A rant and a wohoo.

Last week I had Ivig, the infusion of 9 bottles took forever. 3 days in fact which meant missing 3 days of classes and also wasnt able to do much about my assignments. I was going in to a day case place. I found this infusion a lot tougher than the first. I got extremely tired, so much so that i slept on a chair had really bad headaches for about a week and my bp was low and heartrate was high.

The whole thing was so disorganised while in the hosp I was getting moved from pillar to post. I had to be in the hosp for 8 am and was leaving it at 5 ish. Was gettin rather pissed off by the third day. Then yesterday I had bone marrow biopsy, the doc didnt talk me through the procedure, when he was doing it he never warned me that i may feel some discomfort.

the first time wasnt too painful when he removed all implements I was thinking sheesh that was a breeze untill, the nurse said that there wasnt enough. When he went back in for more It was awful but i spose at least it is done now. I think the whole experience would have been a lot less stressful had he talked me through the procedure.

Today I sat in hematologist waiting room for 45 mins and left as I decided I wasnt goin to miss anymore uni when I wasnt actually ill.

Fair play to the doc though, she rang me and apologised for the wait (which i wasnt expecting). She also told me that my platelets are up to 144, which is amazing as the last ivig only took them up to 80. Didnt get to ask the details of why the bone marrow was done though like I had planned.

I know there is a good possibility that they will drop down a bit but am hoping i will have a long time as I have so much uni work to do, the last 3 months have been a nightmare.

Think that is all. and If someone manages to read this all without getting bored or falling asleep, Thanks.

welcome to the world of waiting and waiting. I have been lucky and always had ivig as an in patient and yes one gets moved around etc still but at least they come to me.... you might not think yourself ill but you be able to get extenuating reasons if anything like the English System. Inform the personal tutor you have if you haven't already done so for things may be straight forward right now but you may need more treatment in the future and if you reacted to ivig, a week out, or a day out is a long time in uni life and it is wise to let personal tutors be aware before rather than after if you can....

the other advantage of being an inpatient that it wont matter if ivig takes 9 hours and i believe they are meant to give it slow. too fast and you do get the headaches etc. slowness is the key.

but good to hear the platelets are up and hope they continue to be up for you, but please inform the personal tutor just in case there may be future episodes;) HOpe you feel better for the rant. Am a graduate myself and did have one episode whilst at uni and I found all the staff very good... i think blood kind of scares them a little and yes it is serious if left but well I think you might find it may well help you by telling them as soon as you can at least embarrassing it may be to begin with:blush:

yea ive let uni know, I am in England. The personal tutor has been great, I am a single mum as well as full time student. When all this kicked off I took my son back to Ireland to stay with my parents as it wasnt fair on him just waking up to someone else when I had to go into hosp and with the nature of ITP nothing is predictable so my assignments should all be in by beggining of March and then I will be able to go collect my son.

I am already fed up of the waiting thing, but I am happy for now as I cant remember how long ago it is from I had this energy, I think it was maybe back in July time.
Well I am kind of expecting them to drop again like they did after last infusion after 4 weeks my platelets were back under 10.

Are you in England? just out of curiousity as America seem to do things a lot different, unlees its just my hema. When do you get ivig and what dosage?

Shen - you sound just like me! When I decide I've had enough waiting, I leave too. Apparently, I was born without patience and can't stand to waste time. There are always better things to do.

I'm glad your counts are up and yes, the doctor should have talked you through the BMB. That does help!

I dont see why I have to see the doc in person, all she does is check through blood results and then decides wether something has to be done, they should have fone appointments or even email appointments for that kind of thing, I hate hospitals I always come out sicker than i went in.

I have never walked out on an appointment before waited an hr and half before, but decided ive spent too much time there lately if I was to turn up that late to an appointment i wouldnt get seen.

I think i am traumatized from the procedure lol. aw well feelin like i have my mojo back this last few days. long may it last dont know wether it is cause im off the roids or if its due to the platelet increase. got a bit of energy however I am feeling my joint pain again and had some minor joint swelling but because I had a while without the pain it will take a while to get use to again. (especially since I dont have any anti inflamatory meds)

How are you doing Sandi?

Did I tell u the rhematologist wants nothing to do with me untill my platelets are back to normal, he obviously doesnt know anything about ITP.

Oh also something I dont feel very comfortable about, I am not going to be seen again untill the 7th of March. Which I feel is a bit long as I will have no idea what my platelets are doing or what to expect at least the last time I was able to see that my platelets were dropping and was fully prepared for them to go down under 10 again. It was by the fourth week the last time that they were low.

Is this a long time or is it normal for a doc to leave it that long? (the doc did of course say that if I had any bleeding in meantime to get in touch)

Shen - if you feel that your counts have dropped or you just want peace of mind, I wouldn't hesitate to call and ask for a CBC. I've done that many times without having to see the doctor. I've also had many phone consults without having to go in.

The Rheumatologist won't see you until your counts are up? What the heck does that have to do with anything? Ooo that makes me mad. Why are you seeing a Rheumatologist? I must have missed something.

Shen, I am in England but I think from what I read we all have our own experiences of ITP and consultants do kind of respond accordingly to our side effects etc

Last time I had IVIG was back in 2006 (as haven't had any this time). I had a five day course. 5 bottles a day (well over the night). And yes I do get anemia symptoms but clear up once they finish the infusions. I just had steroids this time as I kind of begged that I needed to be away for the new year holiday and I think they heard even if a little belated which meant I had to catch the train to newcastle immediately after leaving hospital (Sheffield) bit caotic but made my holiday with thanks to whoever decided not to start the ivig.... I am now down to my last 5mg of steroid and finish that on thursday of which the test will really begin and am in Cardiff at the time. A week when taking 10mg a day I had forgotten one day and by evening I really felt very much under the weather and that night I got a blood blister. But luckily rmembered the steroids and took them. So yes am a little concerned about next week but not too bothered as am already in Cardiff rather than yet again begging the hospital to let me go on holiday. Even the NHS listen to us sometimes, though there be nothing on paper to explain why they didn't do ivig this time especially when I was admitted he said I'd be on it - though they walked away discussing whether there be enough time;)

HOpe for you and son that you get sorted soon and yes I agree. Blood tests especially my annual ones are boring but I appreciate they give me open access to the ward. I can ring up any time night or day and be going through to sheffield rather than bugging A&E. I am very happy of our NHS system after reading what I have read on here.

I have been ill from I was a child. Been seeing a rhematologist for an auto immune disorder that I dont have a definitive diagnosis for. This is not the first condition I have had with no obvious cause. The frustrating thing is they have always treated the symptoms and have given up on finding out what it is I have. But it has meant rhematology have been able to pass me onto another specialist, last thing i had was raised intercranial pressure that just went away itself after a yr n half but it was neurology that dealt with that.

During my pregnancy and up untill my son was one I had no symptoms.
From then they have gradually got worse such as joint, bone and muscle pain as well as extreme fatigue. That was my second appointment in a yr and half, was hoping they would have had something a bit more informative.just over yr following the symptoms starting up again I have this. I dont think all these things are unrelated anymore.

Sorry for ranting, just get fed up of not knowing whats wrong with me and fed up with docs.

Have you had an ANA done?

Whats ANA sorry docs dont tell me much at all, not sure what all tests they have done on me.

It's the Anti-nuclear Antibody test. It would be a start for testing for autoimmune issues.

I must ask the next time i see the doc.