glad to hear you still in touch with first doc too, must be comforting!!

I'm so glad got directed to this forum, thanks haze!! glad kateh set it up!! Thanks to Kate!!

Is a great place, meeting lots of people in same boat!!

Thanks to you jet for making me smile when i feelin low!!

In fact as time goes on even with my aps etc I'm finding an awful lot to be glad and smile about.

Take care gentle hugs your friend jess (sheena) xxxx

[jetjetjet in reply to jessielou]

good moring my friend, well more tests are coming thru my comp . im up to 26 tests that rheumy has order from origonal 19 vials. im am seeing the rsults , othar docs dont have them , as of yesterday afternoon. the last 2 were the ig series. no results on those yet but i know they are some of the tests 1 st ran . got to go to dentist [ horray ] will check back later on bfn jet

[jessielou in reply to jetjetjet]

Hi jet

how you doing? I ok just can't shift chest infection 3 x nebuliser and breathing still bad. Had to stop antibiotics allergic I think. Not good thats all the penicillins and cefalexin out now!! Damn immune system.

Full house here this week got 4 children here 2 mine 1 stepson and his half brother. Plus eldest moving home with her partner so gonna be crazy here. House full of fun n noise!!!

Hope your results in soon.

Take care gentle hugs my friend jessielou xxxx sheena xxxxxxx

[jetjetjet in reply to jessielou]

hi[ sheena ] hows that, 1st time with this name?????? i can see some of my results , but they still are coming in . up to 26 now as of 2 days ago. reaffirmed aps, still i guess ? his agreeing with me i have primary ,every thing else looks good accept 3 protiens low ,low, low. his last tests were the i g series,which i dont have results yet, called other docs they have no info yet. they know they are out [not all] but i told them i have them , whats out so far anyways. he also said i have osteoarthritis in knees , hands,hips. something to look forward to , will have to wait for final prog nosis. you mentioned chest infection sorry to hear that, i know there is only a couple of penicillins i can take. amoxycillin, i may as well take water , it would work just as well on me. keep the troops in the house in line , and get yourself a pair of ear muffs, be well my buddy bfn jet

[jetjetjet in reply to jessielou]

sheena just made a huge message to you and the darn comp wouldnt send it, boy was i p---ed. than i lost the whole bloody thing , well i guess it shows every one my expertize with these machines, but i keep trying. you watch i will try to send a e-mail some day and they will get that massage i tryed to send to you!! and they will think ,what in gods name is he doing now___ or trying to do ? o well get back when you have a sec jet

[jessielou in reply to jetjetjet]

Hi Jet

Sorry crazy weekend, peace and quite now the little angels in bed, gone home etc. Only just managed to prise laptop from daughters fingers.

Glad in some ways bloods reaffirmed diagnosis Aps, hope the proteins not indicator of anything horrid.

I have terrible tech troubles at times, touch anything technical and I`m sure the machines think ha ha it Sheena, lets get her! Either that or my excuse is brain fog and fingers that don`t want to do what brain says!!

Still battling the chest infection, back to docs tomorrow see if he will sort the steroids he`s supposed to put me on every time I have a chest infection and a different antibiotic.

He one of those old school docs who is scared cos not got a clue about Hughes n lupus. Why don`t they do some research?

Hope results are ok, and that you feeling well today.

Take care gentle hugs Sheena xxxxxxxxx

[jetjetjet in reply to jessielou]

hi sheena , not good day for me , spent all day in e.r.with my dad who is 87 years old toes turned black now they are talking amputation of left leg . not quite just where yet , maybe at knee, they are trying to get his inr down with vit. K. and because he has a defibrillator implanted in him his cardio speacilist has to be brought in . so il be in hosp with him next few days . just another day in the saga. bfn jet

[jessielou in reply to jetjetjet]

Hi jet

sorry to hear that hon, sending hugs to you and your dad. Hope he'll be ok. You take care too.

Keep strong!!

Take care gentle hugs sheena xxxxxx

[jetjetjet]

thats buddy i can certainly use the boost , dad is refusing the operation , been talking to him on and off , hes stuborn dont you know, and we cant make him !so will try again in the morning . im just exhausted tonite , need some super and relax , hope tomorrow will be better thanks again . jet

[jessielou]

Hi jet

hope you got some rest and chilled a bit.

Hope dad listens. I think being stubborn goes with the territory doesn't, guess it keeps us going. Frustrating tho!! Very!!!!!

I wishing for better day for you all.

Take care gentle hugs sheena xxxxxx

[jetjetjet in reply to jessielou]

hi sheena thanks for concern and reply. its now 8:45 pm just got back from hosp. just got dad to sign about half hour ago , surgery set for 6 in a.m. if dad doesnt flip- flop again. we got his previous doc whom he likes and respects to come in after his hours to talk to dad ,i think it helped greatly, he is a good man and doc, he even said he come back if we needed this was great.let you know how things fall together. thanks again buddy jet

[jetjetjet]

ha sheena well we finally won the battle , the war may not be over though. dad made it thru in pretty good shape. he can hit himself with morphine when ever he needs it. today i needed a jet day , my feet are killing me. went to doc yesterday [the one that replaced the best one] he was having a stupid attack, and not having any patience myself didnt go over well. i told him if thats the best you can do , than thats it, send me a letter with all this foolishment on it and we will try again???? he wouldnt check my knees or hipps .i asked him what do we do when i cant stand on my feet again , his thought ,come back an see me again. ?!?!?!?!----so send me a letter with your prognosis, it shoudnt take long ,.you didnt do anything . i gave copies of 26 results from rheumy, he didnt have yet, i dont even think he looked at them, maybe hes crushed because i had them and he didnt?????? maybe i was just to hard on the young fella. maybe i need i good scolding from you ?? ha ha . your friend jet

[jessielou]

Hi jet

sorry late answering, crazy week. I am so pleased your dad come through ok, hope for a speddy recovery.

