Monday, September 13, 2021

Time to try something new for my health

 It's been about 2 years since I started doing IVIG treatments for Myasthenia Gravis.  It has been going very well.  My nurse comes every 3 weeks and accesses my port to start the infusion.The results that I have seen have been amazing! The only drawback is the side effects. Ugh.  Not very fun.  The migraines that I get can sometimes be debillitating.  I just have to take meds and go to bed.  Then I have side effects from those meds.  It makes it quite interesting. The fatigue I also have the two days after is very strong.

I recently had my doctor move and I now how a different doctor at Shands Hospital.  He asked me to consider trying to do my treatments subcutaneously.  The benefit in doing that is that I would be getting smaller amounts of medication more frequently, so I shouldn't be dealing with migraines and fatigue from treatments.  The drawbacks would be the fact that I wouldn't be using my port, but it would have to still be flushed montly.  Also, I would be administering the treatments myself.  Yikes. 

After praying bunches, and going through many insurance hurdles, we decided to try the SUBQ route.  Honestly, it's a little traumatic giving myself the medications.  I have to insert 7 needles into my skin and tape them there.  Then, I hook up a pump with the medication and it is infused to those 7 sites for about an hour and 40 minutes.  I have never given myself a shot before.  I'm the type of person that when I get blood drawn, I don't even look.  

When the nurse came to teach me how to do it, I was quite scared.  But, God gave me so much grace and strength to get through it.  She inserted the first needle, then handed me the next one and said, "Now you do it."  I looked at the needle, then at Patrick, and said, "I can't do this."  My sweet, strong husband looked at me and said, "You have to do this."  And so, I did.  And the next one after that was slightly easier.  

I just finished the 3rd week of treatments this way. The side effects have been minimal praise the Lord.  I'm almost getting used to this new schedule.  I have to infuse the medications every week. So, hopefully by next month I'll be a pro!

Thanks for those that have asked, and for those that pray for me.  I sure am blessed!


  1. I rarely ever comment but you have a prayer partner here. I've been reading and getting blessed by your posts. So glad you were able to administer these shots and that the side effects are less debilitating. Lord bless you and your family.

  2. Your spirit of acceptance and reliance upon God through all of your illness, treatments, and searching is such an inspiration and encouragement to all of us! Praying for success and continued enablement in these treatments, knowing that one day, they will not be needed!

  3. You so seldom mention your treatment and the nasty side affects that I forget what you go through all the time. I am grateful for the new doctor and new routine that lessens (is that right?) the side affects. I am also grateful that Patrick gave you support in a firm way. It was probably hard for him.

    May God give you peace during your self treatments.

  4. Still praying for you, Kami. I do appreciate your medical updates from time to time. It helps us know how to keep praying. I am glad this new kind of treatment is working better with less side effects.

  5. I appreciate the update Kami. I'm so glad to read you have something new to try and that it appears to reduce the side effects. Hugs xx