What I do when I'm in the hospital

What do you do while your in the hospital so long? That's a question I get a lot. So I thought I would try to put a little list together of what I have done during this 2 week hospital stay.

• 1,680 Minutes of vest treatment
• 84 Aerosol medications
• 42 meals, 56 snacks
• Slept approximately 150 hours
• 56 Doses of Iv meds
• Taken 644 pills
• 7 showers
• Read 2 books and 4 magazine's
• Watched 10 movies and about 114 hours of TV
• Wrote 6 blogs
• Spent hours on facebook and pinterest
• Had visits from Aunt Charlene, Uncle Ken, Lori, Mom, Dad, Colton, Brandon, Sarah, Katie, Megan, Alex, Paul, and Jamie
• 42 Vital checks
• Walked 180 minutes

So although it seems I have all kinds of time on my hands, I am actually doing a lot of sleeping, eating, and treatment. Do I get bored, absolutely, especially the last few days when I feel so much better. But to feel so much better it is worth it.

Inspirational, who me?!

I get told rather regularly that I'm inspirational. The definition I found for the word inspirational is:

 1 a [noncount] : something that makes someone want to do something or that gives someone an idea about what to do or create : a force or influence that inspires someone.

I find this very flattering and a true compliment. I also find it hard to understand why they would say that I am. I once asked a friend that had told me that, why she thought that, her response made sense and helped me understand why someone might feel that way.

Me:   I'm not sure how I have been an inspiration to you though, but thanks!

Her:  Really?!? There are so many things that could be limiting you, Jamie. But you refuse to be limited. You are a fighter. I've read some of your blogs and they leave me in tears. You have a daily battle in your life. Sometimes I allow things in life to get me down, and then I'll think of what other people have to deal with and realize it could be worse. Statistic wise, I don't think you were supposed to have a baby, but look at you now! You have a precious little boy! How can that not be inspirational?

Another friend tells me sometimes "At night when I go home and I'm too tired to even want to brush my teeth, I think about you and how you have to do an hour of treatments before even thinking about brushing your teeth and going to bed!"

So I thought about it and realized, that yes I do have things that could limit and do limit me. I am a stay at home Mom and wife (to an amazingly supportive husband), I have every single responsibilities that a "normal", "healthy" mom and wife has. I also have CF which requires my constant care as well, with hours of treatments, and tons of pills, and yes I have to do hours worth of treatments before thinking about brushing my teeth and going to bed (I don't floss regularly...okay never really, and I go to the dentist and the hygienist is all like you really need to floss, and I'm thinking lady ain't nobody got time for that!). The thing is to me I'm just a "normal" woman, mom and wife. I have been doing CF my whole life, I don't know what it's like to not have CF, not do treatments, and not take pills. This is my normal. So when someone tells me I'm an inspiration, I think, really? I'm just living my life like a regular person. This I think comes from my parents teaching me growing up that no matter how bad you have it there is always someone worse off, fighting a harder battle. That's how I live my life, always have. Another thing I was told and taught was, yeah you may have been dealt a bad hand, but that don't mean you can't play the game, you play the hand your dealt. I'm thankful for the life I have CF included. Does CF get me down sometimes, yes, it's hard sometimes, but there's so much more to my life than CF. If CF ran my life and mind all the time I would drown in it. One of my favorite quotes is "Love your life, love the life you live" I love life and I love living my life! Life is so precious and taking any bit of it that I have for granted would be ignorant.

My blogs, facebook posts, and videos are never intended to make people cry or feel sorry for me. I write and make videos to educate others about CF and what it is, and is like living with it. If in my efforts to raise money and awareness for CF, it has brought some to appreciate life a little more and be thankful for what they have or don't have, than yes I guess I can accept that I might be an inspiration.

My Married family

When some speak of their in laws it isn't always because they love them or even like them, you hear horror stories of the dreaded mother in law. My experience with my in laws couldn't be farther from that, I absolutely love mine!

I have always liked my in laws, Janet and Jerry, since Brad and I got together. I was always afraid of what they thought of me, meeting their son, getting married, and having a baby all within a year! They must have thought we were crazy!! I think I remember Jerry asking Brad at one point if that was what he really wanted to do, was marry me, and we were told by mine and his parents don't just get married because your gonna have a baby! But we knew we were soul mates and would spend the rest of our lives together.

