Bad Day

Today was trial day for pain medication number 1. It didn't go very well. We went to the pain clinic and took a dose of morphine. Within 25 minutes he had hives. The doctor was wrong when he told us before that if something happened they could just take him back, etc. So, we had to go to the ER. We brought benadryl with us, so he took that. The ER was a mess and eventually Gess started feeling better (once the benadryl kicked in), so we left before he went back. So, basically the day was a wash. He feels like crap. Not sure how this is going to go.

Also, found out that he woke up this morning bleeding.

So not a good CF day.

Cystic What?

The story of us continues...

So we had speech class together and would chat and laugh and then all of a sudden he didn't show up to class for a few days.  I mentioned it to a mutual friend and he told me that Gess was in the hospital.  I was shocked.  At Bible study later I mentioned it and the chaplain of our college said in a nonchalant way "Oh, he has cystic fibrosis."  I had never even heard the term before.  

The next day some of us decided that we should go to the hospital to visit.  We met in the college student center and were getting ready to leave when Gess walked in the door.  It was shocking.  He didn't look sick.  I had heard that he was bleeding from his lungs, which I thought was really serious...so to say that I was confused, is to put it mildly.

I did some research on the internet--but back in '97 the internet wasn't anything like it is now.  I asked Gess about it and he told me the basics.  He assured me that he was healthy and going to live longer than me.  And for some reason I accepted that without question.  

Now that I think back on it, I can't believe that I accepted CF so easily.  Before long I thought that coughing up blood was "normal" for Gess.  It scared me, but it didn't freak me out like it seems like it should have.  

Now that I think about it I think that I just wanted to believe that it was "nothing." I loved him and that was it.   I was 19 years old and terribly naive.  But maybe that was a good thing.  I enjoyed being young and in love and didn't feel bogged down by CF.  Is that really a bad thing?

Our Story--how we met

It is fun to write "our story" sometimes, so I figured I would fill in little pieces every now and then. But I jumped right to engagement! So I figured I would take a step back.

Gess and I met in 1997 or so at Northwest Nazarene University in Nampa, Idaho. We have different recollections of the first time we met. We had a mutual friend who Gess remembers introducing us (and that friend's comment about how "well endowed" I was). I remember a slightly less than ideal meeting. We were in the campus cafeteria with a bunch of friends. Everyone else finished and had to go to class, but Gess and I just go there so we stayed there at the table alone. But he ignored me. The whole time. Reading Gun and Ammo magazines. I thought that he was quite a jerk!

Not sure how long it was from them until our next significant encounter...but that one was more pleasant. We ended up in the same Speech Class (you know, where you learn pubic speaking). It was the first day of class and I sat near the front, Gess in the back. Our teacher was a piece of work--who ever heard of a "valley girl" teaching people how to speak?? All I remember is Gess making some smart-ass comment and me turning back and smiling at him. I think his return smile made me blush :)

As the semester progressed, Gess moved from the back of the classroom to eventually sit right next to me. He also started to bring me chocolates and leave them on my desk. Of course, he made me laugh every day. Who would have known that speech class would have started something still going after 10 years??

Clinic Visit

We had a clinic visit this morning and it went pretty well. We decided awhile back to ask to see a new doctor, as things were just not working out with the other doctor. I am SO glad that we did! This appointment went so much better and I feel like we got more information in the 30 minutes we spent with this doc than we have in the years we have seen the other.

Gess's weight was up a bit--which is great. It is still not as high as he wants it to be, but at least it is going in the right direction. His FEV1% was the same as it has been for awhile--so he has a new baseline. We aren't happy with that (it is 43%), but it is what it is.

He has been consistently doing his treatments once a day and it going to try to move to doing them twice a day. He struggles with that move because of the time it takes and also because of how they make him feel. But, he is coming around!

We also talked to the doctor about the lung bleeding. It was nice to hear that this doctor will really go to bat for Gess with interventional radiology if necessary. He also said that he could send Gess to another hospital if necessary (the back story on this is that Gess has had 8 or 9 embolizations and the IR folks at the current hospital do not want to do any more on him. The last one was a huge fight to get them to do it.). It was nice to hear that this doctor will be an advocate for him.

This doc also stressed the importance of exercise, which is great to hear. I get tired of being the only one telling Gess that :)

So, we both left appointment feeling pretty good. (Oh, and this doctor is going to order the Ambry genetic testing so Gess can find out his second mutation).

