We're Engaged!!!

Benito and I are engaged!!

We spent a few days on the Mendocino coast to celebrate our 2 year anniversary and while there, Benito proposed!

It was the second night at the cottage we rented... After a beautiful day spent at the Botanical Gardens in Fort Bragg, Benito and I headed back to the cottage to barbeque and relax in the hot tub. While eating dinner and watching the beautiful sun set against the ocean, Benito stands up and says "I guess this is a good time". I thought nothing of it, but when he came back to the table he was kneeling on the floor instead of sitting across from me at the table. I was very much not expecting him to propose, so my reaction was me wondering what he dropped and why is he on the floor? Then he opened the ring box and I realized what was actually happening. After a lot of "I love you"s and him asking if I would marry him, I of course said YES! We spent the rest of the night in the hot tub drinking wine we saved from last year's anniversary and talking about how Benito managed to pull off this huge surprise without me even suspecting.

I can not imagine spending my life with anyone but Benito. I am told that Benito is the lucky one, but really it's me who lucked out. I know it's not easy living with me and never knowing whether today is going to be a good or bad day in terms of my health. Benito knows my bad days and wants to be with me during all of them. He's extremely supportive and does whatever he possibly can to make my life easier. I love him more than anything (even more than chocolate, which, if you know me, is a lot!) and can not wait to be his wife!

As far as the wedding goes, we're hoping for a nice outdoor fall wedding either next fall or even the year after that. Unfortunately we have a lot of red tape to get through in terms of my health insurance before we can make things official, so we're not in a huge hurry (although I can't wait to begin our married lives together).

Here are a few pictures of our stay on the coast and the beginning of our engagement, but you can see all of our pictures on my Picasa album at:
http://picasaweb.google.com/leah92504/FortBraggEngagement#

A very long update

I know, it's been a long time since you've heard from me and I'm very sorry. I owe part of my absence to the fact that I don't get on my laptop quite as much as I used to now that I have a smart phone and partly because there has been so much to update that I don't even know where to begin. I'm currently sitting in bed hooked up to an IV drop of Meropenem (antibiotic) for the next hour, so I thought I would take advantage of this time and begin an update to you all. Please bare with me because this may seem a little sporadic.

Last I updated I had started an increase of my immunosuppressant medication in hopes to slow down and/or stop the progression of the chronic rejection. Since then my CF doctors have had me increase one of my immunosuppressant drugs a few more times to get it to the level they want it in my blood. Meanwhile my pft's (pulmonary function tests) are still slowly declining. About 6 weeks ago the decision was made that my CF doctors have exhausted all of their resources and are out of ideas on what do do for me now, so we decided it was time to send my information to Stanford hospital's lung transplant team and try to get transferred there. Unfortunately I found out this past Monday that Stanford is not currently taking any new patients who have already had a transplant because they are having "bad luck" re-transplanting patients who have gotten their first transplant at a different hospital. Needless to say, that news was very hard to swallow. I had put all of my eggs in that one basket and it didn't work out. For the time being, I don't know what I'm going to do. I have not been to my transplant center (UCSF) in a year and would rather not have to deal with them at all, but I may be forced to now. I can not speak for everyone, but my own experience with UCSF has been very poor post transplant (they were GREAT to me pre transplant though). For the past 6 years I have had to go get my own blood work results and call THEM if I saw anything out of the ordinary instead of them calling me; I don't know about you, but I don't think it's the patients responsibility to track their tests in place of the medical professionals. I learned very quickly how to read my lab read-outs! The "last straw" was when I was very sick (running a fever, extremely weak and coughing a lot) at home and I called them at 10am and left a message on my nurse's voicemail for her to please call me back asap because I was sick and needed to know what I should do. She finally called me back at 6pm and was absolutely NO help. She basically told me it was stupid to call them and that I should just go find a doctor to see me. Okay, go to an E.R... Anyone who has CF and has had a dbl lung transplant can probably agree that when we go to an ER we are seen by doctors who are afraid to touch us because they have read that we're post transplant. They don't want to do anything w/out "My MDs approval". So, I ask my nurse if I can have the ER doctor call them and she told me "They're doctors, they can take care of you. We don't need to be called". Well, I took that as they don't want to be bothered, like always, so I have not bothered them since. Luckily my CF doctors arranged for me to be directly admitted into their hospital and diagnosed me with pneumonia; something my lung transplant center should very much care about. So since that point on I was working along with my CF center to fully treat me and I would be fine sticking with just them if it weren't for the chronic rejection that they don't know how to treat.

