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!

Cedars-Sinai consult update

First of all, I wanted to let you know that I'm trying to figure out a way to upload the Bronch video to show those of you who are interested in watching it. I tried uploading it to YouTube, but it told me after the 20min long upload that the video couldn't be published. If anyone has a suggestion for a better place to upload a 5 minute long iOS video I would be forever in your debt. Thanks! Now, on to our previously scheduled program:

I owe a much anticipated update about my Cedars Sinai appointment to you all... This is going to be long and may be hard to understand, so please let me know if you have questions after you've read through it.

My amazing friend Michael Adams, whom I met 11-12 years ago on a CF forum, has been speaking on my behalf to the lung transplant team at Cedars Sinai (where he got his double lung transplant 12 years ago). When I found out that UCLA was not willing to meet with me after seeing my bronch video which shows the extent of the stenosis issue I am struggling with, I was devastated. I had already been told by all the other lung transplant hospitals in CA that they were not willing to see me for different reasons, but "you're too high risk" was becoming a very familiar answer. The one hospital that didn't dismiss me immediately was Cedars, but when their financial department called me to discuss insurance coverage before scheduling a consult appointment I was told they do not accept Medi-Cal (a government assistance insurance coverage that I've had all my life). At that point I didn't see how I would be able to even see what Cedars' transplant doctors thought about my high risk issue because I couldn't be seen simply because of my insurance. Insert my friend Mike and his ever insistent love for Cedars and his friends. He began speaking to his transplant coordinator, doctor, and even surgeon there at Cedars whenever he saw them, or emailed them on a regular basis telling them that he had this friend who has been turned down everywhere else and he just KNEW Cedars would do whatever they could to help me, only my insurance was an issue. So one day Mike sends me a text message and says that Cedars wants to see the bronch video I'd sent to UCLA. I could send the video and have them review it without actually having to be seen there first. Then I got sick with the CMV infection and ended up in the hospital before Christmas...

   After I was discharged, Christmas and New Years passed, and things began to settle down, Benito copied my bronch disc and I put it in the mail to one of Cedars' lung transplant coordinators. I got a call from the coordinator only a few days later! He said that the whole team watched my bronch video and they feel like they can help me and that they've found a way for me to come in for a consult via pulmonary consult rather than a transplant consult because basically all of their departments contract with MediCal except their lung transplant program. So the plan was that I'd gather the list of medical records they want me to bring in with me, when I had all the records with me, I would call to schedule an appointment. 

I was able to get scheduled quickly for the full set of pulmonary function tests and 6 minute walk that they required I bring recent results of, then after those tests I walked over to my doctor's offices there in the hospital and was able to pick up a manila envelope full of all the other records Cedars had requested. That afternoon I called and told the transplant coordinator at Cedars that I had all the records they requested and I was ready to schedule the appointment! So they put me on the schedule for March 19th. I let my friend Mike know the date of my appointment because he had told me a few times already that he really wanted to be there at the clinic to support me when I got to meet with them.

So Benito and I left early in the morning (this last Thursday, March 19th) for our 7 hour drive to Beverly Hills, full of anxiety and excitement for this very important appointment that could quite possibly change our lives. We got to the clinic with maybe a half hour to spare (we gave ourselves 8hrs for a 6hr trip, but stopping for food and gas took quite a bit chunk of time!). My friend Mike met us once we got out of the elevator there at the clinic and he looked just as nervous and excited as we felt. So Mike points me in the right direction to sign in, introduces us to a friend of his that works there that had an amazing story about her father becoming a famed artist. Honestly, being able to listen to her story was a nice opportunity to breathe and take my mind off of my nerves for a few minutes. Before long my name was called and they took Benito and I back to get my vitals and put us in a room. A doctor (fellow) came in and talked to us about the history of treatment and intervention that's been done to my stenosis issue. He listened to my heart and lungs, then we discussed a little about the hurdles I've had with trying to look for a center for retransplant. Then he took my folder full of records and said he'd be back with Dr Chaux (the director of the lung transplant program there at Cedars). After a few minutes Mike walked in and sat with us until Dr. Chaux came in.

Dr Chaux introduced himself and said that he was able to look through my records as well as seeing the bronch video weeks prior. After reading the bronch notes that my doctor at UCD had written, Dr Chaux does not think that there is anything that Cedars can do as far as helping with my stenosis issue. He said that my doctor is already doing everything that he would do, so there's no point in coming all the way to LA to get bronched every three weeks when my doctor at UCD is able to keep doing them for me. So I asked him about retransplant... Did he think there was a way to get a second double lung transplant? Like I'd been told plenty of times before, my stenosis has gotten so bad that it does not leave enough space at all on my native airway to attach a right lung. (I'll attempt to attach a photo or a link to a video of the bronch so those of you who are curious and not grossed out by blood can see exactly what I'm talking about when I say there is no room.) I asked him if a single left lung transplant would be possible and he said that yes, I could get the left lung, but I would still have the problem with my right airway shutting down, causing the right lung to collapse and get pneumonia. That would put my immune system into overdrive, which could very well cause me to reject the left lung very quickly. So really it's not an option. As far as I knew, those were the only options out there and after he explained how each one of those options won't work, Benito and I were sure we had made the trip for nothing...

