Sunday, February 22, 2009

Can I have C Diff?

So, Gess has c diff and is taking antibiotics for it. He just finished IVs and has about another week on the orals for the c diff. He seems to be feeling better--lung wise, but is still having a lot of pain.

My, on the other hand, I am sick :( I went out on Friday night and when we got home I felt really sick. I vomited and got really red and blotchy. I have basically slept the entire weekend and have been taking benadryl to help with the hives and itching. My stomach has been really upset and I am having some of the symptoms that Gess it possible that I have c diff too? I haven't been on abx for awhile...but the symptoms....ughhhhh... I wish that I could get healthy! One sick person per couple is more than enough!

Thursday, February 19, 2009

I wish I had good news...

But I don't.  Gess is still feeling crappy.  He is vomiting a lot and in a lot of pain.  He is on IV demoral again.  The only good thing about this is that he cleans and organizes when he is on demoral.  This morning I woke up to find him cleaning out the fridge--and it looks great!  Yesterday when I came home he was mopping the floor!  I love the cleaning, but I hate that he is feeling so horrible and that the drugs are having such an effect.  There has to be another way.  No one seems to know what though.

Monday, February 16, 2009

c diff and the big d

Yep, you read right...Gess has c diff.  We found out right after we crossed the border from a last minute trip to Canada.  He has been feeling crumby (like stomach flu crumby) in addition to his CF-crumby so at clinic 2 weeks ago he talked to the doc and they ordered a c diff test.  It took awhile for Gess to bring the sample in for the test, but sure enough he has it.   So, he is finishing up his IV antibiotic course and starting the orals for the c diff.  Really? It seems like one thing after another.  I hope that with getting rid of the c diff he will feel a lot better.

As for the big D...that's me...and it is depression.  It is back and has been for awhile.  The good news is that I am realizing it, but bad news is that it really sucks. I am struggling to stay motivated for anything and that is hard.  So, I am slogging away, trying to keep my chin up and hoping that I make it :)  Ahhhh...the joys of life.

Sunday, February 8, 2009

Clinic Visit

We had a clinic visit on Monday and a lot happened. First, we brought our friend Ta with us. That was a huge step. Gess is always very protective of his health. Since we have been married (10 years), I can count the number of times on one hand that someone besides me has visited Gess in the hospital. In fact, neither his mother or only sister have been there in that entire time. We have never had friends involved. So, the fact that he is letting friends in is huge. A couple of months ago, R--who is Ta's husband--took Gess to the ER for me.

We asked Ta to come to clinic so that she could see the process, meet the docs, and just feel more comfortable with the situation so that I have "back-up" if necessary.

We, of course, went in with a huge list of things to talk about. Gess had started coughing up blood the weekend before so no PFTs for him. We did meet with the social worker and talk about some of the continuing issues we have had with the clinic. The scary thing is that she confirms everything that we are experiencing and says that she has heard it from patients before. The question to me is why then is nothing being done? I can't believe the issues at this clinic! Anyway...

We insisted that we see a different doctor and that has been a good move. He seems to be very knowledgeable and on top of his game, which we appreciate. I also see that there is still a level of trust there--I can tell in how Gess responds.

Because of the bleeding and Gess generally feeling crappy, he started back on IV antibiotics. He is doing tobra and ceftaz. Tobra is hard because it makes him feel crappy and we have had problems with his kidneys. At the same time, it is usually good at knocking out infection. So, I am keeping my fingers crossed.

I also asked the doctor if there was anything that we can do to help reduce the number of infections and cycles of IVs. I think that last year he was on IVs as much as he was off. The doctor said that exercise is key (which I have told Gess a million times). I really don't think that Gess "gets" how important exercise is and what the doctors even mean by exercise. So I asked the doctor to define "exercise" for Gess. And from that discussion came the suggestion for pulmonary rehab. I am all for this and in fact brought it up several times. Gess agreed to do it, but I am afraid that he will back out when he finds out the time commitment, but I am hoping that he will. I really think that he needs it.

The other thing that we talked about was his sleep. His sleep is so erratic and he makes funky noises and moves and wakes up, etc. I can't believe that he is getting good sleep in that. So, he did wear a pulseox meter for one night and based on that the doctor suggested that he do a sleep study. I, again, have been telling him to do that for a long time, so I am happy that he agreed.

He also has been vomiting a lot, so I brought up the possibility of doing a gastric emptying study--which he agreed to do as well!

So...hopefully these things will help and we will be on our way to a better year. Gess sees the pain specialist and also has some liver appointments scheduled. It is exhausting just thinking about it! Oh...and he decided to see a naturopathic doctor. I am excited about that too :)


I can't bring myself to go into the CF Chat room because it she won't be there. I only "spoke" with her there--or through comments on blogs--but I would consider her a friend in an instance. I still can't believe that she is gone. I keep thinking about the pink afghan she had just finished and the neat tools that she had found on the web and posted to her blog. I miss her.

The other thing about losing someone from the CF community is that it reminds me of what is to come. I related to Jenn because she is one of the few that have the liver/spleen issues that my husband has. The liver involvement adds a huge other set of issues, so it was so nice to have someone to compare notes with. I hate CF!

Friday, February 6, 2009

So much to say...

but really no words. I feel like I have a lot to say, my mind is racing and there is stuff to tell, but at the same time, the words aren't coming. I am stuck and I am sad. I am lonely and I am tired. I am frazzled and I am stressed. blah.