Attached is the printout of images that I was given yesterday after my bronchoscopy. If you get grossed out with seeing graphic photos of someone's lungs then do Not scroll down.
I thought it might help to send this so everyone gets an idea just how bad I am when I say that my breathing is tight.
My right lung was completely closed off so I wasn't getting Any air to it for about a week. When it's closed off like this I'm literally only breathing with approx 12% lung function and with no supplemental oxygen, which I really need (the test to determine whether I need oxygen was done 3 days post bronch, when my airways were open, so they won't order oxygen for home). The scary part is that this complete closure is happening much more frequent and is becoming much harder to open back up. I still do not have an answer from UCSF whether or not they'll be willing to retransplant me.
I'm spending the day in bed sleeping or watching Netflix because my lungs hurt too much for me to move around.
This is a blog of a woman who is learning to LIVE after being given The Gift Of Life - a double lung transplant.
Showing posts with label UCSF hospital. Show all posts
Showing posts with label UCSF hospital. Show all posts
Wednesday, April 23, 2014
Thursday, March 6, 2014
A very long day, but my fight is still Stronger than this disease.
I started this as being just a Facebook post, but once I figured how long it was getting I figured I'd just include everything and post the same update on FB and my blog. I'm sorry for the multiple posts to those of you who follow me on here and Facebook.
As promised, here is a brief update on today's adventures at UCSF.
As we were told I had an appointment with one of the pulmonary tx doctors, I was also told that if time permits I may be able to see a few others from the lung transplant team. Admittedly, I know about 80% of the staff already from my past visits with my first transplant, but there are a few unfamiliar faces that I was hopeful to meet and put a name to.
The single new face I got to meet today was one of their new social workers. She, Benito, and I had a nice long visit and got a lot of worries and questions out of the way. Yay! I am so extremely happy with this social worker... Unlike the previous ones I'd had, she really wants to be available and help however she possibly can. She may even be able to figure out how Benito and I can finally get married without me losing my insurance! SCORE!!! More on that at another time... The real reason for this update was to tell you about the retransplant option, not talk weddings (but still... YAY!!!).
So the transplant pulmonologist sat with us for quite a while going over every possible health concern she or we had. Our biggest concern is whether or not I have enough room on my native airway to attach a new lung because my stenosis issue has made its way that high up my airway. So I go back in 2 weeks for a bronch and they'll take a look at that airway and see if there is enough space. If there is then we can move forward with the prep and testing to see if I'm eligible for retransplant. If there's not enough room, well, I don't know yet. I'm just hoping and praying that my stenosis hasn't left me with nothing to work with.
If all goes well after that, then our next step is to figure out what's going on with my liver. My dr wanting to ignore the problem is going to have to go ahead and order diagnostic testing, whether he thinks it's necessary or not. I Have to have a diagnosis before they'll consider me for retransplant.
Lastly, we need to figure out a better way of treating my acid reflux. For those that don't already know, acid reflux can lead to chronic rejection. It can be aspirated without even knowing it's happening and burn/damage lung tissue, causing chronic rejection to flare up. I'm almost convinced that this is the reason why I'm rejecting right now. While in the hospital they don't carry my usual acid blockers and I had some of the worst heartburn of my life during the past two hospital stays. It got to the point where I was having Benito sneak in my two acid blockers from home because they wouldn't let me give them my own bottles to dose me with and I was miserable.
So once these three obstacles are behind me I can begin the testing for the retransplant evaluation. Like I said, I have a Lot of stuff that needs to be done and out of the way before I'll know whether or not UCSF thinks I'm a good candidate for retransplant and will list me.
I'll try to keep you all up to date on any new developments, but until you see me post in all caps that I'm on the list, know I'm still working Hard to get to that point.
I appreciate the outpouring love and prayers I've been getting the past few weeks, especially today! Please keep it coming. Like I always say- You give me strength through the love you share with me. I may be on the verge of fighting for my life again, but I don't doubt for an instant that I am Blessed to still be here to share this incredible, crazy, Amazing journey of my life with all of you. I am So grateful for every single one of you. Love and Hugs!!
Wednesday, February 19, 2014
Here we go again.
Forgive me because I don't know where to begin this blog entry that I've put off for as long as I possibly can.
The last update left off just after I was discharged from the hospital with another week of IV Meropenem to finish up at home. 5 days after I was done with the IV antibiotic I had a CF clinic appointment in which I brought Benito with me and was preparing to have a serious talk with my doctors about how much I want to be more aggressive toward finding out what's going on with my liver and the trouble I've been having with my stenosis getting worse. What I wasn't expecting was the talk my doctor was planning on having with me.
I was happy to see the younger CF doctor that day because I've been butting heads with my other doctor lately and there was so much that needed to be said, by both sides, to get caught up in disagreements.
