This year's Great Strides walk was a huge success!!
Although I was still recovering from a bronch only 3 days before and I was feeling pretty darned sick with kidney/liver issues, I still managed to make it to the walk. I didn't walk this year, but stayed back with my mom and a fellow CFer friend of mine and waited for my team to walk for me. The Iron lungs raised around $3,500 this year that is going directly toward research for a cure for this awful disease! A big THANK YOU to all who donated and/or walked this year! Here is a link to my Picasa album of all the pictures we took at the walk!
Great Strides 2013 Photos
Showing posts with label Great Strides. Show all posts
Showing posts with label Great Strides. Show all posts
Tuesday, May 21, 2013
Saturday, April 13, 2013
Life happens in between blog posts
Howdy! I can just imagine your eyes have bugged out in complete SHOCK to see that I have posted an update to my blog. Please blink a few times and continue reading...
6 months since my last update... Wow!
First off, I have to tell the world that I am in LOVE with our new home! I'm still in shock every time I wake up in this beautiful home. Being a homeowner had always been a dream, but I had no idea I would love it this much! The flowers that I planted in January are now starting to bloom and have made our home even more beautiful. I walk around outside just about every day to admire the blooming flowers that I planted or that the previous owner had planted and are just now showing their beauty. Once we got the essential living things unpacked, organized, and decorated, we kind of stopped cold with painting and doing all the things we had planned on doing once we moved in. It's just so nice to be able to relax in your own home and not be rushed to paint the spare bathroom, ya know?!? Another huge plus to our move is that we have made some amazing friends that just so happen to be neighbors. These two couples are so caring and generous that there have been a few times where after a bronch or when I'm just not feeling well, these couples would bring over a home cooked dinner for Benito and I. At one dinner, the couple went as far as bringing paper plates and plastic cups so we wouldn't even have to worry about clean-up afterward. We feel so blessed to have found such amazing people to call friends.
The last time I updated I had talked to my doctor about planning on getting things in order for when the need to be re-listed for transplant came to a head. Since then I have been on a roller coaster of whether or not the drop in lung function is due to chronic rejection coming back or my stenosis causing more problems than usual. Just this last Monday I had CF clinic and blew a 36% fev1 with my PFTs! So we came to the exciting conclusion that my 10% drop in lung function is purely because the stenosis gets SO closed up (literally pin sized). What a relief it was to see my PFTs back up to my previous baseline! So now as far as retransplant goes, I'm in no rush to get re-evaluated and put back on the list for a second transplant. We still need to be hyper aware of any changes, so if/when the times comes where I need to be listed quickly, I'll be ready. In the meantime, the ongoing issues with the stenosis is my main struggle. I have already had 4 bronchs this year to open up my airway and it seems that each time I go in to have it opened, it's closed off even more than the time before. I wish there was a long term solution to the problem, but for now the only thing we can do is continue to go have the airway lasered open once I feel like it's gotten too narrow.
Now, on to the latest news that I wanted to share:
A week ago I had my annual dermatology appointment where they check me head to toe for anything suspicious that could potentially turn into skin cancer. Being on the immunosuppressive drugs for 8 1/2 years now, plus the 15 months of photopheresis treatments I did has made me much more prone to cancers, especially skin cancers, so I have to be very aware of any changes in my skin. I have had about 6 or 7 pre-cancerous spots frozen off, but nothing serious has ever come up. During the visit last week I told the dermatologist that the spot they have previously frozen 3 times just comes right back every time, so she took a biopsy of it just to be on the safe side. Five days after the biopsy I got a call from the dermatologist herself saying that the biopsy tested positive for squamous cell carcinoma, the second most common forms of skin cancer. She gave me two choices, I could: A) have the skin surrounding the carcinoma cut away, then stitched up to close the large opening. This will most likely cause a large scar and because of the stitches, has a larger potential of infection. Or, I could: B) do a scrape and burn procedure where they would scrape scrape scrape, then burn the site with a 1,200* cauterizing tool, and repeat these steps over and over with the last round of scrapes being sent to pathology to make sure it was cancer cell free. I couldn't care less about the scar, but the increased risk of infection with stitches made me choose the scrape and burn method. I have the removal scheduled for next Friday, April 19th. My father and his wife had a little girl that was diagnosed with cancer at 1 year and later passed away at 5 years old, so the big C word is terrifying in my family. I made sure to try and break the news of this skin cancer gently to my family before making it public, so I could explain the best I could about the risks and treatments before they could think the worse. I'm very optimistic that I won't have to worry about this specific spot again after the removal next week. I will however be much more aware of any spots that come up and will insist that my dermatologist biopsy anything that continues to come back after two freezings.
