IVs and change

Gess started on IV antibiotics again today.  He is not happy about it, but seems resigned to the fact that they are necessary.  The whole process was pretty painless (which of course I can say since I wasn't the one being stuck by any needles).  Yesterday I emailed the nurse to check on Gess's cultures from the last hospital visit and to just report that Gess is feeling like crap and that something is wrong, so we need to talk to the doctor, etc.  His regular doc is out of town so my first reaction was "oh great, this is going to fun!!" since we had to deal with the "other one."  

But, the nurse asked a few questions and I was able to answer those and said,  "yes, it's time for antibiotics."  And the nurse got the orders and sent them to home health.  We are going with the big guns--2 grams of merophenem and tobramycin (IV).  Home health came out tonight and accessed his port and he did his first dose of merophenem.  He'll start tobra in the morning.

Gess and I also had a talk before this and decided that he would talk to work and either take some time off or at least work from home during this course.  He talked to his boss today and they seem completely fine with him working from home for the next two weeks.  He is going to have a meeting on Friday with the boss and the boss's boss to work out details.  Apparently the boss's boss doesn't think it necessary to get HR involved, etc.  So, I am optimistic that this is going to be a relatively easy request to handle.  We will wait for the more complicated stuff later.

To some staying home while on heavy-duty abx is natural, but for Gess this is HUGE.  He rarely takes a day off for this sort of thing, let alone 2 weeks.  I think that part of that is his attempt to prove that he can do everything despite CF.  He has beat odds, and wants to do so with gusto.  I get that.  But on the other hand, he doesn't get the rest that he needs and so no wonder his gets so worn down.  He says that the IVs make him feel like crap.  Hopefully the extra rest will help with that this time.  He will still be working some at home, which is probably a good thing too.  He gets pretty stir crazy if he isn't working...so this will probably be best for my sanity, especially with me being home right now too.  

I think that he is really scared right now.  He sees this as the beginning of what is to come I think.  He called me downstairs tonight to ask me what I thought about trying to get one of those beds that lets you elevate your head so that he can sleep more upright with the bleeding.  This is definitely not a conversation that he would have initiated a year ago.  Also, yesterday we talked some about disability...and that seems to be sinking in with him as a real possibility in the future.  It is hard.  He has recently had a couple of job opportunities literally fall into his lap.  Both would pay really really well and one would have international travel, which is something that he has wanted to do for a long time.  But, at this point, his health just would not support those jobs.  I think that really hit him.  He is not good at accepting that this disease poses limitations.  He actually seems to be handling it rather well, at least from my perspective, but knowing him, there is likely some brewing inside.  

So, we'll see.  I am a bit nervous about all of this.  About how I will deal with it and whether I can be supportive enough or not.  And of course, it seems to make my job search a little more pressing.

The next 2 weeks should be interesting...and I should get to bed so that I can be up for his 6 am dose!

Tobramycin Inhalation Powder (TIP) Improved Lung Function In Cystic Fibrosis (CF) Patients With Respiratory Pseudomonas Aeruginosa (Pa) Infection

Main Category: Cystic Fibrosis
Also Included In: Respiratory / Asthma;  Infectious Diseases / Bacteria / Viruses
Article Date: 20 May 2009 - 6:00 PDT

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In a Phase III study, TIP, an inhaled investigational formulation of tobramycin, improved lung function (as measured by FEV1) in cystic fibrosis patients withPseudomonas aeruginosa (Pa) infection, compared to placebo. The data, presented today at the American Thoracic Society (ATS) 2009 International Conference in San Diego, also demonstrated, with respect to secondary endpoints, that TIP decreased sputum Pa density, hospitalization and other antibiotic use in these patients versus placebo. 

TIP is currently in Phase III development for the management of CF patients with Pa infection. TIP, a dry-powder form of tobramycin, is delivered in approximately 4 to 6 minutes via a hand-held, portable, pocket-sized inhaler device, twice daily. 

More than half of the people with CF have Pa infection, a respiratory condition caused by the Pa bacteria that settle into the thick mucus trapped in the airways. Pa is the most common cause of infection and lung damage in patients with CF. 

"The daily treatment routine for patients with CF can take hours. The study findings presented at ATS are promising, as a new treatment option like TIP may allow people with CF an alternative for Pa management," said lead investigator Michael Konstan, MD, Professor and Director, The LeRoy W. Matthews Cystic Fibrosis Center, Rainbow Babies and Children's Hospital and Case Western Reserve University School of Medicine. 

