Home Again

Gess was discharged today and is home.  He is on demoral, so is already driving me crazy.  I keep telling him he needs to sit down, but he keeps getting back up.  Seriously I am going to have to tie him down!  I have such a low tolerance for the "demoral activity" right now.  I hate, hate, hate, hate, hate it.  Ughhh...

I am also unsure about him being home.  They didn't do anything in the hospital, so there is no reason for me to believe that we aren't going to be there next week.  We have no answers and not much hope that we are going to get any.  

Today I was feeling especially overwhelmed and just wondered how much more of this we can take.  Gess seems to be weathering this better than me, which makes me feel weak (and I really don't like to feel that way).  

I am exhausted, utterly exhausted.  The very thought of CF makes me want to burst into tears right now.   But, I'm the only one here, so I can't break.  I have to keep it together somehow.  So, here's to hoping that I can and that Gess can spend more than a few days out of the hospital.

Trent and Nicole

Another CFer lost his battle with CF today. I never met Trent, but I consider myself friends with his fiance, Nicole.  She is such a loving partner and worked so hard to help Trent through this horrible disease.  My heart breaks for Nicole right now.  I hope that she can find peace is this very difficult time.

More visitors today

We have become friends with one of the guys that Gess works with and his family. They are from France and have been in the States for about 18 months. They have three kids ages 6, 4, 18 months. The kids absolutely LOVE Gessner (and like me too :) ) and have been wanting to see us, so we had planned to have a BBQ with them today. But since Gess is locked up, that was impossible. So they came here for a visit instead. I brought in KFC and we had a nice "picnic" and then went outside a little bit to play and then came in and colored for awhile. Gess is tired now, but I think that he really enjoyed seeing the kids and our friends.

Having visitors in the hospital is such a new experience for us, partially because we don't live near family and then also because Gess has never been comfortable having friends visit him here. I am personally very glad that he is becoming more open about it and letting more people in. It's nice to have company. Fortunately the people that have visited have been very comfortable and at ease with visiting (or at least appear to be). It didn't bother the kids today one bit to see Gess hooked up to an IV. When our friend was talking to the oldest about hospitals she was very matter of fact and just said that they are places for doctors to try to figure out what it wrong when someone is sick. I know that it was good for Gessner too. He is always afraid that people are going to think of him differently or treat him differently because of the CF. Because of that we are very selective of who we "let in" and it has made such a big difference. 

Gess wanted me to bring him some "regular" clothes for when the friends came and I forgot, so I bought him a new outfit. Here's his new shirt :)

And so it continues...

Gess started to feel like an exacerbation was coming on last weekend, so he started IV antibiotics on Monday. He felt okay for the first few days, but then started to feel worse. Yesterday Gess came home from work early because he wasn't feeling great. He ended up coughing up quite a bit of blood during the evening (probably 2 cups total--1/4 to 1/2 cup at a time). He called the pulmonary fellow on call, who said that he didn't need to come in right away, unless things got worse. Unfortunately they did. He spiked a fever and started to feel dizzy. He kept saying that he felt like he needed to be in the hospital but that he didn't want to go because they can't do anything for him. He continued to feel worse and said that he felt like he was going downhill fast. So, off to the hospital we went.

As ER visits go, this one was really smooth and uneventful. They took him into a room directly from triage instead of sending him back to the waiting room. When the ER attending came in he basically said "You know your body better than any of us could and if you don't feel well enough to be at home, we are going to admit you." Of course the process took awhile, but he was admitted and I eventually went home to try to get some sleep.

They started him on vancomycin, in addition to the tobra and ceftaz that he is already on. They took another sputum culture and will reassess the antibiotics when that comes back.

Today was pretty uneventful. The hope is to have the respiratory therapists come in and do some CPT while he is on pain meds, to hopefully let him get some of the junk up while having the broken rib.

I don't know what else they are going to do. It seems like he is in a bad place...not feeling well enough to be at home, but there really isn't much that they can do for him in the hospital. So...I don't know how long they are going to keep him. I wonder if a good old-fashion two week tune-up might be in order. But, they don't seem to do those anymore since beds are always full and I am sure that the insurance companies are not crazy about that. The other issue is getting admitted on the weekend means that things always move exceptionally slowly.

Some friends came by this afternoon and it was nice to hang out. We ordered pizza and just talked and laughed. I think that was good for his spirits.

