Grieving

Good afternoon! I hope you all had a great holiday spent with the ones you love most in life. Benito and I had a great Christmas in Reno with his mom and step-dad. It snowed Christmas night and the next day, so we got to have the white Christmas we were hoping for. Unfortunately we had to drive home the day after Christmas while it was snowing and were very grateful for deciding to rent a 4 wheel drive truck for the trip! Our New Year's eve was spent at home with a few friends. Benito barbecued burgers on his new BBQ his mom had gotten him for Christmas. We all enjoyed margaritas and played the Wii up until the 1min countdown to the new year. Once we got our fix of Dick Clark we fired the Wii back up for more Wii Resort gaming! Benito and I had a Great time and stayed up well past 3am laughing along with our friends. I had another birthday in between Christmas and New Years, but we didn't do much at all. Benito and I just stayed home and watched movies together. I am very grateful for every birthday I'm given. God knows I never thought I would ever see 28 years old!

That being said, I guess it's time to move onto more dreary topics that need to be addressed.

Two days ago (Monday) I had CF clinic. Lucky for me, Benito took the day off and was able to come along with me for support... We had no idea just how much I would need that support until we actually saw my doctor. After blowing into the machine to measure my pft's (lung function test) my numbers were at an all time low since pre-transplant at 32%. We tried using my inhaler to see if the low number was just because I was a little tight. Post inhaler my pfts only got up to 35%, still an all time low since pre-tx. I had lost 4-5% lung function in just 2 1/2 months, which is extremely alarming, especially since in that 2 1/2 months I was on antibiotics for about 6 weeks trying to help my lung function.

So after the respiratory therapist left with the results and showed them to my CF doctor, my doctor came in with a grim look on his face. He began to ask me how I was feeling and did a physical exam, listening to my lungs very carefully until I was dizzy from deep breathing. He said my lungs sound very noisy on Both sides, not just the right side like usual. He said he can hear air flowing very loudly, which suggests that there is a lot of narrowing in my airways and my lungs are working very hard to move air throughout my lungs. I told him that I've started to get so out of breath at times that I'll go from dizzy to everything getting dark in a matter of seconds (imagine a dimmer switch on a light and the light going from bright to almost off). My oxygen saturation is still very good while at rest when checked at clinic, but who knows what happens when I get extremely short of breath.

My doctor basically went on to tell me as gently as he could that I shouldn't expect to get better, only worse from here on out. He told me I could live the way I am now for years, but we both know that the rate in which I'm losing lung function that isn't very likely. He is going to speak to the doctor there at UC Davis who evaluated me for my 1st transplant and see if he can find me a place to be evaluated at for a second transplant. I need to come to realization that as much as I don't feel ready, it's time to get back on the list and pray that a set of lungs become available in time. My CF doctor assured me that I'm a great candidate for a second transplant, but that I need to be aware that a second transplant is much riskier than the first one. Why? Because the surgery itself will take much longer because of the scar tissue that has grown and is now holding my donor lungs against my chest wall. The longer I have to be under anesthesia, the more dangerous, plus the surgeon has to be very careful while separating my donor lungs from the chest wall so not to lose too much blood. I have managed to keep my weight up along with my "positive" attitude (all things considered) and my compliancy in the past with keeping up with medication and doctor visits, so I'm a good candidate for a second transplant. Of course this is only half of it... I'll need to "pass" all my evaluation testing on my heart, kidneys, etc. before being considered for a re-transplant. And of course there is the issue of finding a center to do it. I just found out that the amazing surgeon that did my first transplant has moved on to a different hospital (in Connecticut), so the man I feel like I can trust with my life is no longer available to perform my next life threatening surgery. *sigh*

My CF doctor spent a long time in my clinic room talking to Benito and I about what to expect and what I should be doing. At one point I couldn't hold back the tears any longer and broke down. I know he wasn't intending it to, but the way he was talking to me, it sounded like I was getting a "quality of life" speech. You know the kind... Go home and do what makes you happy while you still can. He assured me that he wasn't giving me a "hospice" speech, but he really wants me to think about what's important to me right now. He wants me to understand that I will not [no matter how hard I worked] be able to get the lost lung function back and that I should let myself grieve for that loss.