As always, I did my PFTs first and was shocked to see that they were down from my baseline of 34% to 26%. When my doctor made is way in to see me, he acknowledged that the large drop in my PFTs was very worrisome and that he was also concerned with the amount of pain I was in with pretty much no relief with my pain medication. He then went on to tell me that he knew I wasn't stupid, and we all know that my disease is progressing and that now is the time to get in touch with UCSF again if I intended to get back on the transplant list for a second lung transplant. He decided that the best option was to go ahead and admit me that day and while I was in the hospital we could have the Palliative Care team consult and see if they can come up with a way to control my pain. I'll also get started back on IV meropenem and once I've been on the antibiotic for a few days then I'd get a bronch to open up my stenosis again (even though the last bronch was only 2 weeks prior). We were all hoping that we could blame at least some of the lost lung function on my stenosis being closed off again.
I had my bronch 3 days later and was very surprised to find out that my stenosis was wide open, in fact it looked as well as it did when they finished the last bronch. So what that told us is that I'm definitely losing lung function to rejection again. I have a feeling the complete closure of my stenosis and my right lung not getting any air to it for a good week a few weeks prior is what shocked my immune system into rejecting again. What's done is done though. 9 days after my PFTs in clinic I did another set in the hospital and I was down to 22%. I was discharged the next day with plans to get over to UCSF as soon as I can.
As far as the pain management goes, the Palliative Care team in the hospital was very nice and tried very hard to help my pain. We attempted a nerve block first with them injecting lidocaine on and around the area that I have the chronic lung pain, but the injections really only caused more pain. They put me on a PCA (pain med delivered directly through my IV each time I press a button) after my bronch - the day before discharge in hopes of it bringing my pain to a level I can live with before relying only on oral medication. The PCA and oral med combo helped, but I was so sleepy and out of it. They sent me home on my old pain med at a 3x dose along with Oxycontin to give me more of a long term relief so I wouldn't have to take my other med as often. Unfortunately my insurance refused to cover the Oxycontin at discharge, so the discharge planner managed to get me 3 days worth that "should" last until the insurance issue got smoothed out. Three days later we heard back from my insurance and they declined coverage, so I was back to only my old med by that Tuesday (1 week ago now). It took me about 4-5 days, but I've been weaning myself back to my old dose of my old pain med because it really doesn't help, no matter the dose, so I'd rather take less (just to keep from withdrawl, really). I can't believe how sleepy and foggy I was for the past 2 weeks on the Oxycontin. I'm still finding out things I've seen (tv shows), said, or did while I was so dopey and can't remember doing them! I am grateful for the time my pain was lessened, but I REALLY don't like living in such a fog and would rather not. I [think] I was supposed to get in touch with the pain management team once I was discharged, but I can't remember who exactly I was supposed to contact. I'm hoping they can eventually find a medication that will both help my pain and Not make me feel like I'm drugged up and forgetful. The pain I have is in my right lung, so God willing, this pain will not be an issue once I get new lungs.
I got a phone call the Monday following discharge from the Pre Lung Transplant Coordinator checking in with me and letting me know that they are waiting for some test results to be sent over from UCD before they schedule a clinic visit/consult with one of their doctors. Yesterday I got a phone call scheduling the consult visit for March 6th @9am with one of the doctors I'm familiar with already. Today I got a chest CT with contrast done that UCSF is requiring me to bring a copy of to my visit. I went ahead and purchased a personal pulse oximeter that tells me my oxygen saturation whenever I need to know (it's super small and I can keep it handy in my purse for whenever I need to check my o2 sats). Today while I was walking from the hospital's parking garage to the radiology department I was getting especially short of breath and dizzy so I put the sat monitor on and was surprised to see my oxygen saturation down to 85%. Once I sat down and rested for even 30 seconds my sats came back up to 97-98% on their own, so that's good news, but the desatting is definitely upsetting. I'm not ready to admit to myself that I am as sick as I really am right now. I prefer denial to be honest because every time I allow myself to think about it, I panic and get very scared that I either won't be accepted as a lung transplant candidate again, or I will just run out of time waiting for the eval and listing to be done. I'm trying my best to stay positive, but it's not always easy when I feel so helpless just waiting around doing nothing to speed things along.
So Benito and I wanted to let our family know about my need for another transplant before I made it public on here or Facebook and they found out via social media. Now that our families know what's going on I wanted to share the news with you all and ask for your positive thoughts, prayers, and whatever else you feel can help me get the lungs I need before it's too late. My first transplant was scary, but this need for a second puts a whole new level to "scary". This decline is so much more sudden and it has shaken myself and my family to the core.
I'll update again as I hear more. I'm not sure I'll have any news to share until after my appointment on the 6th, so don't get worried if you don't hear from me before then. I'll update after that consult though... I promise!
Lots of love to you all. And a big THANK YOU for all the support and love you've shown me and continue to give. I couldn't do any of this without the strength I get through your love!
XoXoXo
The last update left off just after I was discharged from the hospital with another week of IV Meropenem to finish up at home. 5 days after I was done with the IV antibiotic I had a CF clinic appointment in which I brought Benito with me and was preparing to have a serious talk with my doctors about how much I want to be more aggressive toward finding out what's going on with my liver and the trouble I've been having with my stenosis getting worse. What I wasn't expecting was the talk my doctor was planning on having with me.