Then Dr. Chaux threw us a curveball and said that there is one more option for me and he would be willing to try and make it work... He wants to try and list me for a double lung and domino heart transplant. Basically, in order to attach a new set of lungs to me, it needs to still be attached to the heart, giving the surgeon more room to attach the heart and lungs in one piece onto my trachea, rather than attaching one lung at a time to the right and left main bronchi like a typical double lung transplant is performed. My heart is healthy (as far as we know anyway), so when I get a call for the heart/double lung transplant I'll be able to donate my own healthy heart to someone who is on the waiting list for a heart. Crazy, right?!? To be honest, as soon as Dr Chaux said I could be a donor at the same time I'm receiving my own transplant, I just knew that I wanted to do it. Being able to donate my heart to someone in need takes a lot of the scary out of a retransplant. Given the chance to give back and giving someone the chance to live again like I was given (and will be given again), I'm just so happy to be able to do it. This domino heart transplant bit is rare, but has been done before at a few hospitals throughout the country (per the research I've been doing on my own online). Dr Chaux admitted that he has not yet done this type of transplant at Cedars, but assured me that it HAS been done successfully at other transplant centers and he would be happy to give me a chance at it, especially since he can't offer me any other options there Cedars. 

So, whenever the heart is involved in a multiple organ transplant, say someone needs a liver or lungs very badly, and their heart is only beginning to fail, the patient would be listed as on the heart transplant waiting list, their second organ not taking priority because the heart Always takes priority. That being said, even though my heart is healthy, I will be listed on the heart waiting list and the fact that my heart is healthy puts me as a tier 2, very low priority. There is no other way to list me with my lungs being priority. Dr Chaux said my small size gives me an advantage because there are not as many smaller stature patients waiting for hearts as their are larger stature people. I also have a very common blood type, so that's in my favor. Dr Chaux expects me to be on the waiting list for "a year, give or take". Of course that does not mean that I could not get a call for transplant the day after I'm officially listed, if everything lined up just perfectly, or, I could be waiting much longer than a year... It's very hard to tell. What is very important to understand is that my lungs could ultimately fail me while I'm waiting for a call saying they have a heart and double lung donor for me. That's something I have to come to accept, but fight hard to stay as healthy as I can so I am still here to receive this amazing transplant and donate my own heart when the time comes. A very interesting fact about all of this is that how I understood it, the recipient of my own heart will be a patient of Cedars, who is waiting for their call for a heart while I'm doing the same (but mine will be coming with lungs!). This is so when the right organs are available for me, they will be able to have the heart only recipient on call and ready to receive my heart as soon as it's removed from my chest. This also means that there's a good chance my family will be sharing a surgical waiting room with the recipient of my heart... They not knowing their loved one's heart is coming from a living donor, but my family of course knowing. There are strict rules set up to make sure a recipient does not have personal details of his/her donor, and vice-versa. So, it will be quite amazing to see someone recovering from their heart transplant next door to me in the ICU, knowing my heart is beating in their chest. I know that at that moment, all the pain, struggle to breathe, stress and anxiety I've ever had in my entire life had been worth it because I gave someone else a second chance to live again. How many people get to say they were able to give someone their heart- literally? 

So our first step is to figure out financing. I've been assigned a very sweet and helpful financial counselor that is working with me to find an insurance that I can switch to that will be accepted at both Cedars-Sinai AND UC Davis Med Center. I will definitely need to continue the every three week bronch and laser at UCD to keep my right lung from closing up completely and causing my lung to collapse.

Some of you may already know this, but some of you may have probably been wondering WHY on earth Benito and I have been engaged for 4 1/2 years and haven't gotten married already?!? Well, the truth is that we were afraid to lose the insurance I currently have now (which covers All my hospital stays, procedures, tests, and medication) once my insurance began to figure in Benito's salary as my husband. So, we've been content on staying engaged and not fixing something that isn't broken. Now that I'm in need of a new insurance that Cedars accepts there is a very good chance that Benito and I will finally be able to marry and I'll transfer on to his work insurance. So that's what we're looking at for the time being... We're trying to get a list from Benito's health insurance rep that lists all the different insurance options his work gives him, then I'll have Cedars and UCD take a look at that list and tell me which ones they accept and then it should be as easy as picking out of the final list of insurance options that Both hospitals accept! Fingers crossed it's that easy... We all know how difficult dealing with insurance can be!

Once insurance is no longer an issue, Dr Chaux will refer me to Cedars' heart transplant doctor and that doctor will begin ordering tests to see if my heart really IS as healthy as we are hoping it is. If it is, they'll have me spend 3-4 days down there for a bunch of eval testing that if all goes well, will ultimately be my ticket to being listed there for their [and my] first double lung & domino heart transplant. Dr Chaux said that I'm welcome to stay living at my own home while I wait for my call (6-8hrs away from Cedars, depending on traffic), then after I'm discharged I'm given the choice to go back to my home or rent a place to stay for a couple months  that's close to the hospital. He said that as long as I made it to my once weekly transplant clinic I can live wherever I wanted. He even has patients who live in Colorado and Utah that fly in the night before, go to clinic early in the morning, then fly back home that afternoon. My only worry is how much I'll be able to stand the sternum pain while I travel back and forth. The 2mi drive from UCSF to the hotel my mom and I stayed at post transplant in San Francisco (10 1/2 years ago!) felt like the longest car ride with all the bumps on the road. It was so painful and squeezing a pillow only gave so much relief. For anyone that doesn't know, bone pain is Horrible. I wouldn't wish it on my worst enemy.

Part of the reason why I have taken so long to get this blog update posted is because it was important for me to talk to my immediate family in person about it before they had to read it online. This is a very scary, but hopeful turn of events for us and I wanted to be able to see their faces and cry with them instead of hearing later that they cried alone while reading my blog. So I apologize for the long overdue update, but I also thank you for your patience and allowing me to spread this news the way I needed to.

There has been a lot of tears and hugs between Benito and I this last week, but I can assure you they are tears of relief and amazement. We have been so happy together all these years, but the years have also been filled with a lot of grief, worry, and pain. I can not wait to start a new chapter to our story and it be all about how much we get out and do things instead of spending our time watching every tv series Netflix has to offer, while eating dinner in bed because I'm not feeling good enough to do much of anything else. 

