Good news and Merry Christmas

I know I haven’t been the best blogger lately, seems like life complicates things and gets in the way. Nonetheless I am back with some good news.

The past few days have been pretty hectic. Between the holidays, birthdays, being sick, stress over my house, and worrying about the New Year coming up, I have not been able to control my anxiety level very well. Maybe writing the blog will help air out some of my stress.

Monday, Amanda and I were both home sick with a head cold, by this time it had started into Amanda’s lungs so of course I was worried about her, and even though I was sick was doing my best to take care of her. I was and have been on antibiotics going on 2 months now so I wasn’t really worried about the head cold going into my lungs, but that wasn’t stopping it from getting worse for her. We were laying in bed talking wondering about what was going to happen with my IV situation.

Let me back up here; since I haven’t told the full story as to why we were worried. I have been using a home health infusion company that I have used in the past, and need to use due to having to do IVs every day. When I was “admitted” to home health they sent out a nurse who from the very beginning, the first day she walked into the apartment, I was actually very comfortable with her. I didn’t even know her last name, which is odd for me, but that’s how comfortable I was with her. She was a great home health nurse, the best I have EVER had, and if you have had home health before you know good nurses are hard to come by.  Well the infusion company had administrative issues, and instead of telling me what was going on they called and lied to my face about what was going on. When I say she was a great home health nurse, I'm talking about all aspects of her care, including communication. That being said, she always kept in contact with me, making sure things were working out okay and I didn’t need anything, so I knew what she was up to and what not. At this point my home health nurse had become a friend, someone who actually cared about her patients enough to make that relationship, in fact we went to the gun range together and shot guns. Well once the company had administrative issues, they weren’t letting her come see me so they kept trying to send someone else, which I have horrible anxiety now, due to not taking anti-anxiety meds, and I didn’t want someone else coming out. When you have a nurse you are comfortable with, you get that way. Especially when the nurse is compliant with sanitation and sterile technique, and is caring towards the patient.

So anyways, I have to get blood draws every other week to make sure the antibiotics are working and make sure kidney levels etc are ok. Well this past Monday was a blood draw day, which means I can’t just be accessed without the company coming out because they still need blood. So I decided it was time for Amanda and I to be brave and access my port ourselves so we didn’t have to rely on a home health nurse anymore. So after 2 sticks Amanda got it on the 3^rd stick, if you have a port and know what its like to have it accessed, you know this is a pain, but I knew she could do it and I was determined not to worry about pain and let her be successful. Happy Day, Amanda graduated to “Nurse”. 

Well not only were we worried about that, we started to think about the New Year. With the New Year, means new deductible. I have an HSA plan with a high deductible. Once my deductible is met, the plan pays 100% the rest of the year, which is good once you meet that deductible. I am on a grant program at the hospital, which has paid the deductible the past few years. The only difference is this year I am on IVs which means I can’t wait a week or two to go to the doctor to meet my deductible and let the grant program pay it. I have to have my IVs January 1, which means I have to pay my deductible before the infusion company gets paid and that is a lot of money out of pocket at once. So of course now I’m sick and freaking out, anxiety shoots through the roof, and I don’t know what to do. I start thinking about all the what if’s, which isn’t the best thing to do until you have all the facts, but I cant help it. I was afraid I was going to have to skip a couple weeks of IVs until I met my deductible so that I could afford it, which would make the last 2 months of IVs pointless if I skipped that much of the antibiotics.

Fast forward to today. This morning I got a call from the infusion company and they are going to send out 2 weeks of antibiotics. 2 weeks puts us into the New Year, so I had to talk to them about what I could do to not have a lapse in my IVs. 1^st break of the day, they will put my account on hold and wait until the end of January to bill my insurance. AWESOME! That means no lapse in IV, and no large deductible to pay up front and have to figure out where to come up with all this money. No more stress about that, but I still have to move my doctor appointment that I have with the specialist in Tyler to later in January so that I go meet my deductible first at cf clinic. I called Tyler moved my appointment, and asked to talk to the nurse to get my sputum culture results. The nurse gets on the phone says that moving the appointment is no problem and pulls up my sputum culture results to tell me. 2^nd break of the day, on my first sputum culture a month after starting IV treatment for abscessus it is NO LONGER GROWING. Also, staph, which I always grow, and have always grown, didn’t even grow on my culture.  This is awesome news, I wont get my hopes up too high, but treatment is working thus far and hopefully will rid of abscessus for good once treatment is done.

