News we've been praying for!

I got a phone call 7:30 Monday evening from my nurse coordinator at Cedars-Sinai. Benito and I were watching tv in bed so I put it on speakerphone and proceeded to hear the best news I've heard in a Long time...
The lung transplant team hired on a new person that has experience working with petitions to unos so she and the team have been working extra hard for the last month to get all my records re sent along with another petition letter to ask that unos make an exception in my unique case so I can be brought up the heart list where I actually have a chance of getting organs instead of waiting at the bottom while my lungs fail. As of Monday evening I'm officially listed on the heart list as a status 1B instead of my previous status 2! What does this mean...
I am told I have approximately 7-10 people waiting ahead of me at Cedars as a status 1A and the majority of people are men who will require larger hearts for their transplants to be successful. I on the other hand can accept a woman's smaller heart or even a man's large heart because of my CF barrel chest. My nurse coordinator told us that my call could potentially come at any time now... It could be tomorrow or January, but it's no longer a question of whether I'll get organs anymore, it's only a question of how soon it will happen. Before hanging up my coordinator told us that he didn't want to say that they had given up on me, but they really did not know how they were going to make sure I got lungs in time. They are really excited about the change as well. Such a great feeling knowing my transplant team cares so much about me and my future.
This new change in listing placement also means that I will still be able to donate my own heart to another Cedars-Sinai patient waiting for their gift of life. As it was, we were looking at me having to wait until my heart inevitably began to fail due to the stress my failing lungs are placing on it then and only then would we be able to attempt to bring me up the heart list. That's all changed now, thank God! It was such a difficult thing to ask God for my heart to begin to fail so I could get lungs... My prayers have been heard and something else came along that made it possible for me to get my transplant while still being able to donate my heart to someone in need. God is GOOD, you all!! Whether you're a believer or not, it's hard to ignore that there has been a higher power at work here...
I lost a very dear friend from high school this last week to a heart attack of all things... I can't help but feel like my friend Andrew was part of helping make the impossible possible. With the help of the amazing team at Cedars-Sinai, my UCD doctors with their persistence in getting Cedars to not give up, and my wonderful friends and family, I've been given HOPE again!! Thank you all SO much for all your prayers, donations to my transplant fund, love, but most of all, thank you for your faith in my ability to persevere through all that I've been up against this last 18 or so months. I get my strength from you and your love and faith in me. Thank you! 
Meanwhile Benito and I are making sure we're going to be ready for that call to come any day now! :-)
Stay tuned!

Happy 8th Breathday to me!

This time 8 years ago I was on my way to San Francisco to undergo a life changing [and do I even have to add "saving"?] transplant. I can't believe it's been 8 years!

I have been reminded lately by quite a few people that I'm a lucky woman... Not too many people have been given a second chance to live like I have. One person in fact actually went as far as to say "8 years is a good run, you should be happy with that", as if I should just be content with the 8 years I've been given and not wish for more. Of course I want more! It's the want for more, the need to keep living that's kept me alive this long and I don't plan on being "happy" with anything less than a full and Long life. I deserve that as much as the next guy, right?

So I had CF clinic today and my doctor talked a little about retransplant. My PFTs were down to 26% a month ago and after 2 bronchs I'm only up to 29%, so he's thinking that I'm not just dealing with the stenosis anymore... He's suspecting that I'm in a slow rejection and it's time to start revamping my "resume" for transplant. What I mean by that is that I need to do all I can to make a transplant center WANT to transplant me. Yes, I'm a very compliant patient already, so no worries there. We need to start babying my kidneys, be one step ahead of any possible skin cancers, etc. Basically I need to make sure everything is as healthy as I can get it so a transplant center won't be worried about the rest of my body having problems after another transplant.

On to better news, shall we?

It's been a little over 4 weeks since we got the keys to our new house! We have been extremely busy every day unpacking, painting, organizing, cleaning, etc. We said goodbye to lazy weekends when we got our offer accepted and haven't had a single lazy weekend since! We're excited to be throwing our first little get-together in our new home this coming weekend. It's going to be a small shindig to celebrate our housewarming, Benito's belated birthday (we didn't have time to do much celebrating with the move), and my Breathday (transplant anniversary). We still have so much to do before we're ready for people to see the house, but hopefully we get it all done before the weekend and with time to spare!

