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!!

We're Engaged!!!

Benito and I are engaged!!

We spent a few days on the Mendocino coast to celebrate our 2 year anniversary and while there, Benito proposed!

It was the second night at the cottage we rented... After a beautiful day spent at the Botanical Gardens in Fort Bragg, Benito and I headed back to the cottage to barbeque and relax in the hot tub. While eating dinner and watching the beautiful sun set against the ocean, Benito stands up and says "I guess this is a good time". I thought nothing of it, but when he came back to the table he was kneeling on the floor instead of sitting across from me at the table. I was very much not expecting him to propose, so my reaction was me wondering what he dropped and why is he on the floor? Then he opened the ring box and I realized what was actually happening. After a lot of "I love you"s and him asking if I would marry him, I of course said YES! We spent the rest of the night in the hot tub drinking wine we saved from last year's anniversary and talking about how Benito managed to pull off this huge surprise without me even suspecting.

I can not imagine spending my life with anyone but Benito. I am told that Benito is the lucky one, but really it's me who lucked out. I know it's not easy living with me and never knowing whether today is going to be a good or bad day in terms of my health. Benito knows my bad days and wants to be with me during all of them. He's extremely supportive and does whatever he possibly can to make my life easier. I love him more than anything (even more than chocolate, which, if you know me, is a lot!) and can not wait to be his wife!

As far as the wedding goes, we're hoping for a nice outdoor fall wedding either next fall or even the year after that. Unfortunately we have a lot of red tape to get through in terms of my health insurance before we can make things official, so we're not in a huge hurry (although I can't wait to begin our married lives together).

Here are a few pictures of our stay on the coast and the beginning of our engagement, but you can see all of our pictures on my Picasa album at:
http://picasaweb.google.com/leah92504/FortBraggEngagement#

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.

The Spoon Theory

The Spoon Theory was made up by a woman named Christine Miserandino whom has Lupus, an autoimmune disease that is very difficult to live with. She was asked how it felt to be sick and the Spoon Theory was born.
This article explains how it is to live every day with an illness. It explains better than I can put into my own words how I feel every day of my life. If you've ever been curious how it feels to be me, read this and you'll get an idea.

Lots of Love!

-Leah

(cut & paste the below link into your web browser to view)

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino

A plan of sorts

So some of you may know, I was discharged from UCD on Friday night. All the tests that my CF docs wanted to do had been done, so keeping me in there while waiting for results just adds to the risk of me picking up some extra infection that I really don't need right now.
Before discharge I did a 2nd set of PFTs (pulmonary function tests) to compare to the ones done before my bronch where they dilated open my right airway. Pre bronch my PFTs were 37%, post bronch 41%, which we are going to now consider my baseline. Not a whole lot of improvement, but I'll take whatever I can get!
I talked to both of my CF doctors seperately on discharge day about what their thoughts are and what they think we should do. Basically they both agree we're looking at chronic rejection and they want to first increase the medication I'm currently taking for immunosuppression and see if that stops the progression of rejection. If that does not work, they think I should be sent to Stanford for an evaluation with them to see what they think I should do.
Some of you may or may not know that with chronic rejection, the damage done cannot be reversed, but we can only hope to stop the progression of further damage. I have never been in either acute nor chronic rejection since my transplant, so this is all new water for me. One of my doctors brought in a 10 page article for me to read about chronic rejection and all the available treatments (along with their risks). I began reading it while waiting to be discharged and got about 2 paragraphs down where I read that the "median survival after onset is 3-4 years". I stopped reading at that point and will pick it back up when I don't feel quite so overwhelmed.
Since I've been home I've been having a very hard time breathing and dealing with very sharp pain in my sides. While at the grocery store yesterday with Benito my side pain got so bad it knocked the wind out of me and I couldn't move for a few minutes.
Today I stayed in bed as long as I could, sleeping on and off until 2pm hoping that maybe some extra rest is what I need (I sure dind't get any rest in the hospital!). I need to get a hold of my academic advisor about retaking the class I'm currently in at another time because my instructor of this class is not being very understanding about assignments being turned in a little late. I'm also worried about work. I don't want to quit because I love getting out of the house and getting a paycheck, but I don't know how long I'll be able to keep everything going. I think I'm even beginning to get a little bummed out about everything, which doesn't help anything.
A plus is that I have great support from Benito and my family, so I never feel like I'm dealing with all this on my own. Even Roxy helps by snuggling with me when I don't feel good and Benito is busy at work. :)

