Prayers for Kelly and Help is Needed

If any of you out there have any experience with ECMO please head over to Kelly's blog.  They need your help....and prayers for Kelly's lungs to heal.

CF Can Kiss My Fucking Ass

Today is the big day.  Today is the day I am officially presented to the transplant team.  But so much shit is going on I totally forgot until I was driving to class tonight.  I should call the coordinator tomorrow and find out if I actually WAS presented.  Then await my appointment in April to see what the outcome was.

On the shit front....

Its been a devastating few days in the CF world.

A friend of mine who was transplanted a little over a year ago is in the ICU on the vent and ECMO trying to fight pneumonia and rejection.

Another good friend of mine was transplanted just a few days ago, was doing great, sitting up in a chair and hours later re-vented and now on ECMO fighting pneumonia.

And the closest friend was hospitalized a couple weeks ago for a routine exacerbation but steadily declined.  They transferred her to Stanford in CA earlier today to re-activate her on the transplant list.  I just found out a few hours ago she was vented and her husband was told she has 7-10 on the vent to wait for lungs, before they have to de-activate her.  7-10 days.

I am just so done with CF.  I am so over it.  It's too much to handle.  I just can't do it.

So please, no matter what religious denomination you may subscribe to, PLEASE sending healing vibes to all three of these fabulous Cysters.  They all have husbands (one is engaged and planning her wedding) and deserve SO MUCH MORE time.

I can't Get Out of My Own Way

In 11 days I am supposed to marry my best friend.  But I feel like I can't get out of my own way.  I am a fucking mess.  My mind is everywhere but where it should be.  I want to be at the hospital to be there for my friend, but I can't because I have so much shit to do....

I have 2 graduate classes I am taking, my graduate assistanship which requires 10 hours a week of research, and planning for the wedding.

I didn't fall asleep until a little after 3am this morning and then at 3:30 my dog woke me up to go outside.  Then it was almost 4 when I went back to sleep.  P's alarm went off at 6:10 and I sort of woke up....enough to remind him that E doesn't have school today before he went to wake her up (she has an alarm clock but he checks every morning to make sure she is awake).  Then I fell back asleep till he left a little after 7.  Woke up again at 8 and then at 9 when my alarm went off.  I feel like I could sleep all day but my mind won't shut off.

Last night while trying to fall asleep I decided to head over to my friend's blog.  I re-read every single post she had on there.  I don't know if she has a back up copy but I plan on saving them all....I don't want them to be lost if she decides to delete her account one day....it walks you through her life with her hubby who has CF.  The one that I am desperately praying for.  The one that has me in such a mess I can't even think straight....or stop crying.  He's not dead yet...he could pull through.  This last crap shoot could work and he could pull out if this and he could get better and we could all breathe a sigh of relief.

But what happens when he does pull through this?  What's next?  There is still an infection in the lungs that has caused all this in the first place.  Then there is the underlying issue....the cancer.  What about that?  He can't get chemo, and hasn't for almost 2 months, because it is killing his lungs.  Those bright shiny pink lungs that have sustained him for almost 4 years.

God this is just so fucking awful.

IS there more they can do?

When things aren't going well health wise we have a tendency to blame the doctors.  "They could do more."  "How do they not know how to treat this?"  "Why aren't they making things better?"

But in reality, unless you are at a totally incompetent hospital, chances are they ARE doing everything they can.  They really DON'T know how to treat this.  And they CAN'T make things better.

All they can do is try their damnedest to make things turn around but its not their call that is the final one.  Ultimately it is up to the body they are trying to heal.  And maybe, if you believe, up to God.

I ask you all to continue your prayers for my friend.  Things are worse, much worse and we are hoping he can fight this infection and continue on his road to recovery.  But if not, if he finds himself at peace then I pray that he is in no more pain and that we can find peace in that.

Asking for some Love and Prayers

I am not at liberty to post publicly who I need love and prayers for, but he needs them folks.  Lots and lots of them.  They are for a very close friend of mine who is fighting for his life right now.  And when I say fighting, I mean it.  <3 <3 <3

Pain Update and TALANA'S NEW LUNGS

Amazingly and wonderfully the pain went away Sunday morning.  I coughed up what felt like oodles of goo and wham pain was gone!

I shall take it!

Except now I am beck to goo filled but hey no pain so its a win!

Annnnnnnnnnnnnnnnnnnnnnnnnnnnd my bloggy and RL friend DayDee is in surgery RIGHT NOW getting a new set of shiny pink healthy lungs!!

Prayer and good thoughts to both Tally's family and the donors.  Thanks for saying yes to organ donation.