Thanks everyone for the support, love and prayers. It’s working. I hope everyone has a Merry Christmas and Happy New Year. Hope everyone is living life like there is no tomorrow (pun intended) (12/21/12 end of Mayan calendar/world if you didn’t know). 

1 month down

A month ago I started my antibiotic treatment for a bacteria I knew nothing about. Mycobacterium Abscessus, which is a non-tuberculosis strain of mycobacterium that comes from contaminated water or soil. I first grew it out in January 2012, since they only grow out bacteria using this specific test one time a year. Who knows when exactly I first actually grew it. I could have gotten it anytime between January 2012 and January 2011 since they do this test when I go in for my annual birth month checkup.

For the past month my routine has been to take my antibiotics at night. I usually do my IV antibiotic at 8pm and take my oral antibiotics at bedtime with the rest of my pills. I have only gotten nauseated a few times over the past month, and the worst was last night. I had to take anti-nausea medication that pretty much knocked me out. I am starting to get worn out. I am not sure if it is due to being on 3 antibiotics or if it is the bacteria growing in my lungs. At the end of the day I am out of energy, at the end of the week I cant get enough rest before starting the week over on Monday. I am not a morning person anymore. It is hard to wake up in the mornings. I get tired midday to where I almost need a nap everyday.

This has been the hardest year yet. I am being tested around every corner. My anxiety and stress level is at an all time high. Part of the reason is that the antibiotics I am on react with anti-anxiety meds, so I am not on them anymore.

The biggest obstacle I have right now is work. I have always worked, since high school I have had a job. I don’t like the thought of cutting my hours, I don’t like the thought of cutting my pay, but I definitely don’t like the thought of my health going down because I don’t do these things. I have to work to get health insurance, and I have to work to pay my bills and remain independent. I don’t like the thought of being dependent on anyone, its just not who I am. I know it might happen some day due to my CF, but I want to remain independent as long as possible. It might seem crazy but just thinking about it makes me depressed. It’s a mental thing I can’t get past. I am trying to work through it on my own, but need support from friends and family. The hard part is most people don’t know what I'm going through and it’s hard for people to put themselves in my shoes. When you can’t do that, it’s hard to give advice.

Mom and Roger brought over the elliptical machine so I can start using it and working out. I know that working out will help eliminate some of that stress, and eventually I hope it improves my health as well.

On a side note, Amanda and I are still working out our details on our joint birthday party we are going to throw. Not exactly sure what we are going to do yet, but some ideas are karaoke, bowling, dinner, concert, etc. Will have to figure it out soon so we can send out invitations. 

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. 

Speech from a CF Adult

So tonight i had to give a speech at the CF Benefit BBQ, and decided it was time to talk about being an adult with cf. A lot of people hear the stories of kids with cf or parents of kids with cf, but you dont hear any stories of what its like to be an adult with cf. There is a lot more responsibility involved, and a lot more anxiety to deal with. 

I decided i would post my speech for everyone to read, because not everyone could make it out to the BBQ. Also if you have a straw around the house, i would like you to try what i asked everyone at the bbq to try. Take a straw and for 60 seconds breathe through just the straw, after 60 seconds you can start breathing normal again. That is a glimpse of what people with cf go through every day. 

"After thinking about what I wanted to talk about today, I decided I would talk about what its like to be an adult with CF. You always hear about how being a kid with CF its hard to live a normal life because of all the medicine we take and all the treatments we have to do on a daily basis, but what you don’t hear about is when that kid with CF grows up to be an adult.  

