Magnificent Milestone

Yesterday was a HUGE day for me.  Not because I don't feel very good (Jacob shared his germs with me).  Not because it was Sunday (I missed church).  It was a big, wonderful, magnificent day in which I reached a major, magnificent, monumental, milestone.

After 17 years and 9 months, I am *completely* OFF of CellCept.  CellCept is the medication I take for the Myasthenia Gravis.  I started it in February of 2001 and have been on it ever since.  The only time I *didn't* take it was when I was pregnant with Jacob.

CellCept worked miracles for me.  It was the only MG med I had taken that worked.  Between that and Plasmapheresis, I stayed alive.  I didn't have side effects with CellCept as long as I took it with food.  I've had friends that had catastrophic side effects from this medication.

CellCept is a drug that suppresses the immune system.  With MG, my own immune system attacks the connection between my nerves and muscles (the neuromuscular junction).  So by taking this medication (originally a drug for organ transplant patients to help prevent rejection), the MG symptoms were slightly abated.  However, it was NOT a cure.

I am still NOT cured.

I am still NOT in remission... I have simply swapped out medication and a grueling procedure in which 150% of my blood volume was taken out, separated, put back together and put back in my body (plasmapheresis) for a foot bath. 

Yup, I said foot bath.  But not any foot bath... The IonCleanse by AMD.  This machine gave me the miracle I have been praying for since I had my first symptom in July of 1996.  IF I use the IonCleanse by AMD three times a week, I don't need pheresis, and I've been able to get off of Prednisone (after 17 years) and now off of CellCept (all WITH my neurologists's consent).

I was fortunate enough to be part of a very small, informal study in which the IonCleanse by AMD was provided for me to use as a possible MG treatment.  It is non-invasive, there are no chemicals in it, it is completely safe, and AMD has a perfect safety record. Click HERE to read the white paper on the study.)

As a side note, since using the foot bath (November 10 will be 2 years since my very first one), I have not needed plasmapheresis for 21 months!!!  

I'm so thankful to God for bringing this machine into my life.  My quality of life is SO much better.  I can drive again.  After almost 15 years of being primarily home bound, I can go places with or without Jacob, without my husband.  Nothing. Else. Has. Changed. In my medical regiment.  If I over do it, or if I miss a bunch of treatments, I get more symptomatic.

And I'll tell you before you even check out the link, it's *expensive*.  Sure, you could find something cheaper; but please remember, you get what you pay for.  A cheap, Chinese knock off has NO oversight... There is NO ONE making sure it's safe.  It hasn't been tested.  It's basically a glorified battery charger.  (We ARE talking water and electricity here)... And no, I don't work for AMD.  I'm not a salesman.  I just want everyone to know what a miracle this machine has been in my life.

AMD has the patent on this technology.  As I said, they have a 100% safety rating.  The people who own the company are good people.  If you call the company, you may very well talk to one of the founders.  They aren't pretentious.  They are good, decent people who want to help others.

Anyway... I just wanted to share my amazing news with everyone, and thank God for seeing fit to bring this machine into my life.

NEVER give up.  I went 20 years with this disease controlling my life.  But people were praying for me every. single. day.  I don't know why it took 20 years.  And I don't care.  The IonCleanse by AMD has given me my life back, and I give God all the glory!

Be blessed y'all!

Click HERE to go to the AMD website. (We in the study all used the Solo machine.)

Another Quick Update

Well, I get to look forward to NO doctors or dentist appointments, no treatments, no surgeries, no tests...until vacation, and then it's alllllll relaxin' time.

The trach is doing MUCH better.  Just this morning when I cleaned it there was minimal pain.  HALLELUJAH!  SO much better.  Yikes.

The pheresis from Friday is still draggin' me down.  It was run slower, and there was a different brand of albumin (or it was in a different bottle at least).  I'm hoping I'm just psyching myself out about the different albumin and that it really doesn't matter.  I know some people with MG who get IVIG need a specific brand or they don't get the same benefits or have worse side effects.  With me, it's how fast I run.  I can't run at 80 or 90, A) because it takes all dang day and B) it seems like the longer I'm on the machine the worse I feel.  Friday I ran at about a 90 average.  Phhhht.