In a Phase III placebo-controlled study, patients with CF were administered treatment with TIP 112mg twice daily or matching placebo in a 1:1 ratio during Cycle 1 (28 days on and 28 days off treatment). This was followed by 2 cycles where all patients received TIP1c. The primary efficacy variable was relative change in forced expiratory volume in one second (FEV1) percent predicted from Day 1 to Day 28 (Cycle 1). 

At 28 days, patients on TIP showed a significant improvement in FEV1 % predicted with an average improvement of 13% versus placebo (p=.0016). At the end of the first full cycle (Day 56), improvement over placebo in predicted lung function was maintained. 

With respect to secondary endpoints, TIP reduced the mean sputum Pa density by 2.59 log10 colony forming units (CFU/mL), compared with 0.24 log10 for placebo. The proportion of patients requiring other antipseudomonal antibiotics was lower with TIP versus placebo (19.6% vs. 32.7%) and the mean duration of additional antipseudomonal antibiotic use was shorter (17 vs. 31.1 days, respectively) over the 56 days of Cycle 1. There were no respiratory-related hospitalizations for patients on TIP compared with 12.2% for patients receiving placebo (average duration of 12.3 days). 

Adverse events were reported by 75.5% of placebo-treated and 50% of TIP-treated patients. The most commonly reported adverse events with placebo were cough, lung disorders and productive cough. With TIP, the most common adverse events were cough, lung disorders and sore throat. There were no major changes from baseline in vital signs, hematology, blood chemistry or urine protein. Audiology tests at selected sites indicated that there were no clinically meaningful decreases in hearing thresholds. None of the patients reported adverse events related to hearing. 

"Novartis is working closely with respiratory researchers worldwide to develop medications to treat complex respiratory diseases with limited treatment options, including cystic fibrosis," said Robert K. Zeldin, MD, VP and US Medical Franchise Head of Respiratory and Dermatology, Novartis Pharmaceuticals Corporation. "We are pleased to report the findings of the TIP Phase III study, and we look forward to additional clinical data as we work towards regulatory filing." 

Source 
Novartis Pharmaceuticals Corporation 

http://www.medicalnewstoday.com/articles/150782.php

Angry

I realized this weekend that I am really angry at CF.  Grrrr...

babies...

I am making baby shower invitations and part of me just wants to cry.  I mean, I am happy for my friend.  But every day I think about not being able to have kids.  I hate that CF takes that away from me--it is going to take my husband and also takes this dream away.  I will never have a baby shower (I didn't even have a wedding shower, but that is another story).  I will never been able to feel a baby inside me.  I will never be able to decorate a nursery or hear someone call me "mommy."  And you know what, that just sucks.  It is not fair, and quite frankly, I hate it.  

Gess is home

Gess was discharged today...the blood cultures haven't grown anything (there are still about 24 hours before he can be deemed "clean" officially). We aren't entirely sure what happened. The docs said that this could be a side effect from the surgery. So...hopefully it was just a freak thing and he will be feeling better soon. He mentioned that his lungs are starting to feel a bit gunky though, so maybe there is an exacerbation brewing and IVs will be in the near future.

Honestly I am exhausted. Emotionally I am spent. So hopefully this weekend will bring some rejuvenation. I'll think about the job mess later :)

In the hospital again...

I really can't believe it, but Gess was just readmitted to the hospital. He was discharged on Saturday after an embolization. Sunday was a very rough day because of pain medication. But Monday and Tuesday were a lot better. Today seemed to be even better. He woke me up this morning, urging me to get up to go out to breakfast. I wanted to stay in bed, but he wouldn't let me :) So we had a nice breakfast and then we went off to work.

In the afternoon he called me and told me that he didn't feel good...he said that he felt dizzy, naseous, and just "off." On the way to the car he started vomiting and that vomiting continued for a long time. He went home and tried to take a nap, but the vomiting continued. He finally called me and asked me to come home because something "was really wrong." He called back while I was enroute and said that he was wondering if he should call an ambulance...he was feeling that badly. But, I was close, so he decided to wait for me.

I picked him up and went right to the ER (we are only 7 miles from the hospital). I dropped him off at the front door and went to park the car. When I got to the ER he was laying on the floor with people standing around him...apparently he fell when trying to stand up to go back to triage. So, he got right in. They took blood and did a chest xray. He had a significant fever. The chest xray also showed a spot. The ER doc ordered IVs, determining that he has puemonia (based on the spot on the xray). They started the work up to admit him. The medicine team decided that they aren't convinced it is a lung infection, so they are holding off on the IVs (I agree with this decision).