Lastly, the most exciting news to share is that since my last update I celebrated a very important birthday... I turned 30!! Growing up with this nasty disease and watching so many of my friends pass away because of it, I never imagined I would still be here to see 30 years old, but here I am!! Happier now than I ever have been, too! :)
Here's to another 30 years!!!
Here are a few photos of the skin cancer on my arm. Everyone needs to be super diligent with their sunscreen when they are out and about! The majority of my spots I get are on my forearms and hands and I can only imagine it's because that's where I'm most exposed while driving. I'm going to be much better about applying sunscreen before driving!
Before I end this update, I want to add that I'm very excited to be leading a team at the Great Strides walk for the third time on May 18th. If you're interested in joining my team, or donating toward my walk then PLEASE visit my Great Strides page! You can find my page by clicking on the Great Strides banner link on the upper right hand side of my blog. Thank you!!
6 months since my last update... Wow!
First off, I have to tell the world that I am in LOVE with our new home! I'm still in shock every time I wake up in this beautiful home. Being a homeowner had always been a dream, but I had no idea I would love it this much! The flowers that I planted in January are now starting to bloom and have made our home even more beautiful. I walk around outside just about every day to admire the blooming flowers that I planted or that the previous owner had planted and are just now showing their beauty. Once we got the essential living things unpacked, organized, and decorated, we kind of stopped cold with painting and doing all the things we had planned on doing once we moved in. It's just so nice to be able to relax in your own home and not be rushed to paint the spare bathroom, ya know?!? Another huge plus to our move is that we have made some amazing friends that just so happen to be neighbors. These two couples are so caring and generous that there have been a few times where after a bronch or when I'm just not feeling well, these couples would bring over a home cooked dinner for Benito and I. At one dinner, the couple went as far as bringing paper plates and plastic cups so we wouldn't even have to worry about clean-up afterward. We feel so blessed to have found such amazing people to call friends.
The last time I updated I had talked to my doctor about planning on getting things in order for when the need to be re-listed for transplant came to a head. Since then I have been on a roller coaster of whether or not the drop in lung function is due to chronic rejection coming back or my stenosis causing more problems than usual. Just this last Monday I had CF clinic and blew a 36% fev1 with my PFTs! So we came to the exciting conclusion that my 10% drop in lung function is purely because the stenosis gets SO closed up (literally pin sized). What a relief it was to see my PFTs back up to my previous baseline! So now as far as retransplant goes, I'm in no rush to get re-evaluated and put back on the list for a second transplant. We still need to be hyper aware of any changes, so if/when the times comes where I need to be listed quickly, I'll be ready. In the meantime, the ongoing issues with the stenosis is my main struggle. I have already had 4 bronchs this year to open up my airway and it seems that each time I go in to have it opened, it's closed off even more than the time before. I wish there was a long term solution to the problem, but for now the only thing we can do is continue to go have the airway lasered open once I feel like it's gotten too narrow.
Now, on to the latest news that I wanted to share:
A week ago I had my annual dermatology appointment where they check me head to toe for anything suspicious that could potentially turn into skin cancer. Being on the immunosuppressive drugs for 8 1/2 years now, plus the 15 months of photopheresis treatments I did has made me much more prone to cancers, especially skin cancers, so I have to be very aware of any changes in my skin. I have had about 6 or 7 pre-cancerous spots frozen off, but nothing serious has ever come up. During the visit last week I told the dermatologist that the spot they have previously frozen 3 times just comes right back every time, so she took a biopsy of it just to be on the safe side. Five days after the biopsy I got a call from the dermatologist herself saying that the biopsy tested positive for squamous cell carcinoma, the second most common forms of skin cancer. She gave me two choices, I could: A) have the skin surrounding the carcinoma cut away, then stitched up to close the large opening. This will most likely cause a large scar and because of the stitches, has a larger potential of infection. Or, I could: B) do a scrape and burn procedure where they would scrape scrape scrape, then burn the site with a 1,200* cauterizing tool, and repeat these steps over and over with the last round of scrapes being sent to pathology to make sure it was cancer cell free. I couldn't care less about the scar, but the increased risk of infection with stitches made me choose the scrape and burn method. I have the removal scheduled for next Friday, April 19th. My father and his wife had a little girl that was diagnosed with cancer at 1 year and later passed away at 5 years old, so the big C word is terrifying in my family. I made sure to try and break the news of this skin cancer gently to my family before making it public, so I could explain the best I could about the risks and treatments before they could think the worse. I'm very optimistic that I won't have to worry about this specific spot again after the removal next week. I will however be much more aware of any spots that come up and will insist that my dermatologist biopsy anything that continues to come back after two freezings.
