Oops, missed the word infusions in the above post.

self-administered intravenous *infusions*

I am not sure what an infusion is.  For many years I injected testosterone into a muscle. AT first the idea of using a neeedle seemed icky. But soon I was used to it. Howevr the fact that I was able to see immediate results certainl;y helped me get over the phobia I had of injections.

Into a vein, not into a muscle.  I'm a bit freaked out, but at least I don't have a needle phobia.

Thanks for responding Alex!  Know you got used to it quickly helps, even if it was a different type of injection.

Any comments from people working in health care or anything else related would be welcomed!

I read the infusion takes 7-8 minutes.

The type I am familiar with involves an indwelling venous catheter - which is semi-permanent - i.e. for the duration of the treatment (x weeks or months).  It remains in place in the vein & part of it is external - that part hooks up to a pump or gravity feed, or syringe which is then used to deliver the drug.  Sometimes the patients administer it themself; sometimes they go to a community care clinic for the infusion to be done by a nurse. Often IV antibiotics that are needed over a long duration are administered in this way. 

Thanks Carolla.  This might be for life, and the clinic started with hemophilia patients.  Nothing was mentioned yet about anything remaining in, do you know how this would work long term?

Hi Chemgl

Like Carolla, I would think that the hospital or clinic will put in an in dwelling catheter with a hep lock. It makes it fairly easy to attach the IV tubing. Here in Ontario it likely would be something done by VON in the home, depending on the patient and comfort level.

If it were to be a lifelong issue then you would need get training on how to administer the fluids. Rate of flow, air bubbles, signs of blocks and dislodgement of the catheter would be things you would want to understand.

Hep lock catheters stay in for extended periods of time, again depending on the patient and their care of the site.

I would ask them about replacement plans for the catheter, including emergency numbers, perhaps a prescription you would carry for the event when you need to go to a strange emerg to get it installed. Also about an IV pump or are you to regulate the flow the old fashioned way we all learned, counting the drips per minute.

I have not heard of anyone actually inserting their own IV daily though perhaps that is what they are talking a bout. That will require lots of training, it isn't as easy as it looks and doing it yourself means you will always be using the same vein more or less which isn't good. Each puncture leaves a tiny scar on the vein and they will build up over time.

But in all cases, hygiene is tremendously important

I found a training video for the drug.  It looks like I would just use a syringe and inject it slowly, no counting drips.  I don't think it's daily, I think it's weekly or something, plus extra if it's needed.  The video did show a butterfly needle and it just being inserted similar to having blood taken plus it was taped down.  That might just be the video though, I'm not sure.

I was told I will have 8 hours of training.  The nurse explained that to me *if* I was put on that treatment before I saw the doctor.  I thought that might be a future thing at the time, and I'd be doing something else first!

There are actually two different drugs, one is licenced as prevention, one is licenced for treating once an attack has started.  The former currently isn't available in Canada though, so the latter is used for both.  I'm not sure what the difference even is, as they both contain the same active compound, and are both purified from the same source.

Thanks for the comments, I'm feeling better today.  Yesterday I was feeling quite anxious for a few hours when it sunk in emotionally about what I would be doing!

Inserting a butterfly needle is easier than a cannula type.

Hygiene can't be stressed enough. If you are doing a syring injection then it is not likely they would leave a hep lock in.

If you end up doing this I would ask that your hubby get trained too. And I would ask about VON possibilities

With any IV , it is all about being in the vein and not pulling out of it or going through it . With practice you will learn the feel of the pop as you enter the vein.

I doubt if you'd get a hep lock chemgal. You won't be injecting frequently enough to outweigh the side effects of one.

In AB it is Homecare not Victorian Order of Nurses. (VON).

They wouldn't train you if they didn't think you could do it!

another thought-a trick they use to draw blood from babies is to place a warm wet washcloth on the area first. Maybe something like this will assist in bringing your viens up to the surcae and make them easier to find.