After CF clinic we went to the Pain Management clinic. That was also an encouraging appointment. The doctor there is going to try to help find something non-IV that can help with the pain when it comes. Gess has so many listed "allergies" but it isn't listed on what that actually means. So on Friday we are going to the pain clinic, Gess is going to take a dose of morphine and then we will wait there to see if he has a reaction of any type. They want to do this while he is healthy, and this gives us a controlled setting so that he is already there if something goes wrong. The doctor is also going to try out a couple of other medications (non-narcatic) that will hopefully help. The CF doctor also was optimistic about the pain and said that just because he has this pain with his exacerbations, it doesn't mean that he will end up with chronic pain. So I think that was a relief.

So...all in all it was a productive and reassuring visit today!

Our story--the engagement

So...I am feeling a bit sentimental tonight, so I thought that I would tell my engagement story. I had been dating Gess for a year. It was our 1 year anniversary and Gess told me that he had a job interview in Boise so that we would go out for lunch after. He talked to my professor (the joys of a small college) and got me excused from the quiz. We drove into Boise (we lived in Nampa at the time, which is about 20 minutes away). He told me that we had some time before his interview (which was supposedly at Home Depot) so we would go to the rose garden that we liked to go to. So, we went and walked around. He was being sweet and stopped us in front of a particular rose bush--the Singing in the Rain roses. Then he got down on one knee and proposed. I said yes (of course), and then he pointed out that one of his professors was a little ways away videotaping the proposal. So sweet! After that, the professor took some pictures of us around the garden (see them below).

After that Gess said that he really did need to go to the interview and we got in the car and drove off. He "got lost" and we ended up at the Boise Airport. He told me that there was one more surprise in the airport, so we went inside. We got through security (after I showed off my bling to the security checkers of course!) and went to one of the gates (this was pre-9/11 and the changes in security). We sat there for awhile and then there was a call for a flight to Seattle. Gess stood up and said "That's us!" He had booked us on a flight to Seattle for the day. I was so excited.

He wanted it to be special so he rented a Town Car--not the best car for Seattle :) I remember him trying to parallel park that thing :) Anyway, he had arranged for us to meet his cousins for coffee. After that we went to downtown Seattle and just walked around. Then we had dinner at Palisade. It was a great dinner and a beautiful location.

Then we got back on the plane and flew back to Seattle. The next day, half of the college knew about the engagement, so it was easy for me to show off my ring and talk about the story.

Isn't he sweet??? :)

Sleep

I have pretty much slept the entire day. We slept in--really really late for us. We finally got out of bed around 11! Then we went to breakfast at this new place (not that great, but okay. we did spot Michael Winters who was Taylor on Gilmore Girls if anyone watched that...he must live in my neighborhood :) ). We came home after that and I was exhausted so I decided to take a nap. I woke up 5 hours later!! Holy moly! It was a long long week with lots of work. Plus one night I didn't get much sleep. So obviously I was just exhausted.

I do feel exhausted. Feeling overly overwhelmed (how redundant is that!). I just feel like there is too much--too much to do, too much I want to do, too much I don't want to do, too much I have to do. I need to find a way to pare this down.

Mixed Bag

It seems like everything with CF comes with a mixed bag--good things and bad.  This weekend was one of those.  Last week Gess finished his round of IV antibiotics and seems to be feeling better.  I am feeling better too--maybe it was the Vit D deficiency!  Work has been insane, but we are coping and have been generally doing well.  

So we wake up on Saturday morning and Gess says the "W" word to Beauty, so we got up and headed over to this new artisan bakery down the street.  The line there was was too long, so we opted for this great little neighborhood cafe that has a Moroccan flair and a couple of tables outside.  It was the perfect fall day, with the sun shining.  We had a great brunch. I had their special fresh toast made with sweet potato bread and nuts.  Gess went to the L side of the menu and had a Lamb and Brie sandwich, with turkey pumpkin soup.  I sat there thinking about what a perfect fall morning that was.  Gess, Beauty, and me sitting at a local cafe, eating yummy food while still in PJs and soaking in a little Vitamin D.  It was a lovely though.  I smiled.  I closed my eyes and felt the sun upon my face.  We left in a good mood....but within about a block, Gess started coughing up blood.  WTF!  He just finished IV abx!  3 full weeks!  We have PLANS for the weekend.  Ugggghhhh.  I hate when that happens!  He is okay, his lungs are hurting now.  We still had our Pumpkin Party.  But can't there ever just be a day when things can be "perfect"?  A day without vomiting or blood or crying.  Just on freakin day???? 