Lastly, the most exciting news to share is that since my last update I celebrated a very important birthday... I turned 30!! Growing up with this nasty disease and watching so many of my friends pass away because of it, I never imagined I would still be here to see 30 years old, but here I am!! Happier now than I ever have been, too! :)
Here's to another 30 years!!!
Here are a few photos of the skin cancer on my arm. Everyone needs to be super diligent with their sunscreen when they are out and about! The majority of my spots I get are on my forearms and hands and I can only imagine it's because that's where I'm most exposed while driving. I'm going to be much better about applying sunscreen before driving!
Picture 1) pre-biopsy
Picture 2) five days post biopsy. My dermatologist thinks that it's healing so much slower than even my norm because the cancer cells won't allow it. Hopefully once they remove ALL the cancer cells it will heal quickly.
Before I end this update, I want to add that I'm very excited to be leading a team at the Great Strides walk for the third time on May 18th. If you're interested in joining my team, or donating toward my walk then PLEASE visit my Great Strides page! You can find my page by clicking on the Great Strides banner link on the upper right hand side of my blog. Thank you!!
Wednesday, August 1, 2012
Whoa! August 1st already?!?
I've come out of my cave! I'm so sorry I haven't written an update in 4 months. I hope you can forgive me!
Let's see...
Since I've last posted, I've been keeping pretty busy and have definitely had my ups and downs with my health. On May 19th I got to lead a team at the Sacramento Great Strides walk! This was my second year leading a team, but this year was so much more fun! For starters I found a wonderful shirt printing business locally that donated their services to print team shirts for all of The Iron Lungs (our team name). This was the first time I've ever been able to provide shirts for my team, so it was so awesome to see all the people walking around wearing our team logo. We had 28 walkers this year on The Iron Lungs, 15 more than the last time we walked (2 yrs ago). I can't tell you how much it warms my heart to see my friends and family (and Benito's co-workers) gather for such a worthy cause. We had a goal set at $3,000 overall for the team, but we surpassed our goal and raised a whopping $4,070.00 making this our most successful year yet! I'm so grateful for all those on my team and can't wait to do it all over again next spring! (See above photo of MOST of our team! The family of my dear friend Kristina Love (whom passed away last fall) walked with us and made up shirts of their own saying "Love for Leah"!
On July 6th I did my last photopheresis treatment! The protocol is a total of 30 treatments and as of July 6th I'm free of the strict schedule of getting my blood tanned ;) My doctor had mentioned a few months ago the possibility of doing some sort of maintenance schedule once my 30 treatments were up, but he has yet to set that up. I'm so extremely grateful that he was willing to try photopheresis on me when nobody else was willing to treat my rejection. I'm now in "remission" and am happy to see my lung function stable again. To clarify, because I get asked a lot how much lung function I've gained back, once someone has chronic rejection (and especially for how long it went untreated in my case) the damaged tissue is no longer viable. I will not get that lost lung function back, no matter how hard I tried, but what photopheresis DID do was STOP the progression of damage done to my lungs by my immune system. I'm currently stable at 33% lung function (fev1) and 10% small airway function (fef25-75). I really couldn't ask for more of a response from the photo treatments.
Now, what most of you don't know is that Benito and I have been looking since late winter for our first home. Over the course of about 5 months we've seen countless houses and even put offers on 6, yes 6 homes! 5 of those offers were not accepted because of different reasons. We waited as patiently as we could and the right home finally came along. The 6th offer was accepted and we've since been doing all the inspections, paperwork, etc. to get into our first home! Our close of escrow is only 2 weeks away and we really couldn't be more excited. I've had the pleasure of meeting the seller and am even more confident that this is the right home for us now that I see how absolutely sweet this woman is. She's doing everything she can to make sure this home is ready for us to move into by fixing all the necessary issues before we even have to request them to be fixed. What a huge weight off our shoulders to know the home is in the best possible condition before we move into it!