So for now I go along with the increased immunosuppressant meds I've been taking and wait to go to clinic on the 26th. In the meantime my CF docs are going to discuss my case with a few other doctors including a kidney transplant doctor about what to do for rejection that isn't too hard on the kidneys. So my next blog may not be until after the appointment on the 26th when I should have more to share.

On a much happier note, my mom's birthday is tomorrow and she's coming here so we can go out and get a pedicure and go out to lunch! :D

Take care everyone! Lots of love and thanks for the prayers :)

Homeward bound

I've been given the green light to be able to go home! I've done all the testing they felt necessary and will be going home once my other half is off work and can come pick me up.
I'll update in the next few days about what the doctors are thinking and what the plan is so far.

Thanks again to everyone for their support!

An update from behind bars *cough* I mean the "hospital"

Going to make this quick since I don't have a whole lot to report just yet.

I was admitted last night (around 7:30pm) and after a one night with very little sleep I've had an x-ray and a CT done. The CT was supposed to be done with contrast, but the resident doc didn't order it right (although I spent the entire night hooked up to iv fluids to flush my kidneys and given oral Mucomyst to "protect them"). So, after a CT without contrast one of my cf docs came in and talked with me about his thoughts so far.
He said my CT shows no signs of any serious infections going on, but there is inflammation in my small airways, which is a sign of chronic rejection. My stenosis (narrowing in my right main airway) is closed down to a tiny 3mm when they say it should be 2 inches, so I'm going to be scheduled either tomorrow or Thursday morning for a bronch with dilation to open that airway so I can get a little relief for the time being. After my bronch he wants to talk with either my transplant center or a doctor here at UCD that used to work along with the lung transplant team when they used to have one (long story short, the lung transplant surgeon turned out to be nuts, so they had to shut down their tx center years ago). This doctor my cf doc is referring to (a pulmonary specialist) is the man who was in charge of originally working me up for transplant over 6 years ago, so I have met him and look forward to hearing his thoughts.
I asked my cf doc, besides the obvious low immune system when being treated for rejection, what the cons would be to just start treating me NOW like I have rejection. He said it's the bad impact on my kidneys that is holding him back. My kidneys aren't great, like most people this far out from transplant, my kidneys are sensitive to medication and very weak when pushed. I personally feel that since it's pretty likely that most transplant people would eventually need a kidney transplant down the road at some point, why not treat the rejection now and deal with the kidney troubles later, when I can breathe again. What shocked me was that my cf doc said that once my pfts drop lower, I would be a great candidate for a 2nd lung transplant. I don't want to wait for that to happen; I don't want that to be my goal here. I'm very much NOT okay with allowing myself to keep declining so I can get another lung transplant. There is no question that if I had to make that decision again, I would do it in a heartbeat, but I do not want to go down that road unless absolutely necessary. I'm pretty sure I'm thinking too much into what he casually said, but I was just shocked to hear him say that was an option.
As far as the stent goes, it's lodged itself below where it initially was placed in order to hold open the stenosis I have, so it's causing a lot of irritation and possibly could be the root to the side pain I've been having for so long. He said he wants to look into removing it for good, or quite possibly replacing it, but because it's been there so long it's got a lot of scar tissue grown on and around it, basically making it a part of my body and making it difficult to remove without complication. He would have to most likely have it done by a surgeon in the OR, and the risks could be anywhere from bleeding to having my lung rip when removing it, causing them to have to do an emergency lung-ectomy (removal of that entire right lung). Needless to say, my eyes got huge when he said that. Ummm I think I'll pass, but thanks anyway! lol!
So for now, I wait until I get my bronch then I wait to hear what my doctor has discussed with the other doctors and then hopefully a plan. I need a plan. I'm to the point where I'm feeling like I have my old cf lungs back and it's both frustrating and scary.

