Subcut Surprise

[glowing]

I went to the hospital for my usual three weekly infusion this morning and was surprised when the nurse greeted me excitedly telling me "You start today don't you?" I had to ask "Start what?" as I was unprepared because no-one had phoned to tell me. Anyway I began the first steps towards home infusions, which I am very happy about. I have to attend every week now and must be prepared for it to go on longer than they first thought as they don't know when they are going to get a suitable pump for me to take home. The last person I heard about at our hospital waited six years I really hope that doesn't happen to me.
Fingers crossed.
Glowing

[bamber]

Hi,

I do hope you don't have to wait six years - I got mine quickly - but it was years ago and less people were on it at home. It is good I assure you.

Well done!

[glowing]

Thank you.

[s162216]

Where I have IVIG a lot of people are switching over to SCIG at the moment and pretty much all of them get a pump and start doing it at home after a few weeks so hopefully for you it shouldn't be too long. It does unfortunately mean though that we've 'lost' a few of our more 'interesting' members of infusion clinic every 3 weeks!

As for me they've offered me SCIG but I've declined as I already have to do an SC cannula insertion every 2 days for my insulin pump and based on past experience with that I found it excruciatingly painful in the stomach and thighs as I have only very limited SC fat (I seem to be the only one who wants to gain and not lose weight!) and now use the only area where I have any, just beneath my back in the bottom area (which is actually not painful at all when I sit down as a lot of people think it would be). Obviously I couldn't do the SCIG there as well and to be honest I like having someone other than me responsible for doing the injecting/cannulating for once! Plus the social element of meeting others having IVIG every 3 weeks is something that I find makes having it more bearable.

Good luck with your SCIG, I hope it goes well and you get your pump soon!

Sam

[mali42]

Congratulations Glowing,
It will give you so much more freedom once you are trained and like Sam mentioned the only down side was missing the people i had got to know while infusing.
Malcolm

[glowing]

Thank you all for your good wishes. It is the thought of not seeing the regular patients that I feel a bit low about but weighing it all up it will be better for me. I can understand you not wanting to stick even more needles in yourself Sam with all you hve to stand as it is. I was told the needles are tiny but I didn't think the ones the nurse used were all that tiny. Both of them looked like a stubby sewing needles, not really big but bigger than I was expecting. As I have plenty of 'padding' they only hurt briefly. I have two pink pouches now, which I'm told will go down through the week.

Glowing

[s162216]

The needle length depends on whether the cannula is an angled or straight insertion one, angled ones are longer (~25mm) as they go in at a 20 - 45 degree angle and are supposedly better if you have less subcutaneous fat (I tried them and couldn't get along as I found them difficult to insert and disliked them). As the name implies, straight ones go in at 90 degrees and are usually 6 - 10mm long (I always use a 6mm cannula) and in my experience are more comfortable and easier to insert.
There are also 2 versions of straight SC cannula in that you can have steel and soft teflon types (angled are always teflon), the only real difference being that with the soft ones the needle is removed and the outer teflon part remains (like with a non-butterfly type IV cannula). In my case though as I keep it in all the time, the other difference is that teflon cannulas can be changed every 3 instead of 2 days; I use a steel cannula set as I find them more comfortable and easier to insert as you literally just push it in, stick it down and thats it, unlike with teflon ones where you also have to remove the needle.

Sam

[glowing]

Thank you for the interesting information Sam.

[john]

Hi Gloria,
Hope you enjoy the training and don't have too long to wait to get started at home.
As Malcolm says, you will feel a bit alone to begin with, but everyone I speak to says they enjoy the freedom that SCIG at home gives them. We'll have to get a few more games going to keep you interested whilst infusing!!
GOOD LUCK!!

[glowing]

Good idea.

Just wondering. One side of the treatment area bruised quite badly. Could it interfere with how the treatment is absorbed?

[liz2mac]

Hi Glowing,
That's great news. I'd be very interested to hear if you do have to wait ages for the pump, please let me know? I haven't anything useful to add to the info the others have given you as I've never had scig, been on ivig for about 27 years now and all but 18 months of them been home infusing. I guess you don't miss what you haven't had, so the socila side of infusiong is a long lost experience for me. The benefits of being at home are so numerous, not least is the protection from infection that NOT going into hospital gives!
Liz

[bamber]

I had bruising originally and occasionally now. Its OK though with the absorption or should I say I have never been told it is a problem. Often its the small capillaries under the skin breaking. But ask when you go again for reassurance.