So to those of you who pray, please pray that my heart is healthy so I can be a heart donor, pray that we can find an insurance that is accepted at both hospitals and doesn't require huge copays that will put us in debt, pray for the donor who is right now living their life, completely oblivious to the fact that he/she will be the second hero to save my life. To those of you who do not pray, please send me your positive energy, and love. I've said it plenty before, but I'll continue to say it: I owe my life to you, my family, friends, nurses, doctors, respiratory therapists, and of course my fellow CF/transplant friends. Your love keeps me going and I promise I will never Ever give up on this miracle of life I was given twice so far. I love you all SO much!!!

I'll update again once I know more... In the meantime, please talk to your family and friends about organ and tissue donation and sign up to be a donor on the national organ donor registry if you have not done so already. Thank You!!! <3 div="">

www.donatelife.net

A very long day, but my fight is still Stronger than this disease.

I started this as being just a Facebook post, but once I figured how long it was getting I figured I'd just include everything and post the same update on FB and my blog. I'm sorry for the multiple posts to those of you who follow me on here and Facebook.

As promised, here is a brief update on today's adventures at UCSF.

As we were told I had an appointment with one of the pulmonary tx doctors, I was also told that if time permits I may be able to see a few others from the lung transplant team. Admittedly, I know about 80% of the staff already from my past visits with my first transplant, but there are a few unfamiliar faces that I was hopeful to meet and put a name to. 

The single new face I got to meet today was one of their new social workers. She, Benito, and I had a nice long visit and got a lot of worries and questions out of the way. Yay! I am so extremely happy with this social worker... Unlike the previous ones I'd had, she really wants to be available and help however she possibly can. She may even be able to figure out how Benito and I can finally get married without me losing my insurance! SCORE!!! More on that at another time... The real reason for this update was to tell you about the retransplant option, not talk weddings (but still... YAY!!!). 

So the transplant pulmonologist sat with us for quite a while going over every possible health concern she or we had. Our biggest concern is whether or not I have enough room on my native airway to attach a new lung because my stenosis issue has made its way that high up my airway. So I go back in 2 weeks for a bronch and they'll take a look at that airway and see if there is enough space. If there is then we can move forward with the prep and testing to see if I'm eligible for retransplant. If there's not enough room, well, I don't know yet. I'm just hoping and praying that my stenosis hasn't left me with nothing to work with.

If all goes well after that, then our next step is to figure out what's going on with my liver. My dr wanting to ignore the problem is going to have to go ahead and order diagnostic testing, whether he thinks it's necessary or not. I Have to have a diagnosis before they'll consider me for retransplant.

Lastly, we need to figure out a better way of treating my acid reflux. For those that don't already know, acid reflux can lead to chronic rejection. It can be aspirated without even knowing it's happening and burn/damage lung tissue, causing chronic rejection to flare up. I'm almost convinced that this is the reason why I'm rejecting right now. While in the hospital they don't carry my usual acid blockers and I had some of the worst heartburn of my life during the past two hospital stays. It got to the point where I was having Benito sneak in my two acid blockers from home because they wouldn't let me give them my own bottles to dose me with and I was miserable.

So once these three obstacles are behind me I can begin the testing for the retransplant evaluation. Like I said, I have a Lot of stuff that needs to be done and out of the way before I'll know whether or not UCSF thinks I'm a good candidate for retransplant and will list me.

I'll try to keep you all up to date on any new developments, but until you see me post in all caps that I'm on the list, know I'm still working Hard to get to that point.

I appreciate the outpouring love and prayers I've been getting the past few weeks, especially today! Please keep it coming. Like I always say- You give me strength through the love you share with me. I may be on the verge of fighting for my life again, but I don't doubt for an instant that I am Blessed to still be here to share this incredible, crazy, Amazing journey of my life with all of you. I am So grateful for every single one of you. Love and Hugs!!

Here we go again.

Forgive me because I don't know where to begin this blog entry that I've put off for as long as I possibly can.

The last update left off just after I was discharged from the hospital with another week of IV Meropenem to finish up at home. 5 days after I was done with the IV antibiotic I had a CF clinic appointment in which I brought Benito with me and was preparing to have a serious talk with my doctors about how much I want to be more aggressive toward finding out what's going on with my liver and the trouble I've been having with my stenosis getting worse. What I wasn't expecting was the talk my doctor was planning on having with me.

I was happy to see the younger CF doctor that day because I've been butting heads with my other doctor lately and there was so much that needed to be said, by both sides, to get caught up in disagreements.

As always, I did my PFTs first and was shocked to see that they were down from my baseline of 34% to 26%.  When my doctor made is way in to see me, he acknowledged that the large drop in my PFTs was very worrisome and that he was also concerned with the amount of pain I was in with pretty much no relief with my pain medication. He then went on to tell me that he knew I wasn't stupid, and we all know that my disease is progressing and that now is the time to get in touch with UCSF again if I intended to get back on the transplant list for a second lung transplant. He decided that the best option was to go ahead and admit me that day and while I was in the hospital we could have the Palliative Care team consult and see if they can come up with a way to control my pain. I'll also get started back on IV meropenem and once I've been on the antibiotic for a few days then I'd get a bronch to open up my stenosis again (even though the last bronch was only 2 weeks prior). We were all hoping that we could blame at least some of the lost lung function on my stenosis being closed off again.