The thing is that I'm not only grieving for that loss, but what that loss has taken away from me. Benito and I are supposed to be planning a wedding right now, but instead we're having to plan on a transplant that could very well take me away from him forever. I've wanted for as long as I can remember to be a mother and up until Monday, I had hopes of accomplishing that dream some day. If I can't get better, how can I carry, then care for a baby? Is it so wrong for me to want a normal life with the man I love? I feel like I've worked so damn hard for so damn long and now I'm supposed to start all over again?

I hate to say it, but it was almost easier the first time around. With my CF lungs, I had 21 years to get used to the idea of getting sicker. I was at 80% only 3 years ago with the whole world in front of me. In 3 years I've gotten this sick and I don't feel like it's been enough time to get used to the idea of needing another transplant. With my CF lungs I had things I could do to help improve my lung function and how I felt. I could do a "tune-up" of IV antibiotics that would make me feel a little bit better after 2-3 weeks. I did pulmonary rehab and saw a huge difference in how I felt and my lung function improved. Now I'm told that nothing is going to improve my lung function again. Pulmonary rehab won't even help, but "being active will help your mood". *sigh*

I emailed my academic advisor and explained what's going on. It's been a year since I've been able to complete a class, so I told her that I'm going to stop school for now and maybe once I'm recovered from my next transplant I'll start back up again. It just seemed like it was one stress that I could avoid, so it needed to go. It didn't seem logical to keep trying to take classes when I'm just getting sicker and am already having trouble being able to finish even one class at a time. She was very encouraging and said that if any point before October I wanted to start back up, I will have my scholarship waiting for me. She even said that if it took longer than October, she may be able to pull some strings with the director and see if I could re-enroll and pick my scholarship back up then.

So, that's it. As you can imagine, my mind is going a million miles an hour right now. I'm sorry if any of this blog update sounded confusing. It's how my brain is functioning right now, so it's hard to make much sense out of anything in my head right now. I came home on Monday and went directly to bed at 6pm and I'm just now starting to feel like I can get out of bed again. Whenever I wasn't sleeping yesterday I was crying, so sleeping was my choice activity. I'm still feeling pretty weak hearted, but I don't want Benito to come home from work a second day to me being in my pajamas still and barely awake. I need to be strong for him; I know he can't keep holding us both up all by himself.

I'd really appreciate any prayers you can offer up to us right now. We need another miracle.

This and That

First of all, I want to apologize to my readers for not posting an update in so long. I know a few of you have been worried about me since it seemed I'd gone MIA for such a long time.

I'm doing okay. I could feel a lot better, but then again I could definitely feel a lot worse, so I'm grateful for that.

Not a lot has changed since I've last updated. I'm still not sure I even have a transplant doctor since my CF docs have had no luck getting in touch with my original transplant doctor regarding my care. How does this make me feel you ask? Nervous, disappointed, scared, uncertain, extra cautious and most of all I feel like I'm in limbo. I don't know what my future holds in terms of my transplant care. I am being more cautious than I normally would to avoiding getting sick because I don't want getting sick with a cold or flu to speed up my rejection (an increase of white blood cells in my body from being sick will work against me, making it easier for my body to reject my donor lungs). I've been staying home as much as possible and avoiding crowded stores at all costs. Thank goodness for Amazon.com or I wouldn't have been able to get any Christmas shopping done! My personal plan is to really make myself irritating and loud toward my doctors. The squeakie wheel gets the attention, right? I'm going to be a squeakie wheel all right!! I'm SO tired of feeling like this. I can hardly do any kind of physical activity without taking at least a break half way through it. I was putting clean sheets on a blow-up mattress the other day because my father in-law was coming to stay the night and I barely got the fitted sheet on before I couldn't catch my breath. It took me an hour and a half just to put sheets on that bed; that is absolutely Crazy! I feel like I've worked SO hard to feel well and although I've always done Exactly what I've been told to do in terms of my health care, I didn't do enough because here I am sleeping with a lot of pillows again, up half the night feeling short of breath, and planning my days around small windows in which I feel a little closer to normal.