I would like to have a moment of silence to remember all those that have passed away over the past year. Jason Brady, Amberlyn Fett, Amy Hearn, Anthony Holloway, Brian Giddens and Chris Odom.

Being an adult with CF you have a lot more responsibilities. No more parents or caretakers to get your meds ready every day.  If you run out of meds because you forgot to refill them, it’s your fault. And ultimately it’s your responsibility to take care of yourself. If you don’t do your treatments or take your meds, and get sick, it’s on you.

Some of us are healthy enough to go off to college and live a semi-normal life, some of us stay home and go to college while living with parents in case we get sick, and some of us aren’t healthy enough to make it that far. Some of us never get the chance to enter the “real” world, and some of us work full-time jobs. On top of CF we still have the same worries as anyone else, how will we get income, how will we get health insurance without a full-time job, do we qualify for disability, or when will we no longer be able to work and have to go on disability. No matter what we are capable of doing, we all have our aspirations and dreams. We do what we can until our health takes a hit and we have to step back and look at the big picture. What is more important? We all want to live, but it’s our quality of life that we have to think about. We can keep doing what we have always done, and run ourselves into the ground, or we can take a step back and take a stand for our health, do what we can to stay healthy and live a better life. It’s not always what we want to do, but its something we have to do. We have family and friends to live for. We have people we love, and when you have people you love, you give it your all to stay healthy to be there for them. If we give up, or don’t take care of ourselves, not only are we letting ourselves down, we are letting the people we love down.

Every person with CF is different, you cannot compare us to each other, and it is a very individualized disease. What makes one of us sick might not make the other sick. Something that helps one of us might not help the other.  There are advances in CF that help a certain % of the population, but the down side to that is there is a % that it doesn’t help.

In conclusion, we are here today to raise money to help make CF Stand for “Cure Found.” This money will go towards research to improve the lives of people with CF and hopefully one day it will be a distant memory."

I hope this sparks some thought in everyones mind about what adults living with cf have to deal with.  

Cant wait to be in paradise with my honey!

2 days away until I'm in paradise with my honey! I can’t wait! I’m so stoked to be going to Hawaii with the one I love! It is a much-needed vacation that we both need. Time has flown by so fast and we have been so busy lately that we haven't planned our trip out yet. We have ideas on what we want to do and where we want to go, but not sure how it will all pan out.

There are so many things to do, where to start? Snorkeling? Surfing? Swimming? Shopping? Sailing? Lying on the beach? Snuba at Molokini Crater? Zip lining through the rainforests? Kayaking? Biking? Luaus?

Out of all the things we can do, I’m sure we will make the best of it. Once and a lifetime trip and we are going all out. Maybe we will only do a couple of those things, or maybe we will do them all. Either way the thing that matters the most is we are together in paradise! Will take lots of pictures and make a lot of memories.

Amanda Marie Trippet, I love you and am so lucky to have you in my life. 

Burning bridges...

I realized today that no matter how good of friends you are with someone, no matter how much you care about them, or no matter what that friendship means to you it might not always be there. I also realized how two-faced someone might be.

Some of you might know that in the past year I lost my best friend. I used to think he was a brother from another mother…and father. I loved him as if he was my brother all along, even though we had only known each other since junior year of high school. We had been through some ups and downs, but it always seemed to work it out and together we were again like best friends should. I went to him for everything, even if I had other people to go to, I still always went to him to talk to, to look for advice, or to vent to.

After a while he started noticing that I was unhappy, and that my personality had changed. I was having issues in my marriage and he pointed it out to me. He said I could stay with him if I needed to, or while he was out of town I could use his place to crash just to get out of the house. He told me that he didn’t liked seeing me unhappy and that I needed to do something about it. The problem was I had tried already, and I started to realize something. Love isn’t always what it seems. I wasn’t in love with the person I once was. I got married too young, yes, lesson learned, and it was a tough lesson at that. I walked away from my marriage a wiser person, knowing that I did the right thing because if you aren’t in love, why waste yours or the other persons time being married, life is short. It sucks knowing you hurt someone, but the truth is we both learned from it.