I had my bronch 3 days later and was very surprised to find out that my stenosis was wide open, in fact it looked as well as it did when they finished the last bronch. So what that told us is that I'm definitely losing lung function to rejection again. I have a feeling the complete closure of my stenosis and my right lung not getting any air to it for a good week a few weeks prior is what shocked my immune system into rejecting again. What's done is done though. 9 days after my PFTs in clinic I did another set in the hospital and I was down to 22%. I was discharged the next day with plans to get over to UCSF as soon as I can.

As far as the pain management goes, the Palliative Care team in the hospital was very nice and tried very hard to help my pain. We attempted a nerve block first with them injecting lidocaine on and around the area that I have the chronic lung pain, but the injections really only caused more pain.  They put me on a PCA (pain med delivered directly through my IV each time I press a button) after my bronch - the day before discharge in hopes of it bringing my pain to a level I can live with before relying only on oral medication. The PCA and oral med combo helped, but I was so sleepy and out of it. They sent me home on my old pain med at a 3x dose along with Oxycontin to give me more of a long term relief so I wouldn't have to take my other med as often. Unfortunately my insurance refused to cover the Oxycontin at discharge, so the discharge planner managed to get me 3 days worth that "should" last until the insurance issue got smoothed out. Three days later we heard back from my insurance and they declined coverage, so I was back to only my old med by that Tuesday (1 week ago now). It took me about 4-5 days, but I've been weaning myself back to my old dose of my old pain med because it really doesn't help, no matter the dose, so I'd rather take less (just to keep from withdrawl, really). I can't believe how sleepy and foggy I was for the past 2 weeks on the Oxycontin. I'm still finding out things I've seen (tv shows), said, or did while I was so dopey and can't remember doing them! I am grateful for the time my pain was lessened, but I REALLY don't like living in such a fog and would rather not. I [think] I was supposed to get in touch with the pain management team once I was discharged, but I can't remember who exactly I was supposed to contact. I'm hoping they can eventually find a medication that will both help my pain and Not make me feel like I'm drugged up and forgetful. The pain I have is in my right lung, so God willing, this pain will not be an issue once I get new lungs.

I got a phone call the Monday following discharge from the Pre Lung Transplant Coordinator checking in with me and letting me know that they are waiting for some test results to be sent over from UCD before they schedule a clinic visit/consult with one of their doctors. Yesterday I got a phone call scheduling the consult visit for March 6th @9am with one of the doctors I'm familiar with already. Today I got a chest CT with contrast done that UCSF is requiring me to bring a copy of to my visit. I went ahead and purchased a personal pulse oximeter that tells me my oxygen saturation whenever I need to know (it's super small and I can keep it handy in my purse for whenever I need to check my o2 sats). Today while I was walking from the hospital's parking garage to the radiology department I was getting especially short of breath and dizzy so I put the sat monitor on and was surprised to see my oxygen saturation down to 85%. Once I sat down and rested for even 30 seconds my sats came back up to 97-98% on their own, so that's good news, but the desatting is definitely upsetting. I'm not ready to admit to myself that I am as sick as I really am right now. I prefer denial to be honest because every time I allow myself to think about it, I panic and get very scared that I either won't be accepted as a lung transplant candidate again, or I will just run out of time waiting for the eval and listing to be done. I'm trying my best to stay positive, but it's not always easy when I feel so helpless just waiting around doing nothing to speed things along.

So Benito and I wanted to let our family know about my need for another transplant before I made it public on here or Facebook and they found out via social media. Now that our families know what's going on I wanted to share the news with you all and ask for your positive thoughts, prayers, and whatever else you feel can help me get the lungs I need before it's too late. My first transplant was scary, but this need for a second puts a whole new level to "scary". This decline is so much more sudden and it has shaken myself and my family to the core.

I'll update again as I hear more. I'm not sure I'll have any news to share until after my appointment on the 6th, so don't get worried if you don't hear from me before then. I'll update after that consult though... I promise!

Lots of love to you all. And a big THANK YOU for all the support and love you've shown me and continue to give. I couldn't do any of this without the strength I get through your love!

XoXoXo

The end of a rough year leads to a rough new year.

I've had a pretty tough few months, but the last few weeks have been a doozie. I've been complaining to my doctors via phone about having more and more trouble breathing, fevers rising, and my pain getting worse. Finally, just before my birthday I got a phone call back saying that they'd like to admit me because they thought I may have a virus (although my symptoms had been going strong for Weeks). I told them that I had a 4 night "getaway" planned for my birthday - New Years that I really needed to go to, even though I wasn't planning on anything more than laying around and just spending some time away from home with Benito. So we cancelled our plans because my doctor was supposed to call me on Saturday to discuss admit, but after not hearing from him, we decided to check and see if our reservation had been rebooked by someone else yet. Luckily the place was still open so we went ahead and spent 3 nights in the East Bay. We literally spent the entire time watching rented DVDs, sleeping, or just laying around talking, but we did it together and had a great time away from home for those few days.
Once we got home I called my clinic to see if I can go ahead and be admitted, but my nurse was out of the office until the following Monday (Jan 6th). So we spent the next few days preparing for an admit and Benito getting a lot of work done at his office.
I wasn't allowed to say anything before, but Benito was offered a management position at his office and his first day at Operations Manager of the entire production part of the company was Jan 2nd! I'm just so darned proud of him for all the heard work he's put in over the past 5 years. He's such a hard worker and just LOVES this company, so when the previous VP of the company decided to buy out the company from the family who started it 20+ years ago, he knew he wanted Benito to run production. It's all so very exciting now that we can actually tell people! We've had to keep this secret for nearly 3 months before the big announcement on Jan 2nd!

