Update

Man, have things been crazy! Gess spent Thursday night in the hospital with what they determined to be a migraine. He was in so much pain. I feel really guilty for not being there during the night because he had a horrible experience. I **know** that it is okay for me to go home and sleep, but when something goes amiss, I feel so guilty. It is such a struggle dealing with this part of CF life. Apparently he woke up and was in a lot of pain and couldn't see because of the migraine, so he couldn't find the call button. He ended up falling and hitting his nose on the bed, etc. Not good.

When I got there on Friday his pain was better, but still not manageable and his vision was still off. The neurologist decided that he wanted to do an MRI to make sure that there wasn't something else going on. The pain did get better, or at least under control, so when the MRI came back clean around 8 pm, he was discharged. They gave him a mix of medications that seemed to help with the pain AND allowed him to sleep, so that is something that we are going to explore further with the pain folks, since the pain medication that works (demoral) does not let him sleep. Speaking of pain, because of all of the stuff that happened, he hasn't been able to start the new pain regimine, so no update on that.

The weekend was pretty uneventful. We did some shopping and hung out with friends. I got a great print for our bedroom that I LOVE. I will have to take a picture and post it. On Sunday evening we decided to walk over to a local restaurant/bar for dinner and Gess started to cough up blood during that walk. Ugh. About a 1/4 cup.

On Monday we had a clinic appointment. We really like our new doctor. He is SO much better than the one we saw before. Gess didn't do PFTs because of the bleeding. The biggest item of discussion was obviously the bleeding. What the doctor wants to do is file for a consult with the intervental radiologist to see about scheduling an embolization. The IR team has been very hesitant to have anything to do with Gess is the past and the one embloziation that they did do did not go well, so I am anticipating some resistance. But I think that this is the right first step in getting this issue address. The doctor has already told us that he will send Gess to another hospital if he needs to, so I am hopeful that things will work out. I don't want Gess to have another embolization, but as far as I can tell, there isn't another way to stop this bleeding. He bled again last night, so they are continuing.

We also got back the results of the sleep test and Gess has mild sleep apnea with some desaturation at night, so the sleep team is recommending a CPAP. I have a CPAP (which I never use), so I was joking with Gess that would could have matching devices. I guess I'd better get mine out and start using it before he goes to get his :)

Gess is having a rough day today--he is understandably very frustrated with what is going on. I am too and I am also scared about how much this is affecting my work. It is a struggle to deal with these issues and work full time, etc. But, I am trying to stay optimistic about it. We'll see.

Thanks for all of the support during these crazy times!!! I really do appreciate it all!!

Question

How do you get an MD after your name if you don't know how to write a
valid prescription? Just curious.

My sister is a pain!

So, my sister finally took her kids and went to stay with my mom--not an ideal situation, but better than with the abusive jerk. I guess she moved on Friday or Saturday. According to her she is on some waiting lists for places, whatever. So yesterday she sends an email asking for money for gas and to do laundry. I didn't respond because Gess usually handles family loan requests and he was asleep most of the day. So, about an hour ago I get an email from her asking if we had a chance to talk about it, etc. I was in my 7th hour in the ER and a bit perturbed. So, I shot back a quick email to say "We are at the ER, so we haven't had a chance to talk about it." Then after a few minutes I emailed her again to say no. I have told her no more money several times. This was hard because of the circumstances, but I think that it is the right thing to do. So, here is the email I got back in response:

"i am sorry i wasnt asking for you to give me money i asking for you to help me and my kids and itts not like i wasnt going to pay you back i am right now without my own house without anything except what i was able to bring to moms and on the verge of losing all my other stuff that is imporant to me and the things that are not that important but hard to replace when you are a piece of shit like i am i was only trying to help me and my kids out any way that i can because like you and i both know they should have better then what i can give them and i have tried to do better for them by leaving the house that i did have i dont want to go back but i might end up having to again i am sorry that i even ask i wont anymore della"

Seriously??? I mean, am a wrong for saying no? I understand that she is in a rough spot, but is my money really going to help? She has borrowed a lot of money in the past and paid some back, but not much. She is always asking people for help and she is constantly emailing me and complaining about her life, etc. She says that it helps to vent, but it really stresses me out. She is 30 years old, and can't do anything to take care of herself, let alone her 3 kids. I have done everything that I can think of to help, even sitting down with her and showing her how to set goals and make a plan to meet them, etc. I really just don't know what else to do. It literally makes me sick to my stomach.