I was happy to see the younger CF doctor that day because I've been butting heads with my other doctor lately and there was so much that needed to be said, by both sides, to get caught up in disagreements.
As always, I did my PFTs first and was shocked to see that they were down from my baseline of 34% to 26%. When my doctor made is way in to see me, he acknowledged that the large drop in my PFTs was very worrisome and that he was also concerned with the amount of pain I was in with pretty much no relief with my pain medication. He then went on to tell me that he knew I wasn't stupid, and we all know that my disease is progressing and that now is the time to get in touch with UCSF again if I intended to get back on the transplant list for a second lung transplant. He decided that the best option was to go ahead and admit me that day and while I was in the hospital we could have the Palliative Care team consult and see if they can come up with a way to control my pain. I'll also get started back on IV meropenem and once I've been on the antibiotic for a few days then I'd get a bronch to open up my stenosis again (even though the last bronch was only 2 weeks prior). We were all hoping that we could blame at least some of the lost lung function on my stenosis being closed off again.
I had my bronch 3 days later and was very surprised to find out that my stenosis was wide open, in fact it looked as well as it did when they finished the last bronch. So what that told us is that I'm definitely losing lung function to rejection again. I have a feeling the complete closure of my stenosis and my right lung not getting any air to it for a good week a few weeks prior is what shocked my immune system into rejecting again. What's done is done though. 9 days after my PFTs in clinic I did another set in the hospital and I was down to 22%. I was discharged the next day with plans to get over to UCSF as soon as I can.
As far as the pain management goes, the Palliative Care team in the hospital was very nice and tried very hard to help my pain. We attempted a nerve block first with them injecting lidocaine on and around the area that I have the chronic lung pain, but the injections really only caused more pain. They put me on a PCA (pain med delivered directly through my IV each time I press a button) after my bronch - the day before discharge in hopes of it bringing my pain to a level I can live with before relying only on oral medication. The PCA and oral med combo helped, but I was so sleepy and out of it. They sent me home on my old pain med at a 3x dose along with Oxycontin to give me more of a long term relief so I wouldn't have to take my other med as often. Unfortunately my insurance refused to cover the Oxycontin at discharge, so the discharge planner managed to get me 3 days worth that "should" last until the insurance issue got smoothed out. Three days later we heard back from my insurance and they declined coverage, so I was back to only my old med by that Tuesday (1 week ago now). It took me about 4-5 days, but I've been weaning myself back to my old dose of my old pain med because it really doesn't help, no matter the dose, so I'd rather take less (just to keep from withdrawl, really). I can't believe how sleepy and foggy I was for the past 2 weeks on the Oxycontin. I'm still finding out things I've seen (tv shows), said, or did while I was so dopey and can't remember doing them! I am grateful for the time my pain was lessened, but I REALLY don't like living in such a fog and would rather not. I [think] I was supposed to get in touch with the pain management team once I was discharged, but I can't remember who exactly I was supposed to contact. I'm hoping they can eventually find a medication that will both help my pain and Not make me feel like I'm drugged up and forgetful. The pain I have is in my right lung, so God willing, this pain will not be an issue once I get new lungs.
I got a phone call the Monday following discharge from the Pre Lung Transplant Coordinator checking in with me and letting me know that they are waiting for some test results to be sent over from UCD before they schedule a clinic visit/consult with one of their doctors. Yesterday I got a phone call scheduling the consult visit for March 6th @9am with one of the doctors I'm familiar with already. Today I got a chest CT with contrast done that UCSF is requiring me to bring a copy of to my visit. I went ahead and purchased a personal pulse oximeter that tells me my oxygen saturation whenever I need to know (it's super small and I can keep it handy in my purse for whenever I need to check my o2 sats). Today while I was walking from the hospital's parking garage to the radiology department I was getting especially short of breath and dizzy so I put the sat monitor on and was surprised to see my oxygen saturation down to 85%. Once I sat down and rested for even 30 seconds my sats came back up to 97-98% on their own, so that's good news, but the desatting is definitely upsetting. I'm not ready to admit to myself that I am as sick as I really am right now. I prefer denial to be honest because every time I allow myself to think about it, I panic and get very scared that I either won't be accepted as a lung transplant candidate again, or I will just run out of time waiting for the eval and listing to be done. I'm trying my best to stay positive, but it's not always easy when I feel so helpless just waiting around doing nothing to speed things along.
So Benito and I wanted to let our family know about my need for another transplant before I made it public on here or Facebook and they found out via social media. Now that our families know what's going on I wanted to share the news with you all and ask for your positive thoughts, prayers, and whatever else you feel can help me get the lungs I need before it's too late. My first transplant was scary, but this need for a second puts a whole new level to "scary". This decline is so much more sudden and it has shaken myself and my family to the core.
I'll update again as I hear more. I'm not sure I'll have any news to share until after my appointment on the 6th, so don't get worried if you don't hear from me before then. I'll update after that consult though... I promise!
Lots of love to you all. And a big THANK YOU for all the support and love you've shown me and continue to give. I couldn't do any of this without the strength I get through your love!
