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 end of a rough year leads to a rough new year.

I've had a pretty tough few months, but the last few weeks have been a doozie. I've been complaining to my doctors via phone about having more and more trouble breathing, fevers rising, and my pain getting worse. Finally, just before my birthday I got a phone call back saying that they'd like to admit me because they thought I may have a virus (although my symptoms had been going strong for Weeks). I told them that I had a 4 night "getaway" planned for my birthday - New Years that I really needed to go to, even though I wasn't planning on anything more than laying around and just spending some time away from home with Benito. So we cancelled our plans because my doctor was supposed to call me on Saturday to discuss admit, but after not hearing from him, we decided to check and see if our reservation had been rebooked by someone else yet. Luckily the place was still open so we went ahead and spent 3 nights in the East Bay. We literally spent the entire time watching rented DVDs, sleeping, or just laying around talking, but we did it together and had a great time away from home for those few days.
Once we got home I called my clinic to see if I can go ahead and be admitted, but my nurse was out of the office until the following Monday (Jan 6th). So we spent the next few days preparing for an admit and Benito getting a lot of work done at his office.
I wasn't allowed to say anything before, but Benito was offered a management position at his office and his first day at Operations Manager of the entire production part of the company was Jan 2nd! I'm just so darned proud of him for all the heard work he's put in over the past 5 years. He's such a hard worker and just LOVES this company, so when the previous VP of the company decided to buy out the company from the family who started it 20+ years ago, he knew he wanted Benito to run production. It's all so very exciting now that we can actually tell people! We've had to keep this secret for nearly 3 months before the big announcement on Jan 2nd!

So I called my nurse on Monday morning (Jan 6th) saying that I really need to be admitted. CF clinic is on Mondays, so I knew it would be a while before I would get a call back about getting a bed. I spent the day making sure I had my ducks in a row... Bills paid, laundry done, library books renewed or ready to return, etc. Toward the late afternoon I took a quick shower and by the time I got toweled off I was Bright RED, shaking, and super weak. I pulled out all my equipment and took my vitals... My temp, blood pressure, and heart rate were high, while my oxygen saturation was at an all time low since transplant. I called my nurse again and left a voicemail letting her know the update. Within a few hours my dr called me saying that the hospital was full because of how hard the flu has hit everyone this year, but he's trying to get me a bed. If a bed didn't open up then he'd look into getting me in to a different hospital until I could be transferred. The ideal ward I prefer to be put at my hospital is the transplant ward... The nursing staff is extremely kind and so knowledgeable about all of my medications and needs while I'm in the hospital.

Fortunately by 6:30pm I received a call saying they had a bed for me at my hospital, unfortunately for me, that only open bed was on the orthopedic floor, not the transplant or even the CF floor. So Benito accessed my port at home before we left because the nurses on the Ortho floor are so unfamiliar with central lines and I don't like having to coach someone through something while I'm feeling so awful to begin with.

So we got to the hospital at around 8pm and ended up getting put on supplemental oxygen right away because my oxygen saturation was 91% on room air. It took a long time before my nurse was allowed to do anything beyond that because nobody knew who my doctor/hospitalist was and who to ask. So no orders got written for quite a few hours. Eventually they drew blood, got an xray, started me on IV Meropenem, and respiratory treatments every 4 hours.

What we know now:

My xray showed that my lower right lobe of my lung is shrunken up, but they can not hear ANY air moving throughout my entire right lung. We believe that the stenosis has completely closed off and has caused my lung to "collapse". Because donor lungs have a strong tendency to "glue" themselves to the recipient's chest wall with scar tissue, my lungs won't look like they've collapsed via an xray. They can't physically collapse while they're stuck to the chest wall, but it's giving me so much more pain than my usual lung pain. Attempting to take a deep breath is Very painful and I get a feeling not unlike trying to inhale through an empty balloon. Not comfortable.

Once my oxygen sats came up enough to where I could be taken off the supplemental oxygen there was no longer anything they were doing in the hospital that I couldn't be doing at home. I needed to come home. Most of the nurses on the orthopedic floor were very kind, but every night and day was a struggle with my medications. It got to the point that they were just having me skip the meds that they weren't sure of, so I ended up having some Awful acid reflux every night, which for a transplant recipient, it could mean rejection (yes, reflux CAN contribute to rejecting lungs). I had Benito sneak in my own acid blocker med that I normally take at home (by prescription, so no funny stuff) so I could get my reflux a little more under control.

So they got one last xray done and set me up with IV Meropenem to continue for another 2 weeks at home. I was told that my CF dr was going to speak to my other pulmonologist that does my bronchs and get a bronch scheduled for early the next week (this week). So on Monday I called my CF nurse to check in to see how that bronch was coming along... My dr did talk to my other doc, but he didn't tell him that I needed a bronch asap. :-/

So my nurse got in touch with my bronch pulmonologist and I got a call today saying that the soonest I could get scheduled was next Tuesday the 21st. I broke down and cried... There's no way I could wait another week in this amount of pain. She said my doctor is going out of town tomorrow and won't be back until Tuesday, but she'd call him and see if there was Anything we can work out. A little while later she said my doctor agreed to get me in for an early bronch at 8am tomorrow morning. Basically, his flight leaves at 10am and he's swinging by the hospital on his way to the airport so he can help me out before he leaves town. I can't tell you how much of a relief that is! I can't wait to be able to feel again what pain less than an 8 or 9 out of 10 feels like!