Another set of friends is going to come by tomorrow. It is nice that he is allowing people to visit him at the hospital more. I think that it is good for him, and it is nice for me as well.

I hope that something happens and he starts to feel better soon. This has gone on for entirely too long and I know that he is exhausted and frustrated.

Because I'm tired of downer posts...

Man, does my hubby have a cute smile :)

CF and Relationships

I have said it many times, but I will say it again. CF sucks. I have been trying to work my way back to "normal" after the last few months of hosptial stays and drama. It has been hard and I am not there yet. But I am getting there. One thing that has occured to me is how much CF has hijacked our lives for the past few months. Literally and figuratively. The literal is obvious, but the other is more subtle. It invades the relationship that I have with my husband. Life stops become out about "us" or about our dreams or even life, and it become CF-focused. All of our energy--physcially, mentally, emotionally, spiritually--goes toward fighting through the current crisis and then preparing for the next. We stop becoming Gess and Lisa, husband and wife, people...and start becoming patient and caregiver (for lack of a better word).

I have always hated the word caregiver (or even worse, caretaker). I don't know why, but it has such a negative connotation to me. A caregiver is a worker in a nursing home. Not a 30-something wife. Not the attorney who worked her way through school so that she could get out of the horrible home situation. Not the woman that had dreams of doing great things. Not me. But, over the past few months, that is what I have become--in a loose sense of course. While I am not doing everything for Gess, especially now, I felt a definite shift in our relationship and our roles. And it makes me uneasy.

I suppose I knew that this time would come eventually...I mean, CF is a progressive disease. But Gess always insisted that it wouldn't be that way, that he is different and will stay healthy for a long time. And I wanted to believe him, so in a way I did. I certainly didn't think that this time would come so soon. He is only 32. Of course, it is not that bad yet. He still works. He is very independent. He is very capable. But during the course of the drama of the last few months, I did sense this subtle shift. And it scares me.

I think that it scares him too. We have talks about how he wants to protect me and things that he wants to do so that I don't have to take care of him. Silly things, like moving in with his dad or divorcing me so that I won't be responsible for his medical bills. When he talks about these things, nothing that I say can make him stop. No logic can override the emotion that he is experiencing at the time. So, after a while I just listen. Listen, and feel my heart break a little more each time.

I can't imagine what is feels like for him to feel his independence slipping. I am sure that he sees the toll everything is taking on me and he feels guilty. My naturual inclination is to try to hide it. But of course, there is only so much that you can hide. I cry in my room instead of near him. I try not to talk about "negative" things. But, it is still there. I wear the stress on my face. You can see the sadness in my eyes. My eyes always deceive me. And I know that he sees it.

So, here we are. Each hurting and scared and helpless. We see the pain that the other is experiencing, but cannot do anything. We just coexist.

As he is feeling better, I see that things are shifting back some, but I can't help but wonder how much damage these time do to us. I wonder how much of myself has been lost, absorbed by this disease and what is has done and what it will be.

Of course there are no answers, and I am not really looking for one. I just have to get up each day and try to do my best. To look for the little things, those moments between us. To enjoy the moments that we do have and make it a point to try to find them. I know that Gess loves me and he knows that I love him, and some days that will just have to be enough.

Second and Third Opinions, IVs, Stress, etc.

After Gess was discharged I contacted two other CF Clinics--Denver and UNC--to see if the doctors have any other ideas about the bleeding and also to see about a general second or third opinion.  The nurse coordinator from UNC contacted me immediately. She is SO great!!  She is going to talk with the CF docs and going to see about the IR doctors taking a look at Gess's last BAE.  I think that this might be our best option regarding embolizations.   

The nurse coordinator from Denver also got back to me and told me that Dr. Nick wanted to talk to me directly.  I talked to him yesterday about the situation.  He said that they don't do a lot of embolizations at Denver and that there "go to" IR doctor left, so now if they need a procedure, they just use whomever is on call.  He said that embolizations are really only good for life-saving situations.  It was nice to talk to him and get his perspective on things.  We may still go to Denver for a consultation about general CF stuff, but it doesn't look like anything specific will happen with the bleeding issue.

This whole bleeding thing is so frustrating and we really do seem to be running out of options. 

On top of this, Gess started to feel like he had an exacerbation coming on.  So...back on IVs.  He is doing tobra once a day and ceftaze three times a day.  He did go back to work too, which is good in a way.  I think that being home is really mentally difficult on him.  So...I think that finding the balance between work and rest is going to be key.