XoXoXo
Monday, September 24, 2012
Reposting: My Story
I wrote this the night before my 2nd Transplant anniversary. 6 years later I thought I'd share it again... It brings back so much emotions and memories every time I re-read this...
At this very moment 2 years ago I was in my mother's car being driven at what felt like warp speed to a hospital three hours away where I was supposed to be given my second chance at life. I'd hugged and said goodbye to my best friend for possibly the last time. Called my sister and told her I loved her and her kids and even had a small panic attack while trying to calm the rest of my family by telling them it's all going to be alright (even though I was so uncertain with my own words).
I'd prayed for this day to come for a year. Each day learning everything I could about transplant and the life I could have with new lungs. I wanted to know what it was like to breathe. To not wake up every single morning unable to stand up because I was so short of breath from a coughing fit. What was it like to sleep with One pillow instead of six? To not revolve my day around breathing treatments and little windows where I felt good enough to get a quick shower, or fix myself a quick snack. Oh to not be so dependent on others to take care of me!! The possabilities I had for what looked like more of a future than I'd ever dreamed of. I had so much plans for myself and couldn't wait to get started!
So, while watching television (Everybody Loves Raymond to be exact) on a Friday night I received a phone call on my cell from an "unknown" caller. I quickly answered it and on the other line was a man's voice (which soon after this point became my hero) telling me calmly that he had a set of beautiful lungs for me if I was interested. I had to have him repeat it.. All of a sudden my ears started to ring and I couldn't understand the words being spoken to me. After he repeated himself he asked if I was interested. Was I interested? It's too soon. I'm not ready... But the only thing that came out of my mouth was YES. He gave me instructions where I needed to be, and to be there by 1am to be checked in. I got his pager number, his cell phone number and another number to his office. If I needed to call for ANYTHING, I had a way to find him.. My surgeon; My hero.
I got to the hospital by 12:30am, checked in and into my new room to wait by 12:45am. Everything happened so quickly after that with the pre op tests, questions and the wardrobe change. After all that was done it was time to wait.. Boy did we wait. Every hour or so the nurse would come in and tell me and my family that it shouldn't be much longer until the OR is ready for me.. Finally at 8am Saturday, September 25th I was being wheeled into the O.R. I told my family one last time I loved them and with a smile on my face and my heart beating almost out of my chest I said goodbye to them quietly, without them knowing.
I woke up the next day in the ICU with my dad looking over me. His first response was yelling to whomever else was in the room that I was awake. By that evening my ICU nurses already had me sitting on the edge of the bed. The next day I was in a chair and from then on I was either in the chair or walking the halls unless it was bedtime and only then was I allowed in my bed. I definitely had a love/hate relationship with those nurses, but in all honesty I couldn't have asked for better angels looking out for me. After a few complications and 12 days after my surgery I was ready to be discharged and move into what would be my new home by the beach for the next 6 1/2 weeks.
I was so homesick while living in that hotel. There isn't words to discribe just how much I wanted my own bed and my friends to visit with, but somehow time passed and on the night before Thanksgiving I was packed up and on my way home with my mom. With the car packed as tight as it could possibly be I asked my mom to stop by my best friend's house before going home. I called her from my cell and told her how much I missed her and wished I could be home to spend Thanksgiving with them. Meanwhile I was walking up her doorstep without her knowing. I rang the doorbell and on the phone I told her "ding dong". Her father answered the door and he and I just grinned at each other... She was in her room squeeling with every bit of happiness that could come from her tiny body! She ran out and gave me a huge hug. Oh what a wonderful feeling to be home! To have my people around me again.. Surely all of this crap I'd gone through had been worth it if I get to have a little extra borrowed time to spend with the people I love. I will never forget what my friend sent as a text message to me that very night before I'd gone to bed.. "You brought the holidays back with you" That love is what I fought so hard to keep, what I still fight so hard for.
So, two years later and I feel amazing. I'm not feeling perfect, but I can't expect that. I wouldn't be here right now writing this if I hadn't had the opportunity to be given two new beautiful lungs from the donor who gave one last time to a complete stranger. I spend each of my anniversaries both thrilled to still be here, but also grieving for the loss of this wonderful person who saved my life. I hope to someday get a chance to meet the family of my donor and tell them how much their child/husband/wife means to me and not a day goes by where I don't thank them for this second chance.
I do not know why I wrote this blog, but I've felt the overwhelming need to talk to my donor and obviously I can't. I figured instead I could tell my story a little and possibly get others to consider talking to their families about becoming donors. I have a dear dear friend who is waiting for his transplant, but there are just not enough people who make it known they are donors, so too many life saving organs are not used to help people like my friend. If you want to be a donor, tell your family and go to http://www.donatelife.net/http://www.donatelife.net/">http://www.donatelife.net/
> and find out how to sign up on the national organ donor registry. It doesn't work if you just put that pink dot on your drivers license, your family members can over-ride that.
