1 week down! Approximately 51 to go…

Tonight was my last IV for the first week. Every week I will need to have a new port needle put in. What this means is the current port needle will have to be de-accessed, and then my port re-accessed with a new needle. Luckily I de-access myself, but don’t know how to re-access myself yet. Eventually Amanda will learn to access it so that will eliminate the need for a home health nurse weekly. I will still need one bi-weekly to draw blood labs to check kidney functions etc.

After my IV tonight I de-accessed my port. That will give me almost 24 hours needle free before the home health nurse comes to re-access me. When I am de-accessed I can take a shower without worrying about covering my port and making sure moisture doesn’t get in. I can clean my skin where the tegaderm was and sit in the hot water longer. This is nice because when I have to cover my port to shower it limits what I can do and makes it harder to shower. I feel clean.

After a week of antibiotics I am starting to feel better. I am a little more tired, but at least I feel better. I have not had a lot of bad side effects from the antibiotics, and I keep praying that I wont. After doing my IV every night, I am a little bit nauseated, but not bad at all. I have not had to use my anti-nausea meds, which is good.

Yesterday was the Williamson County Great Strides Walk. My team Bad to the Boone raised around $5000 if not more, and the walk exceeded our goal. I wish my team was bigger, but it gives me a goal to reach next year. With everything going on this year I did not have the time I have in the past to put together a team and manage it. I did exceed my goal for fundraising, so next year I will raise the bar.

Today Amanda and I met Sierra, Tory and Logan at the house and picked up our washer and dryer, so we can finally wash clothes at the apartment. After unloading the washer and dryer we went and picked up our new couch. It was good seeing Sierra, Tory and Logan, and nice of them to help us out.

Our apartment is coming together quite nicely. It’s not the house, but we are making it home. I miss my neighbors and the quiet of Hutto, but I love being in Austin with plenty of places to go and more things to do.  We don’t have to worry about what we are going to eat dinner if we forget to take something out, and on the weekends if we forget to get breakfast stuff, there are plenty of places to eat breakfast food.

Now off to finish treatments and get some sleep. Another week starting tomorrow, hopefully I can get some rest and not wear myself out.

CF Clinic w/ Mom

Today was CF clinic day. My appointment was at 8:30 at dell children’s specialty care center. This was a big appointment, not only was it the follow up to go over my visit with Dr. G, my mom was going. It has been about 6 years since she has been to an appointment with me. I was hoping it would be a reality check for her.  I have had a lot of trouble over the past couple years getting her to understand what I am going through, and what I need to do for my health. With the help of the Dr. and nurse hopefully she will see it from a different view.

I am a very active CFer. I don’t want to be held back just as much as the next person, and I do what I can to avoid it. I have gotten to the point in my health that if I don’t change things, at least a little, my health is going to get worse instead of better. I have worked full time since I graduated high school. I don’t know what I would do if I didn’t work full time, but I am starting to think full time is going to hurt me in the long run. Mentally I can’t stop working all together, but I should start a little at a time for my health.

Over the past year I have started trying to rest more, now its time I start making time to work out or get exercise as well as rest. It would benefit my health greatly if I could do that. Over the next few weeks I should be fully moved in to the apartment, so I can finish getting the house ready to rent it out. Once I get the house rented out, I will have a lot less stress to deal with. Then I can get my workout equipment moved into the apartment, my desk set up so I can work from home, and figure out the best schedule for me.

I started my IV treatment last night, and tonight did my second dose of IV tygacil. So far so good, keep the prayers coming; I know this is going to work. Also while at my dr. appointment I learned that I do not have to avoid the foods that I thought I was going to have to. As long as I am not consuming large amounts of them I will be ok. My weight is up, my pft’s were up, and my trends are in an upward slope. Slight, but still an upward slope.

I am going to take this day by day; I think its best for my anxiety. No point and worrying myself to death, its in God’s hands now. 

