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Hi guys, I just wrote this scripted letter because I will be going silent again as there are certainly some issues happening in my life right now.Hope all is shimmery and bright on your side...my big hugs to you dear friends.

Hmmm, where do I start? The fact that typing each and every word in the following sentences are being written 3 to 4 times each…is my personal challenge, I will try and limit my words.

Where have I been and what have I been doing?

In summary (only joking) I was in a plane crash….then a horrible car accident and now I am on a cruise ship heading into a hurricane….confused? So am I… and also overwhelmed.

I had a bad virus about 7 weeks ago that caused me to have an emergency acute Pericarditis (inflammation and Fluid retention around the heart) that was the plane crash. I spent a week in the hospital while they drained fluid from my heart and both lungs and gave me steroids to stop the inflammation.

I left the hospital and thought I was on the road to recovery….not quiet…here is the horrible car crash. I started deteriorating badly while on vacation in Chicago. I was in congestive heart failure due to the Pericardium membrane had become scarred and thickened and was now, not allowing my heart to expand. I rushed back to Akron on an emergency flight and was re-admitted into the hospital. Lots of attention and tests including having a Heart Catheterization which confirmed that I needed an emergency Pericardectomy operation. I now no longer have a pericardium membrane and instead I have a lovely ten inch scar down the middle of my chest from heart surgery. I spent over two weeks on the heart-ward. I came home today…..but I will be going back on Monday to start my cruise ship into the hurricane.

During one of the operations, I had two mini strokes which is effecting my fine motor skills….i.e. the difficulty typing (this is taking me 2 hours….but I suppose it as a physical therapy and will help me towards my recovery) Because of the strokes, they ordered more tests including MRI’s and MRA (arteries) that led to finding a more ominous problem (can it really get worse?) They now ordered an angiogram catheter to probe my brain and found that BOTH my major cerebral arteries of the brain are over 75% blocked and I am having severe occlusive disease at the base of my skull called vaculitis(sp?)

I will probably be checked into the Cleveland Clinic or the University Hospital System in

Cleveland early this week, as we are mobilizing to find the most qualified Neuro/vascular surgeon in the area. My previous surgeries were at Summa (City hospital in Akron)

Most likely, we will place shunts in those arteries….however, there is a possibility that I might respond favorably to immno suppressants and be able to forgo a dangerous surgery. These are the events that we are currently right in the middle of and will be determined as events unfold. I am in good spirits and actually feeling very grateful that we were able to realize something bigger was looming in the shadows. I am blessed and looking forward to facing this head on. There are still many unanswered questions….like what’s caused this process? Are they related in some way? Possibly and possibly it is some sort of auto-immune (my body is attacking itself) those answers will all be addressed as time passes new pieces of the puzzle come together.

I will keep you informed, meanwhile, please keep my in your thoughts and prayers.

Smiles and hugs, Diane

Oh...and yes I am still losing wt....although it seems irrelivant.....It is probably a positive towards my overall recovery and I need every positive right now !!!!

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I was just coming back in here to give a big hug to vinesqueen. I was reading her journal and SHE too has a lot on her plate (poor thing)

I tell my kids give the simplest of kindness......smile and be pleasant with everyone.....you never know what difficulties someone is facing at the moment.

I too will be facing and am currently on high doses of steroidsl. That has squashed my hopes for quick wt loss.....but I think if I don't give in to the increase in appetite...I can hopefully counter-attack.

I have lost 20lbs since all this mess has come on board....so I can coast with that for a while (I do look nicer!)

thanks everyone for the support and prayers....

Diane~

You are in my thoughts and prayers. Sounds like you a re blessed with a wonderful family and friends, which will help lighten the load. And your sense of humor is wonderful! I have a card on my desk that says, "We laugh to survive"...I love that. Laughter can be truly healing. I am in awe of your strength and pray that things start looking up for you soon.

Hugs~

Emily

Diane,

I hope you hear good news from your doctors and you are able to get this taken care of as soon as possible!

*hugs*

Please write back soon and let us know what the Neuro Guru had to say.

We're all pulling for you!

we were on the phones this morning and trying to get me hooked up wth the Neuro gurus in cleveland. The idiot nurse told me the next priority appointment is booking well into September....I smiled, and told her that Her doctor had just been discussing me with another Neuro for a 1/2 phone consult and please call and let me know when THE DOC wants to see me. It will not be more than a week to ten days.....as I am a walking time bomb!

She never got back with me.....but he was probably doing procedures or something and first thing in the morning....I will be chasing theml. I am a very rational person.....but patience has never been one of my better traits!

Severe Cerebral Vasculitis is very rare (and dangerous) so I guess I am "just" special!

I need to clean up the bills and paperwork....and take my mind off all this health stuff......I made a haircut appointment for tomorrow so at least I will feel pampered for a day and have a style before they give me a bald buzz cut! One of my friends said she will go bald with me! But she has long beautiful hair....so I can't let her do that!

