Destination Unknown

Last week proved to be very hectic with a trip to Cape Town to see the Prof about what treatment plan we can try out now. I had a round of plasmapheresis again at the beginning of April, this time using FFP - i.e. Fresh Frozen Plasma {Fresh frozen plasma is a blood product made from the liquid portion of whole blood. It is used to treat conditions in which there are low blood clotting factors or low levels of other blood proteins}. I was hoping that perhaps the effects of using fresh plasma rather than the artificial one we have used in the past would make a difference. They also really battled to get a CVP line in due to all the scar tissue that has built up - after 4 attempts in my neck & screaming out in pain, the doctor finally decided to try to insert it into my groin where it slid in easily. Due to all the trauma from the multiple attempts to insert it into my neck, I developed a massive haematoma & could barely move without flinching. I was a misery for at least a week after this, but at least I felt good with regard to my Myasthenia Gravis!

My miserable face - I was so so so sore

I was really praying that this round would last a bit longer & I was LOVING being able to be "normal" for a while - even attending a sewing class & our MG meet-up. I could chat to friends; laugh; pig out on sushi on a date with husband & just generally enjoy my life. It reminded me that I have so much to be grateful for & I really shouldn't take anything for granted.

The Gauteng MG Warriors - some of us

So now, back to Cape Town...

She is so disappointed that I have not responded to the last treatment i tried (Rituximab) & due to the damage in my lungs we can’t try any new treatment until I am completely off my antibiotics. I have to be on these for 6 months & they make me feel ROTTEN! But we can’t take any chances of getting any type of lung infection again as my body would just not cope with it. The antibiotics make me nauseous & lose my appetite (it has been a great diet plan though I guess...) & I have a rotten taste in my mouth. My kidneys have been damaged from the continued use of these too, so I am trying to drink as much water as I can to try help flush them out. End of July I will finally be able to stop taking these & hopefully not have to live on peppermints any more!

Prof has admitted I am probably the worst Myasthenic she has seen as I am just not responding to treatment & my body literally hates me. The funny thing is, she isn't the first doctor to say that to me now! It's like all the little soldiers in my body have the overwhelming urge to go to war, & they don't care with whom.

So for now I am staying on my current medication, just a higher dose to see if that will kick in & help. Once I have completed my antibiotics, we are going to start chemo once again to try kill off my immune system & get it to do what it is meant to! This thought scares me as I have been through this before & the effects on my body are TOUGH. I remember making a bed in the bathroom as there were days I was too weak to make it there in time. But, if I have to go through a little bit of hell to reap the benefits & experience normality then I will take it! I won't have to rely on people for so much; won't have to miss out on social functions & can actually live a full life.

In the mean time I am going to have a port inserted (my veins are terrible & run away any time a needle comes near me!) for my treatments & will have plasmapheresis to keep me from complete crisis - although Prof said I am living in a permanent state of the cusp of crisis. I am booked in at the end of this month to go in to have the port placed & hopefully things will start improving very soon. We just need a set plan, & one that my body responds to.

Date night with husband 

I am not going to allow this disease to get the better of me! It is my 30th coming up soon & I am determined to celebrate this to the best of my ability. Life is for living, there is so much to celebrate & I am blessed in so many aspects.


Onwards & upwards!