Sounds like rheumy not able interpret grey area, which is where us fall. Think a lot of them lack the vision to step out the box/textbooks and look at real world.

Think you just gotta keep pushing till this one listens or find another.

I wouldn't scold you hon, things pretty stressful for you right now, hang in there pal.

Better days got be round the corner.

Take care big but gentle hugs sheena xxxxxxxxz

[jetjetjet]

hay kido it wasnt my rheumy that i had the problem with, i had the prpblem with my g.p.[ general practisioner ] . he is the replacement for my beloved dr. mccall, god bless her. with a little luck come monday, ill call up there an see if i can get back to my rheumy , he is by far the best doc i got now. maybe its good that i wasnt happy with g.p. , who knows maybe that is what he was hoping id do. the only problem is when can i get in ? dont know the nureses that well yet, i may have to bribe them with a candy bar. hitchcock hosp is a 1.5 hour trip up thru the mountains, great drive in the winter. but i think it will be well worth it. it helped staying off my feet today, think it was really needed. god you will have to write down my docs names so we can keep things straight . i confuse myself some times , let alone trying to communicate with others, brain runs just a little faster than my one finger typing ability. my roomate mary gets i kick out of some of the chit chats [ she calls them] that we all do. she really does know how much every one here has helped me along, this was the by far the best place for me to be . thanks to you all sorry for the confusion sheena your buddy jet

[jessielou]

Hi jet,

don't be sorry hon just read through my post last night, doesn't make much sense. My inr dropped down to 1.4 so brain fog bad. Am one finger typing too and very slow tonight. Having to really concentrate.

Glad better for resting.

Some gp's don't really do to really well with aps. Mine scared to death. Poor soul.

Hope can get back to rheumy soon hon and make some sense of all results.

Hi to room mate Mary, hope she bossy and makes you rest. Xxxxx.

I got try get to gp in morning. Still got chest infection, so feel crap.

Hope you have better day.

Take care gentle hugs my friend sheena xxxxxx

[jessielou]

Hi jet

forgot to say is 3-4 hour trip for us to st thomas's in London, so understand about the long drive to hospital.

Take care gentle hugs sheena xxxxxx

[jetjetjet]

hi sheena i finally heard back from rheumy [hithcook- lebanon] not only a.p.s. i also have 3 more major blood disorders, some could be hereditary , he has never seen this before, he said no wonder i have inrs all over the place, along with all the other symtoms. he is surprised i am feeling as well as i have been. he wants me in a clinic, most likly up there as soon as he can get me in.he wants inr checked no less than every 3 days. my protien levels are scary-- 6 times lower than normal. igi and igm way out of wack also. also good chance i may have [pmr].try to let you know as things go down, but if you dont hear from me in a while, you will know where i am !! well thanksgiving today gotta eat some more you know [gobble til you wobble] your buddy jet

[jessielou]

Hi jet.

Glad rheumy being so thorough. Sorry you got more shit to deal with.

I hope the clinic gets all this sorted. It never rains but it pours!!!!!

Don't get too wobbly. Enjoy your thanksgiving!!!!

I still got chest infection is exhausting. Otherwise feeling better. May be the prednisilone doing that tho. Inr higher at 3. Wish it would settle preferably 3.5 - 4.5 would be good.

hope your dad doing ok and recovering!!

I hope you get through all this, i know you will, you a tough guy!!!

Keep in touch when you can.

Thinking of you,

Take care gentle hugs sheena xxxxxxxx

[jetjetjet in reply to jessielou]

good morning sheena, well off to see rheumy at dartmouth/ hitchcock in lebanon mid monday morning. talked to his nurse jill,she was so confused with results she was reading she called dr. chou on his mini vacation. 1st they said in about a week , dr said not good enough, he wants me asap. dont know if they are going to admitt me or not. jill has been his nurse for some time and she said she has never seen tests such results such as these before. she said this should be interesting!!!! i told she is lucky she will be dealing with the exception to the rule of ,logic, medicine, common sence, and sanity. she is welcome to my wacky world. she seems to have a good sence of humor wich is good, it will help when trying to deal with me. had her laughing thru whole conversation, she said ,cant wait till monday to meet you in person. she isnt the nurse i met the 1 st time there. this could prove to very interesting. what do you think ??!!??!! jet p.s. hope this chest problem of yours gets resolved soon, could it be something in your house, thats new that you are reacting to. ???just a thought your buddy jet

[jetjetjet]

hi guys - well some of my most dreaded fears are now reality, above and beyonthe aps i have 3 major blod disorders, fhuemy says i am still in a serious state of clotting, keeping me on warfaran, added 400 ml per day of hydroxychloroquine[plaquenil ],. it gets even better the pain in feet ,knees, and espeacilly hipps is avascular necrosis, also called osteonecrosis and aseptic necrosis. they found it with x-rays stage 1 at this point, will have to go back in next couple of weeks for mri to determinethe extent of damage so far. i have found out that its a loss of blood to bone, im wondering if i may have more clotting going on??? really liking doc , he is straight forward, but very efficient. a little hard to understand, speaks broken english. but no stones left unturned. i guess this all could be from the 4 blood problems. i think the mri should tell more. hope no more surprises, at this point i think im all surprised out let me know what you people think jet