One day I was at his house and he had 2 cars in his driveway that he was fixing up to sell. I mentioned to him that my stepbrother needed a cheap car and asked how much he was selling the cars for. The cheapest car he said he would sell to my stepbrother for $1700. I just happened to be on my way to my dad’s house, so I told him I would let them know. I let my stepmom know about the car and gave them his number so they could call him and coordinate things if they were interested.  I know it’s bad to involve friends and family in buying and selling things to each other, but I trusted him.

Time goes by and about a month and a half later I got a call from my dad asking if I talked to my friend. I said yes, cause I was over there almost every day to hang out unless he was working on a car. My dad told me that they could not get in contact with him and they needed to so they could get the car they bought from him registered in their name. They didn’t tell me they had been dealing with this for the last month because they knew he was my best friend and didn’t want to put me in the middle of it, but that didn’t work so they had to. So I called my friend and told him that I couldn’t believe he would do that to my family, and that he just needed to fix it. He was my best friend and all I wanted was him to fix it so they didn’t have to pay more money to get the “cheap” car on the road.  Of course my friend was appalled by me telling him this and was offended that I didn’t fully believe him. That my stepbrother knew the whole time the issue with the title and why should he have to do anything else because he sold the car as-is. I understood he sold the car as-is, but I don’t think he thought about that when he sold it to his best friends family. It didn’t matter, he needed to fix the issue so I was not put in the middle anymore, and all I did was try and help everyone out. At this point my best friend would no longer talk to me. After I was separated from my wife I stopped by my friends house to talk to him, if he wasn’t going to answer my phone calls or texts he would have to talk to me in person. He came outside explained his side of the story, told me why he was upset, and let me explain what I had to deal with. About this time I found out that he had my wife who I was currently separated from getting a divorce over for dinner. I asked him if this was true and he said it was, but you know my business was mine and hers was hers and he wasn’t going to tell either of us about the other. About this time he said he had to go take a shower and went back inside.  I haven’t spoken with him since.

My friend and his fiancé got married this weekend. I was supposed to be the best man, but because of the car issue, and him and his fiancé hanging out with my ex-wife I was not invited. A few days ago I sent him a text message wishing him and his fiancé the best and apologizing for what had happened to our friendship. I know its not all my fault, but I wanted to change things so we could be friends again. I did not receive a text back, no response, or anything of the sort. No matter what happened I didn’t want to throw away a friendship. I have thought about everything that has happened and I realized its stupid to lose a friend over that. I realized that friends are important to have in your life and not to let the little things ruin that. I forgave him and thought he would do the same, but I guess I was wrong. 

Tyler, Texas...not where you would expect a world renowned specialist

So a little over 3 weeks ago I found out I grew a new bacteria in my lungs. What a shocker? A CFer with a new bacteria, not always a big deal, but this time it was a little different. It is a form of Mycobacterium, and this specific mycobacterium is tricky. It is called Mycobacterium Abscessus. I was extremely upset when i found out i grew this bacteria. I have horrible anxiety and as soon as i found out my mind started running, thinking about things that could happen, things that might happen, things that i didn't even know about, things i was making up in my mind, and why this happened to me.

Immediately i emailed my CF nurse to have the doctor call me. I wanted to know answers. I wanted to know why they did not tell me about this when i first grew it, why they neglected to tell me about it until 7 months later, what was the treatment, if i should be treated asap to get rid of it, or if i should worry about it.

