And…Three Years Later…

Well, this is embarrassing… A lot has gone on since my transplant back in 2013, and I promise to give a recap once I get a chance.  For now, I’d like to celebrate Rare Disease Day! This is the post that I put up on Instagram (@j.mura_designs):

It’s #raredisease day! Reading some stories on rarediseaseday.org and came across a young girl’s story about dealing with #MPGN, the same rare disease that I have. I wish I could reach out to people, especially younger people who are dealing with this disease, and let them know that you are STRONG. You CAN do this, you WILL get through this, and like this girl realized later on, that you are HELPING others improve their lives in coping with this disease.

I was diagnosed at the age of 10 and know what it’s like to experience weight gain, mood swings, depression, fluid retention, migraines, sicknesses that last for weeks, numerous visits to the hospital, and the list goes on. It’s not exactly the easiest thing to go through when you’re a teenager and you feel like you’re alone in a never ending nightmare. I never really talked about my disease with a lot of people until I was older, and never mentioned the medications I was taking to my friends or people at school maybe because I was embarrassed? Was worried they might look at me like I’m a freak? Who knows but, luckily, I was fortunate to have the support group that I have in my family, and I had wonderful friends that accepted me for who I was/am.

To all the people in school who treated you differently, who name called you, to hell with them. They should be the people that motivate you to keep going in life, they are the people who have absolutely no idea what you have been through, how strong you are, and that you are someone 10x stronger than they are.

To all my rare disease homies out there, keep on fighting because you are a survivor! Be aware that you are rare and never give up hope. Also, remember to never lose your sense of humor, except maybe when you have a transplant, because laughing too much after surgery can sometimes hurt like a b*tch!

So Close….. Yet So Far….

So today is November 7th….

NO surgery.

In the past 3 weeks I have been busy with my Plasmapheresis and getting everything scheduled for my transplant today. Unfortunately, the last two treatments out of the 6, seemed to not have done much in lowering my titer count.  If you don’t like blood, I suggest you don’t look further into this entry.

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These pictures aren’t all that bad to me but I know some of my friends can’t stand the sight of blood.  These are a few pictures from my Plasmapheresis treatments.  A catheter was inserted on Friday, October 25th… probably not the most fun I’ve had, but it wasn’t too bad.  My neck was just really sore after they inserted it and sleeping was a bit difficult the first couple of nights.  Felt like someone punched me really hard in the neck.  After 3 treatments, my neck seemed to be pretty much fine and the treatments are pain free.

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image_1My machine.

image_5My fabulous fashion statement.

Treatments took about a couple hours the first two times, and each time after was shorter.  The very last one was about 50 minutes.

So, after preparing for the past few months for this transplant to take place today, I was told yesterday that my titer count was not low enough.  Which will result in most likely more treatments and a new surgery date of… December…. most likely in the beginning of December.  As much as I want to be furious and upset, and all the emotional frustration that I am experiencing right now, it doesn’t make sense to cry about it.  It is better to be safe than sorry, and to make sure everything is done correctly in order to have a successful surgery.  After all, I am extremely lucky to be receiving a kidney as quickly as I am.  A month is nothing compared to people who have been waiting 10+ years for a kidney.

For all my survivors out there, keep your head up and stay strong!

“A strong person knows how to keep their life in line.  With tears in their eyes, still manages to say, ‘Nah, I’m fine.'” – Unknown