1st night

Tonight I started my IV that I will be on for a year. I guess it didn’t really hit me how hard it is going to be to do antibiotics and a IV every day at the same time, cover my port everyday for a shower, access and de-access my port weekly, change my dressing weekly, get blood drawn bi-weekly, make sure I’m not having any symptoms or side effects, and make sure I’m not eating anything that would react with the antibiotics.

After I started the IV tonight I only felt a little nauseated. Once my body gets used to the meds I should be fine. If I do get more nauseated the doctor gave me some medicine to help with it that won’t knock me out at the same time. I pray that this treatment works, and that I don’t have to switch things up. The doc said this was the easiest thing to start out with, so hopefully it works. I can’t imagine doing more antibiotics or more times a day than this.

My home health nurse was really cool. It really makes a difference in your care when you have someone you like. It doesn’t matter how good a nurse is, if you don’t like them, its still not good care. If they don’t have compassion and sympathy then it makes a world of difference.

I will be tough, I will do what I have to do, and I will kick this. No matter how hard it will be, I have the best friends and family to help me get through this. I have the last name that proves to be strong and hardheaded. 

Today was good.

Well today was the last day IV free for a year. Started off going to breakfast with some friends that were in town to the Egg and I in Austin. Love going to breakfast there because they have some good French toast!

After leaving breakfast, Amanda and I went on our go-kart racing date at K1 Speed Austin. I got 2^nd place in my first race, and 1^st place my second race. Amanda was doing what we would call “practice” runs O:) Racing was a lot of fun, but afterwards we were in pain. Shifter carts that go 45mph + small track+ two crazy CFers = two CFers in pain + ibuprofen.

When we were done racing we decided since we were already on Burnet rd. we would go to some of the furniture and consignment stores to look at furniture for the apartment. We found a couch that will match our color scheme and was really comfortable at a decent price.

By this time we were hurting and decided to go home. Right before leaving Riley called me asking if we were on our way to come see him since they were having a belated BBQ for his birthday. It’s hard to turn down your little brother when you hardly see him as it is, and he expects you to come out. So we went to the apartment, picked up Mugen, and off to Florence we went. We shot guns, hung out w/ family, and ate BBQ. Amanda, Mugen, and I were worn out at this point so we came home.

After being out in the country Mugen needed a bath. So I gave him a bath, scrubbed him down good, rinsed him off, and dried him. After picking up huge clumps of hair out of the drain from Mugen shedding, Amanda and I took our showers. Now doing treatments together just enjoying being next to each other. Being in love and happy is the best feeling ever. Its so comforting to know that the person you are in love with will love and support you forever, will take care of you and vice versa.

It was a good day, and tomorrow I start IVs for a year. Hopefully this treatment works and I don’t have to be switched to more than 1 IV and/or more times per day. I know with the support from Amanda, my family and friends I will have no problem kicking this bug. I appreciate everyone that is there for me, it means a lot. I might not be the best to show it, but I do.

Thank you!!

Last saturday before 1 year of treatment...

Today is my last Saturday before I start my yearlong antibiotic treatment. Starting Monday I will take 3 antibiotics daily for at least a year. I have no idea how these drugs are going to affect me, I have no idea how I am going to feel, all I know is I am going to kick this bugs ass!

I started out the day by waking up early to go to work. Yes, I had to work on my last weekend before treatment. The joys of being office manager are great, NOT! I worked from 8:10am-12pm. Not a long day, but still cut in to my sleeping in time with my honey. Weekends are usually spent at least in the morning sleeping in and cuddling with Amanda and sometimes Mugen too. After working all week, I usually need this time to rest so that I will be good to go Monday morning when the week starts over.

After work I stopped by best buy to see if they had any wireless headphones, because as some of you know, nebulizers are loud and make it hard to hear the TV unless you blare it so the whole world can hear it. Best Buy didn’t have any in the price range I wanted, so off I went to Fry’s. If any of you know what Fry’s is, it’s an electronic store that carries everything a guy could possibly want in electronics. I made it out of there in 40 minutes when I went in for one thing. After buying 5 things only one of which I went for, I was headed to pick up my lunch.