Are these kids going to get hurt because I don't give her money? It would be easier if I didn't have any money, because I just flat couldn't do it. We are not rich or anything (and God knows CF is frickin expensive!), but we do live a comfortable life. And you know, if my best friend called me right now and asked to borrow money, I wouldn't even think twice before getting out my check book. But that is because I know that it would definitely be an emergency and that she would use it and help herself and pay me back asap. With my sister, it is not like that at all. I mean, I have probably given her over a thousand dollars and what difference has that made? But, at the same time, how can I wear a $800 necklace, while my nieces and nephews are in this situation??

Of course, the timing of this is just great! I promise I am going to have a happy post at some point...I don't want to seem like a whiner!

Admitted

Still in the ER but he is being admitted. They think that it is a
migraine but can't get the pain to a place where he feels comfortable
going home. Knowing how much he tries to avoid this place, the pain
must be excruciating. He has seemed to get some sleep with the help of
a cocktail they came up with for him, so that's good. As for me, I
missed another day of work, but fortunately grabbed a novel on my way
out and finished that.

Taking a cue from Tina, I woke up and decided that today is going to
be a good day. Of course I was wrong.

I have been really tired lately so I didn't set my alarm and figured I
would get to work when I woke up. So, I woke up around 7 am. Light was
shining in the window and Beauty was snuggled up next to me. Pretty
nice :) I can be to work by 9 if I get up at 8, so I decided to just
lay there and collect my thoughts, etc. Awhile later Gess called up to
say get up and let's get some breakfast. Sounded like a good plan to
me so I got up and got ready.

I was putting on my makeup when Gess called out for me. He was dizzy
and couldn't see right. Fast forward to now...and we are sitting in
the ER. The docs are sure it is a migraine but he is in so much pain
that he asked to be admitted. The docs think that home will be better
than hospital so they would prefer not to admit. They gave him some
medication and he slept a bit but he is awake and in lots of pain now,
so I don't know what will happen.

Seriously.

Of course...

Yesterday afternoon I was sitting at my desk and I see the familiar MSN messenager button pop up from Gess and I see his one word message "Fcuk" (he has clumbsy fingers :)). Immediately my heart sank and I knew what was happening before he said it. Bleeding. Again. 4 days after being released from the hospital. He tried to explain why it happened. Walking up a hill. Ate a huge lunch. Behind a smoker. Exacerbation. Only a couple teaspoons. But, really, those qualifications don't matter. He wasn't running a marathon. In fact he wasn't running at all. He was doing is "normal" work routine. This is the pattern that we have seen. He will bleed. Usually start out small, then it gets bigger, or it happens more often, or some combination thereof. He went to the ER last month because of bleeding. Then was admitted last month. Then again this month. So what's next? More bleeding. I am scared that at some point is it going to be so big that it won't stop. I am scared that he is going to end up on a vent again. Or, maybe even worse, that they tell us that there is nothing else that they can do to stop the bleeding. Then what?

I am trying to be as rational and calm about this as I can, but honestly, it scares the crap out of me and frustrates me to. I am tired of hospitals and doctors and home health people. I feel smothered by them and all I want is a little space to breath. Ironic that I just said that, considering it is my husband's lungs that I am talking about anyway.

There are days like this when I just wish that we could have a few "normal" days. Days when I didn't think about CF a hundred times and when we could just be a regular married couple. Not one with death looming in the shadows. And then I feel selfish, because my husband is the one that has to feel this disease taking over his body, not me. But when I think about it, it does take over, just in another way. It doesn't manifest itself in thick mucus building up in my lungs, but instead in many other ways. I have been told by more medical professionals that I can count that I am too stressed. I get that. But how do I fix that? This disease is taking me over too. Not in the same way. But it is there. I am scattered and frazzled. Jumpy. Afraid that at any moment I am going to hear a thud and my whole world is going to come crashing down. I walk on the edge, wondering where I belong and how I will be able to make it. And then wonder what "it" is.

For now, there are no answers. Only little steps to get through the day. A cup of coffee. Lunch with some old co-workers. Work. The gym. Email. Homework. I will push thoughts of more out of my mind and focus on the next little task. Keep the focus as long as I can. Try not to long for the break that I know I need, but doubt will ever materialize. But, keep a tiny sliver of hope, because I need it.