Thank you for reading my story and I apologize for it being so long. Oh, and yes, I sleep with One pillow now = )
At this very moment 2 years ago I was in my mother's car being driven at what felt like warp speed to a hospital three hours away where I was supposed to be given my second chance at life. I'd hugged and said goodbye to my best friend for possibly the last time. Called my sister and told her I loved her and her kids and even had a small panic attack while trying to calm the rest of my family by telling them it's all going to be alright (even though I was so uncertain with my own words).
I'd prayed for this day to come for a year. Each day learning everything I could about transplant and the life I could have with new lungs. I wanted to know what it was like to breathe. To not wake up every single morning unable to stand up because I was so short of breath from a coughing fit. What was it like to sleep with One pillow instead of six? To not revolve my day around breathing treatments and little windows where I felt good enough to get a quick shower, or fix myself a quick snack. Oh to not be so dependent on others to take care of me!! The possabilities I had for what looked like more of a future than I'd ever dreamed of. I had so much plans for myself and couldn't wait to get started!
So, while watching television (Everybody Loves Raymond to be exact) on a Friday night I received a phone call on my cell from an "unknown" caller. I quickly answered it and on the other line was a man's voice (which soon after this point became my hero) telling me calmly that he had a set of beautiful lungs for me if I was interested. I had to have him repeat it.. All of a sudden my ears started to ring and I couldn't understand the words being spoken to me. After he repeated himself he asked if I was interested. Was I interested? It's too soon. I'm not ready... But the only thing that came out of my mouth was YES. He gave me instructions where I needed to be, and to be there by 1am to be checked in. I got his pager number, his cell phone number and another number to his office. If I needed to call for ANYTHING, I had a way to find him.. My surgeon; My hero.
I got to the hospital by 12:30am, checked in and into my new room to wait by 12:45am. Everything happened so quickly after that with the pre op tests, questions and the wardrobe change. After all that was done it was time to wait.. Boy did we wait. Every hour or so the nurse would come in and tell me and my family that it shouldn't be much longer until the OR is ready for me.. Finally at 8am Saturday, September 25th I was being wheeled into the O.R. I told my family one last time I loved them and with a smile on my face and my heart beating almost out of my chest I said goodbye to them quietly, without them knowing.
I woke up the next day in the ICU with my dad looking over me. His first response was yelling to whomever else was in the room that I was awake. By that evening my ICU nurses already had me sitting on the edge of the bed. The next day I was in a chair and from then on I was either in the chair or walking the halls unless it was bedtime and only then was I allowed in my bed. I definitely had a love/hate relationship with those nurses, but in all honesty I couldn't have asked for better angels looking out for me. After a few complications and 12 days after my surgery I was ready to be discharged and move into what would be my new home by the beach for the next 6 1/2 weeks.
I was so homesick while living in that hotel. There isn't words to discribe just how much I wanted my own bed and my friends to visit with, but somehow time passed and on the night before Thanksgiving I was packed up and on my way home with my mom. With the car packed as tight as it could possibly be I asked my mom to stop by my best friend's house before going home. I called her from my cell and told her how much I missed her and wished I could be home to spend Thanksgiving with them. Meanwhile I was walking up her doorstep without her knowing. I rang the doorbell and on the phone I told her "ding dong". Her father answered the door and he and I just grinned at each other... She was in her room squeeling with every bit of happiness that could come from her tiny body! She ran out and gave me a huge hug. Oh what a wonderful feeling to be home! To have my people around me again.. Surely all of this crap I'd gone through had been worth it if I get to have a little extra borrowed time to spend with the people I love. I will never forget what my friend sent as a text message to me that very night before I'd gone to bed.. "You brought the holidays back with you" That love is what I fought so hard to keep, what I still fight so hard for.
So, two years later and I feel amazing. I'm not feeling perfect, but I can't expect that. I wouldn't be here right now writing this if I hadn't had the opportunity to be given two new beautiful lungs from the donor who gave one last time to a complete stranger. I spend each of my anniversaries both thrilled to still be here, but also grieving for the loss of this wonderful person who saved my life. I hope to someday get a chance to meet the family of my donor and tell them how much their child/husband/wife means to me and not a day goes by where I don't thank them for this second chance.
I do not know why I wrote this blog, but I've felt the overwhelming need to talk to my donor and obviously I can't. I figured instead I could tell my story a little and possibly get others to consider talking to their families about becoming donors. I have a dear dear friend who is waiting for his transplant, but there are just not enough people who make it known they are donors, so too many life saving organs are not used to help people like my friend. If you want to be a donor, tell your family and go to http://www.donatelife.net/http://www.donatelife.net/">http://www.donatelife.net/
> and find out how to sign up on the national organ donor registry. It doesn't work if you just put that pink dot on your drivers license, your family members can over-ride that.
Thank you for reading my story and I apologize for it being so long. Oh, and yes, I sleep with One pillow now = )
Key words:
Improvement. Hope,
story,
transplant,
UCSF hospital
Saturday, March 5, 2011
Ray Lamontagne soothes the soul
It's been over a month since I've been told there is nothing left to do but wait to get sicker. A lot has happened since I've last updated, so I'll try to cover everything.
I'm sitting in my bed with my laptop listening to Ray Lamontagne; letting his raspy voice and beautiful lyrics soothe my soul while I recall some of the not so fun things that have happened so far this year.
