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

Ten years is something to celebrate!

Tomorrow is a big day for me... and for a family that I've only dreamed about meeting. Tomorrow will be ten years since my double lung transplant surgery. Ten years ago a family was having to say their goodbyes to someone they love, while I was hoping for the best, in my heart I was saying goodbye to everyone I love, completely unsure whether or not I'll ever see them again. During the past ten years I have not had a single day go by that I haven't thought about my donor and his/her family. I have periods of guilt and grief for the loss of this person I've never met, but over the years I've come to understand that that's always going to be a part of me and I'm okay with that. I'm alive today because someone chose to give the most selfless gift a person can give... When it was their time to leave this world, they wanted to be an organ donor and save lives. Turning a very sad, dark time into something bright and beautiful. It just so happened I was the incredibly lucky person who received this hero's lungs. Every breath I take is through their lungs, every word I speak is spoken with the air my donor is giving me.

Over the course of the last ten years I've had to learn how to manage this new life I've been given. Every transplant patient in waiting is told that having a transplant does not make you healthy again; you're actually trading one disease for another. That couldn't be more true. In some ways, having my CF lungs was easier because I spent my entire life with them... I knew all the tiny clues my body would give me when it was time for a tune-up (something we CFers call a hospitalization w/IV antibiotics and vigorous chest physio therapy). Little surprised me with my CF lungs. After my transplant I've had to learn what to look out for that could mean infection, rejection, and in my unique case, my airway collapsing. I've had to learn how to constantly watch everyone around me and recognize when I see someone with a little sniffle or a cough, and as politely as I could, make some distance between them and I.

In the last 10 years I've had a LOT of ups and downs with my health. I've been able to either overcome or learn to live with every difficulty that's come my way, from tachycardia, neuropathy, chronic lung pain, severe bronchial stenosis that requires balloon and laser intervention as often as every three weeks, to two occurrences  of chronic rejection, the list could go on for quite a while, but I won't bore you with all that. What I'd like to focus on is the ups I've been able to experience in the ten years since receiving my gift of life...


I took two semesters of ballroom dance lessons with Benito. I found something inside myself while I was learning the Waltz and Fox Trot... For the first time in my life I was good at and enjoyed a physically demanding activity without having to stop every minute or two so I could catch my breath. When I lost so much lung function with my first bout of chronic rejection, I had a hard time giving up dancing. Even now, with my 26% lung function you can catch me dancing the cha-cha or waltz with my dog or broom. Dancing became a real passion of mine and I look forward to taking classes again if/when I'm retransplanted someday.

I have been able to watch my niece Anna grow into a beautiful, intelligent young lady. She is a mini-me and it makes me so happy to talk about books with her. I've watched my nephew Tyson grow from a little baby to a big hearted, skateboard loving, little boy who does whatever he can to make an audience laugh. Two and a half years ago Benito and I got to welcome into the world our niece Maricela. She is so full of life and giggles that just spending 5 minutes with her will be enough to turn your bummer day into a great one. Benito and I are so blessed to have them in our lives.

This October Benito and I will be celebrating 6 years together. Due to all the craziness of my health insurance we can't get married any time soon, but that's okay. We bought our first home together 2 years ago and we feel pretty content with how things are between us. Don't get me wrong, when we figure out how to marry and still have full coverage insurance we can afford, we're going for it, but we don't feel like we're missing out on anything a married couple would have except shared taxes and a piece of paper.

Last month I finally worked up the strength and courage to write a second letter to my donor family. I wrote a letter when I was one year post, but I will never know if that letter ever made it to the family. The letter I sent last month was given to someone a friend put me in touch with who works on the recipient side of things, so she knows whom to get my letter to that will be able to pass it on to my donor family. In all honesty, writing that letter brought me a ton of peace and happiness. It's very important to me that ten years after the loss of their loved one, they know that I'm still alive and kicking, grateful for their loved one's gift.

I considered using this opportunity to update on my current health going-ons, but I decided against it, wanting this post to be purely about my 10 year Breathday. I'll post an update in the coming week with everything that's happened in the months since my last update. Just know that I'm home, I'm "stable", and I'm in pursuit of a hospital willing to evaluate me for retransplant.