Home and Exhausted

Gess was discharged on Friday afternoon. We were prepared for him to be discharged so I was at home getting some work done while they got the paperwork read at the hospital and Gess called to have me go over there right away because they were "f-ing up" his discharge. Apparently the home health coordinator was there and wanted to give Gess a lesson on how to use home IVs. Seriously??? We could probably both do them in our sleep! And no, these weren't "new" IVs and they were the simple push kind. Apparently my presence scared the guy because he was well-behaved when I got there :)

Of course, it still took a couple more hours to get him freed, but we were eventually able to get him home. Honestly as I type this i can't remember what we did on Friday night--I guess that is how tired I am!!

We had a birthday party planned for Gess and he said that he wanted to go ahead with the party, so we did some work for that. We had a very nice breakfast at the great local cafe called A Caprice Kitchen. After that we went home and got ready for the party. Gess knew that we were having a party, but didn't know that we were making it a "theme" party. We decided to have a cowboy party. I ordered a ton of cowboy hats and bandannas and other silly stuff. It was a good time :) i should have some pictures to post soon. We just hung out at home after everyone left.

Today we got up and went to the Skagit Valley Tulip Festival. That involved about an hour drive north to some tulip fields and we walked around. It was okay, too many kids and people, but the flowers were beautiful, and it was a gorgeous NW day. We had lunch, made a quick stop at the lululemon outlet store and then came home. I was completely exhausted when we got home so I decided to take a nap. Apparently I slept for 3 hours before Gess came in and wake me up. I was still tired! I did get up though and we hung out and watched a movie.

Gess decided to go to bed before 9:00 pm and I am ready to go to bed as well.

It has been a good visit with Gess's dad, but it has also been tiring. He is a great guy, but he is always moving, moving, moving. He wants to buy stuff for us all of the time too. He bought a new grill and then spent the morning putting it together. I think that Gess still have some "issues" with his dad. He had a rough relationship before...parents divorced early on and his dad wasn't around. Gess has always been trying to impress his dad and the two of them are so competitive. Over the past several years it has gotten better and we really have a great time with him. But, I can tell that there is still something there, Gess wants to impress his dad and wants his dad's approval. I know that his dad is proud of him and loves him, but he is probably not the best at showing it. So...who knows...

Gess's dad leaves in the morning and Gess and I will try to get back on top of everything. Last week was a wash in a lot of ways because of the hospital. So, it will be busy I am sure. I swear that helping Gess and dealing with these issues when they come up is a full time job! Makes me think about my career choice and how I am going to be able to juggle everything when things get worse with Gess's health. Honestly I am not sure that I am going to be able to do it. Also, it really makes me sad because I know that this means that we won't have children. But even typing that makes me cry and feel sick to my stomach. It makes me feel like a complete failure because I can't do everything...even the stuff that I want to do more than anything.

Not going home today...

The rumor was that Gessner would be discharged this morning if nothing else happened, but it turns out that they want him to stay another night. Not because anything happened...just 'cause. Actually I think that it is a good idea. It seems silly to me to discharge someone directly from ICU. So, he is supposedly being moved to a regular floor sometime today and then can come home tomorrow. Provided, of course that there is no more bleeding.

My father-in-law arrived today for a visit, which is nice. He will hang out with Gess some so that I can take a break, which will be nice. Not that I have been here 24/7 or anything. It is just nice to know that someone is there and that someone is not me all the time :)

In Other News...

...the drama with my sister continues. Yesterday (of all days) I find out that her husband hit my niece and caused a bloody nose. My sister downplayed it by saying that he meant to hit her in the arm and she moved so she got hit in the face instead--hellllllooo!! He HIT her. Oh, and not with his hand, but with his computer keyboard. Nice, I know. Her husband also hit her and has been threatening to do it more often. Now, to me, this seems like a sign to get out...but has she? Nope. Did she call the police when he hit her? Nope. Hit my niece? Nope. Seriously?? All I know is that guy better hope he never sees me again.

So, I told my sister that she needs to get out of the house right now--she has been talking about it for awhile anyway, but can't find a place to go. After hearing about the niece yesterday I decided that I had to report it. My sister is not going to do anything. So...I called CPS. It was not a good experience. The guy on the phone was a tool. He even tried to dissuade me from reporting by telling me that my sister might be a "suspect" since she is letting it happen. I told him that I didn't care--the kids are in danger. Geez. As far as I know, CPS hasn't done anything, and honestly that doesn't surprise me. Even though I am 100% sure that my nieces and nephew would be better off with complete strangers than they are with my sister right now, it was still a very difficult call to make. I am not sure what it was about it, but it was hard.

Today my sister sent me another email with the same sort of complaints...no place has emergency openings, she has no money for a storage unit--that's right, a STORAGE UNIT! I emailed her and said all of that is just stuff...take your kids and get out of there. All while I am sitting in the ICU watching my husband.

