Thursday, December 20, 2012

Transplant and Cysts

This morning I heard from the transplant clinic.  I was not presented last week, but was this morning.  The results are what was expected.  I am too healthy to be listed right now.  Fine by me as I am not even 100% sure I WANT a transplant.  So this means that I go into clinic every 4-6 months to get looked over.  Any issues I encounter, any hospitalizations, any set backs, I need to let them know so they can add it to my file.

Today I also had my GI follow up to the colonoscopy and endoscopic ultrasound back in November.  Mostly good news. :)  OK actually its all relatively good news lol.  The 9 polyps removed from my colon were benign adenomas - cancer polyps IF left untreated for many MANY years.  She said there were 4 on the left side and 5 on the upper right side and that sides don't really matter as far as developing cancer.  But 9 is a lot especially for only being 18 months since my last one.  I was told I NEED to come back every 12 months at the most.  Looks like every Oct/Nov I get to clean my gut out.....yaaaaaay.....

The pancreatic cyst is still concerning to the docs.  I had thought it went from 1.5cm to 2.2 cms, but it was 1.2cms to 2.2 cms.  She said if I was JUST CF I would be told to have it checked every 1-2 years.  But since Lynch Syndrome can also affect the pancreas they are slightly worried it almost doubled in size in less than a year.  So while I am inpatient in Jan they are going to do an MRI with sedation (I can not do them because I have anxiety issues and they NEED one done so they are knocking me out lol) to get a better look at it.  She said they wanted to get a biopsy but its in an awkward spot.  The GI doc who did the tests is one of the best at Dana Farber and she couldn't get it so they need to go with the MRI and possibly surgery for a biopsy.  So after the MRI I am meeting with a pancreatic surgeon to, as she put it, cover my bases like with the transplant evaluation, I don't need it quite yet, but just in case.  Not overly concerning issues, but still issues that need to be followed up on.

There ya have it.  I am cancer safe for now, and hopefully after follow up tests I will remain so....

Monday, December 17, 2012

Another Soul Gone Too Soon

It hurts....

It hurts so fucking much.

Rhi is gone.  She passed away this afternoon.  She never got the transplant she desperately needed and wanted.  She never got to be the lawyer she wanted to be.  

How do you come to terms with the death of a friend or a family member?  And one that has the SAME DISEASE that will kill you someday?  

Its hard enough to watch a friend pass away.  Its hard to see your brother in law take his last breath.  But its even harder to watch when you know they are dying from the same disease that you have.  Its rough to say the least.  

Breathe easy Rhi, and Shawn, and all those that have gone before you.  It doesn't seem real. They all seem like a dream, like a joke.  But they are sadly true.  I hope life is better on the other side and you are tearing shit up with all those friends whom meet you at the gates.

Love you all.....

Saturday, December 15, 2012

Happy...and Sad

So very sad

A good friend of mine.  The one I posted about needing a transplant like yesterday, well she is not well at all.  Her heart is failing along with her lungs and they have told her husband she needs new lungs in the next 12 hours or there is nothing more they can do for her.

We are all hoping and praying for a Christmas miracle to come in the form of some new lungs and maybe even a new heart if they think that will help.

On the happy front, a fellow CF blogger Jess received her new life a few days ago in the form of new lungs! So excited and happy for her!

What does this all mean???


When you die, you don't need them anymore.  Why not be someone's hero and save their life?  Why not donate them to someone who needs a few more years with their loved ones?

PLEASE sign up to be a donor!  Click this link if you are in the US and register.  And tell your family members too.  They are the ones who have to sign the papers when you are gone / almost gone.

Thursday, December 13, 2012

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.

Wednesday, December 5, 2012

I need to have Patience and Faith...

I have some friends on Facebook that are old coworkers.  These are people I spent 40-50+ hours a week with prior to my health taking a dive and having to quit.  I enjoy reading up on their lives and seeing what they are up to now.

But at the same time I hate seeing how they are progressing in their careers and life and I am sitting here, idle, waiting for my chance to excel again.  And knowing that there is a chance that I may never work or accomplish my dreams ever again.

I miss the working life so much.  Some days I want to delete these people from my friends list so I don't have to see the advancements they are making, or the babies they are having.

But why should I do that?  And its not them, it really is ME.  I need to just get over my life and remember that each person is different and each person lives life differently.  This life is what is destined for me and no matter what, I can not change it.  I can't change the fact that I will NEVER have a baby of my own.  Or that I can't work full time right now because of my health.  I could work, I could spend every free second I have making sure my health stays stable, and I could miss out on my family.  Or I could continue on this path and have patience that one day I WILL go back to work, and that I WILL be amazing, and I WILL do all that I have always wanted to do.

I need to have patience and faith.....

Tuesday, December 4, 2012

Avoided Hospital...For Now

Today was clinic again.  Just to check and see if I responded to the Levofloxicin I was on for 14 days.  And surprise!  I didn't really.  I went from 1.09L to 1.14L.  So yes I did go UP but not much.

Dr D gave me sole say in hospitalizing me now or waiting until after the new year.  I opted for January 2nd.  I missed way too much school with the honeymoon and wedding to miss the last couple classes.  Plus we need to schedule the port placement, and if that can't be done immediately then we are looking at me being on IVs at Christmas and then not being able to go to PA to visit my family after.  So it is much easier to wait a month.  If something were to happen and I needed to go in now, I would call her.  But for now I am IV free for a little less than a month!!

Sunday, December 2, 2012


Oh the Holidays.  A great time of year to spend with family and friends.  I feel so blessed to have such a great family, new and old.

But with the happiness comes the sadness.  And this time I don't mean Shawn.

I mean babies.  Yes AGAIN with the babies.  Holidays mean cards and pictures of moms and dads with their new babies and their old babies.  And while I have two step children now, I don't FEEL like a mom.  I don't have that connection with them that biological moms get.  I want that feeling and I will never get it.  It makes me sad.

So I need to suck it up, enjoy the time with the step kids and stop dwelling on the not's.  My life is great.  My life is full.  My life is alive.