Home IVIG

[prickles]

Dear All,

I hope I find you well. I was wondering if any of you do IVIG at home? Are there any pitfalls?

Caitlin has recently transitioned over to adults and its not going smoothly. A couple of the nurses on the unit she is on gives the impression that they don't really want her on there. She is MRSA positive so has to have a side room and the unit is a cancer centre. They are being difficult over the timings of her infusions, we have asked (as has the consultant) if they can be either first thing in the morning or after lunch so that I need only do one journey, I have to allow 45 minutes each way because of the traffic (Paul would take or pick up depending on time). They won't do this and make her appointments for 11am and if they can't fit her in they will delay the infusion by anything up to a week.

At our last outpatient appointment we asked if it was possible to do the infusions at home, the consultant thought this would be a good idea and asked the nurse to look into it, she was very negative and said there are no district nurses than can access ports, and intimated that I couldn't possibly be trained to do this.

Caitlin done sub-cut at home for a number of years, but this is no longer possible as it became very painful and didn't work as well as IVIG. Are we being silly thinking that we can do it at home?

Your thoughts on this would be appreciated.

Sue & Caitlin

[john]

Hi Sue, it's been a while since we spoke...nice to hear from you and Caitlin!
I'm sorry that you are being messed about at the hospital, and I can see that to do IVIg at home would be ideal.
Normally this wouldn't be a problem because all you would need to learn is how to insert a cannula into Caitlin's arm, connect the pump and bottles and keep an eye. However the fact that she is fitted with a port changes everything I know lots of patients who do their own IVIg via a cannula but none who do it themselves via a port, or even have district nurses who will do this.
In our clinic there is usually only one nurse who can use the port, out of the 6 or so nurses there!
However, science has moved on and there is a new Sub Cut product that acts just like IV, and lots of our patients are opting for it as they can self administer it at home.
It's called HyQvia...google it to read how it is administered...it's a three weekly infusion and the product is exacttly the same as normal IV.
Ask the consultant if Caitlin might be a suitable candidate
Let me know how things go, and hang on in there with the present arrangement!!
John xx

[prickles]

Hi John, hope you are keeping well.

I googled HyQvia, sounds good, not sure it would help Caitlin as a lot of the problem with sub-cut was the pain it caused inserting the needles, she has built up a lot of scar tissue on her tummy. She tried her legs but that was even worse.

The consultant who inserted her port said that either she or I should be able to learn to access it. He deliberately put it on her left side to enable this. When she had her IG's last week the nurse did say that she is looking to see if any of the community nurses would be able to come to our home and do the infusions, so will see what the outcome is at our next clinic appointment...you never know they may have some good news.

In many ways this issue is the least of Caitlin's problems, for the last couple of weeks she has had a number of episodes where part or the whole of her body goes numb, tingly and she can't move, her blood pressure also drops very low, blood tests and ECG's show nothing, she is being referred to the Neurologists, and if they can't help it will be cardiology.

Will keep you informed of what happens.

Sue & Caitlin x

[hlh]

Hello there,

Doing IVIG at home sounds like the best solution for you. This is what we would have done for my Dad if he didn't tolerate HyQVIA. In our area, it is not uncommon for the nurses to do IVIG at home if insurance covers it. But we are near a major American city where there are many large hospitals and many home nursing companies familiar with accessing ports. Ports are incredibly common these days, so I'm a little surprised it is hard to find a community nurse. This isn't very hard for them at all.

I'm also a little angry for you guys that you had such a hard time with getting Caitlin's infusions in the clinic. I would encourage you write a letter to the infusion center expressing your disappointment. They need to get feedback, especially since they are losing your business, and maybe they will change things...

But I agree that Caitlin's recent problems are very concerning. Do the episodes appear to correlate with anything, like maybe occurring after eating? She does need to see the Neurologist. I hope you have a good one, that is an expert in peripheral neuropathies. It sounds like she has a problem regulating her blood pressure and that can occur with what is called autonomic neuropathies. They may need to do some testing of the nerves - there are tests that can be done to check for this (nerve conduction studies and autonomic testing) and some blood tests.

My father has A LOT of medical problems too, and I have been watching carefully to see if he develops any of the other autoimmune or cancer related problems that are sometimes seen with primary immunodeficiencies. He is also a lot older than your daughter.

Keep us posted.

[milkmanmike]

Hi, Sue

Firstly, allow me to say how Disgusted I was to read of your treatment by the institutions, I personally feel they should be held accountable for their actions towards you and your family, That said I've been doing IVIG at home for over 25 years, I do it ALONE,I self-canulate, and I have heard said that Ports are not a preferred option in the UK because of the risks involved with operating them.
If your daughter is ok with needles and can find suitable veins to canulate ,I cannot stress the freedom the option of IVIG gives to you as a family. I would personally be wondering why Hospitals country-wide are not pushing for more of us to self-treat , as it frees up a BED/NURSE , For someone who might more desperately need it.Good luck getting better assistance.

PETER

[Andy J]

Hi Sue and Caitlin

Not sure if we've had the pleasure yet. I'm Andy, 44 years old XLA, currently receiving 30g IVIG every couple of weeks. I have been self-infusing IVIG at home for almost 30 years, the first 3.5 years of which were through a central line (similar to a port), following which I put the needles in myself and I dabbled with SubCut a couple of years ago for about 15 months in total before returning to IVIG at my own request.

Seems like you are both also not fans of Subcut for similar reasons so let's talk about IVIG. If Caitlin already has a port installed then infusing through that will be relatively straightforward, you would just need the relevant training which any of your nurses should be able to provide and away you go.

How are Caitlin's veins? If they are not great at the moment then stick with the port for as long as you can. If her veins are OK then I would see about getting her trained up to do this herself. Doesn't need to be a cannula, a simple small butterfly (blue / 23g) will be sufficient for the couple of hours the infusion takes. Self-infusing is a bit of leap of faith first time you try it. I managed it myself when I was around 13/14 years old because I was sick of junior doctors repeatedly messing up my arms every week in their own attempts to get the needles in.

So she definitely has options. I am not a doctor so please check with your own medical experts first and let us all know how you get on.

Thanks and wish you both all the very best!

Andy

[prickles]

Hi Peter and Andy

Thanks for the replies, Caitlin's veins are shot to pieces the port was put in to save the hassle every month of trying to insert canulas. Even attempting to get blood from a butterfly needle is nigh on impossible, the only vein that sometimes works is in her right elbow joint!

We have the consultant on our side to do home infusions it's just the nurse who seems to be against it, I will see what is said at her next outpatient appointment and if necessary will ask if her old children's ward nurses can teach me how to do them, it would be so much more convenient at home and as pointed out will free up nurses and beds, and save the cleaners having to deep clean the room after she has been in it ( Caitlin is MRSA positive ).

Will keep you updated.

Sue