Posts Tagged ‘Blood Test’

Note: this marks the start of my backdated posts, covering the period that I was hospitalised.

I’d last been posting about the gastric issues I was experiencing. Things went rapidly downhill on the Saturday and I was having constant, excruciating pain in my stomach and chest, alongside vomiting after only sips of water; I also experienced some rectal bleeding and started to grow more and more concerned. This continued all through the night, until we could get hold of the out of hours doctor, who told me to get to our local hospital straight away.

The doctor there examined my stomach, which was extremely tender to touch, and admitted me to the Emergency Assessment Unit straight away. The main concern was obviously the possibility of a bleeding ulcer (I suffered something similar ten years ago), but I was also seriously dehydrated and had been unable to keep any of my medication down for over 48 hours. I was examined again a short while later and had the necessary blood tests, xrays, scans, etc as well as a rather interesting examination by a doctor that looked about twelve, (Dr Liam) which (to put it nicely) found no evidence of haemorrhoids and meant the bleeding was even more of a worry.

Other possible diagnoses at this point were Gastritis, Pancreatits and Duodenal Ulcer.  Treatment-wise, I was given Morphine, Methylpred, Fluids, Anti-Emmetics and Stomach Protectors through an IV, while the rest of my medications were put on hold. They felt that these were to blame for the problems, but covered their abscence with extra IV steroids. I did a silly thing at one point and managed to pull the cannula out of my ‘one good vein’, meaning that they had to insert a new one with a fancy probe that finds deeper veins – it worked and I’m glad to have learned that it is an option!

With the pain under control, I was much more settled and so they moved me onto a side ward with five other women, who became good friends over the next few days.  I did have some reservations though, since this was the same ward that I’d had such a bad experience on in August; but the Matron recognised me and promised I would get the right care this time round. For the most part she was right and I had a much better experience at this ‘dreaded hospital’, until I changed wards.

So, I was nil by mouth and had a few investigations lined up once the weekend was over, but I was comfortable for the first time in weeks and even managed to get some sleep.

I had no idea of how things would turn out.


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I had a phone call the other day to offer me a cancellation slot for my Hidradenitis surgery on Friday; I need at least a week’s course of antibiotics beforehand though, so couldn’t accept, but she told me to go for a pre-op assessment today anyway.

It took a while to go through my medical history and treatment list, then I had the usual BP and chest checks, followed by an ECG and then… another blood test.  I hadn’t had much notice so was only able to try a few of the tips I posted the other day; however, I asked the phlebotomist if she could take blood from somewhere other than my ‘infusion vein’ and after two attempts she managed to find another that will work for bloodtests but isn’t suitable for cannulation. So we managed to get enough blood and give my overused vein a break, phew!

My procedure is now booked for the 22nd August, which is pretty soon but at least gives me time to heal before our trip to New York. I am also relieved that someone is finally doing something about it as I’ve been putting up with this for over a year now and, as well as being sore, it is annoying to have to think about it all the time.  The problem is, I seem to have developed another swelling around the glands on the opposite side and a smaller one next to the first; I really hope that these are like earlier abscesses I experienced and heal themselves.

Unfortunately, the specialist feels that this is all down to being on immuno-suppressant drugs for so long and there’s not much I can do about that. I’ll just have to hope that with the antibiotics and surgery there’ll be no more infection left to reinfect and that it is curable.  I’ve been taking it all a bit too lightly, so maybe I should look into more thoroughly too; prevention is better than cure after all.

Off to see the GP again tomorrow to reassess pain relief and pick up the antibiotics.

Until then, good night.


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Well, what a day.

Arrived on the ward (just in time for lunch) and had my canula fitted, bloods and obs taken etc.  The nurses asked how I’d been since last time and I told them I had definitely noticed an improvement since starting the Orencia infusions.  I have a bit of a wait after that so settled down with my Kindle; an hour later one of the nurses came in looking quite worried and asked me if I was sure I was feeling okay, that my test results had come back and were so bad they were trying to contact my Rheumy.

They spoke to him on the phone and he said he’d pop up when he could. I was glad of the chance to talk things over with him, as I have been feeling confused and the blood test results only made me more so.  I told him how well I had felt after the first infusion and that I was noticing some improvement with my energy levels even if it hadn’t reached my joints yet, many of which are still stiff and painful.  I explained that the Methotrexate had given me some side effects, that these had lessened slightly to effect me mostly on just a few days (Friday, Saturday & Sunday) but left me feeling drained and sickly.