The doctors suspect that it could be a blood infection again. So...we wait for at least 24 hours because that is the earliest that something will show up on the blood cultures.

Really, I can hardly believe that this is the 5th hospitalization since March. We are both just exhausted. Let's hope that this is uneventful and we get a break at some point.

Why is CF so noisy?

I am up passed my bedtime because I can't sleep...Gess is making SO much noise. I mean, I am happy that he is home to make noise, but seriously, a girl needs her sleep!!

Home (and driving me crazy)

The surgery went well, thankfully! For those of you that don't know, he had what is called a bronchial artery embolization. This is either the 8th or 10th of these that he has had. When he was followed by the clinic at UNC they did them rather frequently, but at the UW, they don't do them often at all. Gess's doc said that the last one of his patients that had one was over a year ago. Gess's lung bleeds have been increase in both frequency and severity, so a BAE was really the only option. In fact, we had discussed this with Dr. T and Gess was scheduled to see the interventional radiologists on Friday (the day he actually had the surgery) to set up a procedure on an outpatient basis. The procedure lasted about 2 1/2 hours, which was shorter than I had expected. The were able to locate one bronchial artery and when they pushed the dye through it they saw a small amount of blood, suggesting to them that this was the location of the bleed. It was consistent with where Gess told them that the blood was coming from (based on how it felt). So, they embolized that. They also looked for other arterial, but didn't locate any. Dr. T said that there could be more that they just didn't see, but hopefully they got the "big one" that has been causing all of the drama.

Gess spent another night at Hotel UW on the ICU floor and then was discharged today.

He is on pain meds, which leads to behavior that really annoys me. So I am trying to be patient, and since that doesn't work very well I am hiding in my room :) For some reason I have a very short tolerance for the drugged out behavior.

I am optimistic that this is going to mean much much less bleeding. For perspective, he had his last embolization 4 1/2 years ago, and the bleeding really didn't start to be a problem until the last 6-9 months. So...if we can go another 4 without huge bleeds, I will be a happy camper!

Now if we can just get the pain under control...]

Thanks for all of the thoughts and prayers that were sent our way. We really appreciate it!!

And for those of you that will ask--I am taking care of myself as much as possible. To be honest, the last couple of months have been extremely difficult on me. Last night was really difficult. Gess was being grumpy and short with me all day (bossy, snippy, I couldn't do anything right), and I left the hospital in tears. It is so stressful because I am worried about him and have all the emotions that go with that, so my fuse is pretty short. We also got into a fight over pain meds on the way home from the hospital. I find myself feeling completely overwhelmed at times with CF and that seems to be increasing. I am not exactly sure why this drugged out issue has such a huge effect on me, but it does. Even now I hear him stumbling around downstairs and I have to keep reminding myself to unclench my jaw! So...it is a process.

Out of surgery...

Everything went well...more later

Headed into surgery...

So, last night Gess started bleeding again, so we went to the ER. They admitted him to the ICU. This morning they decided that they are going to go in and do an embolization. We had a little issue with the IR nurse...he said that they would only do anything if he was actively bleeding. We told him that was not the plan, etc., but he argued with us. Fortunately for us, Gess's main doc is the ICU attending right now, so we called him. Of course, the nurse tried to argue with him--guess who won? So, they just gave Gess some platlets and are about to wheel him down to IR. It will be a couple of hours, so let the waiting begin...

Nothing new

Really nothing new to report regarding Gess's health. We don't think
that he got the swine flu thankfully. He has not felt great though so
he worked from home this week. The bleeding has continued, which of
course is a concern, but we are waiting to hear from IR to see what is
next. Tough issue, but I am trying not to stress.

Swine Flu....seriously

So...Gess's boss and his entire family has swine flu. Confirmed case; in quarantine. Seriously??? Gess got the email today. He had a face-to-face meeting with his boss the day before the boss stayed home from work. Gess called the pulmonary fellow on call, and luckily Gess's doc was sitting right there, so Gess got to talk to him. The doctor isn't overly concerned yet. He said that some doctors are misdiagnosing people around here. Of course, if Gess has any flu like symptoms we are to call immediately and they will give him medicine. I just can't believe of all things!