My last post went over what happened at my last CF clinic appointment. Just a quick recap: After Stanford declined taking me on as a patient, I was relying on my CF doctors to help stop the decline in lung function. Why not have my transplant center (UCSF) take care of me and my possible chronic rejection you ask? Well, my transplant center is one of what seems like a growing group of transplant centers that are very apathetic toward their patients (I should include there are a Few people I've talked to who have not had this same experience with UCSF) and do not have a protocol toward treating chronic rejection. My CF doctors have exhausted all their resources and are not familiar enough with the transplant field to know what to do for the possible chronic rejection(CR). So, I've been left with absolutely no idea what I'm to do about my increasingly fast decline of lung function. In the last month alone Benito and I both can tell a huge difference in my breathing. My last fev1 (lung function lingo) was at 33% prediction, which is at the point where people would be listed for transplant. I was at 17% fev1 at the point of my first transplant, but since the damage CF did to my lungs was so gradual, I was able to adapt to the low lung function. The decline I have now seems to be happening to fast that I'm not able to adapt and it feels like it takes forever to be able to catch my breath after walking just a few feet. Imagine trying to inhale through an empty balloon... That's exactly how my chest feels when I'm out of breath. My sound of my breathing is getting to be so noisy that it keeps me up at night (I sleep with a fan going even if it's freezing, just to try and cover the noise of my breathing).
So after the last clinic appointment at my CF center I had yet another balloon dilatation done on my right narrow airway and after that procedure was over, my doctor came to the recovery room and talked with Benito and I about where we need to go from here. I had brought a printed out copy of a conversation between a very good CF/Transplant friend of mine who goes to Duke hospital. In these conversations she was helping me with what treatments she knew of that hers and others have used to treat chronic rejection. I gave this copy to my CF doctor to read over before my procedure that day and by the time I saw him after the procedure he had read it over a few times and had spent a half hour speaking with the pulmonologist there at UCD that worked my up for my transplant evaluation six years ago. This pulmonologist used to work with the lung transplant team at UCD years ago when there actually was one, so he knows a little more about transplants than my CF doctor. Basically all they came up with, was that I needed a transplant center to administer these treatments because they have never prescribed them and didn't feel comfortable having me be their guinea pig. So, this left me to first go back to UCSF and see what they could do for me, then if I get nowhere with them, I can look into possibly going to UCLA, but it's eight hours from where we live and it would be both physically and financially draining to have to relocate.
Fast forward to February 10-11th. Benito and I went to San Francisco to visit my transplant doctor for the first time in a year hoping they will give us some hope, although I wasn't expecting much. I had my PFT's (which showed my fev1 down to 33%), CT scan and transplant clinic on the 10th and bronch with biopsies the following morning. My doctor basically told me he wasn't convinced what I'm going through is chronic rejection. He's STILL convinced the stenosis I have in my right main bronchi is causing all this decline in lung function. I was willing to believe him for a while, but after 2 years of my lung function getting worse and worse by the month even though I was getting balloon dilatation's to open the airway every month. So I brought up IF what's going on is chronic rejection, what does he usually do for his patients in CR? He basically said that after making sure the patient is on Azithromycin (which I've been on since my transplant), he doesn't do anything. He believes there is no proven treatment for CR. In fact after I brought up a list of treatments that I know other hospitals are using for their patients in CR, he denied that more than one center is using one of the treatments (which I know is untrue), and said the other treatments don't work. *Huge sigh* At that point he said "there is one thing you haven't mentioned yet" and I knew what he meant... Re-transplant. He said he would re-transplant me in a heartbeat because I'm "such a great patient". I can't tell you how upset that made me. I feel like this hospital treats me like a customer and not a patient they need to care for. They are so eager to re-transplant me (where they'll make $200k just for the surgery alone), rather than do whatever it takes to try and treat what's wrong now. It's very unnerving to not have faith that your doctor is doing what's best for you.
