This time 8 years ago I was on my way to San Francisco to undergo a life changing [and do I even have to add "saving"?] transplant. I can't believe it's been 8 years!
I have been reminded lately by quite a few people that I'm a lucky woman... Not too many people have been given a second chance to live like I have. One person in fact actually went as far as to say "8 years is a good run, you should be happy with that", as if I should just be content with the 8 years I've been given and not wish for more. Of course I want more! It's the want for more, the need to keep living that's kept me alive this long and I don't plan on being "happy" with anything less than a full and Long life. I deserve that as much as the next guy, right?
So I had CF clinic today and my doctor talked a little about retransplant. My PFTs were down to 26% a month ago and after 2 bronchs I'm only up to 29%, so he's thinking that I'm not just dealing with the stenosis anymore... He's suspecting that I'm in a slow rejection and it's time to start revamping my "resume" for transplant. What I mean by that is that I need to do all I can to make a transplant center WANT to transplant me. Yes, I'm a very compliant patient already, so no worries there. We need to start babying my kidneys, be one step ahead of any possible skin cancers, etc. Basically I need to make sure everything is as healthy as I can get it so a transplant center won't be worried about the rest of my body having problems after another transplant.
On to better news, shall we?
It's been a little over 4 weeks since we got the keys to our new house! We have been extremely busy every day unpacking, painting, organizing, cleaning, etc. We said goodbye to lazy weekends when we got our offer accepted and haven't had a single lazy weekend since! We're excited to be throwing our first little get-together in our new home this coming weekend. It's going to be a small shindig to celebrate our housewarming, Benito's belated birthday (we didn't have time to do much celebrating with the move), and my Breathday (transplant anniversary). We still have so much to do before we're ready for people to see the house, but hopefully we get it all done before the weekend and with time to spare!
I think that's about it for now. I'm sorry I don't update my blog too often, but I'm sure you can understand why ;)
I hope everyone is doing well and enjoying the beginning of a beautiful autumn!
Showing posts with label move. Show all posts
Showing posts with label move. Show all posts
Monday, September 24, 2012
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, April 26, 2011
Here we gooooooooo
I got the call yesterday that my insurance has approved the photopheresis treatments!! I was so happy I couldn't stop crying. I'm being given another chance to live; I just hope these treatments work and I can keep these lungs of mine for many more years to come!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
Thursday, April 14, 2011
Ask enough and you shall receive
First of all I want to thank the readers of my blog who continually come back for updates even though I do not always have new ones to share. I also want to apologize for not updating more often. I've never been the kind of person who is able to write just a little at a time, so I seem to put off writing updates because I know it will take a huge chunk of time to do so and can never commit myself to sit down long enough with my laptop and write. I owe it to you all as friends who have offered their support and prayers to me and my family to write more often and give you the updates you come to read. So I'm going to do my best to write at LEAST once a month (a suggestion given by one of my readers) and update you something about what's going on with me. It may not be a long update, but I'll try to at least let you know how my health is holding up at the time. :)
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
Saturday, December 20, 2008
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!!!
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!!!
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