The last thing I really wanted to say to all who read this is THANK YOU. In the time leading up to my transplant, the time I was living in San Francisco recuperating from my transplant, and all the time since, I've been blessed to have so many true friends and family help wherever they could. I could not have gotten this far without the love, support, and inspiration I received from those that love me. Thank you for these ten years of love, thoughts, prayers, and encouraging words when I feel overwhelmed and tired. I will Never give up while I have your love pushing me forward.

Bronch Photos

Attached is the printout of images that I was given yesterday after my bronchoscopy. If you get grossed out with seeing graphic photos of someone's lungs then do Not scroll down.
I thought it might help to send this so everyone gets an idea just how bad I am when I say that my breathing is tight. 
My right lung was completely closed off so I wasn't getting Any air to it for about a week. When it's closed off like this I'm literally only breathing with approx 12% lung function and with no supplemental oxygen, which I really need (the test to determine whether I need oxygen was done 3 days post bronch, when my airways were open, so they won't order oxygen for home). The scary part is that this complete closure is happening much more frequent and is becoming much harder to open back up. I still do not have an answer from UCSF whether or not they'll be willing to retransplant me.
I'm spending the day in bed sleeping or watching Netflix because my lungs hurt too much for me to move around. 

Still waiting...

My apologies for not having written an update in the past month. In all honesty, there hasnt been much to share. I had the bronch at UCSF on March 21st and I was happy to have the new lung transplant director be the one to do it so he was able to see for himself what my airway looks like. Today I finally heard back from my UCSF nurse coordinator about what they thought about my airway... Basically we still don't have a solid yes or no. The team brought up my case during a weekly meeting and the surgeon (who is a different person than the amazing Dr Charles Hoopes who did my first transplant) has never come across a patient with my unique circumstances which is my stenosis scar tissue issue, so she wants to do some research and speak to some other lung transplant surgeons about my situation next week during a national thoracic transplant conference. I'm really hoping that by Thursday of next week I'll have a firm yes or no and then we can finally move forward from there. I've been asked by a few people now whether I'll seek out another transplant hospital if UCSF tells me they aren't comfortable retransplanting me and the answer is absolutely Yes. Unfortunately Stanford hospital has turned me down for any type of care because I didn't get my first transplant at their hospital, but we still have options in Southern California that we can look into if need be. It would require us to relocate for a while, but we'll do whatever we have to do. We're really hoping UCSF will be my retransplant center because it's only a 2 1/2hr drive from where we live and I'm familiar with their hospital and routines already, but if they turn me down it'll be because they aren't comfortable retransplanting me with the risk outweighing the benefit. I definitely want a surgeon who is confident in the surgery she/he is agreeing to do!

As far as my current health is going, I'm happy to report that I don't think my lungs are declining very fast. I had the very large, sudden drop in Jan, but my lung function hasn't declined a whole lot since then. I did my 6 minute walk about a month ago and because it was done just 3 days after a bronch with laser I was able to do the entire 6 minute walk without supplemental oxygen. That's really great, but that doesn't reflect how my oxygen saturations drop in the weeks prior to a bronch. So it's a bit of a catch-22... It's great that my lungs are able to get some oxygen into my blood still, but when my stenosis is completely closed off and I'm only using about 20% of a single lung I'm not able to keep my oxygen sats high enough to keep me functional without getting lightheaded and feeling like my extremities are weighted down. So since I can't get supplemental oxygen ordered I have become much Much more home bound than I'm used to. I really only leave the house when I have a doctor's appointment or if Benito can talk me in to going out for dinner. I don't do any of our shopping anymore and have to get loads of laundry or small gardening tasks done over the course of a couple of days. It really sucks feeling so closed off from the world again and I just can't wait to feel Good again!

My appointment with the liver specialist is tomorrow morning and I'm so hopeful that she'll have an idea what's going on with me, or in the very least she'll know what tests to order so we can figure it out. The liver pain is almost always there now, but some days are worse than others. It skyrockets if any pressure at all is placed on my upper abdomen, so Benito has gotten used to not resting his arm on my stomach when we're sleeping. I think I've pushed his arm off me with enough force to scare him lol.

A little bit of exciting news is that Benito's sister and her husband visited us a week ago and asked Benito and I to be their cutie pie daughter's Godparents. We of course accepted and are very excited to be an even bigger part of our niece's life.

That's about it for now. I hope you're all having a great start to your spring!

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!!