A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Monday 4 April 2016

Hard times

I'm struggling today, feeling very emotional. I'm physically exhausted and emotionally weary,  and I'm sick of being in hospital. It's not quite two weeks since I came in this time - though I've a way to go yet until I'm well enough to be discharged - but I had only been out of hospital for two weeks after a three week admission, and I never did get properly better between times. It takes its toll.

The week after I got out of hospital last time I had various blood tests done at the GP surgery, some of the results of which I'm still waiting. One result I did get was my haemoglobin (Hb) level, which was a surprisingly healthy 136, but since coming into hospital again this has fallen to an anaemic level of 95. This is quite a drop in a relatively short time, but not terribly surprising as, for some reason, I have had/been having a gastrointestinal bleed. There was one day last week - I think it was Thursday or Friday - when it was pretty bad and the doctor was quite concerned, but it has eased off now, so while it hasn't completely stopped it isn't as bad as it was. They had been thinking that I'd need an endoscopy or sigmoidoscopy as soon as I'm off the aminophylline, but today the doctor said that so long as there are no more bigger bleeds then it can probably wait until I'm back in Newcastle. That's fine by me, but the anaemia won't be helping my energy levels or my ability to cope emotionally.

For all that I'm away from home, it's good that I'm in Edinburgh and close to Mum and J. It makes a difference having them around. That said, I feel a long way from my friends in Newcastle and the support they give me. Yes, I'm in contact with them via Facebook and some of them text me or send me private messages through Facebook, but it's not the same. I know that Mum feels the pressure too, not that she in any way begrudges me the visits or the time, but she's not young any more and doesn't have the energy she used to. While I'm in here she's having to make all my food for me too because the hospital can't cater for me with all my allergies, and again she doesn't begrudge
me the time and effort, but it is a lot of work for her. I worry about her getting worn out.

Yes, today everything is getting on top of me and I just want to cry. Occasionally a few tears escape, but my lungs don't yet feel stable enough for me to really let go...then there's also the lack of privacy. I'm in a bay with three others. They're nice enough, but I don't really want an audience for my upset. I want to get out of here. I want some energy and some mental strength too. I want to be better.

Friday 1 April 2016

Going back

Way back in September, when I was in hospital in Cambridge, it was found that my IgG levels were really low. IgG is immunoglobulin G and is to do with long-term immunity to infection, though is also a marker for other things. Not long before this I had been taking the drug methotrexate to try to get my dose of steroids down, but methotrexate is also an immunosuppressant (in high doses it it used to treat some forms of cancer), so while my low IgG were significant the doctors weren't overly concerned as it could have been a hangover from the methotrexate.  The medics at Addenbrooke's said to wait three months and then have my IgG levels checked again, by which time the methotrexate would be completely out of my system and we could be sure that it wasn't affecting the blood results.

During the three months between September and December I had a huge number of infections, mainly urinary tract infections (UTIs), but these are quite common in folk with diabetes and this time coincided with a worsening of my diabetes. For those three months I was almost constantly on antibiotics for UTIs, and extremely symptomatic of hyperglycaemia (high blood glucose levels), ending up in A&E on a number of occasions with very high BGs (blood glucose). My GP eventually referred me to the diabetes centre to gain better control of my diabetes again, and the diabetologist explained that steroid induced diabetes like mine almost always requires insulin injections for control. I was started on a low dose of a mix of fast acting and long acting insulin in early December, and over the next couple of months the specialist diabetes nurses titrated the dose, alongside the metformin tablets I take, so that we got fairly good control of my BGs. With improved BGs I also had fewer UTIs.

Shortly before Christmas I had those repeat blood tests done to check my IgG levels, obviously hoping they'd come back fine, but they didn't. My IgG levels were still very low so my GP contacted the haematology and immunology departments at the hospital for advice. Immunology wanted haematology to take the initial lead, and haematology suggested a wider screening of some of my other immunoglobulins. I had to wait a good couple of weeks for these results to come through, and in the end they didn't appear to be all that useful because haematology then requested a particular urine test be done to check for something (light chain proteins) that could indicate myeloma - an incurable blood cancer. As you can imagine, this was an anxious wait, but again not a very fruitful one. Yes, the result came back two weeks later as negative, but it then transpired that the urine test isn't very accurate and has a relatively high incidence of false negative results. Haematology requested another test for light chain proteins, this time in a blood test that is much more accurate. Another anxious two weeks passed by and I was eventually given the all clear for myeloma.

In light of the haematology tests, my GP contacted immunology again for their advice on my low IgG levels. They requested an official referral, which my GP promptly did and I quickly got an appointment through the post, although the appointment itself isn't until mud August! In the meantime they also requested my GP do some further blood tests to check my antibody levels for three specific infections - tetanus, pneumococcal, and haemophilus. In the past I have been immunised again both of the former and have had several haemophilus infections, so I ought to have antibodies for all three. We got the results two weeks after the tests were done and they showed antibodies only for tetanus. Immunology told my GP to revaccinate me against pneumococcal and haemophilus, wait five weeks and then check my antibody levels again. If the antibody cover is incomplete then this may well indicate an immunodeficiency disease.

I had the vaccinations seven weeks ago, and I've had the repeat blood tests to check my antibody levels again, but I am still waiting for those results. I'm not terribly hopeful that the vaccinations have taken because when I was in hospital in Newcastle just three weeks ago I was found to have an haemophilus infection.

Doctors now seem to think it is highly likely that I have an immunodeficiency disease, but of course it can't be confirmed until a) I get these blood results, and b) see the immunologist in August. In the meantime I have been getting lots of infections and 'reacting' badly to them, again suggesting the likelihood of an immunodeficiency disease, and it's been mooted that I may have had it all my life and it's contributed to my worsening asthma.

My doctors have all said that given my response to infection, and in light of my very low IgG, I ought to be seen urgently by the immunologist, but there is a national shortage of immunologists and the department is chock-a-block. I have tried, my complex lung disease nurse has tried, my GP has tried, my consultant has tried to get my appointment brought forward, but the department can't do so unless there is a cancellation, and in that instance it's first come first served - the patient/the patient's medical advocate has to contact them at the right time by luck rather than the department contacting those needing earlier appointments. I think this is simply because they are so busy, but it is far from ideal. My complex lung disease nurse (J) said to wait until I have the results of the revaccination antibody tests then contact him and he will try again for me at getting my August appointment brought forward.

I spoke to my GP on the phone last week about some other blood test results and he said he would phone me again in a week's time with the results of my revaccination antibody tests. I was expecting that call today, but it didn't come. I don't know if perhaps he was too busy, or if the results haven't come through. Perhaps he knows that I'm in hospital in Edinburgh at the moment so didn't want to bother me. I may contact the surgery tomorrow to find out. In many ways knowing the results at this stage of things doesn't change anything as no treatment will be given until I see the immunologist (and probably have a load more tests done too), but I still want to know. It feels very significant, especially on the back of these two hospital admissions in close succession due to asthma exacerbated by pneumonias initiated from colds. Both my mum and step-dad got this latest cold from me (sorry Mum and J), and they both said that for 'normal' people it was a very mild affair that was a slight annoyance for three days. I had four days in Intensive Care and I'm still on an aminophylline infusion with lots of wheeze.