So I called my nurse on Monday morning (Jan 6th) saying that I really need to be admitted. CF clinic is on Mondays, so I knew it would be a while before I would get a call back about getting a bed. I spent the day making sure I had my ducks in a row... Bills paid, laundry done, library books renewed or ready to return, etc. Toward the late afternoon I took a quick shower and by the time I got toweled off I was Bright RED, shaking, and super weak. I pulled out all my equipment and took my vitals... My temp, blood pressure, and heart rate were high, while my oxygen saturation was at an all time low since transplant. I called my nurse again and left a voicemail letting her know the update. Within a few hours my dr called me saying that the hospital was full because of how hard the flu has hit everyone this year, but he's trying to get me a bed. If a bed didn't open up then he'd look into getting me in to a different hospital until I could be transferred. The ideal ward I prefer to be put at my hospital is the transplant ward... The nursing staff is extremely kind and so knowledgeable about all of my medications and needs while I'm in the hospital.

Fortunately by 6:30pm I received a call saying they had a bed for me at my hospital, unfortunately for me, that only open bed was on the orthopedic floor, not the transplant or even the CF floor. So Benito accessed my port at home before we left because the nurses on the Ortho floor are so unfamiliar with central lines and I don't like having to coach someone through something while I'm feeling so awful to begin with.

So we got to the hospital at around 8pm and ended up getting put on supplemental oxygen right away because my oxygen saturation was 91% on room air. It took a long time before my nurse was allowed to do anything beyond that because nobody knew who my doctor/hospitalist was and who to ask. So no orders got written for quite a few hours. Eventually they drew blood, got an xray, started me on IV Meropenem, and respiratory treatments every 4 hours.

What we know now:

My xray showed that my lower right lobe of my lung is shrunken up, but they can not hear ANY air moving throughout my entire right lung. We believe that the stenosis has completely closed off and has caused my lung to "collapse". Because donor lungs have a strong tendency to "glue" themselves to the recipient's chest wall with scar tissue, my lungs won't look like they've collapsed via an xray. They can't physically collapse while they're stuck to the chest wall, but it's giving me so much more pain than my usual lung pain. Attempting to take a deep breath is Very painful and I get a feeling not unlike trying to inhale through an empty balloon. Not comfortable.

Once my oxygen sats came up enough to where I could be taken off the supplemental oxygen there was no longer anything they were doing in the hospital that I couldn't be doing at home. I needed to come home. Most of the nurses on the orthopedic floor were very kind, but every night and day was a struggle with my medications. It got to the point that they were just having me skip the meds that they weren't sure of, so I ended up having some Awful acid reflux every night, which for a transplant recipient, it could mean rejection (yes, reflux CAN contribute to rejecting lungs). I had Benito sneak in my own acid blocker med that I normally take at home (by prescription, so no funny stuff) so I could get my reflux a little more under control.

So they got one last xray done and set me up with IV Meropenem to continue for another 2 weeks at home. I was told that my CF dr was going to speak to my other pulmonologist that does my bronchs and get a bronch scheduled for early the next week (this week). So on Monday I called my CF nurse to check in to see how that bronch was coming along... My dr did talk to my other doc, but he didn't tell him that I needed a bronch asap. :-/

So my nurse got in touch with my bronch pulmonologist and I got a call today saying that the soonest I could get scheduled was next Tuesday the 21st. I broke down and cried... There's no way I could wait another week in this amount of pain. She said my doctor is going out of town tomorrow and won't be back until Tuesday, but she'd call him and see if there was Anything we can work out. A little while later she said my doctor agreed to get me in for an early bronch at 8am tomorrow morning. Basically, his flight leaves at 10am and he's swinging by the hospital on his way to the airport so he can help me out before he leaves town. I can't tell you how much of a relief that is! I can't wait to be able to feel again what pain less than an 8 or 9 out of 10 feels like!

For over a month now I've been experiencing some strange new symptoms and they're continuing to get worse. I've had a Lot of itchiness that Benadryl doesn't help, ammonia smelling sweat (yes, very Gross!!), pain in my right upper abdomen, and some others that are a little too personal to share with you all ;-)

So I got blood work done and found out that my liver enzymes have been rising for a few months. It took a LONG time for me to get my doctor to agree to do any further testing, but he agreed to an abdominal ultrasound and a bunch of other blood tests. Everything is coming back negative, so we don't know what's causing my liver to act up, but during this past hospital stay I asked to be referred to a GI specialist so they can help me figure out what's going on (because my CF doctor told me he didn't want to "dwell" on it any longer). It's hard to just ignore all that stomach pain and constantly paranoid that you smell like ammonia... I'm grateful to be seeing someone soon who is familiar with liver issues and won't just ignore me.

I'm totally worn out, but I will try to get on here soon to tell you about what we've been discussing regarding retransplant. Basically the docs and I are worried that one of these bronchs with laser could go from routine, to life threatening because my doc can't see what he's burning once it all goes black with char and he could very easily hit an artery... Scary stuff, but something to think about.

I do hope you all are having a good year so far.

Until next time...

Reposting: My Story

I wrote this the night before my 2nd Transplant anniversary. 6 years later I thought I'd share it again... It brings back so much emotions and memories every time I re-read this...


At this very moment 2 years ago I was in my mother's car being driven at what felt like warp speed to a hospital three hours away where I was supposed to be given my second chance at life. I'd hugged and said goodbye to my best friend for possibly the last time. Called my sister and told her I loved her and her kids and even had a small panic attack while trying to calm the rest of my family by telling them it's all going to be alright (even though I was so uncertain with my own words).

