One Step Forwards..........

I cant believe its been so long since I was last on here. I wish it could be due to time flying while having fun!!

Unfortunately after the positivity of a month or two ago things have taken a step or two back. After starting to feel tired and lethargic, which was originally put down to me having B12 deficiency, I also found that I was becoming tight chested while sat down and that my lung function tests showed that my lung capacity and efficiency had decreased.

Following on my lung CT scan some time ago, my immunologist has diagnosed CVID with Granulomatous Disease. The first stage of the treatment for the Granulomatous Disease was a 6 week course of Prednisolone tablets, which if successful would be followed by a long term course of Azathioprene.

I have heard a few different reasons given for the formation of the Granuloma in my lungs, and the way I understand it is that my immune system is attacking the antibodies from the IVIG treatment as they are 'foreign bodies'. This forms lumps called Granulomas which sit in my lungs, absorb the immunoglobulin and reduce my lung function - as well as making me feel unwell. The idea of the steroid/azathioprene treatment is supress my immune system and prevent the formation of further granulomas.

The image above shows Granulomas in the lungs.

Thankfully, the course of Prednisolone seems to have been effective, I felt better for the majority of the team, and most importantly, all the chest symptoms have improved. A fortnight ago, I started the course of Azathioprene which has been fraught with difficulty. The worst part has been the constant nusea which thankfully has now passed for the most part. At times it was almost impossible to keep water down. I owe a huge debt to whoever developed antisickness pills!

This week I also had my first B12 injection. It seems that my blood level has been steadily dropping over the last few months. Hopefully regular B12 injections will help boost my energy further. Fingers crossed I can take two steps forward without the need for one backwards

Testing Times Ahead

Once again it seems like ages since I posted on here. Most of the days Ive still been feeling a bit too exhausted to do anything once I get home from work.

Over the next couple of weeks, Im going to get a much better idea of where things are going, particularly in relation to my constant tiredness. I had a phone call from my Immunology nurse this work, who has advised that my B12 level is slightly low and my consultant wants to see me before they take action. Low B12 would go someway to explaining why Im so tired, and I also have family history of low B12 on my mothers side. What was thought was a virus casuing me to feel like this seems to have lasted too long, so hopefully there will be some movement on this over the next couple of weeks.

Prior to my review with my immunologist I have a session of lung function tests due next week. The last time I did a peak flow in clinic there had been a massive improvement in my breathing and hopefully this will be maintained. Ive managed to keep up taking inhalers (fairly!) religiously so fingers crossed this combined with successful IVIG is really doing the trick.

Im really pleased that I have managed to say pretty infection free since coming of my antibiotics. I was fairly worried as to how I would cope after being on them for so long, but Ive been pleasently surprised so far.

When I havent felt too tired Ive been been stepping up my 'rehab'. After really struggling to do much in the way of exercise during the period prior to my treatment, Im really happy that Im keeping on with withg the swimming and trying to get fitter. Hopefully the constant tiredness can be sorted soon to allow me to do a little bit more

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..........

Reaching the Big 60!!

Well Im almost there. One more infusion due to take place on November 23rd and then I will be able to start having my infusions from home. The good thing is that its going to mean less time off work and I can adapt my treatment schedule and allow the weekend for more rest.

The biggest discussion recently has been around whether I should be switched to having the IVIG weekly fortnightly, or whether to increase the amount of Privigen that Im having each time. My IGg counts have shown improvement despite sliding a couple of months ago. The level is now up to 8.6 and my Consultant and Specialist Nurse would like to see my level around 9. As such with the winter coming up we have agreed on a 10g increase to my 3 weekly schedule, taking me up to 60g every three weeks. If this doesnt work, I will more then likely switch to a fortnightly treatment.

The reason for my slow response may finally have been discovered. Although my CT scan of the lungs showed no scarring or anything, however there were small amounts of cells (I've forgotten the actual name, but I think they were called Granulocytes) in my lungs. These cells have a tendency to remove immunoglobulin by absorbing it, removing it from the immune system. Apparently this is quite symptomatic of CVID.

My major bugbear of the last few weeks has been cold sores, with me picking up a couple in the last two to three weeks. My GP has given me a course of Acyclovir tablets, which although they seemed to have eased the issue, have certainly made me feel quite under the weather. Hopefully they will resolve the issues going forward. Fingers crossed Im now in a position to get through the winter fairly easily.

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

So what is it really like Part 2

The fact that tomorrow is infusion day, gave me a nudge to update my blog. Its felt a very weird three weeks. Despite having my increased amount of Privigen, I havent felt any kind of benefit. For many days, particularly early in the morning, I felt like Im walking through quicksand.

Currently for the first two or three days following infusion Im finding it very difficult. I tend to have no energy at all, and then when I do have some over the first 48 hours or so, I swing between having energy and then becoming drained with no energy what so ever. Generally after that, I feel better than I have done for a long time, with a normal sleeping pattern really helping. When I do feel that I have energy, its still amazing how quickly it can disappear. A short walk to the local shop or the train station can be enough to tire me out. However its been positive to notice that as I am adapting to the infusions, the energy does seem to last a little bit longer.

That is until I get into the third week of the infusion. One of the downsides of the infusion that isnt the case with the sub-cut method, is that after the big 'spike' in the antibody count over the three weeks, the counts start to drop, and that causes me to feel more drained in the run up to the infusion. It does feel a big difference when I get into that final week.

The big downside so far, has been my body's slow response since I started IVIG. My infusion nurse wants my antibody count to remain (at the lowest) at 9 in the third week (keeping me further away from slipping back to an 'unhealthy' level. Despite having had an increased level, my last blood test three weeks ago showed that I had still yet to reach that magical figure. It appears that the replacement antibodies are being absorbed and taken elsewhere. I am awaiting an ultrasound to have a look at my Spleen and Liver. It could be that groups of blood cells in my Spleen are absorbing the Immunologlobulin, meaning that it sint all getting where it is needed and there is no chance of my increased amount being reduced. Its a shame however Im slowly moving in the right direction.

I just hope that tomorrows infusion goes well, and I feel a little better this time. My mother and I are are currently being trained on how to set all the equipment up. My mother has the task of being my 'infusion buddy' and will put the butterfly in for the first time tomorrow. Hears hoping that from the weekend onwards I will feel a little more 'normal' again