Sunday, March 29, 2015

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="">


Anonymous said...

Dear Leah,

I've been reading your blog for a couple of years (!!!) now without ever leaving a comment.
Now I really wanted to let you know I hope you will do great and you can get a new change on life.

I sent you all the positive thoughts I have!

Lots of love all the way from Holland,

(CF, TX 2009, ReTX 2010)

MJ Donaldson said...

Oh will be praying very hard for you and Benito. So much to take in and such decisions to make. You are very wise and the journey is one you and Benito will make with many cheerleaders close at heart. Love you and praying for your health and comfort as you begin this new chapter. Love you - Martha

Leah's GoFundMe Transplant Fundraising Page