Feel like I dropped off...

the face of the earth! I have had very little time or energy for blogging or even the internet in general (for fun). I have basically been working and sleeping and studying. I am feeling better, but still exhausted. Work has all of a sudden got me swamped...and I am still trying to figure this school and work full time thing. And...did I tell you that I am writing a book in 30 days next month? Yikes!! I am CRAZY!

Low Vitamin D

My doctor called and the only thing that showed up on my tests was a really low vitamin D level. So, I have to take a supplement for 2 months. There was also a trace of blood in my urine, so I have to get another test in 3 weeks.

I feel less "dizzy" today but still exhausted (even with 10 hours of sleep). Hopefully either the supplement helps or I just get better!

Blood Draw Fiasco

So, here's what happened during G's blood draw yesterday. He has been on tobra, and so the clinic wants to monitor his levels very closely. (Although, they d/c-ed the tobra yesterday, so this was a big totally unnecessary mess!). He is supposed to have levels taken 2 hours post infusion, and then 6 hours post infusion. The options given to him by the home health folks were 1) have the draw in a work conference room or 2) go to a lab place to have it done. There is no way G would go with the first option, so he went to the lab.

He gets there and the people work there have NO IDEA how to draw blood from a port. One of the great things about having a port is that he doesn't have to get poked a bunch of times. So, the nurse calls in the more senior nurse to have her do it, and she says, "yeah, I can do it, let me get a needle." You don't need a needle to draw the blood. Apparently she comes back with a 2 inch needle, so G shows her how to access the line with a needleless syringe. Then, he realizes that she isn't going to "waste" any blood....which you need to do to clear out the line...so he shows here that.

So, she finishes getting the blood, removes the syringe from the port line and says "Okay, all done." She didn't flush the line--which you have to do to keep it from clotting. So, G reminds her of that and she says "what?" He explains it to her again and she says that they don't have any saline to flush it with. G started to panic a bit and ran to his car to see if he had one there. No luck. So the nurse runs next door and comes back with something she thinks with work--apparently because it has saline in it. It was eye wash of some sort. G told her that she could NOT put that in his port and promptly got out of there!

He sped back to the office and flushed his line. When he went back for the second draw he didn't let them touch his port at all--he took the needle instead!

I seriously cannot believe that the home health people sent him to a place that has no idea what they are doing! Dealing with these health care people really keeps you on your toes!

Lots of test, not many answers

So, I am not feeling well. At all. I have been feeling really tired and also a bit on the dizzy side (no blonde jokes please!). I thought that it would just go away, but it hasn't for about three weeks, so I decided to make an appointment to see the doctor (thanks for the gentle pushing focus in chat last night!). I called my doc this morning at 8:00 am, and was able to get an appointment for 9:45 am. I got there and describe all of the stuff that was going on and his first reaction was, "Sounds like you are pregnant." Man, do I hate that. He is the one that ordered Gess's test to make sure that he is in the same boat as 98% of men with CF--and he is. That is a hard thing for me to deal with--so I hate when I hear "Maybe you are pregnant" or "Sounds like you are pregnant" or whatever. Not his fault--just a sensitive subject for me. (He ran the test just in case, and it was negative--which makes my heart sink for some reason, even if I knew that it would be that way).

Anyway...also checked out my sinuses and ears and they are all clear. He says I could be anemic (good call Fred), but that I don't look like I am anemic. I left various samples with the lab, and I am supposed to find out the results on Friday.

So, all I know is that it doesn't appear to be the "usual" suspects.

I hope that he figures out what is going on and that there is an easy fix. As my good friend T put it, "You;ve ahd too much happen already lately." So, I am just taking it one day at a time and hope that there is something that can be done. I am exhausted. I sleep, but am still tired. And, it is making me a bit grumpy (or maybe more than a bit). And did I mention that I am tired?

And since I am updating...

Gess had quite a fiasco with a blood draw yesterday (that deserves it own blog post, so you'll have to wait for the whole story). The docs are continuing the cefaphime for another week, but discounting the tobra. He seems to be feeling a bit better, but the progress on that is slow.

Beauty's eye/face is getting better--it is not back to 100% normal, but the swelling is going down (she woke up yesterday morning with a swollen face--vet said to give benedryl). She has an ultrasound next week to see if the cancer has come back.

Man...we are one mess of a family!!

Husband talked to his mom...

And it did not go well.  The back story is that she sent us a horribly insensitive letter saying that she was so glad that we dealt with his CF so she was free to do "her own thing."  This was a few weeks ago and the weight of that letter and a lot of other past things that she has said have continued to bother us.  I was going to talk to her about it, but then G decided that he wanted to do it.  So he decided to do it last night on his way home from work.  I wasn't there so I didn't hear it, but he was extremely upset.  Apparently she doesn't see how she has done anything wrong.  She also reminded him of other things--like when he was in the ICU fighting for his life and she called because "she needed to say her good-byes."  Seriously, this woman has no tact whatsoever and just doesn't "get it."  All of her comments are so focused on herself--it is all about her needs.  