I know now that they absolutely love me! Like most couples starting out Brad and I didn't have a lot of extra money. Janet would always be bringing over groceries for us, or would give us a little extra cash to go out to eat. She has always bought clothes for Colton that she either found on sale or at a garage sale. If you know her you know that she is one of the most giving people you could meet. They both have always been there for us, and most parents are for their children. They are always willing to take Colton when I'm in the hospital or even when I'm not he loves spending time with them. We are a very close knit family.

You can imagine how devastated we all were in August when Janet was diagnosed with Kidney and Brain Cancer. It was followed by brain surgery and having her kidney removed, and through the grace of God came through those surgeries with flying colors. Unfortunately it was short lived. In December she became sick again, and after a CAT scan in January they discovered another tumor in her brain. After a MRI she was referred to Henry Ford Hospital in Detroit where she seen a neurologist who presented her case to a panel of 25 neurologist and oncologist. They then called and said she would go down again for a PET scan this week. They also said she will have to have brain surgery again, we don't know when yet, and some form of radiation. There are several different types of radiation they can do, we don't know which one it will be yet. She was admitted to Midland again on Thursday with a bladder infection, she was very nauseated and throwing up all the time for a few days while there, but that has gotten better and she came home yesterday. She is very weak, especially on her right side, her speech is slurred, and she is sometimes confused or can't focus. This is all symptoms from the tumor. It's hard to see such a strong woman look and feel so weak. I have faith in God she will return to the strong, can't hold her down woman!

I didn't even mention my sister in law Shannon and her husband Phil! Shannon is going through so much being there and taking care of her mom and dad. She still texts me to check on me, ask what she can do for me at home, if Colton is taken care of, does she need to make Brad lunches just telling me if I need anything to let her know! She picked up Diesels medicine for us, you just can't ask for better. And Phil, he's from the south with a thick southern drawl. He chatted with me on facebook for a bit the other night, and the first thing he said just put a smile on my face "Hey sugar" and I read it to myself in his voice :) lol It's just the kindness of being there, chatting with me, knowing that they are there if we need anything, and all while going through one of the hardest things there is.

Brad's cousin Lori has also been a blessing, she has flown home twice from New York to be with the family.  She has been a tremendous help, because sadly she came through cancer with her husband. Knowing how things go, and processes that need to be taken is very useful. Having her there to listen as well and give feed back has been great. She is also hosting a benefit in her hometown for Jerry and Janet in the next month or so, to help them with there expenses. Taking the time to stop and see me here in the hospital in Grand Rapids when she flew in on Saturday. She is a beautiful soul, and I am blessed to have her in my life.

There is so many of Janet and Jerry's family that are truly great people and I am so happy and blessed to have married into such an amazing family.

A plan of action in place!

It is my 3rd day here in the hospital, so far everything has gone pretty good. I did have a headache yesterday and some nausea that was kinda miserable. I talked with Dr. Fitch yesterday too, he said my x-ray showed infiltration in my left lung, and my blood work was all in "my normal" range. I asked him about doing the desensitization to the bactrum now or wait until my most resent sputum culture comes back to see if the results yield better susceptibilities. He thought it was unlikely with my history of Resistances that my new cultures would change enough to make a difference in the course of treatment. Our plan is to now move forward with the desensitization tomorrow morning. I will be given small amounts of bactrum over the course of 8 hours, if each dose goes with no reaction I will remain on it for probably 3 weeks. If I start to have a reaction with any of the doses they then go back one step and start again. It is successful with bactrum, not as successful as a penicillin may be, but Dr. Gonzalas feels I should do good and have success.

So I will continue my treatment plan and after the desensitization hopefully I will be on Zosyn, Bactrum, and Inhaled Colistin. I will probably be here a couple weeks, that will include lots of vest treatments!

Wish me luck :)

You know you have CF and are in the hospital when...

This is kinda inspired by my friend Jenny over at My life as a Livingston who wrote this blog a couple days ago that was hilarious and spot on! If you don't read her blog already you should she's a great writer and really funny.