Once/week is just an educated guess.  It seems to be all over the place.  Thinking things through more clearly though, I probably won't start with anything semi-permanent, we don't know yet how I will react and if this will help my symptoms.  Even if it isn't working for my on-going symptoms, being able to treat myself in an emergency would be really helpful.  Treat first than ER rather than just going to the ER improves the outcome.

I can find my veins easily luckily!  It looks like a tiny little spot and I can tell the inexperienced/less skilled people when I get blood drawn because they sit there and poke it with their finger a bunch of times.  I had someone in training who was super nervous and I ended up pointing the spot to her.  It does make me a bit nervous though, maybe I have a much smaller target area than many others?

Usually when blood is drawn they use a large vein in your forearm.

It is more likely you would insert a butterfly into one of the veins on the back of your hand. Easy to see, no flesh to get in the way.

Be sure they teach you to recognize arteries and veins, to know the difference. You wouldn't want to inject into an artery

That's what I thought, when I've known people to have IVs for hydration or something it was in the hand.  The video made it look like it's the same spot as where blood is drawn from though, and a tourniquet was used.  It does say to use the vein(s) you were trained for though, so I'll find out.

It's all very mysterious to me at the moment.  I also have to wait for test results to come back, it's possible I won't be a good candidate for home treatment.

I have no experice but just wanted to say that no matter how neverous you are to start if it's what you need to do you'll learn and soon it will be second nature. And like Alex said, knowing that it will make you feel better will definitely help I'm sure.

chemgal, it rather sounds like you're getting ahead of yourself - if I'm understanding your posts it's not even clear that you will have this treatment.  Perhaps waiting til you see the doc and find out if you're actually going to be given this treatment might save you some anxiety.  

I'm just banking on the fact that I don't have another disease/condition, that's all.  It's clotting factors & similar things that they are testing for.  I've already signed the forms about the risks for the medication.  The doctor wants me doing self treatment with this medication.  They need to make sure I won't have bleeding issues or something before I'll have the training appointment set up.

Inevitably we all have multiple conditions that likely go unnoticed. Howver as you already know, they may complicate treatments for other conditions, so your doctors are doing the right things,

As far as preparing for potential complications, this can make me worry needlessly, but mostly it makes me feel safer and better prepared to make decisions in the future. I guess for others it may be less helpful, but for me after living with HIV and AIDS for over 25 years, talking and reaearch has been good for my mental states.   I also find talking about treatments and potentially complications and fears about them, helpful can help my anxiety. Even if I get no feedback, talking aways help. Before we had effective treatments and when I was living on borrowed time (90s), I ran a BBS whose motto, was "Nothing is so bad in the world that cannot be made worse by being alone"  And I found talking about health concerns onl;ine made me feel less alone.

I like that.  Thanks Alex.

The nurse who takes care of most of this is on holiday.  I am listed as 'start for home treatment' though.

I have a date.  Chemguy said it doesn't matter what comes up at work (booked days off can sometimes change) he will be coming with me.

That is good. I use to go to all my mediacal appointments alone, but I have discovered that in general, I am treated better, and given more time if I have a witnesss friend with me.

It also means I'll have someone at home whose gone through the same training!  Hopefully he won't be out of town for a little while after.

Good idea.  We have found it very wise to have a witness friend or advocate along at medical appointments.  Two sets of eyes and ears are much more efficient than one (especially if feeling intimidated). Hoping this all goes well and isn't terribly difficult to manage at home.

Thanks Kay!

Wish me luck!

From the sound of your report elsewhere, you did well today!  Congrats on that. 

Thanks Carolla!

I'm starting to wonder if I did better than Chemguy now.  I have 4 pokes total, 2 me and 2 him.  My first doesn't really count though because I pretty much chickened out and just barely broke the skin, so it's pain free.  His first was in a sensitive spot to start with, it hurt right after and it feels bruised.

He did one with 1 mL of saline, it was fine but is slightly tender now.  The one I did for the full infusion is pain free.

You are a brave, brave woman, chemgal.