The list of this things is growing longer and frustrating beyond end!   It is so hard to see him hurting so much for this stuff.  I guess it is times like this when I am thankful that she lives so far away and we don't have to deal with her on a regular basis.  The thing that worries me a lot is that when things do get worse with the CF, she is not only not going to be a support, but in fact she is going to be a considerable liability. 

What a week!

Thank goodness it is Friday!  Man, what a crazy week. Nothing specific happened, but I have just had a rough week.  I ended up getting sick this week and feel really overwhelmed.  I am on strict "relaxation" this weekend, so hopefully that will help! 

I feel really helpless today. Nothing specific is going on today with Gess, but I have a friend who is in crisis. I spend an hour and a half on the phone with her trying to encourage her and talk her through some issues that she is having. Then I just read a blog by a woman whose husband has CF, who is really struggling and I needed comment and say something, but I just felt that everything that I had to offer was so inadequate. I see so much struggling around me right now and so much pain and there is nothing I can do to make it easier. I can listen and talk...but at the end of the day, CF is still there, relationship issues are still there, pain and hurt and sorrow are still there. I just feel like I am so helpless in these situations. I want to help. I want to "fix" things. But I just can't. And it sucks. Why do I feel the need to save the world and at the same time the unshakable feeling of being completely unable to do anything to help? Ughhhh.

Pain Management

Today Gess went to the pain management.  I had a PT appointment so I couldn't go along.  He said that it went really well and that the doctor was very nice and understanding and confident that they could find something to treat the pain and make him feel less loopy.  I guess the procedure is that the pain specialist will make notes for the CF folks and then the CF folks will respond to those.  We have clinic on Oct. 27th and also see the pain doc that same day.  Gess seemed relieved to be heard and hopefully that something good will come of this.  So that is the good news for the day!

Today

I feel like I can't concentrate on anything today. I think that this week has just taken a toll on me.

About Gess--he is doing okay. He started the IV antibiotics and all seems well with that. The transition to the new home health people has seemed to go pretty smoothly, they came out to do a blood draw this morning. He went to the hand specialist today and got his broken hand looked at. They gave him this splint thing to wear (apparently they don't do casts anymore if you are an adult, they "trust" you to keep the thing on--I told Gess that he should ask for a cast since we both know that the doctors cannot trust him--but to no avail...he told me on the phone that he has a splint). The doctor said that this break isn't too bad, so hopefully it will heal up alright.

I am a bit tired today. Gess was up in the middle of the night, and kept me up. Then I got up super early to be at the gym at 5:00 am. Surprisingly I was awake and functioning. The workout went well. It was the first with my trainer since the back injury. So I am anxious to see how I feel tomorrow. So far, the back feels fine today. I am also going to get a massage in about an hour, so that will be good for the body!

I have a million things that I want to get done this weekend, so I am starting a list to keep myself focused and sane! The only commitment that we have so far is a housewarming tomorrow afternoon. So, in addition to that I am going to get some cleaning and organizing done and hopefully have some time left over for some crafting. I have found recently that if I don't think about what I want to do on the weekend in advance and make "plans" I end up wasting the time away doing things like surfing the internet. So, not this weekend. I am not going to go super strict, but I am going to set up some structure so I will hopefully have a good balance of productive and restful. We'll see how it goes!

Letter from MIL

So we get a card from my MIL today...here is how it starts:
"As I prepare for my trip tomorrow, I feel it is important to tell you how much I appreciate the way you handle the pain and health issues of your lives--freeing me to do my own thing like go on this trip."

WTF?!!!! Ummm...dear son, thanks for not burdening me with your CF so I can "do my own thing."?????


Ughhhh---I am having a crappy day!

ER Visit Update

Our really good friend R took Gess to the hospital last night. R was amazing! Gess has kept saying how well R handled it, etc. I think that it was really good for Gess to have R go--to see that there are other people in our lives that can be there to help and that doing it is not going to be harmful to them.

Apparently the ER docs ran some tests and took a chest x-ray etc., and nothing significant showed up. Oh, except for the broken hand! When the pain started Gess hit the wall in frustration--breaking his hand (again)! So that is another issue...

