Letter to all....from LOTSOFKIDS

lotsofkids · July 15, 2006

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 !!!!

the best me · July 15, 2006

Dang Diane. That IS a plane crash, and a car wreck...you will be on my prayer list as you head into this hurricane. Let's pray it's a mild one and does nothing but stir the tides toward a complete recovery (to follow your analogy!) Thank you for the update and for the opportunity to keep you in my prayers. Hang in there, and keep us posted as you can. ((((hugs))))

lotsofkids · July 15, 2006

i app0riceioate your tyouthts , I am curently haveibng troubel to typping band getting my wt hatr8i uprgreadinllll * w8oo oet y9ou see jy reao tyr-

(I will let you see my real typing without a million backspacing strokes!) 'Right now, I can't get my ticker to show the wt changes ....help me out ...my cognitive funtion is challenging me LOL

Big hugs.....and smiles....Diane

the best me · July 15, 2006

Gawd Diane! You ARE challenged!

You have to start over and make a whole new ticker with your updated numbers. You have your info on your sig already. I say screw the ticker and take a break! LOL Bless your heart. Literally!

lotsofkids · July 15, 2006

I' headong to sleeo nownnn gooe ninget ;00

looks like my singatiur is upanmd running

leatha_g · July 15, 2006

My goodness! God bless you, you poor girl! I am SO sorry to hear of all this. Having Systemic Lupus and related clotting disorder/vasculitis, I can very much relate to alot of what you're going through. I sincerely hope you get favorable results from your tests and you are heading into smooth sailing again soon! You will definitely be in my prayers!!

3loves · July 15, 2006

Oh Diane ~ I am sitting here in tears for you. This breaks my heart. My mouth is still on the desk and I'm in shock at all of this. I want to rush over to your house and take care of you!!

I've been wondering where you've been and meant to post on the May thread just today to summons you. You were on my heart. I thought things were crazy around here, but my goodness girl. You know you can count on my prayers and will even ask my church to pray unless you request otherwise. Of course, no names, I would say just a good friend.

The words won't even come out right now. Diane, please know you are loved and cherished here. You have such a great attitude and I know that will take you a long way into your FULL recovery.....I know you won't accept anything less. Please keep in touch when you can.

I am sending you love and hugs my friend!!! :love: :hug:

Elisabethsew · July 15, 2006

You are definitely in my thoughts and prayers. Ask the MD's to do a hypercoagulability work-up on you. I had bilater pulmonary embolisms and testing revealed I was positive for MTHFR 2 which causes abnormal clotting. Keep on posted on your progress.

Mvpo8961 · July 15, 2006

Diane wrap those kids and your husband close around you and let them shower you with the love and attention you deserve. Sounds like you are keeping your thoughts positive. Good things will be in your future. Don't give up the faith.

Let us know how you are doing when you can.

You are in our thoughts and prayers always.

Myra

paula · July 15, 2006

Awe Diane, unbelievable for one person to endure in such a short period of time. (((HUGS))) my friend. Good thing you live with a medical professional... You should be in good hands.

And I dont think I even realized that you were banded in May. duh!

Hang in there Girlfriend...

Hugs and prayers!

lotsofkids · July 15, 2006

and some of yu0 are my original friends here......you all are bringing a smile to my face.

Today I am having a lot of dizzyness and headaches ...but in good spirits. I dont know what my future holds, but I am ready to jump full speed ahead and with positive thoughts! Yes, any prayers are always welcome as I believe nothing positive or negative happens without God's will. The fact that we were alerted to this serious and rare condition shows that I am being given the opportunity to fight it and clean my heart of any cobbwebs I've collected allong in this life.

this is what I've found today while trying to self educate myself with severe cerebral vasculitis (I should stop scaring myself and leave things to the experts.) And for those who already know me....my husband is a physcian (although, way our of our league...at least we can try and make some sense of it all)

What Is the Outlook for People With Vasculitis?

The outlook for someone with vasculitis varies, depending on the type of vasculitis the person has. In the past, people with severe vasculitis may have expected to survive only weeks or months. Today, however, normal life spans are possible with proper treatment. The success of treatment is related to prompt diagnosis, aggressive treatment and careful follow-up.

Once vasculitis is under control, medications may be cautiously withdrawn, with the hope that the patient will sustain a long remission or cure, without the need for further treatment. Because doctors cannot predict how long a person may remain in remission, it is very important for people with more severe forms of vasculitis to continue under the care of a knowledgeable doctor for the rest of their lives.

I currently have a severe situation with both major cerebral arterys 75% to 80% blocked....so things are quite acute at the moment....but I will check in from time to time if only to read your warm wishes and I'll try to have someone post updates if possible.

lotsofkids · July 15, 2006

can someone PM my lapband buddy Robin Alheit (ralheit ?) and direct her to my post. I am challenged with typing and Probalby have 1 or twodsys to get all my paperwork in shape before I go in for my next big operation.....Oh boy....lotsa excitement going on......there HAS to be an easier way to get chocolates!

smiles....

Diane