The bronch the following morning was an absolute nightmare. I have chronic side pain, which is assumed to associated with a chest tube and nerve problems. This pain gets a lot worse when I deep breathe and it's forced me to take pain medication every day in order to just get out of bed every day. Well the fellow DR that was in charge of my bronch for some reason was so afraid to over medicate me that I was awake during the bronch, given only a child's dose of Versed (medication which is supposed to help you relax). So during the bronch, the guy who calls himself a doctor was only able to biopsy my left lung because my right airway wasn't open enough to get the tube down through it. Once I got to the recovery area I was in 12 out of 10 pain in my side and stayed that way for 3 HOURS because the doctor was scared to give me any pain medication because somewhere in his tiny brain he thought I might get over medicated. Mind you, my O2 sats were 97%, my heart rate was around 100bpm and my blood pressure was around 160/80, which is too high, a sign of a person in pain and not in danger of being over medicated. After about 30min of crying, the nurse closed my curtain around me so he and everyone else could try and ignore me. 2 1/2hrs later while still in 12 out of 10 pain and still crying, the nurse came in and said "good news! the doctor is allowing you to take half of one of your pain pills!" I was like "You've got to be kidding me! Why can't I take a whole pill? I take a whole pill at home every 8 hours!" The nurse took my bottle and cut one of the pills in half and handed me the half along with a glass of water. I asked him for the bottle and dumped his half back into it and took a full pill. That nurse flipped out! He opened my curtain and told me I'll never be able to take my own medication again (Fine with me! The hospital shouldn't force their patients to treat their own pain! THEY shouldn't allow their patients to be in excruciating pain for 3 hours without trying to help them!). He then demanded that I give him back my pill bottle. Ummm HELL NO! I told him that once he brought my fiance back into the room I'll give the bottle to him. He didn't need to be worried that I'd take more. I've been on this medication for years and I know not to over medicate myself. So about 45min later when my pain was beginning to get better, the "doctor" came in and said that since I took a whole pill against medical advice, he was going to put me in the ER to be watched and made sure I didn't desat and stop breathing because of my excess medication dosing. WHAT?! First of all, it wasn't excess. I had less medication so far that day than I usually do on a daily basis. Second, no doctor who knows anything about transplant recipients would send their patients to the ER where there are God knows what kinds of germs floating around and risk getting me sick. A few minutes after he left, a different nurse started his shift and found out what had been going on and called one of my REAL doctors. Within a half hour my tx doctor had come in and wrote discharge papers saying to hurry up and go before that other "doctor" followed through with his crazy ER plan. It's sad, but events like these are not all that uncommon for me at UCSF. Most of the nursing staff is great, but I can't say the same for their doctors.
Two weeks later I was back to UCSF because my tx doctor wanted me to come in and go under general anesthesia while they go down to open up my airway and take a better look around. Thankfully once I got to the recovery room that time, the doctors and nurses gave me adequate pain control and were very kind. My main tx doctor came in to talk to Benito and I after the dilation with a huge grin on his face saying "I think we did a great job opening that airway". Unfortunately the week following that procedure my breathing got really bad and for the first time I think even scared Benito. It's been almost 2 weeks since the dilation and I'm beginning to get back to my baseline. I have CF clinic on Monday and I'm not sure what to expect.
Onto better news, Benito's sister will be getting married this next Sat 3/12 and I'm her maid of honor! Benito and I haven't really done any major wedding planning for us yet. I want to enjoy my wedding and as of now, my health won't let me. So, I'm hoping to start wedding plans the day after I am feeling better! :)
I'm sitting in my bed with my laptop listening to Ray Lamontagne; letting his raspy voice and beautiful lyrics soothe my soul while I recall some of the not so fun things that have happened so far this year.
My last post went over what happened at my last CF clinic appointment. Just a quick recap: After Stanford declined taking me on as a patient, I was relying on my CF doctors to help stop the decline in lung function. Why not have my transplant center (UCSF) take care of me and my possible chronic rejection you ask? Well, my transplant center is one of what seems like a growing group of transplant centers that are very apathetic toward their patients (I should include there are a Few people I've talked to who have not had this same experience with UCSF) and do not have a protocol toward treating chronic rejection. My CF doctors have exhausted all their resources and are not familiar enough with the transplant field to know what to do for the possible chronic rejection(CR). So, I've been left with absolutely no idea what I'm to do about my increasingly fast decline of lung function. In the last month alone Benito and I both can tell a huge difference in my breathing. My last fev1 (lung function lingo) was at 33% prediction, which is at the point where people would be listed for transplant. I was at 17% fev1 at the point of my first transplant, but since the damage CF did to my lungs was so gradual, I was able to adapt to the low lung function. The decline I have now seems to be happening to fast that I'm not able to adapt and it feels like it takes forever to be able to catch my breath after walking just a few feet. Imagine trying to inhale through an empty balloon... That's exactly how my chest feels when I'm out of breath. My sound of my breathing is getting to be so noisy that it keeps me up at night (I sleep with a fan going even if it's freezing, just to try and cover the noise of my breathing).
So after the last clinic appointment at my CF center I had yet another balloon dilatation done on my right narrow airway and after that procedure was over, my doctor came to the recovery room and talked with Benito and I about where we need to go from here. I had brought a printed out copy of a conversation between a very good CF/Transplant friend of mine who goes to Duke hospital. In these conversations she was helping me with what treatments she knew of that hers and others have used to treat chronic rejection. I gave this copy to my CF doctor to read over before my procedure that day and by the time I saw him after the procedure he had read it over a few times and had spent a half hour speaking with the pulmonologist there at UCD that worked my up for my transplant evaluation six years ago. This pulmonologist used to work with the lung transplant team at UCD years ago when there actually was one, so he knows a little more about transplants than my CF doctor. Basically all they came up with, was that I needed a transplant center to administer these treatments because they have never prescribed them and didn't feel comfortable having me be their guinea pig. So, this left me to first go back to UCSF and see what they could do for me, then if I get nowhere with them, I can look into possibly going to UCLA, but it's eight hours from where we live and it would be both physically and financially draining to have to relocate.