So, the home is 1,299 square foot. 4 bedrooms, 2 bathrooms. GREAT covered patio in the backyard that is just begging for us to barbeque under! I just can't wait to move in and make this home OURS. I can't wait to give Roxy (our dog) a backyard to play in! The neighborhood is absolutely wonderful and I even had the opportunity to introduce myself to a few neighbors at a yard sale that was going on the same day I was there for an inspection! I can't wait to have neighbors that I can associate with and even borrow a cup of sugar from when needed ;)
My health is so-so. I'm still having problems with my breathing being too tight and wheezy, and my pain level fluctuates dramatically for no reason I can figure out. I'm just trying to ignore as much of the bad days as I can and focus on the good ones. I've had 3 bronchs since my last update. Although I felt like the brachytherapy treatment that my dr did on me in March made me feel better than I had in a very long time, it did not last as long as my dr had hoped, so he's skeptical to try it again just yet. He mentioned wanting to try and remove the existing stent I have in my right main bronchi that has fallen lower than my stenosis, but he and my CF doctors are hesitant to do that because of the risk of blood loss. That stent has been there for about 4-5 years now and scar tissue has grown all around it, so removing it is now quite a dangerous task that would require the operating room, general anesthesia, and a cardio-thoracic surgeon to perform. I'm not so sure removing the stent and replacing it with another will help my breathing, but I'm curious if it would help my pain because my pain is always in the exact same place, which also happens to be where you can feel the stent "buzzing" when I breathe. I don't think that is as coincidental as my doctors want to believe. I'm pretty sure the pain I feel has a lot to do with the stent and am considering having the stent removed purely for that reason. We'll see though... The possibility of having to have an emergency lobectomy because of tearing during removal scares me enough to really think about how necessary it is.
So that's that. Nothing else really new going on. I hope everyone is having a wonderful summer!!
Hugs & stuff :D
Tuesday, February 28, 2012
Eeeek! Has it really been over 5 months since I've posted on here?!? I'm SO sorry if I worried anyone. I'm doing okay... I've definitely had less ups than downs in the past 5 months and it's just made me feel like crawling into a cave and hibernating until everything works out on it's own, but of course I can't do that now, can I? ;)
Only 2 weeks after my last post I lost another very close friend to Cystic Fibrosis. Christen and I met at CF camp back in 1990 and have been pen-pals ever since. A few years ago she switched hospitals and started seeing the same doctor I go to, so when she was admitted into the hospital I was able to come visit and see her again after so many years just communicating via email, facebook, or telephone. I was "lucky" enough to be able to spend a few days with Christen prior to her passing away and had some long talks to her and her mom about Christen being ready to leave this world. Although talking about that with her was very difficult (especially after having said goodbye to Kristina only weeks prior), I'm glad I got to have that time with her and it helped me knowing that she was ready. I wish I could say the passing of my two closest CF friends wasn't completely devistating to me, but it was and I'm still grieving over the loss of two such beautiful and loving friends. It breaks my heart knowing that I will not see their smiling faces again until it's my own time to leave this world (which, for the record, is a very long time from now).
So as you can imagine, my holidays were difficult to get through, but they came and went and I turned another year older just before the New Year. I'm so extremely grateful to everyone who has helped me get to this age that I never expected to see. Life really is precious!! After tomorrow I drop down to every 6 weeks for the photopheresis treatments and I'll be completely finished by July! So far it looks like they are keeping the rejection from progressing any more and I haven't lost any significant lung function since last May!! I'm really so happy I finally found a doctor willing to treat me and not tell me retransplant was my only option. Yes, it's nice to know I can get another transplant later down the road when I really need one, but that time is not now, thank God. Besides the rejection at bay, my health has been really rough the past 5 months. The stenosis (narrowing) in my airway has been giving me a lot of problems so I've gone in twice now to have it lasered to open it up more and although I can feel them lasering the airway (burns and I can actually smell my lungs burning), and I feel pretty awful for a good week afterward, I feel like this is the longest periods of relief I've gotten after any intervention with the airway. I still don't have a long time of feeling able to breathe well, but it's better than not lasering. I was referred to a radiation oncology doctor in December and Benito and I both talked with her about a treatment called Brachytherapy. Aparently one doctor says they've done this treatment previously on at least one patient whom had "somewhat" similar circumstances as I, and another doctor is saying no, they've never done this before, but they are willing to try it (in theory it should work). So the brachytherapy machine was down back in December and they said they expect it to be back up and running late January. I haven't heard back from them about scheduling it, but whenever it gets scheduled I am to be scheduled for a bronch and lasering no more than 5 days prior because they want my airway to be at it's most open during the brachytherapy. Now, here is what brachytherapy is as I understand it: Brachytherapy is a form of topical radiation to a specific area, in my case the stenosis in my right main bronchi. They'll go down in my lung with a tube and figure out exactly how far down said tube needs to be in order to be "sitting" on the stenosis. Once it's placed they'll x-ray and double check it's in the correct place and tape it down to my face so it can not move. After the tube is secure they'll thread a wire which has a radioactive tip on it down the tube and have it come out just at the end of the tube so the radioactive tip will be on the stenosis. They