I'd prayed for this day to come for a year. Each day learning everything I could about transplant and the life I could have with new lungs. I wanted to know what it was like to breathe. To not wake up every single morning unable to stand up because I was so short of breath from a coughing fit. What was it like to sleep with One pillow instead of six? To not revolve my day around breathing treatments and little windows where I felt good enough to get a quick shower, or fix myself a quick snack. Oh to not be so dependent on others to take care of me!! The possabilities I had for what looked like more of a future than I'd ever dreamed of. I had so much plans for myself and couldn't wait to get started!

So, while watching television (Everybody Loves Raymond to be exact) on a Friday night I received a phone call on my cell from an "unknown" caller. I quickly answered it and on the other line was a man's voice (which soon after this point became my hero) telling me calmly that he had a set of beautiful lungs for me if I was interested. I had to have him repeat it.. All of a sudden my ears started to ring and I couldn't understand the words being spoken to me. After he repeated himself he asked if I was interested. Was I interested? It's too soon. I'm not ready... But the only thing that came out of my mouth was YES. He gave me instructions where I needed to be, and to be there by 1am to be checked in. I got his pager number, his cell phone number and another number to his office. If I needed to call for ANYTHING, I had a way to find him.. My surgeon; My hero.

I got to the hospital by 12:30am, checked in and into my new room to wait by 12:45am. Everything happened so quickly after that with the pre op tests, questions and the wardrobe change. After all that was done it was time to wait.. Boy did we wait. Every hour or so the nurse would come in and tell me and my family that it shouldn't be much longer until the OR is ready for me.. Finally at 8am Saturday, September 25th I was being wheeled into the O.R. I told my family one last time I loved them and with a smile on my face and my heart beating almost out of my chest I said goodbye to them quietly, without them knowing.

I woke up the next day in the ICU with my dad looking over me. His first response was yelling to whomever else was in the room that I was awake. By that evening my ICU nurses already had me sitting on the edge of the bed. The next day I was in a chair and from then on I was either in the chair or walking the halls unless it was bedtime and only then was I allowed in my bed. I definitely had a love/hate relationship with those nurses, but in all honesty I couldn't have asked for better angels looking out for me. After a few complications and 12 days after my surgery I was ready to be discharged and move into what would be my new home by the beach for the next 6 1/2 weeks.
I was so homesick while living in that hotel. There isn't words to discribe just how much I wanted my own bed and my friends to visit with, but somehow time passed and on the night before Thanksgiving I was packed up and on my way home with my mom. With the car packed as tight as it could possibly be I asked my mom to stop by my best friend's house before going home. I called her from my cell and told her how much I missed her and wished I could be home to spend Thanksgiving with them. Meanwhile I was walking up her doorstep without her knowing. I rang the doorbell and on the phone I told her "ding dong". Her father answered the door and he and I just grinned at each other... She was in her room squeeling with every bit of happiness that could come from her tiny body! She ran out and gave me a huge hug. Oh what a wonderful feeling to be home! To have my people around me again.. Surely all of this crap I'd gone through had been worth it if I get to have a little extra borrowed time to spend with the people I love. I will never forget what my friend sent as a text message to me that very night before I'd gone to bed.. "You brought the holidays back with you" That love is what I fought so hard to keep, what I still fight so hard for.

So, two years later and I feel amazing. I'm not feeling perfect, but I can't expect that. I wouldn't be here right now writing this if I hadn't had the opportunity to be given two new beautiful lungs from the donor who gave one last time to a complete stranger. I spend each of my anniversaries both thrilled to still be here, but also grieving for the loss of this wonderful person who saved my life. I hope to someday get a chance to meet the family of my donor and tell them how much their child/husband/wife means to me and not a day goes by where I don't thank them for this second chance.

I do not know why I wrote this blog, but I've felt the overwhelming need to talk to my donor and obviously I can't. I figured instead I could tell my story a little and possibly get others to consider talking to their families about becoming donors. I have a dear dear friend who is waiting for his transplant, but there are just not enough people who make it known they are donors, so too many life saving organs are not used to help people like my friend. If you want to be a donor, tell your family and go to http://www.donatelife.net/http://www.donatelife.net/">http://www.donatelife.net/
> and find out how to sign up on the national organ donor registry. It doesn't work if you just put that pink dot on your drivers license, your family members can over-ride that.
Thank you for reading my story and I apologize for it being so long. Oh, and yes, I sleep with One pillow now = )

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

Friends are Forever

Hi friends!

It's been about 2 months since I've posted my hopeful news about how great my lungs are looking since starting the photopheresis treatments. Now, 2 months later I feel about the same as I did in the last post. The relief I got from opening up my airway via bronch and balloon was short lived. I've been struggling with my breathing feeling really tight again and went to clinic this past Monday (9/12) and spoke to my doctor about going back in and re-opening it. Dr. Morrissey said he has been doing some thinking and discussing with other pulmonary doctors there at UCD about how he could give me longer relief in between these dilations. He suggested freezing away (as you would a wart) one half side of the scar tissue which is the narrowing in the airway and going back in a few weeks later and seeing if it's staying open. If it seems like it's working, he'll go ahead and freeze the other half, but he doesn't want to do the whole thing in case it causes a lot of inflammation and closes off the airway completely. So, I have an appointment for 1pm on Friday for a bronch and to see if they can cryo (freeze) the airway. My doctor did say however that if the airway looks as open as it was after they dilated it back in July (which I highly doubt it will), he will skip the procedure and wait until it's necessary again.