On the way home from the hospital I started to doubt my stance. My sister has hinted (very strongly) that she wants us to give her money--because she needs someone to pay $300 a month to help supplement the rent, etc. I have refused in my mind to even go there. Because honestly I don't believe that all of the money in the world would get her to make the move. I don't think that it is lack of $ that is stopping her...she just isn't ready and willing to make the necessary changes. But on the way home I started to doubt this...what if I am wrong? What if it is just a little money that would make the difference? I know that it isn't...but....ugggghhhhh. I can't believe how much guilt and stress I have over this situation. ***Sigh***

Still in ICU

But no more bleeding...so we are just sitting around. They talked
about discharging him tomorrow. I am not sure how I feel about this.
I mean, I am always happy when he gets to come home, but at the same
time, I am afraid that the bleeding will start again and we will end
up back here.

Sitting in the ER again

Gess had multiple bleeding episodes today and so we are in the ER.
Thankfully our good friend Ta was available to sit with him for awhile
while I wrapped up some things at work. 7 hours later we are still
sitting here. The powers that be have decided to put him in the ICU so
that they can monitor him more closely. They are also alerting the
interventional radiologists in case they need to go in and stop the
bleeding overnight. Hopefully that won't happen and all of the doctors
can pow-wow in the morning.

I am exhausted but scared to go home. The bleeds haven't been huge but
cumulatively it has been about 3 cups. The last time he had a huge
bleed and surgery he ended up on a vent.

The weird thing about this is that he has been feeling better than he
has in months and now this. I don't know what is going on and that
makes it even more scary.

Happy Birthday Hubby!

Gess turns 32 today! It has been a rough day for him for some reason--not sure exactly what is going on and he doesn't want to talk about it. I am sure it is birthday related because he said that it would be better tomorrow. When I think about his birthdays I do have mixed feelings too, so maybe it is something similar to what he is thinking. Part of me is celebrating another year and saying "take that CF". But there is also a part that looks as it is one step closer to the end. I know that it is that way for everyone, but death seems so magnified in CF. Death feels more real. I think about the "median" age and watch as we approach it. 37 seems so far way, but also so close. I don't like to think about that number, yet find myself doing it.

On a happier note, we are having a party for Gess on Sat. It should be loads of fun--I'll post the details and pictures after we have it :)

Pain Clinic and stuff

So, about as soon as I posted my trying-to-look-on-the-bright-side post yesterday about insurance Gess called to tell me he had an episode of hemoptysis. Ughhh. He has been feeling better, with the exception of the pain. That is what is so weird about this. He is #1 bleeding and #2 in pain and he doesn't seem to have some active big lung thing going on. Usually the bleeding and pain come with an exacerbation. So, I don't know what the heck is going on, and it looks like the doctors don't either.

We did go to the pain clinic today and had a good visit. The pain had increased pretty significantly in both frequency and intensity, which is obviously a concern to everyone. The demoral doesn't work well for this really. So, now we are on the hunt for a better solution. The doctor wants him to try Pregabalin. He tried it once before and it made him "loopy" so he is not optimistic about this, but I am going to press him. We need to find something that works that he can tolerate. He left the clinic in a pretty foul mood, which I can understand. I know that in my mind, these changes are a progression of CF and are an idea of what is to come...which of course is not something we want to think about.

So...we'll see.

Up next, sleep study tomorrow night (which means I get a free Saturday night and the entire bed to myself!! :) ). Then gastric emptying study next week.

Oh, he is also participating in some research study and gets to use a portable spirometer. Pretty cool!

Thankful for good insurance

I was just opening some mail and open a benefits letter from our insurance company and noticed that Gess met his out-of-pocket max in February this year. The downside is that means we have paid a lot of money this year already. The upside is that we will pay less for the rest of the year. We still have office visit, ER, and prescription co-pays, which add up, but are much less than the 20% of the service charge for other stuff. I am so thankful that we have this type of medical coverage that allows Gess to get any treatment he needs without us worrying (too much) about the cost. But of course, with that comes the fear of losing health insurance for whatever reason, but we won't go there today ;)

Pain

Gess seems to be feeling better, lung-wise, but the pain is still a persistent issue.  It seems like at least once a week the pain gets so bad that he needs to take demoral.  I don't know what is causing the pain and I don't know how to fix it.  We see the pain clinic on Friday, but honestly I am pessimistic about their ability to figure out what is going on.  Is this what it is going to be like from now on?  There has to be another answer, but what?