Updates and changes to come....

[Deleted]

Hi everyone,
Its been an extremely hard month November/beginning of December for me, so apologies to why I haven't been very active.

To cut a long story short, I haven't been very well lately. I have had 3 chest infections, been on 3 lots of antibiotics and have also had flu, so my system has taken one heck of a beating this month. I have been feeling extremely depressed and I have now lost my confidence completely, I really don't know how to get it back at this stage.

I have started doing a personal diary now (as instructed by both family and my immunologist) as I feel its the only way I can cope (not coping very well at the moment at all)

I saw both my haematologist and my immunologist a few days a go who has now decided to put me onto sub q as they don't think that my treatment is working as it should. They have said that I will have to wait for a while as it once again needs to be approved by the higher boards (I will still be having my IVIG infusions until then)

However, once it has been approved I will then have to either travel to Stoke - on - Trent or Manchester to get my training (4 weeks) and then once they are happy with it, I can start having it done at home, so then no more spending the day in hospital...hurray.

My immunologist has told me that they have changed the way that it is done, she has said that now there is a patch which you put on your stomach or thighs and it already contains the needles, so its just a matter of attaching the tubing and drawing up the correct amount of product, so I feel a bit better about that. I should be used to needles by now, but I'm not lol , I guess that you never get used to it though.

I am currently doing a level 2 certificate for the children and young peoples workforce, (I go to college once a week for my childcare and 2 days a week for my placement as part of the course and on top of that, I'm also redoing my maths GCSE) my hours have been cut down for my placement now as I couldn't cope and there is concerns mainly because of my health and how ill I have been, so hopefully I will be able to catch up.

KittyKat
So its all change and hopefully for the good, I just hope that I don't get ill as much when I am on sub q, don't think I can cope with much more to be honest.

Sub q users, how do you find it different to the infusions and do you feel that it is the best option, is there any side effects?

Kitty Kat

[bamber]

I have been on subq for a number of years now- too many count I am 47 and was diagnosed and treated from age 10 so at first it was intramuscular injections and it hurt like hell. But later on at about 18 - year 1984 had infusions and life improved a lot - I even stopped coughing so much! I moved from hospital and onto home infusions - But Sub cut did improve it much more.

I have small needles in 4 sites - but I do use Emla cream to numb the area. I use all the help I can get and I too have had my share of needles over the years - I understand the idea of not getting used to it. It does annoy me people who say "I hate needles"- As if I must love them. I hope you improve so much like me.

I am not working - do voluntary work with adult learners and I am taking my level 2 European Computer driving license.

If you have any more questions don't hesitate to ask.

Bye the way the only side effects I did have at the beginning is swelling at the sites as the infusions go under the skin. But it gets better in time and longer usage.

Good luck.

[mali42]

Hi Kittykat
sorry to hear your having a rough time and i hope things improve soon and the depression goes, I have been ill a lot more this year than normal and it has made me depressed and it tends to creeps up on me without me realising. it won't always be like this and things will improve.
Malcolm