Anywho.  Check out my jewelry site: www.facebook.com/MGKerriJewelry  New promo:  From now until April 11 (I leave for vacation soon after, and have to get the house sitter all situated, pack etc.) free key fob with any $25.00 purchase, special orders not included.  Happy shopping!

The Week From The Pit

Okay. 

So Sunday was okay.  It was mostly fun.  Just really, really, busy.  Went with my mom and dad to get them a new computer and therefore assisted them in joining the 21st century! Whoo-Hoo!!!  Then it was hooking it up, (Thank you Doug) and downloading and uploading and sideloading (hey, don't want to leave anyone out)...

Then lessons.  Oh, and lunch in between at Steak and Shake, which Jacob loves, everyone else likes, and by everyone, I mean EVERYONE.  Oh my gravy.  There were SO many people there.  Screaming kids, whiny adults, weak and hungry normal people (that would be us).  Well, kids eat free on weekends.  Ah.  Note to self:  being in a room with that many people, unruly children (and therefore redundantly, germs), ridiculously inept parents and a bunch of hungry people is NOT worth a free, otherwise overpriced, grilled cheese and juice box.

So we move on to Monday.  Just felt like crap.  It's time for pheresis, and the day before just knocked me out.  Very long day.  Very long.

Tuesday AM started out better.  Started.  Until I clean my trach.  It had been hurting for a couple of days, and sometimes it's just an irritation that goes away, and other times it means I have to change trachs. (I have 2).  Sometimes just taking the one I have in out, washing it and putting it back in does the trick.  (I always get two of the same exact thing, but one is always more comfortable.  Don't ask.  I don't know).

So I take this one out, and put it the other one, and all h$ll breaks loose.  Or, specifically, a gigantic granuloma breaks lose.  So what is a granuloma?  "A granuloma is a benign growth that results from irritation or trauma." www.voicemedicine.com


So.  I have several granulomas around my trach, and they will never completely go away.  Why?


"Simply removing the granuloma surgically without correcting the irritation that caused it will result in regrowth in the overwhelming majority of cases. In fact, treating the underlying irritation properly generally makes surgery unnecessary, as the granuloma will recede by itself."  www.voicemedicine.com 

And since my trach is the underlying problem of the irritation, and I have to breathe.....well, you get the picture.       

So Tuesday a part of a giant granuloma broke loose from its base, and decided to occlude about 1/3 of my airway.  Now, when you already have about 60% lung function on your best day, a 33% occlusion of your only airway is NOT a good thing.  I tried to stay calm, as freaking out would only make breathing more difficult.  I immediately jumped on facebook and asked for prayer, because I KNEW I could not do this alone.

I ended up going to the ER at Metro, because neither Allegan nor St. Mary's in Grand Rapids have an in-house ENT.  I don't have a babysitter, so my sister (THANK YOU THANK YOU THANK YOU) went to my parents house to watch Jacob (I didn't even know at the time they had a dr. appt.)  So we head north, 45 minutes to my folks', and head to Metro.  I have to say, they are efficient!  I was being brought to a room before Doug even got in from parking the car!  There were NO other patients waiting, which is why...)

So the ENT comes down, and after much debate, I take the trach out, and she starts burning off the offending part of the granuloma with silver nitrate.  Anyone who tells you that granuloma tissue has no feeling, or that silver nitrate doesn't hurt, LIES.

I have used silver nitrate before on the outside of my stoma (the whole in my neck) but NEVER on the INSIDE.  Good Lord in Heaven, now I know why.  So here I lay, on this gurney, half sitting up because I can't lay flat, and this woman is burning flesh out of my only breathing source.  No anesthesia, no numbing anything, no painkillers.  Just Git-r-done.

THEN I had to shove my trach back into this pain filled burned and bleeding cavity while 17 people and their brothers watch. And I had no mirror. It's very difficult to override your brain, (which is made to alert you to AVOID pain) and cause yourself pain on purpose.

It's like those old cartoons with the angel/devil on the shoulders:

Brain: NO!!  Stop!  This hurts!  No pain!  That's what I'm telling you!!

Hand:  Shove it in, you need to breathe!

Brain:  No!  I won't let you!

Hand:  I will be victorious {insert evil laugh, cuz I can't right now}

Anyway, you get the idea.  Finally get it in, and the first thing I say is "PAIN!"  Then comes the morphine, and I forgive everyone in the room.  Even my brain and hand.