So you know you have CF and are in the hospital when....

1. You tell the nurse tech to zero the scale first and to measure in kilograms not pounds.
2. You request a room by number based on the window space and view.
3. You tell the on call doctor what meds you will be taking, the doses, when you will be taking them, and for how long.
4. All the nurses on the floor know not to wake you before 10am.
5. You bring a full size suitcase and at least 2 other large bags for your stay and still somehow manage to forget something.
6. The nurses know you by name. (I love my nurses on 6 South at Spectrum in Grand Rapids)
7. Instead of calling the doctors first when you need to come in you text you nurse who is also your friend and tell her to save you a bed.
8. You also know the cleaning and transport staff by name.
9. You know the menu by heart, Tuesday lunch Lasagna, Thursday dinner beef tips and noodles, Friday breakfast cheese omelet. Because in the 4 years I have been coming here it has not changed!
10. Last but not least you don't wear a hospital gown and people look at you strange when you leave the floor, because your pushing an IV pole but look like a normal healthy person!

I could probably and will probably think of more. Can you think of some? Post them in my comments!

Admitted to Club Med AKA Hosptal

If your a facebook friend you already know I'm in the hospital and you also probably know the timing could not be worse. My mother in law is fighting cancer and some other nasty stuff that has come along with it, including a recent bladder infection that has landed her in Midland hospital again. She will be having another brain surgery sometime soon, but can't while she has this infection. She also has gall stones but I don't think they are bothering her so they will just leave them be.

Coming into the hospital is pretty routine for me. I normally don't have too many issues putting my life on hold for a few weeks to get myself feeling 100%. This time has been very hard. I tried to take oral anti-biotic at home for 2 weeks hoping that would put whatever was stirring in my lungs to stop, it didn't work. It started with me just not feeling great, I wasn't feeling really bad. Then one morning while doing my therapy I started coughing up blood, not a lot, and it is common in CF with irritation from coughing or infection. Then fevers started to come in the mornings and at night unless I took ibuprofen every 6 hours. The blood would come and go through out the past 2 weeks along with the fevers. Yesterday I woke up feeling pretty crappy, had a fever and was coughing up blood again. I finally said this isn't working I need to go in.

Over the past 2 weeks I had mulled over several ways to avoid this and reasons I wanted to avoid it are legit!

Reason 1- Wanted to be home for Brad and Colton and the rest of my married family as they are going through the hardest of times right now.

Reason 2- Scared coming in a hospital full of sick people could actually make me sicker, don't know if you've heard but there's a flu epidemic!

Ways I thought I could avoid it.

1- Oral anti-biotic (tried, didn't work)

2- Do home IV's. This question has been posed to me in the past and again today. If I ever do home IV's. The answer is yes I do every time I am on them, but only for the last week of treatment. I have always stayed in the hospital for at least 2 weeks to start with. There are a couple reasons for this.

• When I start IV's I always feel worse before I feel better, the meds make me feel like I have been hit by a truck, all I do is treatments, eat, and sleep.
• My IV schedule is usually an IV anti-biotic every 6 hours, which usually equals out to be 6am, 12pm, 6pm, 12am. That schedule leaves me exhausted.
• I don't "stop" life to take care of me. I am a mom and a wife, if I was home it would be very hard for me not do anything and rest. I have a great support system at home thankfully, my parents can take Colton and take care of him when I'm in here, but it's not as easy to ask when your home.
• I have tried to do at IV's home only in the past when Colton was a baby, I never felt I got 100% out of the IV's because I just wouldn't rest.

Ultimately this time around depending on how things are going I may cut my 2 weeks in house to 1 week in and 2 weeks of home IV's. When it comes to my health I tend to be selfish, because if I don't take care of me I can't take care of others. I will always do whats best for my health and well being, it's not always easy, and has been extremely hard this time.

The plan for my stay right now is to get results from my sputum culture and x-ray and go from there. I am resistant to a lot of anti-biotic and allergic to many others, it leaves very few that my bugs respond to. So I may have to be desensitized to a med I'm allergic to. It's just wait and see right now, in the time being I'm continuing the oral Cipro and starting IV Zosyn. I will update when I can.