Anyhow, my spirits are still high and my trust and faith that God is overseeing all of this is keeping me calm.

big hugs to all.....Diane : )

So glad to hear from you, lady. You are in my thoughts:)

Show us your scars thread......but I don't want to appear a show stealer. I really am not in the scar beauty pagent.......but I think, Yes, I probaby have won this event! A recent 10 inch open heart scar, 3 chest tubes, right, left lung and diaphram....and of course my banding scars of 5/23

Lots of brusing and 6 central lines placed in my arms, neck and shoulders! I am not comfortable with posting myself in such a way so this will be a temporary link.

big hugs...Diane

be donning a lovely cranial scar and a new haircut?

Oh, and 3yrs ago plate and pins from a tibia/fibula spiral fracture......and my twins came.....one with normal delivery and the second by emergency C-section

My body is becoming a road map of my hospital visits!!!

hugs....diane

Nothing to say but...

((( HUGS )))

Bless you, we're thinking of you & Love you!

well, my daughter is up in the night and she can't sleep, her throat is bothering her. We started treating her with antibiotics from Sunday night when my hubby suspected strep throat.

Looks like it is mono which is much worse and highly contagious. (I am worried that I am very much immune compromised these days...but we'll cross that bridge if needed) I have already been hugging her for the past 3 days and exposed if it is meant to be.

I will somehow get her to the Peds office in the am (I can't drive and hubby is working two hrs away)A blood test will confirm if she has Mono.

When it rains in my house.........it becomes Monsoon Season!

hugs.....diane : )

Diane - we want to see the scar pix.. please? I have a map on my belly too - but I think You have more road-ways. :biggrin1:

Goodness, now a sick little one. How in the world did she get this - in the middle of the summer?

Helping her to get well may help you get your mind off of your own health conditions. PLUS - you'll get some special bonding in there! Just remember, God always makes lemonade out of lemons.

Sure wish we lived closer... LBT would do some cooking and cleaning for ya!

((hugs)) to better days!

Did you get a hold of your doc for that appt? Some nurses don't like not being in control. Priority appt in Sept? That is just stupid talk. :eek:

It will probably be difficult, but stay away from your daughter as much as possible. We had a very nasty strain of the strep that went around our family from our July 4th get together. My SIL thought it would be fine to bring her son with a rash and a fever b/c her wacko doc said he wasn't contagious. Well.....there were 5+ family members that ended up with this and my youngest had scarlet fever. It was horrible. I guess the medical people are seeing a lot more strep this year. Don't take chances....get antibiotics started ASAP to prevent the spread.

Did you post your scars? I missed them if you did. I bet you would win the prize. :heh: Take care my friend and keep us informed.

Dear Diane-

I am so sorry to hear about all of this. I work terteriary care hospital and hon-that is quite a triple whammy! Rehab is not so great in Cleveland in the usual places-PM me if you need details. Akron actually is a better rehab town and Toledo is good. My thoughts are with you!!!!

wELL, I took my daughter in the morning to the Pediatrician and the good news was....it was only strep and not mono.

The bad news was.....while the doc was doing his clinical exam of my daughter......I was running out of the exam room actively vomiting in a plastic container!

I was having hot sweats and nausea....with a horrible headache. When we arrived home ... I called the docs and they said I need to come to the hospital thru the emergency room and be admitted. So, from Tuesday thru Saturday that is where I have been. They did more tests on me, including a nuclear speck test of the brain. The official dx is something that I never even heard of....it is very rare...about 1 in 2 million! called MOYAMOYA (you can google it) I don't have vasculitis.....I have moyamoya. There is no cure or drugs to treat this.....only major surgery to improve oxygen levels. I will need a revasculization surgery...sort of a bi-pass surgery for the brain. Without surgery I am at great risk of stroke and/or hemmorages.

We have the team at Case Western University Hospitals working on putting together a game plan and the team at Cleveland Clinic to give a second opinion as well. It'll probably be a few weeks before we go for surgery. We want to be as informed as possible as to the risks. Well.....that's it folks....I will no longer worry about my banding surgery....as these last two months have been quite a ride with open heart surgury and my upcoming surgery will make everything else seem like a stroll in the park!!!!

send positive wishes my way.....smiles....diane

and Murphles you are right....I enjoyed Akron care a lot. This week while in University Hospital...it was so large and the care seemed so impersonal.

But they are the teaching hosp and have the cutting edge guru's on board to help with my situation.

My goodness Diane!! Even though it's rare, at least you know what your up against, sort of. I will google it. Of course, in my small world, I've never heard of it. Glad your getting a second consult to be sure.

I will ask the Lord to lift you in His arms and carry you. He has promised to never leave us and He is with you now.

Take care and I hope you get a good nights rest!! Keep in touch!!

~God Bless~