I think that's about it for now. I'm sorry I don't update my blog too often, but I'm sure you can understand why ;)

I hope everyone is doing well and enjoying the beginning of a beautiful autumn!

Whoa! August 1st already?!?

I've come out of my cave! I'm so sorry I haven't written an update in 4 months. I hope you can forgive me!

Let's see...

Since I've last posted, I've been keeping pretty busy and have definitely had my ups and downs with my health. On May 19th I got to lead a team at the Sacramento Great Strides walk! This was my second year leading a team, but this year was so much more fun! For starters I found a wonderful shirt printing business locally that donated their services to print team shirts for all of The Iron Lungs (our team name). This was the first time I've ever been able to provide shirts for my team, so it was so awesome to see all the people walking around wearing our team logo. We had 28 walkers this year on The Iron Lungs, 15 more than the last time we walked (2 yrs ago). I can't tell you how much it warms my heart to see my friends and family (and Benito's co-workers) gather for such a worthy cause. We had a goal set at $3,000 overall for the team, but we surpassed our goal and raised a whopping $4,070.00 making this our most successful year yet! I'm so grateful for all those on my team and can't wait to do it all over again next spring! (See above photo of MOST of our team! The family of my dear friend Kristina Love (whom passed away last fall) walked with us and made up shirts of their own saying "Love for Leah"!

On July 6th I did my last photopheresis treatment! The protocol is a total of 30 treatments and as of July 6th I'm free of the strict schedule of getting my blood tanned ;) My doctor had mentioned a few months ago the possibility of doing some sort of maintenance schedule once my 30 treatments were up, but he has yet to set that up. I'm so extremely grateful that he was willing to try photopheresis on me when nobody else was willing to treat my rejection. I'm now in "remission" and am happy to see my lung function stable again. To clarify, because I get asked a lot how much lung function I've gained back, once someone has chronic rejection (and especially for how long it went untreated in my case) the damaged tissue is no longer viable. I will not get that lost lung function back, no matter how hard I tried, but what photopheresis DID do was STOP the progression of damage done to my lungs by my immune system. I'm currently stable at 33% lung function (fev1) and 10% small airway function (fef25-75). I really couldn't ask for more of a response from the photo treatments.

Now, what most of you don't know is that Benito and I have been looking since late winter for our first home. Over the course of about 5 months we've seen countless houses and even put offers on 6, yes 6 homes! 5 of those offers were not accepted because of different reasons. We waited as patiently as we could and the right home finally came along. The 6th offer was accepted and we've since been doing all the inspections, paperwork, etc. to get into our first home! Our close of escrow is only 2 weeks away and we really couldn't be more excited. I've had the pleasure of meeting the seller and am even more confident that this is the right home for us now that I see how absolutely sweet this woman is. She's doing everything she can to make sure this home is ready for us to move into by fixing all the necessary issues before we even have to request them to be fixed. What a huge weight off our shoulders to know the home is in the best possible condition before we move into it!

So, the home is 1,299 square foot. 4 bedrooms, 2 bathrooms. GREAT covered patio in the backyard that is just begging for us to barbeque under! I just can't wait to move in and make this home OURS. I can't wait to give Roxy (our dog) a backyard to play in! The neighborhood is absolutely wonderful and I even had the opportunity to introduce myself to a few neighbors at a yard sale that was going on the same day I was there for an inspection! I can't wait to have neighbors that I can associate with and even borrow a cup of sugar from when needed ;)

My health is so-so. I'm still having problems with my breathing being too tight and wheezy, and my pain level fluctuates dramatically for no reason I can figure out. I'm just trying to ignore as much of the bad days as I can and focus on the good ones. I've had 3 bronchs since my last update. Although I felt like the brachytherapy treatment that my dr did on me in March made me feel better than I had in a very long time, it did not last as long as my dr had hoped, so he's skeptical to try it again just yet. He mentioned wanting to try and remove the existing stent I have in my right main bronchi that has fallen lower than my stenosis, but he and my CF doctors are hesitant to do that because of the risk of blood loss. That stent has been there for about 4-5 years now and scar tissue has grown all around it, so removing it is now quite a dangerous task that would require the operating room, general anesthesia, and a cardio-thoracic surgeon to perform. I'm not so sure removing the stent and replacing it with another will help my breathing, but I'm curious if it would help my pain because my pain is always in the exact same place, which also happens to be where you can feel the stent "buzzing" when I breathe. I don't think that is as coincidental as my doctors want to believe. I'm pretty sure the pain I feel has a lot to do with the stent and am considering having the stent removed purely for that reason. We'll see though... The possibility of having to have an emergency lobectomy because of tearing during removal scares me enough to really think about how necessary it is.