I have a set of photopheresis treatments coming up tomorrow and Wednesday mornings and am looking forward to having lunch with a close friend from the hospital on one of those days. Her name is Kathy Lorenzato and she runs the music therapy program at UC Davis Med Center. I had the pleasure of meeting Kathy on one of my very first admissions to the hospital back when I was 5 years old (23 years ago, wow!). Since then, I've stayed very close to Kathy and have always looked up to her and her big heart. Recently I was emailed by a reporter from the Davis Enterprise about an article they were wanting to write about Kathy, so I got to speak to this reporter about what Kathy has done for me and what a great person she is. The article ran in the Davis Enterprise yesterday and I'm very happy with how it turned out. The link to that article is:

http://www.davisenterprise.com/home-page/featured-stories/music-therapist-brings-comfort-and-joy-to-children-who-need-it-most/

(You may need to copy and paste the above link into your browser in order to go to the site.)

August was a tough month. I lost my closest, longest known CF friend on August 22nd. Kristina was 3 years older than me and had always been a role model to me. We met at the hospital when we were young and instantly became friends. Being a few years older than me, Kristina always went through the scary CF stuff before me and was there to hold my hand when I went through it myself. She had her double lung transplant at the same hospital I had mine, only 1 year earlier. At the time Kristina had her transplant is when I was told I would need to decide whether or not I was willing to be put on the transplant list myself. So Kristina was there to answer all my questions, relieve my fears, and remind me that I can do this too. Her strength gave me strength, her courage gave me courage, and her laugh would without a doubt make me laugh too. I had a very hard time with the passing of Kristina because I no longer have her to hold my hand anymore. I feel so much more alone now, but I'm sure she's up in heaven still rooting me on. I wasn't emotionally "okay" to make it to Kristina's rosary / viewing, but I (along with Benito and my mom) went to the Funeral and I'm very glad I did. Her service was absolutely beautiful, just like her. Her mother sang Amazing Grace and although I was in tears listening, I had to smile because I know Kristina was there in spirit smiling at how beautifully her mom sang the song. At the reception after the service I had the pleasure of finally meeting Kristina's father and her best friend Shannon, whom she used to speak of Every time I talked to her. Just before the reception was over I got the courage up and stood and spoke about Kristina as I knew her. About how strong I know she was and what a wonderful friend she was to me. I've lost more friends to this horrible disease than I care to count, but the loss of Kristina has left me questioning my own fate. You see, Kristina and I were the last two [living] CFers out of our group who grew up together, roaming the halls of the adolescent ward at UCD. Losing Kristina has made me even more determined to fight this disease and not let it win though.

Just a week after Kristina passed away was Benito's birthday and knowing how much we needed some cheering up, I surprised Benito with a trip to Santa Cruz and Monterey. I wanted to keep the destination of the trip a secret, all he knew was we would be gone 1 night and to pack for weather a little cooler than he's used to here. He was determined to do the driving, saying it would be fun to drive somewhere that he doesn't know where he's going, so I let him drive, giving him step by step directions until we pulled up at the Santa Cruz Beach Boardwalk. We had a great time in Santa Cruz. The day after the boardwalk, we drove the 45 extra minutes to Monterey; somewhere I've always wanted to go (after reading all about Cannery Row in Steinbeck's Cannery Row and Sweet Thursday books). We didn't have much time to spend in Monterey because we had such a long drive home (Roxy was staying with grandma, so we had to pick her up on the way home, which added even more time), but we walked around Cannery Row and found a great place where Benito did some wine tasting. We plan on going back to Monterey when we can spend more time seeing everything because what we saw, we loved!

So that's about it. I'll write again when I have more to share.
Thanks to everyone who checks in on me from time to time!

Love & Hugs,

Leah

P.S.
In only 6 days I'll be celebrating my 7th Breathday (transplant anniversary)! Crazy how fast time flies!! :)

Kristina and I back before either of us had our transplants, May 2002.

Benito and I got our portrait done at the Beach Boardwalk, does it look like us? :D

Ray Lamontagne soothes the soul

It's been over a month since I've been told there is nothing left to do but wait to get sicker. A lot has happened since I've last updated, so I'll try to cover everything.

I'm sitting in my bed with my laptop listening to Ray Lamontagne; letting his raspy voice and beautiful lyrics soothe my soul while I recall some of the not so fun things that have happened so far this year.

My last post went over what happened at my last CF clinic appointment. Just a quick recap: After Stanford declined taking me on as a patient, I was relying on my CF doctors to help stop the decline in lung function. Why not have my transplant center (UCSF) take care of me and my possible chronic rejection you ask? Well, my transplant center is one of what seems like a growing group of transplant centers that are very apathetic toward their patients (I should include there are a Few people I've talked to who have not had this same experience with UCSF) and do not have a protocol toward treating chronic rejection. My CF doctors have exhausted all their resources and are not familiar enough with the transplant field to know what to do for the possible chronic rejection(CR). So, I've been left with absolutely no idea what I'm to do about my increasingly fast decline of lung function. In the last month alone Benito and I both can tell a huge difference in my breathing. My last fev1 (lung function lingo) was at 33% prediction, which is at the point where people would be listed for transplant. I was at 17% fev1 at the point of my first transplant, but since the damage CF did to my lungs was so gradual, I was able to adapt to the low lung function. The decline I have now seems to be happening to fast that I'm not able to adapt and it feels like it takes forever to be able to catch my breath after walking just a few feet. Imagine trying to inhale through an empty balloon... That's exactly how my chest feels when I'm out of breath. My sound of my breathing is getting to be so noisy that it keeps me up at night (I sleep with a fan going even if it's freezing, just to try and cover the noise of my breathing).