One of the antibiotics I am going on prohibits me from eating certain foods, and not just one or two, over a dozen different things I cant eat for the year while I am on the antibiotic. I picked up a sandwich from Jersey Mike’s and got it to go so I could come home to my honey. After eating and cleaning up a little I am back in bed, about to watch some SOA. Quality cuddle time next to Amanda with Mugen at our feet. We have some friends coming in to town in a little bit so we need the rest. Also tomorrow is date day, since it will be last day before antibiotics.

Well enough for now. Off to watch SOA.

Mycobacterium Abscessus...Update

So it’s 4am and my alarm is going off. Time to get up to do treatments and get ready to drive 4 ½ hours to go see Dr. G at UT Health Science Center Tyler (UTHSCT); a specialist in treating strains of mycobacterium. My anxiety level is high, but I'm ready to get the show on the road. I do my treatments, get dressed, grab my NOS energy drink and beef jerky and wait on Amanda to finish getting ready. We pack up and drive 4 ½ hours to Tyler, Texas, only making 2 stops.

We make it to UTHSCT with 30 minutes to spare. I go to get checked in and find out that Dr. G doesn’t want me to do PFT’s, kind of odd, but I’ll do what he wants. Amanda and I wait anxiously in the waiting room to be called back. After waiting about 10 minutes or so it seemed we were called back. They took my weight and vital signs, went over medications, took my temperature and told me Dr. G would be right in. While waiting we hear Dr. G being bothered by a pharmaceutical rep trying to get him to give samples of some medication they were pushing. Dr. G finally comes in to talk to me and see how I was doing. I told him I was doing all right. I have been feeling tired and fatigued more, having night sweats, not feeling great, and worse of all coughing more stuff up. Usual symptoms to having an exacerbation, but I have been on antibiotics and it hadn’t really helped.

The good news is the strain of mycobacterium abscessus that I grew is an “easier” strain to treat. The bad news, which I already knew, was that the treatment is a yearlong course of IV antibiotics. I am in luck…for now. Plan A: 2 oral antibiotics Azithromycin and Zyvox, 1 IV antibiotic Tigecycline. All 3 are once a day. This is good cause its not multiple times a day every day, but the bad part is that it might cause me to feel sick. They are all low doses to see how I do on them before upping the dose because they can make you feel really sick. If “Plan A” doesn’t work or seem to help, there are always “Plan B” and “Plan C” which we did not discuss at this time, but they require more antibiotics multiple times a day. Dr. G wanted to try out the “easiest and most painless” route first and if it helps great, if not then there are alternatives.

The bacteria and treatment is not something to take lightly. Although it is an “easier” strain to treat, doesn’t mean it won’t cause me health issues. I appreciate the support from all my friends and family, it means a lot to me. I am going to look at what I can do to benefit my health, whether that means taking a step back from work some so I can exercise or rest, or ridding some stress in my life. 

Anxious much...

So I have one more day ahead of me until I go to UT Health Science Center Tyler to see the mycobacterium doc. My anxiety is building making things hard. I can’t sleep, I can’t eat, I can’t work, I can’t watch TV, I can’t even be on the computer without something reminding me about it. My anxiety is a tad bit short of a panic attack, but I can’t let myself go that far. I can’t let my anxiety get the best of me. I know that in the long run I have to do what’s best for my health. I know that I have family and friends that will always be there for me that love me, and will do what they can to help.

I am afraid of the possibilities; things I shouldn’t be afraid of. I don’t know where this will take me in life, but I know that God has a plan. Everything happens for a reason, there is a bigger picture. I know that I will fight my hardest, I will do my best, and I will win this fight. I know that I will win because there is no way I can’t win if I do my best.

In two days I will find out how my life will be changing. If I am to do the treatment I was told about before, I will have a year of IV antibiotics to do, possibly more, possibly less. I will find out if that means multiple times a day, multiple times a week, or multiple medications. I can only be prepared for the worst and hope for the best.