Of course the doctor didn't call me until Friday afternoon at 4:45, i was afraid he wasn't going to call and i was going to have to deal with all my anxiety all weekend until Monday when i could start bugging them again to get answers. He told me he was not a specialist in this specific bacteria and that i would need to travel to Tyler to go see the specialist. To me this was not a good sign that I was having to drive 4 hours to go see someone cause my doctor couldn't do anything. He told me the only treatment for this specific bacteria was a year long treatment of IV antibiotics, which terrified me. He told me that "protocol" was that they don't treat it until you grow it 3 times or start having symptoms and a drop in pft's. This amazed me, why would you wait, why wouldn't you eradicate it before it caused health problems. He kept telling me he wanted me to go see the specialist in Tyler, that he could explain everything. Well this just made my anxiety 10 times worse. Since I hadn't been feeling great anyways I talked to him about admitting me for a "tune-up". He thought that was a good idea. On the 16th of July I went in for my admission. I spent 5 days in the hospital and got out on Friday to go home on IVs. I got a call from the University of Texas Health Science Center Tyler to set up my appointment with Dr. David Griffith. The soonest they could get me in was August 3rd, so i took it. Being two weeks out I had to deal with my anxiety until my appointment, which was not easy.

Thursday August 2nd Amanda and I got off work a little early and drove to Tyler. We stayed with a family friend for the night, so we didn't have to pay for a hotel. We got to Tyler at about 8:30pm and decided we better eat something before going to where we were staying. We stopped at Shogun Hibachi Japanese Restaurant for dinner.

Friday Morning we got up, did our treatments, and packed up our stuff. Christie who put us up for the night came home from her workout with some protein smoothies for Amanda and I. We packed up the fit, said our goodbyes and off we were to UTHSCT.

We arrive at UTHSCT and get inside at 8:55am and go into the Lung and Heart Center to check in. About 15 minutes later I went up to the counter and asked the lady if i was in the right places because my appointment was at 9. She told me to go to Radiology and get registered, get my chest x-ray, do spirometry, and when i was done to come back to see the doctor. So off i went. My anxiety was extremely high, i was easily agitated and was not happy with the customer service. At 9:30 I went up and asked what was going on, my appointment was at 9 for the x-ray, 9:15 for the spirometry and my doctor appointment was at 10, and now it was 9:30 and nothing had happened yet. The lady got me registered and said that they didn't order a chest x-ray, i told her they were supposed to and they told me to be there at 9 to do it. After registering she told me to go do my spirometry and then come back. The longer everything took, the more my anxiety got to me. I did my pft's and x-ray and back to the lung and heart center to see the doctor.

One of the first things the doctor told me was that there is no way to avoid Mycobacterium, its everywhere, mostly contaminated water and soil, not passed through people. Then he told me there are sub-species of Abscessus and that with the results he had, it looked like i had an easier sub-species to treat, but at this point he really didn't have enough information to be 100% sure. He told me that right now its a waiting game, and that I needed to just live life and not worry about it until he gets some more information on the bacteria growing. One of the reasons i worry so much is because this could be a life changing decision when it comes to treatment and me working. If I go on a years worth of antibiotics to get rid of this thing, am i going to be able to work. If i cant work then i cant pay for my house, car, bills etc. If i cant work I cant get insurance through work, so what plans am i going to put in place in case of that happening. I am terrified that i will not be able to afford to live. One of the questions Amanda had for him was if this bacteria was one that prevented people from being eligible for a lung transplant. He explained that yes they will not do a lung transplant unless this bacteria is eradicated.

My anxiety was relieved to a point, but not completely. I pray that this bacteria will go away on its own and i wont need treatment. I am scared for the treatment because i don't know how it will affect me. I don't know if i will be able to work while doing a year long treatment of IV antibiotics. I don't know what i would do with my house if i was on a years worth of antibiotics if i cant work. I don't want to not be able to work. I don't know how i will get health insurance if i don't work, or if i can get insurance how i will pay copays. All i can do is put it in God's hands and trust everything will work out the way he plans it.

I scheduled an appointment for October 5th, so an update on this topic will be around then. I hate waiting, I am a planner and don't like that i cant plan anything until i get more information, but don't really have a choice on this one.

Amanda has been my greatest support through all of this. I have never felt so safe. She comforts me that everything will work out, and we will do what we need to take care of this and us. I love her so much, she means the world to me. It is great having someone that knows exactly how i feel with everything going on.

