Port & Perm-Cath

Recently I had to be admitted again to have a port & perm-cath inserted.  This was my third anaesthetic for this year, & that thought alone terrified me as having MG is a huge risk when being put under.  We had to be at the hospital before 6am & I was second on the list to go through - so at least I didn't have to wait too long with a grumbling tummy!

I have never had a port inserted, although I know about them & have often had discussions with my doctors about having one inserted - especially recently when my veins have just been giving up on me!  The surgeon I went to has inserted all my other perm-caths & knows me well, so I knew that I could trust him completely.  He saw me before I went under, squeezed my hand & told me that everything was going to be ok.  I really appreciated it, as I was stressing whilst I was lying waiting to be wheeled into theatre (in my super sexy one-size-fits-all paper panties & hospital gown - please can someone design something that doesn't look so dreadful?).

The pics above show how the port is inserted, & what it looks like under the skin.  It takes away the horror of them having to dig for a vein as they simply insert the needle into the spongy centre part of the port.  Currently you can see the shape of the port in my chest, but as time goes on this should settle more & you won't even know that it is there!

I had my perm-cath inserted at the same time as I am still having to go in for plasmapheresis & they cannot continually insert temporary lines as my veins are filled with scar tissue & the pain is unreal when they try to break through this.  I didn't want to have to go under again, & also I don't think my medical aid would like me having to book in again!

About 3 hours after my operation I was finally wide awake enough to message friends & family to let them know that I was fine - and I took the beautiful photo above.  Can you tell I am still a bit high on the medication & very unimpressed with the pain?  Gee whiz - the pain.  It was unreal.  I felt like I had been hit by a train in my chest & was completely miserable.  I don't usually ask for pain killers, but this time I had to.  I just couldn't cope with it.  For such a small operation it sure did have a huge impact on my body!

A couple of hours after this my doctor came & said they were happy with how I had recovered so I could go home - that same day!!!  I have NEVER had such a quick hospital stay & I was so excited to go home to my own bed to recover.  I kept a cushion on my chest at all times to protect everything from my dogs as they love to give kisses & cuddles, & we couldn't risk anything being pulled out/scratched.

Since then things have got better day by day.   I am still quite tired & sore, but I am able to move around a lot more & at least I could take off some of my plasters - I react so badly to these & sometimes think that the itching may have been worse than the actual pain.

Three Days Post-Op

Tomorrow I am getting my stitches taken out & the perm-cath dressing changed with one of my favourite nurses - Jenny.  I haven't seen her since my last line at the beginning of the year & she is such a vital part of the team that takes care of me.  I can't wait!

We will be starting chemo (through my port - eeek!) in about 3 weeks time.  I am almost finished with my antibiotics for the PCP pneumonia, & once that is done I will have more blood tests & then the new treatment begins.  I am excited, but also very nervous.  Chemo is no fun, but I am hopeful this will make a difference in the quality of my life - and at least I have the pipes in for any plasma that I may need.

Onwards & upwards!

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!