will leave the radioactive wire there for however much time they've calculated is enough time to be beneficial, but not enough to do serious damage then pull the wire and tube back out. The idea is that the radiation will break down the cells of the scar tissue that is my stenosis and after a period of time it will have broken all the scar tissue cells down and I'll have an open airway again. The tough part is knowing how much is enough, but not too much to cause the good cells that are my actual airway to break down. Oh, and I have a much higher risk of lung cancer after 10yrs they said if I do this treatment. So, it's something to think about, and it does sound kind of desperate, but I AM desperate. I am so tired of feeling like I'm ready for another transplant when I still have 15% more lung function than I did at the time of my first transplant. This stenosis at it's worse (which is like 90% of the time) feels like an extremely SEVERE asthma attack in which medications do not help. So, I ask you, wouldn't you be desperate too?
I have day 2 of my photo treatments for this month tomorrow and I need to get to bed. They still take a lot out of me and I feel like I could sleep for a few days after each set of treatments. Again, I'm very sorry I took so long to get on here and update you all. I hope you can forgive me... It's just been a very hard year already ;)
This year I'll be leading a Cystic Fibrosis Great Strides walk team again, so if you would be so kind to visit my Great Strides page....
www.cff.org/Great_Strides/leahbailey92504
Only 2 weeks after my last post I lost another very close friend to Cystic Fibrosis. Christen and I met at CF camp back in 1990 and have been pen-pals ever since. A few years ago she switched hospitals and started seeing the same doctor I go to, so when she was admitted into the hospital I was able to come visit and see her again after so many years just communicating via email, facebook, or telephone. I was "lucky" enough to be able to spend a few days with Christen prior to her passing away and had some long talks to her and her mom about Christen being ready to leave this world. Although talking about that with her was very difficult (especially after having said goodbye to Kristina only weeks prior), I'm glad I got to have that time with her and it helped me knowing that she was ready. I wish I could say the passing of my two closest CF friends wasn't completely devistating to me, but it was and I'm still grieving over the loss of two such beautiful and loving friends. It breaks my heart knowing that I will not see their smiling faces again until it's my own time to leave this world (which, for the record, is a very long time from now).
So as you can imagine, my holidays were difficult to get through, but they came and went and I turned another year older just before the New Year. I'm so extremely grateful to everyone who has helped me get to this age that I never expected to see. Life really is precious!! After tomorrow I drop down to every 6 weeks for the photopheresis treatments and I'll be completely finished by July! So far it looks like they are keeping the rejection from progressing any more and I haven't lost any significant lung function since last May!! I'm really so happy I finally found a doctor willing to treat me and not tell me retransplant was my only option. Yes, it's nice to know I can get another transplant later down the road when I really need one, but that time is not now, thank God. Besides the rejection at bay, my health has been really rough the past 5 months. The stenosis (narrowing) in my airway has been giving me a lot of problems so I've gone in twice now to have it lasered to open it up more and although I can feel them lasering the airway (burns and I can actually smell my lungs burning), and I feel pretty awful for a good week afterward, I feel like this is the longest periods of relief I've gotten after any intervention with the airway. I still don't have a long time of feeling able to breathe well, but it's better than not lasering. I was referred to a radiation oncology doctor in December and Benito and I both talked with her about a treatment called Brachytherapy. Aparently one doctor says they've done this treatment previously on at least one patient whom had "somewhat" similar circumstances as I, and another doctor is saying no, they've never done this before, but they are willing to try it (in theory it should work). So the brachytherapy machine was down back in December and they said they expect it to be back up and running late January. I haven't heard back from them about scheduling it, but whenever it gets scheduled I am to be scheduled for a bronch and lasering no more than 5 days prior because they want my airway to be at it's most open during the brachytherapy. Now, here is what brachytherapy is as I understand it: Brachytherapy is a form of topical radiation to a specific area, in my case the stenosis in my right main bronchi. They'll go down in my lung with a tube and figure out exactly how far down said tube needs to be in order to be "sitting" on the stenosis. Once it's placed they'll x-ray and double check it's in the correct place and tape it down to my face so it can not move. After the tube is secure they'll thread a wire which has a radioactive tip on it down the tube and have it come out just at the end of the tube so the radioactive tip will be on the stenosis. They will leave the radioactive wire there for however much time they've calculated is enough time to be beneficial, but not enough to do serious damage then pull the wire and tube back out. The idea is that the radiation will break down the cells of the scar tissue that is my stenosis and after a period of time it will have broken all the scar tissue cells down and I'll have an open airway again. The tough part is knowing how much is enough, but not too much to cause the good cells that are my actual airway to break down. Oh, and I have a much higher risk of lung cancer after 10yrs they said if I do this treatment. So, it's something to think about, and it does sound kind of desperate, but I AM desperate. I am so tired of feeling like I'm ready for another transplant when I still have 15% more lung function than I did at the time of my first transplant. This stenosis at it's worse (which is like 90% of the time) feels like an extremely SEVERE asthma attack in which medications do not help. So, I ask you, wouldn't you be desperate too?