I know I said this would be short, sorry! I'll update again after I know more. Thanks to everyone for their well wishes, prayers, and kind words. I really appreciate all the support I get from you all.

Let's get this figured out!

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

Biopsy

Had my biopsy yesterday. 24hrs later and the anesthesia has finally worn off enough for me to post an update. My lungs showed a lot of inflammation and suprising enough, my nerves have re-attached themselves in my donor lungs. Every time they would "snip" a little sample off my lungs, I would wake up in pain. For those of you who don't know, donor lungs usually do not have working nerve endings because of the transplant process and not being able to reattach them. I'm unique though! yay me! This explains why my right side has been hurting so bad the past 2 years, it's probably my stent causing the pain.
Anyway, waiting back on both the biopsys and cultures they took. Due to the inflammation and low lung funtion, my docs say that if an infection doesn't show it's ugly head, then it's most likely chronic rejection I've been dealing with all this time. Pretty scary, but not exactly a surprise. I should get results in a week, so prayers would be wonderful. Thanks friends!

Pancreatitis

It's been so long since I've posted anything on here, for that I am sorry.

I'm currently in the hospital. One week ago today I started having the all too familiar stomach pain that I used to get years and years ago when I would have pancreatitis. For those who have never had pancreatitis, they say it's one of the most painful things to have to go through and I can honestly say it is. I tried drinking some milk and went to lay down in bed hoping it would go away on it's own. Within four hours I was hurting so bad I couldn't find a comfortable position to sit, lay or stand. I ended up calling the hospital and asked to speak to the doctor on-call for the weekend. He called me back and said I needed to be seen in the ER as soon as possible. So, Benito packed me a bag and we hit the road to Sacramento (an hour drive from where we live). Since our puppy destroys things when left at home, we had to bring her with us, which meant we had to take Benito's truck so she could lay down in his back seat. My car has leather seats and she's already made a rip in one spot, so I don't trust her alone in my car. That hour drive to Sacramento in his bumpy truck was Awful. The pain increased with every bump on the road. I felt so bad for Benito... Every time he would turn to look at me he looked so helpless and in pain himself seeing me that way.
So we got to the ER and luckily we didn't have to wait to be seen. I was hardly able to explain what was going on because the pain kept taking my breath away, but once my vitals were taken and iv started they were able to give me a dose of pain medication. Such a relief! It brought my pain down from a 10 out of 10 to a 7 out of 10... I was able to at least talk again and the nausea from being in such pain was lifting. The lab tests had shown that my lipase (pancreatic enzyme count) levels were 1,900 when the normal is 80. I definitely had pancreatitis. I was admitted that night. There really isn't much treatment for pancreatitis. Basically you need to stop taking anything by mouth (no eating, drinking, or even chewing gum) so that the pancrease doesn't have to work to release enzymes into the stomach to digest the incoming food. So they put me NPO (nothing by mouth) and started me on iv fluids and pain medication around the clock.
Yesterday was the first day I felt a great deal better. My pain was down to 5 out of 10 without any iv pain meds. I was able to eat and not hurt afterward. It was looking like I would be going home the next morning. Unfortunately I woke up this morning at 7am with 10 out of 10 pain again and nausea. After two doses of iv morphine my doctor came in and said she was putting me back on a clear liquid diet and won't be going home after all.
Needless to say this has been a very long week and I'm getting pretty bummed out. I miss being home, but mostly I miss Benito. He's been coming to visit for a few hours after work each day, but it's just not the same. At the moment I'm in 8 out of 10 pain and haven't eaten anything since last night. I was hoping this bout of pancreatitis would be a quick one, versus my previous times with it when I was younger that lasted up to 6 weeks.
Luckily my boss has been very understanding of the time I need to take off. I'm in the process of changing major's in school, so I'm not missing school because of being here, so I do have that to be thankful for. I found out a few nights ago that the hospital just started offering free wifi for their patients, which really has helped me from getting too bored.
I should stop for now. This has become quite a long post. I'll be updating again soon.

By the way, I've started my very first team for this year's Great Strides walk. Please visit my Great Strides homepage to make a donation or sign up to be part of my team! Thank you :)

http://www.cff.org/Great_Strides/LeahBailey6380