With all of this, I am just extremely stressed. I ended up taking an unplanned nap for a few hours yesterday and then slept until 10 am this morning.  I think that my body is just exhausted.  I struggle with what to do with my workouts since I know that exercise is good, but too much can be stressful on the body too.  I have yet to start looking for a job, so that freaks me out a bit too.  I am trying not to get too worked up, but if you know me you realize that is extremely difficult for me.  So, right now it is one day at a time.  I am sitting in a Starbucks catching up on blogs and email while waiting for my car to be serviced.  I have a massage scheduled for tomorrow.  I am making lists.  I am taking deep breaths.  

Frustrated

The CT Scan didn't show anything, so basically there is nothing that can be done right now.  Of course, I missed the full discussion with the doctor (it always happens!) but talked to him briefly and then got the recap from Gess and his dad.  Good news, Gess is coming home tonight. Bad news...this visit seemed like an extraordinary waste of time.  

Gess's CF doctor is noticeably frustrated with all of this too and is going to consult with some interventional radiologists outside of the hospital.  

Gess asked about transplant and whether he should be evaluated for that and the doctor said that his numbers, even with bleeding, are not low enough for that.  I am sure that we will talk about this again at our next clinic appointment.

The "rules" for when Gess comes into the hospital for bleeding have changed now.  Now, he only comes in if the bleeding doesn't stop or if it is accompanied by other symptoms and/or signs of a CF exacerbation.   Also, even if there is another huge bleed that doesn't stop, it is unclear what, if anything, they will even be able to do.  I guess resecting part of the lung is an option, but not a good one. 

So, we are all really frustrated.  Gess is visibly upset about it and mentioned that he "knows that [he] is going to bled out, so [he'd] better get all of this stuff in order."  I hate when he talks like that because it sounds like "giving up."  I am pissed.  I hate that he is hurting and probably scared and worried and there is nothing that I can do.  I am frustrated that there is "nothing" that can be done. While part of me thinks that there has to be something, the other part of me thinks that there might not be.  We are going to see about consulting with other doctors, etc., but that will probably take a bit of time, etc.

I am also pissed that I feel like we have to put life on hold now since it will only be a matter of time before he starts to bleed again.  We have talked about a cruise, for example, but is that a good idea when he might start bleeding there?  Ughhhh....so frustrating!  I hate this fucking disease!

Hosptial Stay #7

Not that I am counting or anything...but seriously...7 admissions since March. I told Gess that I am going to plant myself in the clinic today until I get answers.

So...last night we went out to dinner at our new favorite hamburger spot (Hamburger Harry's if you are in Seattle--yummy!). Gess wanted to get out of the house, but wasn't up for much, so this was his choice of adventure. When we got home he didn't feel well so sort of half laid down on the couch and what do you know, he started coughing up blood. Ugh. It was probably about a 1/4 cup, which is the presumptive "you need to go to the hospital" amount. But he refused, arguing that "they" (meaning the doctors) couldn't do anything. This is a valid concern considering. I still suggested that he go, but he decided not to and went to bed. About 45 minutes later I heard him calling me and came downstairs to find him coughing up blood again. This time about 3/4 of a cup. I told him that we were going to the hospital. While he argued with me for a bit, he eventually agreed. The bleeding had stopped by then, so we didn't rush. He asked me if I wanted his dad to come out and I hesitated a bit before saying my normal "no." So he got on the phone and called him (even though it was after midnight Florida time). His dad said that he will be here in the next couple of days. It was be nice to have him here, but at the same time I feel badly since there is probably not a lot that he can actually "do." CF seems to involve lots and lots of waiting.

Anyway, so we took Beauty to our friends' house for a sleepover and then headed to the UW. When we got there the ER waiting room was empty, which I don' t think that I have ever seen. By now, the doctors and nurses have seen us so many times that we don't have to go through the normal "so what brings you in tonight" sort of stuff and they all seemed rather sympathetic.

The on-call pulmonologist came down and she is a doctor that occasionally shows up at the CF clinic (according to Gess at least, I have never seen her there) and is somewhat familiar with Gess, having met him on the floor before. We decided that it was best not to do anything last night since IR was not in the hospital and the bleeding had been stopped for a couple of hours since that time. So, they admitted him to the ICU and I went home to get a little sleep.