So after the last clinic appointment at my CF center I had yet another balloon dilatation done on my right narrow airway and after that procedure was over, my doctor came to the recovery room and talked with Benito and I about where we need to go from here. I had brought a printed out copy of a conversation between a very good CF/Transplant friend of mine who goes to Duke hospital. In these conversations she was helping me with what treatments she knew of that hers and others have used to treat chronic rejection. I gave this copy to my CF doctor to read over before my procedure that day and by the time I saw him after the procedure he had read it over a few times and had spent a half hour speaking with the pulmonologist there at UCD that worked my up for my transplant evaluation six years ago. This pulmonologist used to work with the lung transplant team at UCD years ago when there actually was one, so he knows a little more about transplants than my CF doctor. Basically all they came up with, was that I needed a transplant center to administer these treatments because they have never prescribed them and didn't feel comfortable having me be their guinea pig. So, this left me to first go back to UCSF and see what they could do for me, then if I get nowhere with them, I can look into possibly going to UCLA, but it's eight hours from where we live and it would be both physically and financially draining to have to relocate.

Fast forward to February 10-11th. Benito and I went to San Francisco to visit my transplant doctor for the first time in a year hoping they will give us some hope, although I wasn't expecting much. I had my PFT's (which showed my fev1 down to 33%), CT scan and transplant clinic on the 10th and bronch with biopsies the following morning. My doctor basically told me he wasn't convinced what I'm going through is chronic rejection. He's STILL convinced the stenosis I have in my right main bronchi is causing all this decline in lung function. I was willing to believe him for a while, but after 2 years of my lung function getting worse and worse by the month even though I was getting balloon dilatation's to open the airway every month. So I brought up IF what's going on is chronic rejection, what does he usually do for his patients in CR? He basically said that after making sure the patient is on Azithromycin (which I've been on since my transplant), he doesn't do anything. He believes there is no proven treatment for CR. In fact after I brought up a list of treatments that I know other hospitals are using for their patients in CR, he denied that more than one center is using one of the treatments (which I know is untrue), and said the other treatments don't work. *Huge sigh* At that point he said "there is one thing you haven't mentioned yet" and I knew what he meant... Re-transplant. He said he would re-transplant me in a heartbeat because I'm "such a great patient". I can't tell you how upset that made me. I feel like this hospital treats me like a customer and not a patient they need to care for. They are so eager to re-transplant me (where they'll make $200k just for the surgery alone), rather than do whatever it takes to try and treat what's wrong now. It's very unnerving to not have faith that your doctor is doing what's best for you.

The bronch the following morning was an absolute nightmare. I have chronic side pain, which is assumed to associated with a chest tube and nerve problems. This pain gets a lot worse when I deep breathe and it's forced me to take pain medication every day in order to just get out of bed every day. Well the fellow DR that was in charge of my bronch for some reason was so afraid to over medicate me that I was awake during the bronch, given only a child's dose of Versed (medication which is supposed to help you relax). So during the bronch, the guy who calls himself a doctor was only able to biopsy my left lung because my right airway wasn't open enough to get the tube down through it. Once I got to the recovery area I was in 12 out of 10 pain in my side and stayed that way for 3 HOURS because the doctor was scared to give me any pain medication because somewhere in his tiny brain he thought I might get over medicated. Mind you, my O2 sats were 97%, my heart rate was around 100bpm and my blood pressure was around 160/80, which is too high, a sign of a person in pain and not in danger of being over medicated. After about 30min of crying, the nurse closed my curtain around me so he and everyone else could try and ignore me. 2 1/2hrs later while still in 12 out of 10 pain and still crying, the nurse came in and said "good news! the doctor is allowing you to take half of one of your pain pills!" I was like "You've got to be kidding me! Why can't I take a whole pill? I take a whole pill at home every 8 hours!" The nurse took my bottle and cut one of the pills in half and handed me the half along with a glass of water. I asked him for the bottle and dumped his half back into it and took a full pill. That nurse flipped out! He opened my curtain and told me I'll never be able to take my own medication again (Fine with me! The hospital shouldn't force their patients to treat their own pain! THEY shouldn't allow their patients to be in excruciating pain for 3 hours without trying to help them!). He then demanded that I give him back my pill bottle. Ummm HELL NO! I told him that once he brought my fiance back into the room I'll give the bottle to him. He didn't need to be worried that I'd take more. I've been on this medication for years and I know not to over medicate myself. So about 45min later when my pain was beginning to get better, the "doctor" came in and said that since I took a whole pill against medical advice, he was going to put me in the ER to be watched and made sure I didn't desat and stop breathing because of my excess medication dosing. WHAT?! First of all, it wasn't excess. I had less medication so far that day than I usually do on a daily basis. Second, no doctor who knows anything about transplant recipients would send their patients to the ER where there are God knows what kinds of germs floating around and risk getting me sick. A few minutes after he left, a different nurse started his shift and found out what had been going on and called one of my REAL doctors. Within a half hour my tx doctor had come in and wrote discharge papers saying to hurry up and go before that other "doctor" followed through with his crazy ER plan. It's sad, but events like these are not all that uncommon for me at UCSF. Most of the nursing staff is great, but I can't say the same for their doctors.

Two weeks later I was back to UCSF because my tx doctor wanted me to come in and go under general anesthesia while they go down to open up my airway and take a better look around. Thankfully once I got to the recovery room that time, the doctors and nurses gave me adequate pain control and were very kind. My main tx doctor came in to talk to Benito and I after the dilation with a huge grin on his face saying "I think we did a great job opening that airway". Unfortunately the week following that procedure my breathing got really bad and for the first time I think even scared Benito. It's been almost 2 weeks since the dilation and I'm beginning to get back to my baseline. I have CF clinic on Monday and I'm not sure what to expect.

Onto better news, Benito's sister will be getting married this next Sat 3/12 and I'm her maid of honor! Benito and I haven't really done any major wedding planning for us yet. I want to enjoy my wedding and as of now, my health won't let me. So, I'm hoping to start wedding plans the day after I am feeling better! :)

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.