Fast forward to February 10-11th. Benito and I went to San Francisco to visit my transplant doctor for the first time in a year hoping they will give us some hope, although I wasn't expecting much. I had my PFT's (which showed my fev1 down to 33%), CT scan and transplant clinic on the 10th and bronch with biopsies the following morning. My doctor basically told me he wasn't convinced what I'm going through is chronic rejection. He's STILL convinced the stenosis I have in my right main bronchi is causing all this decline in lung function. I was willing to believe him for a while, but after 2 years of my lung function getting worse and worse by the month even though I was getting balloon dilatation's to open the airway every month. So I brought up IF what's going on is chronic rejection, what does he usually do for his patients in CR? He basically said that after making sure the patient is on Azithromycin (which I've been on since my transplant), he doesn't do anything. He believes there is no proven treatment for CR. In fact after I brought up a list of treatments that I know other hospitals are using for their patients in CR, he denied that more than one center is using one of the treatments (which I know is untrue), and said the other treatments don't work. *Huge sigh* At that point he said "there is one thing you haven't mentioned yet" and I knew what he meant... Re-transplant. He said he would re-transplant me in a heartbeat because I'm "such a great patient". I can't tell you how upset that made me. I feel like this hospital treats me like a customer and not a patient they need to care for. They are so eager to re-transplant me (where they'll make $200k just for the surgery alone), rather than do whatever it takes to try and treat what's wrong now. It's very unnerving to not have faith that your doctor is doing what's best for you.
The bronch the following morning was an absolute nightmare. I have chronic side pain, which is assumed to associated with a chest tube and nerve problems. This pain gets a lot worse when I deep breathe and it's forced me to take pain medication every day in order to just get out of bed every day. Well the fellow DR that was in charge of my bronch for some reason was so afraid to over medicate me that I was awake during the bronch, given only a child's dose of Versed (medication which is supposed to help you relax). So during the bronch, the guy who calls himself a doctor was only able to biopsy my left lung because my right airway wasn't open enough to get the tube down through it. Once I got to the recovery area I was in 12 out of 10 pain in my side and stayed that way for 3 HOURS because the doctor was scared to give me any pain medication because somewhere in his tiny brain he thought I might get over medicated. Mind you, my O2 sats were 97%, my heart rate was around 100bpm and my blood pressure was around 160/80, which is too high, a sign of a person in pain and not in danger of being over medicated. After about 30min of crying, the nurse closed my curtain around me so he and everyone else could try and ignore me. 2 1/2hrs later while still in 12 out of 10 pain and still crying, the nurse came in and said "good news! the doctor is allowing you to take half of one of your pain pills!" I was like "You've got to be kidding me! Why can't I take a whole pill? I take a whole pill at home every 8 hours!" The nurse took my bottle and cut one of the pills in half and handed me the half along with a glass of water. I asked him for the bottle and dumped his half back into it and took a full pill. That nurse flipped out! He opened my curtain and told me I'll never be able to take my own medication again (Fine with me! The hospital shouldn't force their patients to treat their own pain! THEY shouldn't allow their patients to be in excruciating pain for 3 hours without trying to help them!). He then demanded that I give him back my pill bottle. Ummm HELL NO! I told him that once he brought my fiance back into the room I'll give the bottle to him. He didn't need to be worried that I'd take more. I've been on this medication for years and I know not to over medicate myself. So about 45min later when my pain was beginning to get better, the "doctor" came in and said that since I took a whole pill against medical advice, he was going to put me in the ER to be watched and made sure I didn't desat and stop breathing because of my excess medication dosing. WHAT?! First of all, it wasn't excess. I had less medication so far that day than I usually do on a daily basis. Second, no doctor who knows anything about transplant recipients would send their patients to the ER where there are God knows what kinds of germs floating around and risk getting me sick. A few minutes after he left, a different nurse started his shift and found out what had been going on and called one of my REAL doctors. Within a half hour my tx doctor had come in and wrote discharge papers saying to hurry up and go before that other "doctor" followed through with his crazy ER plan. It's sad, but events like these are not all that uncommon for me at UCSF. Most of the nursing staff is great, but I can't say the same for their doctors.
Two weeks later I was back to UCSF because my tx doctor wanted me to come in and go under general anesthesia while they go down to open up my airway and take a better look around. Thankfully once I got to the recovery room that time, the doctors and nurses gave me adequate pain control and were very kind. My main tx doctor came in to talk to Benito and I after the dilation with a huge grin on his face saying "I think we did a great job opening that airway". Unfortunately the week following that procedure my breathing got really bad and for the first time I think even scared Benito. It's been almost 2 weeks since the dilation and I'm beginning to get back to my baseline. I have CF clinic on Monday and I'm not sure what to expect.
Onto better news, Benito's sister will be getting married this next Sat 3/12 and I'm her maid of honor! Benito and I haven't really done any major wedding planning for us yet. I want to enjoy my wedding and as of now, my health won't let me. So, I'm hoping to start wedding plans the day after I am feeling better! :)
Sunday, October 3, 2010
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.
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.
Key words:
Benito,
IVs,
rejection,
Stanford hospital,
transplant,
UCSF hospital,
Vacation,
work
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