Go Tally!!!!!!!!!!!!!!!!

Bree

Everyone out there in blog land please please please send some prayers and positive thoughts to my friend Bree.  She is not doing well and her family has removed her from life support.  I am sad and upset and angry and everything else that you feel when you know a friend may not be around much longer...

Saying Goodbye to a Friend

I am absolutely heart broken right now.  A friend of mine is slowly taking his last breaths.  His wife has made the choice to remove him from the life sustaining vent and let him be at peace.  I can't imagine how difficult that choice had to be.

Please say prayers, send good vibes and thoughts to Seattle WA, as they transition through this.

Here is her blog.

The TIPS procedure did not go so well.  He was vented afterwards, removed and sent home within a few days. Then the next day was placed back on the vent and has been on it since.  He was waiting to be listed for a liver and double lung transplant.  Unfortunately, he never got the chance.

CG getting new lungs!!

OMG finally!!!!  My friend CG is getting new lungs!  Please pray that these are a definite go and that she will wake up tomorrow and be new lunged out woot!!!!!

Cystic Gal

She Passed

Well I didn't leave this morning to go see my step mom and it turned out to be a good thing.  She passed away early afternoon.  Even if I had left by 7am I wouldn't have made it in time.

She will be missed by all of us.  I feel horrible for my dad.  I can't imagine what he must be going through.  I know he is relieved she is no longer suffering, but to come home to an empty house and know that she will never ever come home....That has got to hurt.

She is now up in heaven with her grand daughter Ashley, who died 2 years ago in an accident.  I know Ashley is looking forward to showing her grandmother around "town".

Please, pray for my family as they embark on this week of mourning and preparations.  I will be heading down when I know the details of the arrangements.

Saying goodbye to my Step-Mom

Well I guess now it is safe to explain why I was asking for prayers for my Step mom.  She has brain, liver, lymph node and breast cancer.  I was informed today that she only has a few days left.  She was admitted to the hospital a few weeks ago and was continuing treatments.  As of today she is stopping all treatments and is just on meds to keep her pain free.  She is totally out of it and doesn't know that anyone is there or where she is.

When I first found out about the brain cancer (most recent) I was kind of blah.  I knew that eventually the cancer would kill her.  But I am the type that unless you tell me so and so has 2 days I won't be upset by it.  Call me mean and cold hearted, I don't care.  It's just how I roll.  So today hearing the news has brought on the water works.  I didn't get to see her last time I was home because she didn't want to see anyone.  So the last time I saw her was in April when Peter and Emily met her.

I want to drive down for a day or two to see everyone, my dad and step family, but I don't know.  She is out of it so she won't know I am there, even though I would like to say good bye.  I just don't know what to do.  The wedding is next weekend so I would have to come back up here to get Peter for that and the funeral.  I have no problem with that at all.  Just don't know if I should.

So again I am asking for prayers, but this time, pray for a painless and easy passing.

Thank You

Mini-vaca time for me, and some other things

I am heading down to good old PA for a few days.  I need to see my niece and nephew and of course my Mom, Dad and the rest of my family and friends.

I am not going to go into much detail here but if any of you are praying people, can you say a prayer for my Step-mom?  She needs prayers as does my dad.  Thanks!


Next Wednesday is my clinic appointment and I know this time she will not let me leave without accepting to go inpatient.  And I am fine with that.  Cipro has done nothing for me, unfortunately.  And being sick week before last just set me back some more.  Especially in the weight department.  I have lost a total of 4-5 pounds now in 2 weeks.  Not good at all.  So I will see if she will be kind enough to let me stay home for 4th of July weekend and then that Monday head in for my stay.  I hope so!  I want to see fireworks from some other place than my hospital room!

Piper's Lungs!!!

Prayers are out for my Cyster Piper!

She went into surgery around 3:30 this morning and is expected to be out around noon time (Eastern Time USA).

I'm so excited I could cry :)

Prayers needed

Please pray for two good friends of mine, Lauren and Ginger.

Both are vented, both have CF.

Both have families and friends that love them very very much and want them around much much longer.

So many prayers needed please!!!!!

7 year old Garran got his call yesterday and was transplanted.  He now has 2 fresh new lungs to breathe!!!!!

Here is his caringbridge site so you can all see what an amazing boy this G-man is!!! 

Please keep him, and his family in your thoughts and prayers so he can continue to do fabulously!!!!

Also, please pray for Officer Chris Jones' family.  I had not blogged about this before.  One of our brave officers here in Middletown was killed Thursday in a traffic accident while he was on duty.  The viewing and funeral are set for Wednesday and Thursday.  He was the first officer for us to loose in the line of duty here in Middletown.