Good Thoughts

[Meeps83]

Thanks guys. It means a lot.


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[smartrock]

Oh man, I'm so sorry you're dealing with all this. More wishes for some resolution.

[TuMicks]

I got a graduate degree in nursing at UW-Madison. I know it's a first rate med school/tertiary care center. And no matter where you live in the state, I know the level of care is pretty dern good for UW's influence.

There are a bunch of modalities to keep you going. But in addition to the good care your getting, has anyone mentioned any clinical trials to you?

Idiopathic thrombocytopenic purpura | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program

Oh, I wish I could give you some of my platelets!!!

[Meeps83]

I've done gamma and promacta, nplate is next.


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[TuMicks]

Nplate looks very interesting. Activates the receptor in the marrow that prompts platelet formation. Data looks persuasive.

It sounds like you have a good team. You keep up the fight. We'll keep up the prayers.

[Meeps83]

He only downfall is that I will have to go there weekly without fail for an injection. Monday-Friday only so I'd be missing more work.


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[annkie]

Sending you some healing vibes.


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[TuMicks]

If it's an injection (as opposed to an infusion) that's pretty low tech. You might explore with your doctor if there could be a medical person (I'll bet you know some R.N.'s or even pharmacists) who could give you a daily injection and do the low-intensity monitoring (watch for side effects, take vital signs). I'm sure you'd be expected to get frequent lab work, but lots of labs are open before and after work hours.

I've taught many, many patients to give themselves injections (Lovenox, insulin, anti-MS meds. Some MS meds need to be refrigerated and reconstituted with sterile water. People have managed doing that.)

I've known people who experienced sepsis and had to get weeks and weeks of twice daily infusions (through PICC lines), and still managed to work (obviously, it depends upon your type of work.)

So, so much depends upon your health insurance (I know... medical insurance sucks for a lot of people) but nurses are dispatched to peoples' homes for some of these things.

I don't know... but you could explore some of these things with your MD and a case manager. I can't emphasize enough how important the case managers can be as you navigate through this.

[smartrock]

Looks like it's a subcutaneous injection, which is easy enough to teach and learn. If I'm reading the drug info correctly, weekly platelet counts to determine the proper dose is needed until things stabilize, so weekly visits may be needed for a while. I hope your job will work with you to accommodate your treatment needs in the hope that in the not too distant future you won't be going weekly. Maybe if you can snag the first morning appointment you can still get in part of a work day, although I don't know your travel time.

[TuMicks]

Subcutaneous is simple. If the drug is powdered and needs reconstitution, that is just another step to learn, but it's not hard.

Keep stressing to your medical team that you want treatment to fit your lifestyle and allow you to work. Injections should not tie you down.