Friday, July 23, 2010

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!


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

Monday, July 12, 2010

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 :)

Friday, July 9, 2010

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!

Tuesday, July 6, 2010

An update from behind bars *cough* I mean the "hospital"

Going to make this quick since I don't have a whole lot to report just yet.

I was admitted last night (around 7:30pm) and after a one night with very little sleep I've had an x-ray and a CT done. The CT was supposed to be done with contrast, but the resident doc didn't order it right (although I spent the entire night hooked up to iv fluids to flush my kidneys and given oral Mucomyst to "protect them"). So, after a CT without contrast one of my cf docs came in and talked with me about his thoughts so far.
He said my CT shows no signs of any serious infections going on, but there is inflammation in my small airways, which is a sign of chronic rejection. My stenosis (narrowing in my right main airway) is closed down to a tiny 3mm when they say it should be 2 inches, so I'm going to be scheduled either tomorrow or Thursday morning for a bronch with dilation to open that airway so I can get a little relief for the time being. After my bronch he wants to talk with either my transplant center or a doctor here at UCD that used to work along with the lung transplant team when they used to have one (long story short, the lung transplant surgeon turned out to be nuts, so they had to shut down their tx center years ago). This doctor my cf doc is referring to (a pulmonary specialist) is the man who was in charge of originally working me up for transplant over 6 years ago, so I have met him and look forward to hearing his thoughts.
I asked my cf doc, besides the obvious low immune system when being treated for rejection, what the cons would be to just start treating me NOW like I have rejection. He said it's the bad impact on my kidneys that is holding him back. My kidneys aren't great, like most people this far out from transplant, my kidneys are sensitive to medication and very weak when pushed. I personally feel that since it's pretty likely that most transplant people would eventually need a kidney transplant down the road at some point, why not treat the rejection now and deal with the kidney troubles later, when I can breathe again. What shocked me was that my cf doc said that once my pfts drop lower, I would be a great candidate for a 2nd lung transplant. I don't want to wait for that to happen; I don't want that to be my goal here. I'm very much NOT okay with allowing myself to keep declining so I can get another lung transplant. There is no question that if I had to make that decision again, I would do it in a heartbeat, but I do not want to go down that road unless absolutely necessary. I'm pretty sure I'm thinking too much into what he casually said, but I was just shocked to hear him say that was an option.
As far as the stent goes, it's lodged itself below where it initially was placed in order to hold open the stenosis I have, so it's causing a lot of irritation and possibly could be the root to the side pain I've been having for so long. He said he wants to look into removing it for good, or quite possibly replacing it, but because it's been there so long it's got a lot of scar tissue grown on and around it, basically making it a part of my body and making it difficult to remove without complication. He would have to most likely have it done by a surgeon in the OR, and the risks could be anywhere from bleeding to having my lung rip when removing it, causing them to have to do an emergency lung-ectomy (removal of that entire right lung). Needless to say, my eyes got huge when he said that. Ummm I think I'll pass, but thanks anyway! lol!
So for now, I wait until I get my bronch then I wait to hear what my doctor has discussed with the other doctors and then hopefully a plan. I need a plan. I'm to the point where I'm feeling like I have my old cf lungs back and it's both frustrating and scary.

I know I said this would be short, sorry! I'll update again after I know more. Thanks to everyone for their well wishes, prayers, and kind words. I really appreciate all the support I get from you all.

Leah's GoFundMe Transplant Fundraising Page