So the beautiful thing about silver nitrate is that is keeps working.  So today, I still feel the effects of the silver (even though they "neutralized it" with saline...)  mmm-hm.  My stoma feels like someone took a hot curling iron and decided to try to "insert here." OUCH. Now I have to make an appointment with an ENT to have the rest of the granulomas surgically removed. Oh joy, and happiness!

But I can breathe.  So.  It is what it is. (However, the next time I hear someone complain about something compeltely insignificant or just plain stupid like a bad hair day, ya better duck...just sayin'.)

Then comes Wednesday:  Up at 5:20 AM to go to get tortured plasmapheresis.  I have to say, it couldn't have gone smoother, thank you Jesus!!  THEN we got room service for lunch (that was cool) and mine was free! (Well, we all know what free means) and then it was off to the endocrinologist.

From that appointment:  My blood sugar is perfect, don't change a thing. (yay!)  Who is my fibromyalgia doc?  Don't have one.  No one takes it seriously.  So we're working on that...  I asked her about who to see about chronic pain.  She said call your doc and tell him you want to talk about a "pain contract."  That means that I sign something that says they'll give me painkillers if I agree to not sell them or snort them or try to get more from another doc, etc.  

I was like, "Oh, just like the thing I have to sign when I get my allergy medicine that says I won't make meth."

Like if I was some creepy criminally minded drug addict and meth head my signature would be more important to me than my habit. Whatever.  Just another ludicrous example of the society we live in.

So yeah.  Today it's just me and Jacob and three dogs, and I feel like death warmed over from pheresis, and the burning, bleeding trach adds a nice touch as well.

But I'm here.  Tomorrow is day 2 of pheresis, then Tuesday I have to have a tooth rebuilt, and Wednedsay, back to the hospital for pheresis and an appt. with my pulmonologist.

I LOVE being me!!! : )

Thanks for hanging in reading this...I know it was quite long, but as you can see, I haven't had much time to post.

Blech.

Bad MG day today.  Feel like lukewarm oatmeal.  Can't keep my eyes open.  Need my O2 this morning.  SO tired. 

Having plasmapheresis Wednesday and Friday this week, then next Wednesday too.  I've gone almost 2 months on 2 treatments....that's AWESOME.

Have to go rest now.

Love to all.

Ann Arbor Yesterday

Ug. I hate going to Ann Arbor to get phresis on an "off'" day. For example, 98% of the time we go on Friday. This time, for various reasons, we went yesterday (a Monday). I don't know if it was because of the holiday weekend and people took an extra day off or what.

The FOUR main players (people who know me the best) including our beloved Dawn, who is my nurse most of the time, were gone. GONE. That left four people who were physically capable of doing the treatment: one woman who has done my pheresis once or twice, one who did it once, couldn't get the needle in my EASY arm (had to take the thing out 3 times!), one who has never done it, and one part-timer who has run me once before. I got the part timer.

This woman is completely capable, and is a very nice, compassionate person. She just doesn't know ME, how my veins run, etc. Both of my anicube (sp?) veins (the vein where your elbow bends) run crookedly. I know, I know. NOTHING about me can be simple and straightforward.

So the needle wasn't right in my draw arm (where they take the blood out) from the beginning. I could tell...it just wasn't right. I can't tell you how I know that, or how to fix it, I can just tell if it's not right. So for the first 45 minutes, we played with the needle (the width of a fork tine) pushing it in and out every few minutes to see if we could get a better position. NOT happening.

Since my return arm (where the blood with the new plasma goes back into me) was primo, she switched it and made THAT my draw arm. (The draw arm needs the best position.) After another 30 minutes or so, the needle that was not right from the beginning completely faded out, and she had to stick me again, with an angio needle (slightly smaller in width, but longer and sharp as a scalpel). That lasted about 30 minutes, and I wasn't completely done with the treatment yet (one bottle to go) but I was like that's it. I'm DONE! So we stopped. I normally run in about 1 hour and 10 or 15 minutes. This had been over 2 hours. It was NOT fun.

Now I have a hard little ball in my left anicube vein (the draw arm) and I don't know if it's a scar tissue blob or a clot. Nice. And just think, I get to do his every three weeks! Whoo-Hoo!!

I love my life I love my life I love my life.