I quit my job that I'd had for the past year because I need to be able to rest when I need to and not have to worry about calling in sick more and more often because my breathing keeps getting worse. So for now I'm a full time home-body again. Benito has been extremely supportive and it was just as much his decision as it was mine to quit my job. He was very worried about how well I was taking care of myself while working so much. I may try and see if I can find an extremely part-time job in the future to help me occupy my time and get me out of the house every-so-often. Roxy (our 1yr old lab mix) is very happy to have mom home all the time! She's been so much better about destroying our valuables now that I'm able to spend so much time with her.

On a much happier note, Benito and I will be celebrating our 2 year anniversary tomorrow! Time has really flown by! I go to bed every night thinking that I couldn't possibly love that man any more, but wake up every morning finding out that I can and I do. We're planning a little getaway on the Mendocino coast later this month to celebrate and de-stress! The place we'll be renting is right on the ocean with huge sliding glass doors in the bedroom with a gorgeous view of the waves from the bed! I can't ask for a more relaxing and wonderful getaway with my love. :)

So that's all for now. I'll write again when there is more to share. Sorry about the length of this post... It really has been a while since I've updated and I had some people asking about Stanford, so it was time to share the news, even if it wasn't the best news to share.

The Spoon Theory

The Spoon Theory was made up by a woman named Christine Miserandino whom has Lupus, an autoimmune disease that is very difficult to live with. She was asked how it felt to be sick and the Spoon Theory was born.
This article explains how it is to live every day with an illness. It explains better than I can put into my own words how I feel every day of my life. If you've ever been curious how it feels to be me, read this and you'll get an idea.

Lots of Love!

-Leah

(cut & paste the below link into your web browser to view)

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino

A plan of sorts

So some of you may know, I was discharged from UCD on Friday night. All the tests that my CF docs wanted to do had been done, so keeping me in there while waiting for results just adds to the risk of me picking up some extra infection that I really don't need right now.
Before discharge I did a 2nd set of PFTs (pulmonary function tests) to compare to the ones done before my bronch where they dilated open my right airway. Pre bronch my PFTs were 37%, post bronch 41%, which we are going to now consider my baseline. Not a whole lot of improvement, but I'll take whatever I can get!
I talked to both of my CF doctors seperately on discharge day about what their thoughts are and what they think we should do. Basically they both agree we're looking at chronic rejection and they want to first increase the medication I'm currently taking for immunosuppression and see if that stops the progression of rejection. If that does not work, they think I should be sent to Stanford for an evaluation with them to see what they think I should do.
Some of you may or may not know that with chronic rejection, the damage done cannot be reversed, but we can only hope to stop the progression of further damage. I have never been in either acute nor chronic rejection since my transplant, so this is all new water for me. One of my doctors brought in a 10 page article for me to read about chronic rejection and all the available treatments (along with their risks). I began reading it while waiting to be discharged and got about 2 paragraphs down where I read that the "median survival after onset is 3-4 years". I stopped reading at that point and will pick it back up when I don't feel quite so overwhelmed.
Since I've been home I've been having a very hard time breathing and dealing with very sharp pain in my sides. While at the grocery store yesterday with Benito my side pain got so bad it knocked the wind out of me and I couldn't move for a few minutes.
Today I stayed in bed as long as I could, sleeping on and off until 2pm hoping that maybe some extra rest is what I need (I sure dind't get any rest in the hospital!). I need to get a hold of my academic advisor about retaking the class I'm currently in at another time because my instructor of this class is not being very understanding about assignments being turned in a little late. I'm also worried about work. I don't want to quit because I love getting out of the house and getting a paycheck, but I don't know how long I'll be able to keep everything going. I think I'm even beginning to get a little bummed out about everything, which doesn't help anything.
A plus is that I have great support from Benito and my family, so I never feel like I'm dealing with all this on my own. Even Roxy helps by snuggling with me when I don't feel good and Benito is busy at work. :)

So for now I go along with the increased immunosuppressant meds I've been taking and wait to go to clinic on the 26th. In the meantime my CF docs are going to discuss my case with a few other doctors including a kidney transplant doctor about what to do for rejection that isn't too hard on the kidneys. So my next blog may not be until after the appointment on the 26th when I should have more to share.

On a much happier note, my mom's birthday is tomorrow and she's coming here so we can go out and get a pedicure and go out to lunch! :D

Take care everyone! Lots of love and thanks for the prayers :)

Homeward bound

I've been given the green light to be able to go home! I've done all the testing they felt necessary and will be going home once my other half is off work and can come pick me up.
I'll update in the next few days about what the doctors are thinking and what the plan is so far.

Thanks again to everyone for their support!