Paco & Ting Ting a.k.a. Monster & Princess

Today was a long day...

Started off with waking up late and having to hurry to get to work. On the way to work I watched 2 pit bulls cross the road to the median, run a ways down the median and cross back to the other side. Not really thinking about it I continued the couple hundred yards on to work. I pulled in my parking space and started to think about it, "what if that was mugen?", "What would I want someone to do if my dog was loose crossing dangerous roads and running free?". So started my car back up and drove back to see where they went. I got back to the shopping center near my work and there they were running around it. I stopped and whistled to see if they would respond. They immediately turned around and ran  up to my car. They were wagging their tails so i wasnt afraid, and as soon as i got out of the car they jumped on me and started licking me like they were excited to see me. I got them to get into my car, which i had set up for Mugen to ride with me so it was dog friendly and ready to go. I took them back to my work and they did not want to get out of the car, they just wanted to sit there inside it in the shade. I finally got them out, but since i did not have leashes for them had to hold them by their collars. I took them to the window outside my moms office and told her to come help me, and bring a leash if she had one. She didnt so she came out with an extension cord to use as one. While she was helping me, someone let Killer out of the office and he ran over to where we were. Immediately he barked at the dogs to protect my mom and that was a mistake, the pit bulls started barking, growing and pulling to get to killer. I yelled at my mom to put Killer back in the office, and we took the dogs into the laundry room and shut the door. 

After getting them situated in the laundry room, i went to make up posters. I printed out some posters and left to hang them up in the area. I stopped by some apartments, dunkin donuts, flex fit gym, and subway to let them know in case the owner came looking for them. As soon as i got back to the office, i posted on craigslist and facebook about the dogs in case someone was looking online for them. I got some work done, and off to lunch i went. I came home for lunch and when i left to go back to work i took 2 leashes and a harness from the house so that i could control the dogs and take them out to go to the bathroom when i got back to work. When i got back to work i put the harness on "Monster" and put the leashes on him and "Princess". I took them outside to use the bathroom, and decided to see if they would lead me "home" since a lot of dogs know where they live even if they wander off. After walking about half a mile they were tired and stopped under a tree. At this point i figured they didnt know where they were going and took them back to work. Still no call and i was starting to get anxious. I was not sure what i was going to do with the dogs when i got off work. I felt bad taking them home cause they would have to stay outside, but i didnt want them to go to the pound and worry about them being given away or euthanized. I figured I had one option left, take them to the vet and see if they were microchipped, and if they werent i could take them home and see if someone else could come get them so i wasnt forced to call the pound. Luckily I got to the vet and they both were microchipped. The vet called the owner to come pick them up. I waited until the owner got there to make sure they went home safely. When he got there he said their names were Paco and Ting Ting. Not what i expected, i liked the names i gave them better, hah. 

When i got home i was interrogated by Mugen, he knew i had been around other dogs and was jealous. He sniffed me all over. At this point i smelled disgusting between me sweating and the dogs slobbering on me, so i took a shower. After the shower I started washing set ups while Amanda cooked dinner. She was making cubed steak parmesan. She is Amazing, and its awesome how she cooks for 2 CFers. Not only does she make the best meals, she gives me the love and support i need. I am so lucky i found her.

Now sitting in bed exhausted doing treatments. Anxious about Friday because I will be in Tyler at the University of Texas Health Science Center talking to Dr. Griffith about Mycobacterium Abscessus which i have grown twice now. I am not sure what will happen with this "bug" and I am worried, but God has a plan for me. I know enough about Abscessus that i know its not an easy treatment, and its long term. It could possibly be a "life-changing" bacteria. Not sure where it will lead me in life, but I will figure it out. 

Dehydrated...

