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.)

Really? {Palm Slap to Forehead}

I know it's been a while since I posted.  For my few remaining readers, I humbly apologize.  Things have been a bit crazy.  Building a website is a wee bit more time consuming than I had originally  anticipated.

Anywho.  Here is yet another frustration of chronic illness:  dealing with incompetent staff and doctors.  Friday I get a phone call from my neurologist's office.  It was a young lady with a heavy eastern European accent of some kind.

Completely unwitting, probably-filling-in-for-someone-else-who-usually-makes-phone-calls, totally unaware, heavily accented assistant:  {Do your best Natasha from Boris and Natasha voice}

"Yes, this is {some unintelligible name} from Dr. Sullivan's office, may I speak to Kerri please."

Me:  "This is she."

Natasha:  "Yes, I'm calling to tell you that your labs are normal."

Me:  "What labs?"

Natasha:  "Your labs.  Your blood work.  It is all good."

Me:  "I haven't had any labs done for Dr. Sullivan.  Could this be from plasmapheresis?" {I have to get blood drawn every time they do pheresis because they check my ionized calcium and crit}

Natasha:  "Yes, your calcium and complete blood work, is all normal, okay?"

Me:  "Yes, I knew that.  I always get a copy of my blood work when I get it done.  What I DO need is a liver panel done because I'm on CellCept."

Natasha:  "They ran a complete blood work.  Everything is fine."

Me: {incredulous, voice dripping with disdain} "So you're telling me they ran a liver panel the last time I had pheresis done?"

Natasha:  "Yes, they did liver.  Everything is good, okay?"

I was like, "Yah, everything is NOT good, thanks for calling."

UN-believable.  I know dang well I didn't have a liver panel. What if I were not educated about my disease?  What if I were newly diagnosed and didn't know to question EVERYTHING?

So I called the nurse who generously gave me her direct line, and left her a message asking for an order for a liver panel because it's been a long time, and by the way, whoever called me has NO CLUE what they are talking about and maybe shouldn't be calling patients.

So this morning I get a call from a totally different woman (who had a brain).  She told me she had an order for a liver panel and wanted to confirm my mailing address.  She also said that there was a note from Dr. Sullivan saying that "this isn't really necessary because CellCept doesn't contribute to liver toxicity.  But I am mailing you the order."

I went through the roof.  I said, "I have a huge problem with that.  My previous neurologist was the HEAD of the neuromuscular department at the University of Michigan, and he tested my liver enzymes every 6 months.  I've been waiting for Dr. Sullivan to order a liver panel, but he never did, so I had to do it!  After my pregnancy, my liver levels were already elevated without even being ON CellCept, and I had to WAIT 3 days for them to go down before my doctor would even let me start taking CellCept again!"

And I proceeded to tell her about Clueless Natasha and her random, inaccurate prattle last Friday.

Needless to say, (yet I say it anyway) I am getting a new neurologist!  Preferably one who knows his {beep} from a hole in the ground!

And Ya Wonder Why I'm Stressed

This goes along with "a day in the life" of a chronically ill patient.

I have been trying to get my CellCept refilled.  CellCept and plasmapheresis keep me alive.  I'm not being melodramatic;  I can assure you that if I stopped taking CellCept (which I did when I had Jacob, and it wasn't pretty), and plasmapheresis I would eventually die.  SO.  Pretty important that I get my medication.

On December 27, 2011, Express Scripts called my doc to see if he had meant to change the dosage on my CellCept (from 4 pills a day to 2).  NO response.  I called at the begining of January after I received one bottle of CellCept with the directions of 2 tabs a day, and it was a 2 month supply at that dosage.

I'm supposed to receive 3 months supply, and of course, the right dose would be nice.  So I called Dr. Sullivan's office again.  Called them 3 days in a row before someone called me back.  The office manager called back, and ASSURED me it would be taken care of.

So I get a letter from Express Scripts saying that it's too soon to refill the CellCept.  Being the follow-upper that I am, I e-mail Express Scripts to see if I can get the details of the script to make sure it's correct this time.  So they get back to me, and it IS for 3 months supply this time....of TWO tablets a day.

{insert screaming, ranting, raving, and pulling of the hair}

So.  I called Express Scripts to double-verify it was wrong before I start calling people ripping their heads off.  They confirmed it was wrong, and cancelled the prescription completely.  So Monday (2 days ago) I called the office manager again and asked her what I had to do to get the correct medication.  I asked her fax in the RIGHT order, gave her the fax number, repeated the information twice, and asked her to call me when she had done this.

{chirp chirp chirp}

Yup, that's what I've heard.  It's Wednesday now, and I just called Express Scripts to see if the doc had called it in.  You guessed it:  Nope.

So I'm BACK on the phone to the doc's office, and get a gentleman who told me my doc got a new nurse, and asked me if I would like to give it one more try with HER (to get it done correctly).  I said absolutely not, I want to talk to someone in charge.  So I got the "supervisor."

Left a message with this supervisor, so we'll see what happens.  If they can't get their proverbial poop in a group, I WILL be seeking a new neurologist. (Which I already want to do, but my husband doesn't think I'm being reasonable....I'm belittling and condescending to my docs.)  Which I don't agree with, but in situations like this, if I was:  Hmm...wonder why???

And this is ONE of my many, many medications.  December 27th was 35 days ago.  Thirty-five days for one, life-saving medication.  Sure am glad I haven't run out of it!

MG and Me

Whoever tells you this disease isn't progressive is full of it. Whoever tells you that there's no pain involved is full of it. I've been taking a medication called CellCept for 8 years now, and it's worked really well. I don't know if my body got acclimated to it or what. Although I WAS off it for 16 months with getting and being pregnant with Jacob. I think maybe that's part of it. Your body changes SO much when you're pregnant. Maybe what worked before won't work again. I don't think I'll ever get to the level of strength I had before having Jacob. I wouldn't change anything, because I can't IMAGINE my life without that child, but it was a huge physical sacrifice from which complete recovery is unlikely.

Plasmapheresis works well, but ideally I should probably have it once a week. Well, that's not practical when you have to drive 280 miles round trip, find someone to watch Jacob, etc. No hospital closer does in it my arm veins (peripherally), so I woud have to get a fistula, port, or quinton cath. to get it anywhere around here. I've had the quinton cath, and it's HORRIBLE. Ports and fistulas can easily get blocked or infected.

An easy solution is to go back up on the prednisone, and have my weight go up even more, have my bones thin even more, and give me more arthritis. But the MG might get better. There's a medication they just started using for MG called Rituxan. It's actually a chemo drug (you don't lose your hair) that they use for luekemia, non-Hodgkins lymphoma and rheumatoid arthritis. There are some crazy side effects though....like if you've ever been exposed to something horrendous (like TB, which I have been, shingles, etc.) it could come back en force. Or you could get some lovely new virus that your body is unable to fight off.

Don't you love my choices? I know, you really wish you could be me! One other option is to stop the CellCept and try Imuran. Been around forever. Kind of the Prozac of autoimmune drugs.

SO anywho. If you are a praying person, please keep me and this situation in your prayers, as well as my family. It's very difficult for Doug to be a full time boss, as well as a caregiver to me and parent to Jacob. Oh, and he's a husband. I completely get when he gets frustrated...I just don't think he gets my end of it sometimes. Like I told him the other day...it's not a lot of fun being me.