I have day 2 of my photo treatments for this month tomorrow and I need to get to bed. They still take a lot out of me and I feel like I could sleep for a few days after each set of treatments. Again, I'm very sorry I took so long to get on here and update you all. I hope you can forgive me... It's just been a very hard year already ;)
This year I'll be leading a Cystic Fibrosis Great Strides walk team again, so if you would be so kind to visit my Great Strides page....
www.cff.org/Great_Strides/leahbailey92504
Saturday, April 10, 2010
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
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
Sunday, May 17, 2009
Great Strides 2009
Hello friends and family!
Yesterday was Chico, California's very first Great Strides walk, and let me tell you... It was a success!! Even though it was HOT outside, we all had a Great time with one another raising awareness and donations towards finding a cure for Cystic Fibrosis.
The tally hasn't been in yet, but I think we did exceptionally well in raising donations this year. Even though our economy isn't doing so well right now, people are still eager to give to such a good cause! It warms my heart to be surrounded by such caring people. Thank you!!
Our team leader (and fellow CFer) unfortunately had to be admitted into the hospital the night before the walk, so she couldn't be there with us, but like I told her: I'm glad she put her own health first. I was grateful to have some of my closest friends there to support me; I just can't thank them enough!
Here are a few pictures I took at the walk. I took a few others with my 35mm, so once I get those developed I'll be able to post more.
Thursday, March 12, 2009
It's that time of year again (and quick update)
Hello All-
It's been over a month since my last posting and I'm so sorry for that. Life has been moving along and I've been trying to keep up with it.
I've been feeling somewhat better since my last posting. I'm still having the same side pain, but I think I'm learning how to better deal with it. I'm in my 4th week of a written communications class and am Extremely happy with how well it's going, as well as the grade I'm getting in it! I must say though - I'll be happy when I'm done with my General Ed!!
I've registered and sent out emails for this years Great Strides walk, so I thought I would also say something here about it. My very good friend, Jennifer is helping put together a walk this year in a much more local location. Benito and I are both excited to help man the stations on the big day, as well as participate in the walk. I reached my goal last year of $1,000 and have set the same goal again for this year. I would be ecstatic if I surpassed this years goal though! With your help, I could very well do it (hint hint). Please visit my Great Strides web page and consider making a donation. That web address is:
www.cff.org/Great_Strides/LeahBailey6180
Thank you so much!
It's been over a month since my last posting and I'm so sorry for that. Life has been moving along and I've been trying to keep up with it.
I've been feeling somewhat better since my last posting. I'm still having the same side pain, but I think I'm learning how to better deal with it. I'm in my 4th week of a written communications class and am Extremely happy with how well it's going, as well as the grade I'm getting in it! I must say though - I'll be happy when I'm done with my General Ed!!
I've registered and sent out emails for this years Great Strides walk, so I thought I would also say something here about it. My very good friend, Jennifer is helping put together a walk this year in a much more local location. Benito and I are both excited to help man the stations on the big day, as well as participate in the walk. I reached my goal last year of $1,000 and have set the same goal again for this year. I would be ecstatic if I surpassed this years goal though! With your help, I could very well do it (hint hint). Please visit my Great Strides web page and consider making a donation. That web address is:
www.cff.org/Great_Strides/LeahBailey6180
Thank you so much!
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