Today has been a really longgg day. Starting with last night, i could not go to sleep. I finally passed out some time after 12, between IVs I could not go back to sleep, my ears were ringing louder than ever, and my mind was running. I have been having night sweats, headaches, and restless sleep since being home, but last night was the worst. At 4:30 Mugen woke me up to let him outside to go to the bathroom, which he doesn't normally do so my anxiety was bad and i was worried about him. 9am I felt like crap, was still having trouble sleeping, but needed to start my treatments, so i got up. Between doing treatments and IVs I tried to nap as much as possible. at 11:15 the home health nurse came to draw blood to check kidney functions. When she left, back to bed i went. Amanda called me worried at 12:20 because she hadn't heard from me all day and she knew i didn't feel good. I told her i had just been sleeping so she let me go back to sleep and asked if i would call her when i woke up. 3:10 i finally woke up, was just laying there, when Amanda texted me to see how i was feeling. Amazing how that worked, perfect timing. Still not feeling well I was starting to realize i was dehydrated. I went to the garage to realize that i only had 2 gatorades left. I drank a Gatorade and ate lunch, then started on the second Gatorade. Since i needed fluids, as soon as i finished the Gatorade i ran up to the store to get some more. Now doing treatments laying around hoping i feel better in the morning. Hopefully i get enough fluids in me that i don't feel so dehydrated.

Smooth Criminal

I love this picture, found it on Facebook and figured i'd repost it. I think it's funny how all these people think that guns should be outlawed so that no one else will get shot. Do they really think that would solve the problem? Are they really that oblivious? Guns themselves don't kill people. If a gun grew legs got up and shot someone i'd totally agree, outlaw them, but that isn't going to happen.

Enough ranting about this topic, there are plenty of things that are illegal out there that criminals still do and get away with. Outlawing guns will create more problems than fixing.

Redbox Relax Day

Well it’s Sunday evening. The weekend home went by fast. Saturday was spent doing stuff around the house and babysitting Jude Bug. This morning woke up to do IVs and treatments at 9. Amanda went and picked us up some breakfast tacos and redbox movies so we could have a relaxing day. Then she filled the crockpot with roast, potatoes, and carrots to cook for the day. We watched 21 Jump Street first, it was pretty funny. Then Amanda’s dad aka Buddly came over with Taj to bring me the cheese curdz he picked up in Wisconsin and kept cold all the way back to Texas for me. We sat visited with them for a while, then they left to go eat lunch. We picked a couple snacks out to come start our second movie Safe House with Denzel Washington. 5 o’clock came around and it was time to start my next round of IVs. After I hooked up, back in bed I went. After finishing the movie Amanda went to check in the kitchen to check on the pot roast, ITS DONE! She took the meat, potatoes, and carrots out to make gravy out of the juices, opened the fridge to her surprise of no milk! Luckily our neighbor Nichole was home and let us have some so we could finish making our dinner. Now I’m laying in bed waiting for dinner to be ready. Even though it was a day of rest, I am still pretty tired. My eyes are heavy and I have a slight headache. Hopefully I will feel better in the morning.

Testing Waters

Well, I've decided to start a blog, not sure where it will go, but here goes nothing.

I am not sure what to blog about, or where to start, so I will start with an overview of the day and go from there.

I woke up at 6:25am to start my treatments and get ready for the day. I had to be at work early to open for a change. The mold allergies were bad due to the storm from yesterday, and after looking at the sky it did not look to be much better today.

The allergies were bad so starting off the day wasn't easy. My nose was stuffed up, I had sinus pressure, and my asthma kicked in. When I got to work, I immediately started sneezing, oh this can't be good. Between sneezing and being congested I somehow managed to do alright running the front desk.

When lunch rolled around I came home to eat and do a treatment. My lungs were tight, it was hard to breathe. I luckily had an appetite and was able to eat a sandwich and some chips. Did my albuterol treatment and back to work I went.

The afternoon went by fast, so it wasn't too bad. Around the time to leave it started raining. Luckily by the time I walked out the door it stopped, no getting soaked for me.

To sum things up, it was an alright day, even though the stress is building since I am going in for a tune-up next week.