So that's that. Nothing else really new going on. I hope everyone is having a wonderful summer!!

Hugs & stuff :D

Grieving

Good afternoon! I hope you all had a great holiday spent with the ones you love most in life. Benito and I had a great Christmas in Reno with his mom and step-dad. It snowed Christmas night and the next day, so we got to have the white Christmas we were hoping for. Unfortunately we had to drive home the day after Christmas while it was snowing and were very grateful for deciding to rent a 4 wheel drive truck for the trip! Our New Year's eve was spent at home with a few friends. Benito barbecued burgers on his new BBQ his mom had gotten him for Christmas. We all enjoyed margaritas and played the Wii up until the 1min countdown to the new year. Once we got our fix of Dick Clark we fired the Wii back up for more Wii Resort gaming! Benito and I had a Great time and stayed up well past 3am laughing along with our friends. I had another birthday in between Christmas and New Years, but we didn't do much at all. Benito and I just stayed home and watched movies together. I am very grateful for every birthday I'm given. God knows I never thought I would ever see 28 years old!

That being said, I guess it's time to move onto more dreary topics that need to be addressed.

Two days ago (Monday) I had CF clinic. Lucky for me, Benito took the day off and was able to come along with me for support... We had no idea just how much I would need that support until we actually saw my doctor. After blowing into the machine to measure my pft's (lung function test) my numbers were at an all time low since pre-transplant at 32%. We tried using my inhaler to see if the low number was just because I was a little tight. Post inhaler my pfts only got up to 35%, still an all time low since pre-tx. I had lost 4-5% lung function in just 2 1/2 months, which is extremely alarming, especially since in that 2 1/2 months I was on antibiotics for about 6 weeks trying to help my lung function.

So after the respiratory therapist left with the results and showed them to my CF doctor, my doctor came in with a grim look on his face. He began to ask me how I was feeling and did a physical exam, listening to my lungs very carefully until I was dizzy from deep breathing. He said my lungs sound very noisy on Both sides, not just the right side like usual. He said he can hear air flowing very loudly, which suggests that there is a lot of narrowing in my airways and my lungs are working very hard to move air throughout my lungs. I told him that I've started to get so out of breath at times that I'll go from dizzy to everything getting dark in a matter of seconds (imagine a dimmer switch on a light and the light going from bright to almost off). My oxygen saturation is still very good while at rest when checked at clinic, but who knows what happens when I get extremely short of breath.

My doctor basically went on to tell me as gently as he could that I shouldn't expect to get better, only worse from here on out. He told me I could live the way I am now for years, but we both know that the rate in which I'm losing lung function that isn't very likely. He is going to speak to the doctor there at UC Davis who evaluated me for my 1st transplant and see if he can find me a place to be evaluated at for a second transplant. I need to come to realization that as much as I don't feel ready, it's time to get back on the list and pray that a set of lungs become available in time. My CF doctor assured me that I'm a great candidate for a second transplant, but that I need to be aware that a second transplant is much riskier than the first one. Why? Because the surgery itself will take much longer because of the scar tissue that has grown and is now holding my donor lungs against my chest wall. The longer I have to be under anesthesia, the more dangerous, plus the surgeon has to be very careful while separating my donor lungs from the chest wall so not to lose too much blood. I have managed to keep my weight up along with my "positive" attitude (all things considered) and my compliancy in the past with keeping up with medication and doctor visits, so I'm a good candidate for a second transplant. Of course this is only half of it... I'll need to "pass" all my evaluation testing on my heart, kidneys, etc. before being considered for a re-transplant. And of course there is the issue of finding a center to do it. I just found out that the amazing surgeon that did my first transplant has moved on to a different hospital (in Connecticut), so the man I feel like I can trust with my life is no longer available to perform my next life threatening surgery. *sigh*