No calls in the middle of the night, which is a good thing. Today will be an interesting day to see what happens.

This is just SO frustrating. Ughhhh...

Another Rough One, but today might be better

Yesterday was another rough day. Gess was completely out of it because of the pain medications and made it nearly impossible for me to sleep. Finally around 10:00 am, I just feel asleep even with all of his noise...I guess when you hit a certain point you will sleep no matter what!

Also, Gess had another bled yesterday morning--about 1/4 cup. I really don't know what we are going to do about this bleeding. I wish that we could just get all of this doctors--the pulmonolgist, the liver doc, the interventional radiologist, and anyone else with a clue, into the room at the same time to brainstorm and come up with a plan. There seem to be so many different variables going on and everyone has their own little piece of it. I am sure that they do talk, but it seems like it would be efficient and effective to all get together at the same time and talk.

My friend Tasha came by yesterday and made me go out with her for a little bit. We went to REI and did a little retail therapy and then to Trader Joes. Tasha's husband was "on-call" in case Gess needed anything. It really was nice to get out and not have to be "on edge" for the entire time. I did threaten to kick Gess's ass if he got out of bed while I was gone :) . I also snuck out for a workout later that evening. It was a killer workout, but it was what I needed.

Last night Gess and I decided that I would sleep in the guest room if he made noise. Of course, within about a minute, he started making noise. I stayed in bed and read a book for awhile, since he likes me to be near him, but after he kicked me for the 10th time and then hit me in the head (thinking involuntary arm and leg movements), I finally just went upstairs. I turned on the fan near the bed and that blocked out all of the noise. So, imagine my surprise when I woke up at 9 am this morning! I have been getting a max of 2 hours of sleep at a time, so to sleep for 9 hours was nothing short of momentous! I feel a lot better, though am still not caught up on sleep.

Taking it easy today. Did a bit of cleaning this morning, and now am playing scrabble, blogging, and doing homework. We are going to venture out to a soccer match tonight--so hopefully that goes well.

I hate demerol

Today has been a rough day.  Gess is home, but on pretty high doses of Demerol.  If he would lay down and rest while on it I wouldn't have a problem.  But it makes him loopy and antsy...which is not a good combination.  He is continually up and doing something, but not really coherent enough...it is hard to explain, but it seems dangerous.  So much so, that I feel like I have to watch him all of the time.  He also doesn't sleep well, so he wakes me up several times.  So, the bottom line is that I am exhausted.

And with that exhaustion come much frustration.  Since March he has been hospitalized 6 times.  The pain is getting so severe that it requires narcotic medication at least once a week.  I am worried that there isn't an end in sight.  We know that they didn't get the source of bleeding this time, so it is only a matter of time before it comes back.   The pain specialist gave Gess some new medication to try to help with the pain, but the irony of it is that he hasn't been well enough to even try the medication.  Seriously.  

These days make we wonder how I am going to be able to deal with things when it gets worse. I don't want it to get worse.  I just want to have a little bit of "normal."  And then that makes me feel horrible.  I feel like a bad person.  I need to be the strong one, Gess is the one that is suffering through this and I feel like a complete failure.  **sigh**

Update

It looks like Gess will be discharged from the hospital today, which is great.  But, it is also frustrating.  They didn't find the source of the bleeding, which means that the bleeding will come back.  So, we will be back in this same boat.  The only question is when.  If the last few months have shown me anything, it is that the "when" will be sooner, rather than later.  And then what?  The doctors said that they couldn't find the source of the bleeding...but it has to be coming from somewhere...so will they try to look again?  Or will they say "we already looked."?  Then what?  I brought up the idea of going somewhere else to get a second opinion and Gess wasn't very receptive to that idea, so I don't know what we will do.  I guess right now all I can do is enjoy that fact that he will be home and try to not stress out too much that he is home (and in a lot of pain, on pain medication, etc.).  CF sucks!

Out of surgery

They weren't able to find anything to embolize after 3.5 hours of
looking. He is still bleeding ( but thankfully small amounts), so it
has to be coming from somewhere. Now we are sitting in the ICU waiting
for the doctors to come and talk to us. I'm worried about what seems
to be a lack of options.

More bleeding

Gess woke up to more bleeding this morning...probably around a cup
now. Surprisely things have moved swiftly and they just took him into
IR for another embolization. Now I just wait.