New Heart Meds & First IVIG Infusion

15 Mar

IVIG First One

Heart Meds & First IVIG Infusion

My new home nurse came today at 9am (my usual bed time) to start my first home IVIG infusion. The infusion was supposed to last up to 4 hours. It ended up taking about 5.5 hours.

At my last appointment with my lyme doc she told me my blood pressure was too high and I needed to monitor it daily and record it. Well my nurse walks in this morning and takes my blood pressure and her eyes lit up and she said “you are 165/112 that is way too high and you have been just sitting there relaxing since I got here, you could have a stroke one day!”. I told her “yeah this is pretty common since I have hyper POTS I am always tachy”.  So she waited another 30 minutes and took my blood pressure again and we got the same reading.

So she was freaked out and said “in all of my years of being a nurse even in a hospital I have never seen someone so high constantly, most are brady or on the low side”. So she said she felt uncomfortable and called my LLMD right away to ask her to prescribe heart meds. Within 15  min Walmart had my prescription filled for Lisinopril 10mg. I am told to take up to 2 per day as needed if my heart rate is higher than the normal 120/80 and around the 130/90+ range. I have used Beta Blockers in the past for my heart but this med is new and different for me. It’s a ACE inhibitor. So I have hypertension/tachycardia again. But this wasn’t a surprise I have had high blood pressure off and on for 5 years and my Pulse OX used to set off the alarm at 115 pulse daily last year. I know a lot of POTs friends who are high BP also.

The IVIG went pretty smooth. I clotted once or twice and it stopped or alarmed the IV pump. I don’t feel any side effects from the IVIG yet but it’s only been a couple hours since we finished. I was just a little light-headed. The new heart pill is making me more sluggish and my vision seems weirder for now but that should get better as I get used to them. I hope these infusion for my Immunodeficiency will start to make me feel a little bit better.

I will be getting IVIG infusions every 4 weeks for 6 months and then we will see if I need to increase the frequency, continue them or stop them. Next up will be my Ketamine infusion at UC Davis. I only slept maybe an hour last night so I am heading to lay in bed and see if I can fall asleep for a while. I hope all of my fellow chronic illness warriors are having a nice Saturday. Find a reason to smile today no matter how much you may be going through.


3 Responses to “New Heart Meds & First IVIG Infusion”

  1. vm March 15, 2014 at 8:55 pm #

    Hi 49erBry,

    I wish you the highest blessings I can. I am not a doctor – just a concerned citizen who keeps up with your blog, and I am quite concerned that you’re just trying too much shit! I’m sorry to put it that way, but I see all your pictures of supplements, drugs, infusions, etc., and I have just gotten a very worried feeling for you.

    I do not want to insert doubt into your regime. You must believe that something WILL work for you.

    I just want you to look back on your blog and all the things you’ve tried and (be honest, not hopeful) see if any of them has really helped you at all.

    I, too, have tried many things to no avail. The only thing that helped me at all was stopping everything except the necessary painkillers. I let my body try to heal itself and it is taking a damn long time, but it is healing itself somewhat.

    I know this is not cool to say on your inspiring blog, but please take a step back and recognize what you need and eliminate the rest. Simplify your regime, please, please, please?

    Warmest regards,


  2. Brian March 16, 2014 at 10:22 am #

    Wow 49er, I was horrified to see your bedtime is 9am. My bedtime is 10pm. …..
    Working a graveyard shift would be a no-go for me. Right now I am employed in a very part time work at home job and that’s unfortunately all I can handle until I fell a little bit better.

    Hopefully a few more sessions of IV will give you a feel for its efficacy.

  3. SHERRY SMITH March 16, 2014 at 7:31 pm #


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