For over a month now I've been experiencing some strange new symptoms and they're continuing to get worse. I've had a Lot of itchiness that Benadryl doesn't help, ammonia smelling sweat (yes, very Gross!!), pain in my right upper abdomen, and some others that are a little too personal to share with you all ;-)

So I got blood work done and found out that my liver enzymes have been rising for a few months. It took a LONG time for me to get my doctor to agree to do any further testing, but he agreed to an abdominal ultrasound and a bunch of other blood tests. Everything is coming back negative, so we don't know what's causing my liver to act up, but during this past hospital stay I asked to be referred to a GI specialist so they can help me figure out what's going on (because my CF doctor told me he didn't want to "dwell" on it any longer). It's hard to just ignore all that stomach pain and constantly paranoid that you smell like ammonia... I'm grateful to be seeing someone soon who is familiar with liver issues and won't just ignore me.

I'm totally worn out, but I will try to get on here soon to tell you about what we've been discussing regarding retransplant. Basically the docs and I are worried that one of these bronchs with laser could go from routine, to life threatening because my doc can't see what he's burning once it all goes black with char and he could very easily hit an artery... Scary stuff, but something to think about.

I do hope you all are having a good year so far.

Until next time...

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!

A plan of sorts

So some of you may know, I was discharged from UCD on Friday night. All the tests that my CF docs wanted to do had been done, so keeping me in there while waiting for results just adds to the risk of me picking up some extra infection that I really don't need right now.
Before discharge I did a 2nd set of PFTs (pulmonary function tests) to compare to the ones done before my bronch where they dilated open my right airway. Pre bronch my PFTs were 37%, post bronch 41%, which we are going to now consider my baseline. Not a whole lot of improvement, but I'll take whatever I can get!
I talked to both of my CF doctors seperately on discharge day about what their thoughts are and what they think we should do. Basically they both agree we're looking at chronic rejection and they want to first increase the medication I'm currently taking for immunosuppression and see if that stops the progression of rejection. If that does not work, they think I should be sent to Stanford for an evaluation with them to see what they think I should do.
Some of you may or may not know that with chronic rejection, the damage done cannot be reversed, but we can only hope to stop the progression of further damage. I have never been in either acute nor chronic rejection since my transplant, so this is all new water for me. One of my doctors brought in a 10 page article for me to read about chronic rejection and all the available treatments (along with their risks). I began reading it while waiting to be discharged and got about 2 paragraphs down where I read that the "median survival after onset is 3-4 years". I stopped reading at that point and will pick it back up when I don't feel quite so overwhelmed.
Since I've been home I've been having a very hard time breathing and dealing with very sharp pain in my sides. While at the grocery store yesterday with Benito my side pain got so bad it knocked the wind out of me and I couldn't move for a few minutes.
Today I stayed in bed as long as I could, sleeping on and off until 2pm hoping that maybe some extra rest is what I need (I sure dind't get any rest in the hospital!). I need to get a hold of my academic advisor about retaking the class I'm currently in at another time because my instructor of this class is not being very understanding about assignments being turned in a little late. I'm also worried about work. I don't want to quit because I love getting out of the house and getting a paycheck, but I don't know how long I'll be able to keep everything going. I think I'm even beginning to get a little bummed out about everything, which doesn't help anything.
A plus is that I have great support from Benito and my family, so I never feel like I'm dealing with all this on my own. Even Roxy helps by snuggling with me when I don't feel good and Benito is busy at work. :)

So for now I go along with the increased immunosuppressant meds I've been taking and wait to go to clinic on the 26th. In the meantime my CF docs are going to discuss my case with a few other doctors including a kidney transplant doctor about what to do for rejection that isn't too hard on the kidneys. So my next blog may not be until after the appointment on the 26th when I should have more to share.

On a much happier note, my mom's birthday is tomorrow and she's coming here so we can go out and get a pedicure and go out to lunch! :D

Take care everyone! Lots of love and thanks for the prayers :)

Homeward bound

I've been given the green light to be able to go home! I've done all the testing they felt necessary and will be going home once my other half is off work and can come pick me up.
I'll update in the next few days about what the doctors are thinking and what the plan is so far.

Thanks again to everyone for their support!

Let's get this figured out!

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.

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

Home from a stay in the hospital

Friends and family,
I wanted to send a big thank you for all the well wishes I received from you during the past week while I was in the hospital. I'm happy to report that I was discharged last night after being poked, prodded, drugged, and watched over for the past 6 days in the hospital. While there I was running a fever (up to 102.4*), a white blood count of 18 (very high for someone post transplant/immunosuppressed), and in a great deal of pain (body aches). My doctors were very confused with what was the cause of me being so sick because all the cultures (blood, urine, and junk from the lungs) came back clean. My fevers and body aches have come down, so my doctors decided to discharge me before I were to pick up any unwanted bugs from the hospital. I'm still feeling pretty weak, running a low grade fever here and there, and body aches come and go, but I'm feeling so much better than this time last week! A big plus is that while in the hospital this time, my CF doctors were able to get me in for a bronch, only to find out that airway I keep having trouble with had closed itself off almost completely again. They went ahead and ballooned it open again and saw that behind the closure was full of nastiness that could have turned into pneumonia in the very near future. I am breathing a lot better than I had been, so them opening the airway was a huge help! It will most likely continue to be a mystery as to what caused all of the awful symptoms that got me admitted into the hospital, but I'm extremely happy to be home in the loving arms of my other half again.
On a side note, I just wanted to tell the world just how lucky I am to have Benito (my other half) in my life. He showed me these past two weeks just how supportive he can be, and I'm in awe at how much our love continues to grow. He brought me dinner every day after work and spent a few hrs holding me in the hospital while I was in such pain before having to make the hourr trip back home to get some sleep before work the next day.