My CF doctor spent a long time in my clinic room talking to Benito and I about what to expect and what I should be doing. At one point I couldn't hold back the tears any longer and broke down. I know he wasn't intending it to, but the way he was talking to me, it sounded like I was getting a "quality of life" speech. You know the kind... Go home and do what makes you happy while you still can. He assured me that he wasn't giving me a "hospice" speech, but he really wants me to think about what's important to me right now. He wants me to understand that I will not [no matter how hard I worked] be able to get the lost lung function back and that I should let myself grieve for that loss.

The thing is that I'm not only grieving for that loss, but what that loss has taken away from me. Benito and I are supposed to be planning a wedding right now, but instead we're having to plan on a transplant that could very well take me away from him forever. I've wanted for as long as I can remember to be a mother and up until Monday, I had hopes of accomplishing that dream some day. If I can't get better, how can I carry, then care for a baby? Is it so wrong for me to want a normal life with the man I love? I feel like I've worked so damn hard for so damn long and now I'm supposed to start all over again?

I hate to say it, but it was almost easier the first time around. With my CF lungs, I had 21 years to get used to the idea of getting sicker. I was at 80% only 3 years ago with the whole world in front of me. In 3 years I've gotten this sick and I don't feel like it's been enough time to get used to the idea of needing another transplant. With my CF lungs I had things I could do to help improve my lung function and how I felt. I could do a "tune-up" of IV antibiotics that would make me feel a little bit better after 2-3 weeks. I did pulmonary rehab and saw a huge difference in how I felt and my lung function improved. Now I'm told that nothing is going to improve my lung function again. Pulmonary rehab won't even help, but "being active will help your mood". *sigh*

I emailed my academic advisor and explained what's going on. It's been a year since I've been able to complete a class, so I told her that I'm going to stop school for now and maybe once I'm recovered from my next transplant I'll start back up again. It just seemed like it was one stress that I could avoid, so it needed to go. It didn't seem logical to keep trying to take classes when I'm just getting sicker and am already having trouble being able to finish even one class at a time. She was very encouraging and said that if any point before October I wanted to start back up, I will have my scholarship waiting for me. She even said that if it took longer than October, she may be able to pull some strings with the director and see if I could re-enroll and pick my scholarship back up then.

So, that's it. As you can imagine, my mind is going a million miles an hour right now. I'm sorry if any of this blog update sounded confusing. It's how my brain is functioning right now, so it's hard to make much sense out of anything in my head right now. I came home on Monday and went directly to bed at 6pm and I'm just now starting to feel like I can get out of bed again. Whenever I wasn't sleeping yesterday I was crying, so sleeping was my choice activity. I'm still feeling pretty weak hearted, but I don't want Benito to come home from work a second day to me being in my pajamas still and barely awake. I need to be strong for him; I know he can't keep holding us both up all by himself.

I'd really appreciate any prayers you can offer up to us right now. We need another miracle.

This and That

First of all, I want to apologize to my readers for not posting an update in so long. I know a few of you have been worried about me since it seemed I'd gone MIA for such a long time.

I'm doing okay. I could feel a lot better, but then again I could definitely feel a lot worse, so I'm grateful for that.

Not a lot has changed since I've last updated. I'm still not sure I even have a transplant doctor since my CF docs have had no luck getting in touch with my original transplant doctor regarding my care. How does this make me feel you ask? Nervous, disappointed, scared, uncertain, extra cautious and most of all I feel like I'm in limbo. I don't know what my future holds in terms of my transplant care. I am being more cautious than I normally would to avoiding getting sick because I don't want getting sick with a cold or flu to speed up my rejection (an increase of white blood cells in my body from being sick will work against me, making it easier for my body to reject my donor lungs). I've been staying home as much as possible and avoiding crowded stores at all costs. Thank goodness for Amazon.com or I wouldn't have been able to get any Christmas shopping done! My personal plan is to really make myself irritating and loud toward my doctors. The squeakie wheel gets the attention, right? I'm going to be a squeakie wheel all right!! I'm SO tired of feeling like this. I can hardly do any kind of physical activity without taking at least a break half way through it. I was putting clean sheets on a blow-up mattress the other day because my father in-law was coming to stay the night and I barely got the fitted sheet on before I couldn't catch my breath. It took me an hour and a half just to put sheets on that bed; that is absolutely Crazy! I feel like I've worked SO hard to feel well and although I've always done Exactly what I've been told to do in terms of my health care, I didn't do enough because here I am sleeping with a lot of pillows again, up half the night feeling short of breath, and planning my days around small windows in which I feel a little closer to normal.