The ER doctor gave him the option of staying in the ER overnight to be watched or going home and calling the CF Clinic in the morning. He chose the later option and arrived home around 3 am. For some reason he was talkative and talked to me for about an hour. My last memory before falling back to sleep was him saying he was ordering me a gift online and not to open anything that comes for him in the mail...at least I think that is what he said :)

Anyway, he was able to get a bit of sleep and the pain seemed to subside some. It comes in bursts and he describes it as "spasms." He has been feeling pretty healthy. But then the bleeding this weekend and now this.

So I called the clinic this morning and talked to the nurse coordinator, who in turn talked to the doctor. They think that this is probably an exacerbation--but just not in its "typical" manifestation. So, they are starting him on IV antibiotics (tobra and cefaphime I think) and hoping that works.

Also, they asked us if we would be willing to switch home health companies, and we agreed, so hopefully the start up and this round of IVs will go smoothly.

And on a related note, when we rescheduling his last clinic appointment I simply asked that he be scheduled to see a different doctor, and thus far, that seems to have been enough to make a change--the nurse hasn't said anything about our reasons, etc. and we haven't really volunteered the information. But if this is it and he now has a new doctor, I am very relieved and happy! We'll see how it goes. He is scheduled for clinic in late October.

Anyway, thanks to all for your support and encouragement! The light of day has made me feel better about what happened last night too.

Failure

I feel so awful right now.  I don't sleep, so my sleep doctor gives me sleeping pills to use in conjunction with CPAP (I have very mild sleep apnea). I hate the CPAP, and so have never made transition to using just that and other non-medication ways to fix the sleep issues. S0--with my doctor's blessing--I take ambein every night.  It works great for me.

Except tonight.

About 15 minutes after I took it--and while I was already starting to get drowsy--Gess had a huge attack of lung pain.  I have never seen him like this before.  He was in tears and tensing up, and just looked horrible.  He said "I need to go to the ER" so I jumped up as always to get out the door and then he said no, I want to wait it out a bit.

Then he remember that I just took my pill and would not be able to drive him.  But he needed to go.  So, I told him that I was calling his friend or an ambulance.  He said the friend.  I know that the friend is happy to be able to help.  But it crushed Gess to have to ask.  To have his friend see him this way.  A course, when the friend got here, I was already crying.  I feel like it is my fault.  If I hadn't taken the pill then I could have driven him.  But now, he is hurting because he is exposing his friend to this.  His friend is probably worried because this is his first exposure to this and I am going to be passed out, incapable of doing anything.  I feel horrible...but at the same time I NEED to be able to sleep.  I went for a year without sleeping well, and I could hardly function. 

So now I will fall asleep and have fitfull dreams wondering what is going on at the hospital.  Hopefully I can get in a couple of hours and be awake enough to go and take the friends place.

Damn it!

Hemo

So Gess is bleeding again. It started yesterday (Saturday). He had a big coughing fit and it started. It stopped pretty quickly after, but continued in spurts through out the day. He prescribed himself bed rest for the rest of the weekend, and has been pretty good about keeping to that--even when his friend had an extra football ticket.

The bleeding scares me. We have been down that road many, many times before. But it seems different now. When I met him, he bled a lot. He would go in when the bleeding wouldn't stop. Sometimes there would be a lot of blood. Once he a 2-liter bottle nearly half way en route to the hospital. He has had 7 or 8 embolizations--so many I have lost count. But the last one is what scares the crap out of me. It was October 2004. He bled so much. They finally decided to do an embolization. I was out home, trying to get some sleep (on his orders), when I got a call--he was bleeding and they were taking him down to IR for an embolization. I got dressed and to the hospital as quickly as I could, but he was gone by the time I arrived. I still remember the way the room looked. Blood on the white sheets. Blood on the floor. Lots in a basin that he was using for a receptacle. Blood, way too much blood.

I don't know how long the procedure lasted--but it was a long time. It was a really difficult procedure--his lungs being so damaged from all of the prior embolizations. But he made it out. He went to the ICU for recovery. This part I knew how to deal with. He lays down for 2 hours so that the access point in his leg can clot off. I check the bandage near his groin every 10 minutes or so to make sure there was no bleeding. We were about 2 minutes from being released from ICU when it started again. More bleeding. Lots of blood. He had to stay in the ICU. Later--I don't know how many hours or even days--he had another huge bled--it wouldn't stop. They had to vent him to preserve the airway.

He looked so scared. He asked me if his life insurance was in order. He went to sleep. For 3 days.

Since then he hasn't had very many bleeds--and the only ones are small. But this weekend scares me. More bleeding that "usual". More frequently. He says that he won't be able to make it through another bleed like that "one." So what if the "one" comes again?