Wednesday, September 24, 2014

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.

Wednesday, April 23, 2014

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. 

Tuesday, April 8, 2014

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!

Thursday, March 6, 2014

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!!

Wednesday, February 19, 2014

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!


Wednesday, January 15, 2014

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...

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