Moving On Up

Once again, its been a while since I have had the chance to update my blog. With the recent nice weather I havent been on the PC as much.

The recent good weather has caused me a few problems with hayfever recently. Im convinced that Ive never had hayfever this bad in the past. I will have to c oncrete my garden to make things easier!

There has been quite a lot of good stuff happening recently :). The home infusions (with the exception of Sunday's) have gone really well. My mum has become really confident in putting the butterfly into the vein and some early equipment issues with the drip stand have been resolved. I think we have also found a solution to avoid the severe cramp which comes from not being able to move my arm for over two hours!!

My IGg counts have responded fantastically well to the privigen. My last blood count was in excess of 12 which is amazing considering how much of a struggle it has been to get there. My peak flow test has increased by over 50% which shows that my lungs are in pretty good condition - I do though have more lung function tests to be done in the next couple of months. My consultant is so pleased that I am able to come over my covering antibiotics - obviously with the proviso of going straight back on if I deteriorate.

The only recent down sides have been that over the last two days, Ive felt like Im going down with a heavy cold. I coincided my ceasing of antibiotic protection with my last infusion 2 days ago, but since then I havent been well, so I may have to take the plunge back onto the tablets. Also, a recent routine haemotology blood test, identified that I had a low Red Blood Cell count. As such Ive recently been submitted for blood tests which look at my infection and virus markers (which may impact on the RBC count), as well as my iron and vitamin B12 levels. My mum has anaemia and Im sure that when I was in the infusion clinic, one of the other patients required a course of iron tablets. We will see what comes back from those tests

Its been a while....

It seems like ages since I was last here and I really guess that it has been!! I hope that everyone has had a great christmas and start to the new year?

My start to the new year has been quite mixed really. After a very difficult home infusion in mid December, I was back in clinic for infusion at the start of January. This was also a little traumatic. One of the main issues that I have with IVIG, is that my veins are not easily accesible. I have a 'good' vein in my left elbow, but the others can be difficult to get in to. Aside from that, I am always encouraged to take a lot of fluid on board prior to each infusion. On top of over half a litre of fluid in a couple of hours, and I end up in a difficult situation. This caused a mini disaster.

As a have a butterfly needle instead of a canula, Im not really allowed to move my arm in case the metal damages the vein. When I did move to the loo, the butterfly slipped and came out of my arm, leading to the infusion needing to be re-sited. It took each of the infusion nurses two attempts each to re-site the needle, which is a bit of a worry for home infusion. As such the nurses are applyign for funding for a BUPA Homehealthcare nurse to come out to me and supervise the infusions. If experienced nurses have issues siting the needle, my mum will find it a lot harder.

A second in-clinic infusion took place in late January, and this time all went well. However since then, I have been stuck with a terrible virus, and I have to admit I havent felt so rough in a long while. Tiredness is a fairly common symptom of my CVID, but the lethargy I have felt recently has been horrendous. On top of that swollen glands, terrible headaches and, numerous painful mouth ulcers and its been a hard few weeks. Thankfully I seem to be through the worst just in time for a home infusion on Monday. Time to crack on with those resolutions..........

Exhausted

Well its been a while since I got around to updating this. Now Ive finally got some time, to sit down and update :).

Its been a hectic couple of weeks for me and my CVID and its hard to know where to start really. Im due for infusion next week and Im a little bit nervy after my last infusion experience. In the run up to the infusion, I had been feeling heavily exhausted and very unwell. When I visited the hospital for the infusion, the nurses didnt feel that I was well enough, or indeed strong enough to have my infusion at that time. I was somewhat surprised as I certainly felt well enough, however I will not go against my nurses judgement. The infusion was delayed by 3 days to ensure that my infection markers were not indicating any infection in my system. Although the infection markers were ok, my IGg count had dropped which I dont feel is particularly encouraging.

Last week, I finally got around to getting the ultrasound of my spleen done. My consultant wants to check why I havent shown the expected levels of response. One theory is that there could be clots in the spleen which are absorbing the immunoglobulin, keeping it away from the immune system. From the ultrasound, apparently although my spleen is the correct length, it looks 'bulky'. Im sure I will hear more on that in due course. Next week I have CT scan of my lungs to ensure there is no damage there.

One thing I did get a roasting from my consultant over was the importance of sleep in helping me recover, and apparently I am showing some signs of insomnia. As such I have cut out caffeine after lunch and found that I do sleep ok with that. I just need to try and get a few early nights.

I guess my one bugbear with the IVIG is my slow pace of improvement. After 5 months I still dont feel any real improvement. I know it will take time and I need to be patient, I guess I just hate feeling so drained so often