Today was supposed to be one of the good days – I thought I had a bit of colour – but my Rheumy said I was noticeably pale, so I told him about the bad days when I look like a zombie with purple rings round my eyes.  He told me my haemoglobin level is 8.0, so that at least explains it.  I am worried that it is the Methotrexate causing the Anaemia but my Rheumy says it’s more likely to do with the Still’s Disease being active and having lots of inflammation – Anaemia of Chronic Disease.  My GP on the other hand, thinks I have Megaloblastic Anaemia caused by low folate levels and since Mtx is a folate depleter it would make sense that it has become worse since starting it, even with taking a Folic Acid supplement.

They did check my Folate level yesterday but the result didn’t come back while I was there; Rheumy said he’d keep an eye on things and see me again at my next infusion in four weeks.  Hopefully by then things will have settled down and the methotrexate will be doing more than making me feel queasy – it takes 8-12 weeks for it to boost the mechanism of the Orencia.

I did at least get my infusion, but I was left completely befuddled by what had been discussed.  How can I feel so certain of an improvement when my bloodwork is getting progressively worse? Am I imagining that I can get out of bed in the morning, without assistance? That on most days I am showered and dressed by 10.00am instead of having to wait until my painkillers etc kick in, usually only getting myself ready after noon?  I know that I’m still in quite a bit of pain with my joints but I was happy that I at least had a bit more energy; but how can even this be when I am so anaemic?

There have been times when I’ve felt dreadful and my results haven’t been too bad, so just how reliable are they?  I guess all I can do is carry on the way I have recently, believing that I at least feel a little bit better, and hope that the results settle down and catch up with how I’m feeling. If I think about things too much, I’m just going to get more confused and disheartened with it all and I don’t want to give up on Orencia just yet.


Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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My GP wanted to see me to discuss a few things and so I went for an appointment this morning; I wasn’t expecting it to go quite as it did.  Firstly, he said he was very concerned about my latest blood test results and said he’d never seen anything like it before (it is only a small practice I suppose!).  He wanted to make sure that my consultant was aware of how things were getting and I assured him that he was and that we were waiting for a date to start the Orencia.  He then asked me if I felt well enough to be at home or would I feel better being admitted into hospital; well obviously I didn’t say the latter since I don’t see what good being in hospital would do right now.

So after getting that out of the way it was onto the folate deficiency.  He doesn’t agree with starting the Methotrexate just now for the reasons I mentioned before, but obviously says it is up to my rheumy.  Hopefully, by the time it comes to that my blood tests will have improved anyway.  What he was most concerned about however is the cause of the folate deficiency since my diet is full of fresh vegetables, which are the main source of folate.  He asked the usual questions about any stomach or ‘toileting’ problems (to put it nicely), which I do usually get alongside my Still’s flares and had just been putting up with.  In fact, in the past I have suffered from malabsorption and been tested for Crohns Disease, but each time the results came back as inconclusive; all of which I told him.  So I guess we have been here before.

His conclusion was to hold off on the Crohns testing for now and instead test for Coeliac Disease, which just involves taking another vial of blood at my regular blood test next week; in the meantime, the Anaemia should improve with the Folic Acid I started on Friday.

Finally, he’s arranging for the surgeons to see me about opening up these chronic abscesses as he feels that is the only way to get rid of them.  Another hospital visit to add to the list but at least we may be getting somewhere on the road to the recovery.


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Still feeling rotten after the weekend, don’t think I have helped this flare at all.  The pain is now in both arms, knees and hips so that I’m finding most things pretty difficult and needing quite a bit of help; plus the fevers and rash are coming through more too.  I know it’s my own fault, that this is the price I have to pay for a few hours of fun, but I’d probably do the same again – not sure my rheumy would be too pleased though. 

Was I wrong to go? Should I have stayed at home and continued to put my life on hold for however many more months?

I rang the secretary and explained what had been discussed with my rheumy last Thursday and she’s added me to his clinic in the morning; it’s a 9.30am appointment, which means a very early (and creaky) start but hopefully it will be worth it.  I’m guessing the elbow will a need a shot of cortisone as that is still the worst affected joint; that extra steroid should help me in general though. I’ll also be able to show him my latest blood results, which they printed for me this morning when I went for my fornightly trip to the nurse.  A lot of them are starting to look a bit iffy and my inflammation markers are getting higher every time, so at least I know it’s not all in my head (which certain people make me wonder sometimes).

So here’s to tomorrow.


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