I also rarely had a social side to my infusion - mostly done at home - when in hospital I was the only one. Also the intramuscular injections were at the doctors clinic - and being injected in the buttocks is not a social event lol! So as Liz say's I think what you don't get you don't miss!.

I do envy them though for the ongoing contact with the nurses at the hospital as any questions can be saved up and asked every three weeks. I have to call the hospital or maybe now i think i can E-mail and get seen once a year. I have mentioned this as a problem with my hospital a few times - that no one checks up on us.

[glowing]

At our clinic the nurses actually know very little and we have to contact the immunology nurse at a different hospital if we need to ask questions. They are ready for anything going wrong but seem to unwilling to comment, which is probably just as well if they're not sure. The immunology nurse is difficult to get in touch with unless it is urgent. I will have a good chance to ask her questions as she has to travel to our hospital to train patients.

Thank you all for your replies.

[bamber]

Yeah make the most of the training that's when you will find most out. Also the immunologist were at different places when I was in hospital - but it was in the late 80's early 90's. I think being rare I could always get some kind of answer or quick appointment - but now they have lots in comparison of patients and the hospital I would go to now is a distance away - but has the immunology department in it and the nurse is an immunology nurse. I like being at home don't get me wrong - but wish they would at least phone now and again to ask if alright. My delivery service call every 8 weeks for my supplies - but if I suddenly said - I don't need any thing today i.e. not used it. I wonder if that would get passed on.? Don't know. I think my problem is I have been on some treatment for so long that its not so urgent or exciting for me. I am probably taking everything for granted and don't deserve the service I do get?

Sorry this has become a moan about me. Glowing subcut has improved my health a lot. I have not been in the workplace full time for a long time either so I think being able to avoid some bugs helps too. But generally my levels are better and I think it will help you. Also I don't get the tiredness as much because the levels stay more constant.

[glowing]

The only thing I'm unsure about at the moment is that I've had a migraine for quite a few days and can't remember if it began after the treatment or if I had it anyway. I get silent migraine which means I don't always get a headache with it, just lights etc. This time I've had a headache. It could of course be coincidence and due to the arthritis in my neck but I think I'll mention it on Friday anyway.

It must be hard for you not to feel down when you have no-one to talk to about your condition. As Liz said there's always somebody to chat to on here, usually me if no-one else is around. I don't know much about the condition but can chat. No doubt about that, you can ask my husband. ;D

[bamber]

Check out the migraine its probably a coincidence - but getting used to anything new its important to check. Has you actual product changed too? Certainly the consistency will have. At one point but it was years ago I was getting steroids with the infusions - but it wasn't subcut and things have changed so much now with such a lot more research and usage I think everything is less likely to cause any unexplained side effects.

Thanks for the chat offer too. Just feeling sorry for myself. But I will be talking to the hospital soon for back up with my ESA claim so I think they will shine through! They usually are good - its just I don't like changes.

[glowing]

I had a telephone conversation with my immunology nurse yesterday and she said I should begin my training on 10th January. She has sorted everything out and will train me on the same pump that I will bring home to use. I'll be interested to see it as it sounds quite different to the ones they're using at the hospital. She said there's only one and it's bigger and all you do is wind it up and you're away. Don't suppose it'll be quite that easy but I'm looking forward to finding out. I mentioned all this to the nurse at the clinic today during my treatment. She had never heard of a wind up pump before.

[bamber]

Mines a wind up pump probably same one and its big - but luckily no batteries my last one had expensive batteries and I had to pay for them. Mines called a freedom pump! Email or pm me if you need info!

[glowing]

Thanks. Will do.

[glowing]

I'm due my fourth subcut treatment tomorrow but had to visit the GP today because my asthma has become pretty bad so I'm back on steroids and antibiotics. The doctor said this is due to a cold virus, which has made my asthma worse and caused bronchitis. I'm just wondering if the change in treatment might have anything to do with it.
The clinic is still going ahead with the treatment as I don't have a raised temperature.
Whatever the cause I'm very pleased not to be as ill as I used to be before the cvid diagnoses.

Glowing