This post is starting to sound like a pity party, but I don't want it to, so I'm going to go onto other news! ;)

Benito and I drove to Santa Rosa on the 11th and picked up my niece and nephew so they can stay with us while my sister and her boyfriend got everything packed up and moved back to Yuba City. We had the kids (8 & 6 years old) for a week and let me tell you, although the kids were good during their stay with uncle Benito and auntie Leah, I was Exhausted after that week was up! It's tough keeping kids that age cooped up in the house during a very rainy week. They watched countless movies (thank goodness for Netflix's "Watch Now" feature!), played Wii, picked out and decorated the Christmas tree, made Christmas ornaments for said tree, and made a trip to the library. We had a great time together. Benito and I had missed them so much while they were living in Santa Rosa for the past 9 months; we're just so happy to have them living across town again!

We'll be spending a white Christmas in Reno with Benito's mom, step-dad, and 5 year old retired greyhound. Roxy will have her "aunt" to play with for a few days while Benito and I will enjoy a nice weekend with family cozied up by the fireplace. We spent Thanksgiving with my family, so Christmas was saved for spending with Benito's. Juggling families is going to be a difficult task to learn, but luckily neither of our families make us feel guilty when we can't spending a specific holiday with them. We're both very fortunate to not only get-along, but to love each other's family, so we're always happy to plan a visit with either one.

No big plans for the wedding yet. My maid of honor and I will be going to our first bridal expo in January, so I'm hoping to get a lot of helpful ideas and freebies or coupons to help with the wedding. Benito and I are hoping to either get married this next October or October of 2012. It's going to all depend on my health insurance and if we've found a way to make sure I'm as covered as I am now as a single woman. I absolutely Hate dealing with health insurance.

So that's about it. I hope everyone is doing well and is enjoying their holidays. Don't forget to glob on the hand sanitizer while out shopping!!

Merry Christmas and have a safe and happy New Year!!

What's New

Hey everyone :)
I'm terribly sorry I haven't posted on here in so long. I was pretty excited about making this blog, but then I got busy with life and haven't had a whole lot of time to be on the computer. After the new year I should be able to post more often.
I'm currently in the process of moving in with my boyfriend an hour away from where I've been living for my entire life. He and I both are really excited about me moving into his apartment. The driving back and forth has gotten old and it's just too hard to spend any time away from one another. My sister along with her family live in the City I'll be moving to, so I'm looking forward to spending more time with them. The moving has worn me thin, but I should be all done soon. I'm looking forward to the day that I can put my feet up and not feel like I should be packing.
I have been feeling pretty sick still. I'm having problems with the stent in my right airway growing scar tissue inside and around it, which leaves very little to no opening for air to pass down in my right lung. It's making me feel awful. I'm in a lot of pain, trouble breathing and not sleeping so well. I've been going back and forth to my transplant doctors to get bronchs and dilitations of the airway, but it just closes itself back up in a matter of a week or two. The three hours (one way) it takes to get to my doctor is getting exhausting in itself. My most recent bronch was yesterday. I talked to my doctor before they knocked me out and discussed what else we can do to keep the airway open for hopefully a longer period of time. Basically all he suggested was adding another stent inside of the existing one, so have two stents in that one area and hope for the best. Not exactly what I wanted to hear, but I guess it's something. My quality of life has been pretty bad the past few months because of this airway thing and I've had to take a month leave from school because I'm just not able to keep up with my 5 week fast paced classes.
I don't have any set Christmas plans yet. I'm sure I'll be spending it with my family, I just don't know who wants to host yet! ;) My best friend Megan and her husband will be home for a week visiting for the holiday, so I hope to see her a lot while she's home. I'm also looking forward to a girls lunch on the 27th with a few high school girlfriends.
I think that's about it. I'll try to post again soon. In case I don't get around to doing it later, I want to wish everyone a Very Safe and Happy Holiday!

Lots of Love!!!