I had CF clinic yesterday at UC Davis and discussed the possibility of transferring my transplant care over to a different hospital than UCSF. Once I mentioned my concerns to my social worker, she went and talked to my doctors. Both of my doctors came in together and pulled up x-rays, culture/biopsy results, and a graph of the past 2 years worth of PFTs (pulmonary function tests). The graph showed exactly what I've been trying to tell them (and UCSF) for the past 2 years... A very steady, scary decline from 80% down to 38%. Unfortunately whenever I would point out a decline in clinic, they would just compare it to the previous visit, missing the full picture. When looking at the 2 yr graph, it's hard to ignore the alarming decline of lung function. The problem is, nothing is giving us a hard answer as to what is causing my lungs to be declining so much. Of course biopsies only show rejection of the large airways (acute rejection), which leaves a possibility of rejection of the small airways (chronic rejection).
So my docs want to admit me for a week starting July 5th to run some extensive testing to rule out some things, while trying to figure out exactly what's going on. If I understand correctly, if absolutely everything else is ruled out, they are going to assume it's chronic rejection and hopefully treat me accordingly.
I asked them if they felt the are capable of treating me if it is rejection and they said they are and that they have experience with it, so I'm willing to give them a few months to figure out what's going on and start treating me. If I don't see any signs of improvement in that time, I'm going to look into transferring my transplant care to Stanford hospital. I really trust and respect my CF doctors and want to believe they can be my sole physicians for both CF AND transplant, but my only concern is their experience working with transplant rejection and their knowledge of the newest treatments.
I should have access to the internet (although limited) while I'm in the hospital, so I'll try and update as I can.
Tuesday, June 29, 2010
Friday, May 14, 2010
Biopsy
Had my biopsy yesterday. 24hrs later and the anesthesia has finally worn off enough for me to post an update. My lungs showed a lot of inflammation and suprising enough, my nerves have re-attached themselves in my donor lungs. Every time they would "snip" a little sample off my lungs, I would wake up in pain. For those of you who don't know, donor lungs usually do not have working nerve endings because of the transplant process and not being able to reattach them. I'm unique though! yay me! This explains why my right side has been hurting so bad the past 2 years, it's probably my stent causing the pain.
Anyway, waiting back on both the biopsys and cultures they took. Due to the inflammation and low lung funtion, my docs say that if an infection doesn't show it's ugly head, then it's most likely chronic rejection I've been dealing with all this time. Pretty scary, but not exactly a surprise. I should get results in a week, so prayers would be wonderful. Thanks friends!
Anyway, waiting back on both the biopsys and cultures they took. Due to the inflammation and low lung funtion, my docs say that if an infection doesn't show it's ugly head, then it's most likely chronic rejection I've been dealing with all this time. Pretty scary, but not exactly a surprise. I should get results in a week, so prayers would be wonderful. Thanks friends!
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, August 9, 2009
On the up and up
I can hardly believe it's been so long since my last post on my blog. Life has been keeping me busy these past few months!
I'm taking a break from writing a paper for my class, to write on my blog... I should be getting up to stretch or have a snack, but nooooo... The computer has a hold on me! hehehe
My biggest news to share is that after over 8 months looking (and a handful of interviews) I finally have a job! I start tomorrow at JCPenney. It's part time and entry level, so hopefully it won't take too much out of me and I'll be able to keep up in school as I am now. I can't help but be amazed by how much has changed for me over the past year; this job being the latest upward change of mine.
It feels like my health is finally giving me a rest. I've coordinated with my CF specialists in Sacramento to take over the balloon dilations from now on rather than having to make several trips to San Francisco every month or two. It's actually been a much better plan of action because we've been able to get my airway open just as it seems to be closing itself off, which avoids infections!
Benito and I are as great as ever. With his support and motivation, I got through a class I was seriously considering to drop. The love and support we have for each other is enormous. I can't imagine love feeling any better than this.
I guess that's about all the time I should take away from finishing up my paper, which is due tomorrow by the way! I hope everyone has enjoyed their weekend and is doing well!
I'm taking a break from writing a paper for my class, to write on my blog... I should be getting up to stretch or have a snack, but nooooo... The computer has a hold on me! hehehe
My biggest news to share is that after over 8 months looking (and a handful of interviews) I finally have a job! I start tomorrow at JCPenney. It's part time and entry level, so hopefully it won't take too much out of me and I'll be able to keep up in school as I am now. I can't help but be amazed by how much has changed for me over the past year; this job being the latest upward change of mine.
It feels like my health is finally giving me a rest. I've coordinated with my CF specialists in Sacramento to take over the balloon dilations from now on rather than having to make several trips to San Francisco every month or two. It's actually been a much better plan of action because we've been able to get my airway open just as it seems to be closing itself off, which avoids infections!
Benito and I are as great as ever. With his support and motivation, I got through a class I was seriously considering to drop. The love and support we have for each other is enormous. I can't imagine love feeling any better than this.
I guess that's about all the time I should take away from finishing up my paper, which is due tomorrow by the way! I hope everyone has enjoyed their weekend and is doing well!
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.
Subscribe to:
Posts (Atom)