I hope you get the hand of this and it goes well for you. I used to use a pen for a medicine I used to take. I just numbed a spot on my stomach with an ice pack then put the pen against my stomach and pressed a button and it automatically jabbed me. For a while they switched me to a regular needle and I had my wife to do that and she hated it. She was able to, just hated it.

Thanks Jon.  lol Chemguy had zero issues doing it to me.

No ice, as it is it's recommended I take a warm shower or something to get the veins easier to hit.  I did pick up some numbing cream though.  The pain isn't bad, but I'm hoping it will help with the psychological aspect so I don't get dizzy or at least not as bad as it was the first time.  It's easier to pretend it's not my hand if I don't feel it.

What about staying hydrated, would that make a difference?

It makes it easier to hit a vein if you're hydrated.  At least we aren't have problems with that!  I do bring a cold drink with sugar, as well as something that's easy to eat.

I'm going to try to prep things more beforehand.  The nurse has ended up grabbing me a cold cloth after I start feeling dizzy.  I'll have that ready to go next time so I can grab it right after the needle is taped down.  Straws as well, so it's easier to take a sip when I'm prepping things.

How about prepping a reward for doing well?  

Besides not having to go to the hospital twice a week :)

I went out for dinner the first training day.

A dose again tomorrow morning.  It's the first time Chemguy isn't coming.  I have a plan this time, where I've thought out specific things I plan to do and some things that I will have the nurse do for me.  Eventually I'll have to do it all, but for now I think that's just setting me up for failure.

That is a smart move.   It's what I would do, taking smaller steps at first .

It seems odd to me that you aren't getting real training on this - or just having it done at an out patient facility. I'm sure that my local hospital does this type of treatment on a regular basis.   It is good that you have the ability to think about ways to make it successful.  Sometimes a permament 'gadget' is attached to a patient so the medication is put in it instead of needing a needle through the skin evey time.  Would that be an option for you?

Kay, is that a Pict line?

Kay, the training is why the first appointment was 5 hours.  I'm at the largest training centre in North America for this.  I don't get to 'pass' and do it at home until I can do both of my hands and my inner elbow.  I also have a binder with a bunch of info that includes all the steps if I want to read them as I go.

Sticking to the hands is best.  If I do need something permanent it would be an IVAD.  From what I understand, a Picc line is temporary.  I forget what cancer patients often get on their chest, maybe that's the Hep-lock?  The IVAD is more internal, and I could go swimming.  As long as my hand veins are working though, it's the better option.

Today went well.  No dizziness.  I need to do it all, but this time I did all of the end steps which in the past I couldn't do because I was too out of it.  This was the confidence boost I really needed, just knowing I could get it in without feeling like I could pass out.

Excellent, chemgal! Give yourself time, you will master it all in due time. We are proud of you.

I'm not sure what the access lines are called - but apparently there are a few different types . They are used for cancer patients, I know.

Way to go chemgal - using your brain to manage your physical and emotional self ought to help.

I hate to think how this could have played out in my location.  Anything more than very basic stuff requires a trip, closest biggish hospital is  a 1.5 hour drive. Three hours to a full service one.   

Thanks Beloved!  I think the nurse was more excited than me :)  I think she really wanted me doing the last steps.  I have now done all the steps, so it's just a matter of doing them all together.

Kay, I used to be open to moving pretty much anywhere within the province when it came to jobs, and certain out of province locations.  Going through so many specialists in a short time has made me reassess that, especially considering I have had various one throughout my entire life.  Now, a transfer to anywhere but a major city and the close surrounding communities would require a lot of thought.  As it is, I've passed on staying for an event in a small community a ways away.  There is no hospital and one of the days would be a day I would treat, and I don't know if I can do it myself by then.

I do know they will train nurses so that they can then train the patients, which would probably be the plan for someone who lives in an area like yours.  I had two extra nurses today.  It was nice, I had that cold cloth on my neck as soon as I asked for it because of one of them :)