This post is starting to sound like a pity party, but I don't want it to, so I'm going to go onto other news! ;)

Benito and I drove to Santa Rosa on the 11th and picked up my niece and nephew so they can stay with us while my sister and her boyfriend got everything packed up and moved back to Yuba City. We had the kids (8 & 6 years old) for a week and let me tell you, although the kids were good during their stay with uncle Benito and auntie Leah, I was Exhausted after that week was up! It's tough keeping kids that age cooped up in the house during a very rainy week. They watched countless movies (thank goodness for Netflix's "Watch Now" feature!), played Wii, picked out and decorated the Christmas tree, made Christmas ornaments for said tree, and made a trip to the library. We had a great time together. Benito and I had missed them so much while they were living in Santa Rosa for the past 9 months; we're just so happy to have them living across town again!

We'll be spending a white Christmas in Reno with Benito's mom, step-dad, and 5 year old retired greyhound. Roxy will have her "aunt" to play with for a few days while Benito and I will enjoy a nice weekend with family cozied up by the fireplace. We spent Thanksgiving with my family, so Christmas was saved for spending with Benito's. Juggling families is going to be a difficult task to learn, but luckily neither of our families make us feel guilty when we can't spending a specific holiday with them. We're both very fortunate to not only get-along, but to love each other's family, so we're always happy to plan a visit with either one.

No big plans for the wedding yet. My maid of honor and I will be going to our first bridal expo in January, so I'm hoping to get a lot of helpful ideas and freebies or coupons to help with the wedding. Benito and I are hoping to either get married this next October or October of 2012. It's going to all depend on my health insurance and if we've found a way to make sure I'm as covered as I am now as a single woman. I absolutely Hate dealing with health insurance.

So that's about it. I hope everyone is doing well and is enjoying their holidays. Don't forget to glob on the hand sanitizer while out shopping!!

Merry Christmas and have a safe and happy New Year!!

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.

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 :)

Let's get this figured out!

I had CF clinic yesterday at UC Davis and discussed the possibility of transferring my transplant care over to a different hospital than UCSF. Once I mentioned my concerns to my social worker, she went and talked to my doctors. Both of my doctors came in together and pulled up x-rays, culture/biopsy results, and a graph of the past 2 years worth of PFTs (pulmonary function tests). The graph showed exactly what I've been trying to tell them (and UCSF) for the past 2 years... A very steady, scary decline from 80% down to 38%. Unfortunately whenever I would point out a decline in clinic, they would just compare it to the previous visit, missing the full picture. When looking at the 2 yr graph, it's hard to ignore the alarming decline of lung function. The problem is, nothing is giving us a hard answer as to what is causing my lungs to be declining so much. Of course biopsies only show rejection of the large airways (acute rejection), which leaves a possibility of rejection of the small airways (chronic rejection).
So my docs want to admit me for a week starting July 5th to run some extensive testing to rule out some things, while trying to figure out exactly what's going on. If I understand correctly, if absolutely everything else is ruled out, they are going to assume it's chronic rejection and hopefully treat me accordingly.
I asked them if they felt the are capable of treating me if it is rejection and they said they are and that they have experience with it, so I'm willing to give them a few months to figure out what's going on and start treating me. If I don't see any signs of improvement in that time, I'm going to look into transferring my transplant care to Stanford hospital. I really trust and respect my CF doctors and want to believe they can be my sole physicians for both CF AND transplant, but my only concern is their experience working with transplant rejection and their knowledge of the newest treatments.
I should have access to the internet (although limited) while I'm in the hospital, so I'll try and update as I can.