Most Days

Most day's I'm ok, I'm strong and independent and for moments at a time even forget I have CF. Today is not one of those days, nor have I had one of those in the past week. I feel sad, lost, home sick, lonely and mad, because I do have CF. I hate days like today. This hospital stay has been one of the hardest, I missed things that were important to me, more then any other stay. Colton's spring break, my best friend having her first baby, and an Easter Egg hunt with Colton. And I think what has made it even harder is I was just here in December, 4 months ago, I have never been back in the hospital in just 4 months. It makes me feel like some sort of failure. If I had just not missed that treatment, or just added one more to my day, it's only 30 minutes or if I would just start exercising like I say every time I'm going to do. I know it's just the way CF works that I probably could have done everything right and I would still be here, but today I don't feel that way. Today I feel sorry for myself, a feeling I hate. And I feel bad because when I talked to my Mom on the phone and told her how I was feeling, trying to make myself feel better, I made her sad too. I'm sorry Mom, I love you, don't feel bad or sad. I'll be better tomorrow I'm sure.

Miscommunication can be dangerous

I have restless leg syndrome, I've been taking meds for it for probably 4 or 5 years. I started taking requip for it and it quit working recently and I switched to mirapex. Well when I came in the hospital they still had requip in the computer on my list of meds. I told them I had recently switched but was unsure of the dose, so I called Brad and I thought he told me 2.5mg. I told them and just to be sure the pharmacist on the floor came and asked me for my local pharmacy's number so she could double check the prescription dose. So when my nurse came in last night with my meds she had the Mirapex and said I took 2.5, but because it didn't come in that dose in 1 pill, I had to take 10. I thought this was strange but because they looked different then the ones I have at home, and I was sure the pharmacist called to double check, I took them.



I woke up around 3am really hot, nauseous, and had to pee. I got up unplugged my IV poll and stood up to go to the bathroom, I immediately felt lite headed and dizzy, so I sat on the couch that's next to my bed. The next thing I remember I was lying on the floor, and my knee hurt. I had passed out and fell on the floor hitting my knee somehow. As soon as I woke up, I started throwing up, luckily there was a trash can right there and I made it in there. I managed to find my nurse button and called the nurse, she asked me questions to make sure I didn't hit my head, and I thankfully didn't. She helped me go pee and I got back in bed, I was still really dizzy, light headed, and nauseous. They took my vitals and hooked up a blood pressure cuff for the rest of the night to monitor it.



So after talking to Brad this morning I apparently heard him wrong, and it was suppose to be 0.25mg, I took 10 times the amount I needed! But how did they not catch it when they called the pharmacy? Well apparently they did, and the doctor wrote it wrong on the notes in my chart, so the nurse read that dose as well. I normally know my meds really well and the doses but I had just started this one and wasn't sure. It was from a huge mis-communication.



Today I feel like I got wasted last night! I feel sick to my stomach, can't eat much, and want to sleep all day. They said there wouldn't be any adverse effects once it was out of my system, because that dose is giving to some people, I was just not tapered up to that much, like someone who would need that much. Hopefully tomorrow I will be back to normal.

CF Defeats me........not quite!

I seem to only blog when stuff happens with my health. I don't know why this is other than when I'm in the hospital I have time on my hands. I use to keep a journal on a pretty regular basis, not so much anymore. So my blog is kinda like my journal now. And just like my journal I tend to write more about my health.

I went in to clinic last Wednesday, had PFT's and seen the doctor, my PFT's were 13% decreased from the beginning of February, from 47% to 34%. So the doctor says I need to go in the hospital. I told him I would like to wait until after the weekend, because my best friend Chasta's baby shower was on Sunday. So he agreed and put me on an oral anti-biotic, until I could get in Monday.

Sunday despite nasty Michigan weather, Chasta's shower was a success. Chasta had been "leaking" what she thought was tinkling of pee. But because she wasn't sure it was pee and could have been amniotic fluid, we told her she should get it checked just in case. So she had an appointment at 1 and I was waiting to hear if I had a hospital bed and if my best friend was going to have her baby, 4 weeks early.

Chasta called and said that her water had broke and she was going to have her baby girl. I was frantic and desperate to find a way to stay home one more day, just one more day was all I wanted. I talked to the nurse at my clinic and she said that, the oral med I was on from Wednesday until then my bugs were not even sensitive to and it was important that I get in and get the IV's my body needed before more damage was done. I was devastated to say the least.

Let me clarify the meaning of mine and Chasta's friendship. It's more then that, we are more like sisters. We spend probably at least 2 days a week together, we shop, we bowl on a league together, we see movies, go to dinner, and our husbands are best friends/brothers too. She supports me in so many ways! We complain about our husbands to each other. When I found out I had to come in on Wednesday I wanted to cry, and she found the right thing to say to make me feel better, I would say I'm the emotional one and she's the logical one, I'm the assertive one and she's passive. We complement each other in so many ways.

So have been anxiously waiting for her and Ben to have kids, and when she got pregnant I couldn't have been more excited! When she found out she was having a girl I was so happy for her but jealous too because I always wanted a daughter, but my joy definitely out weighed my jealousy. We have been shopping and preparing for her shower together, eagerly waiting for her arrival. Never guessing this would happen.

I cried the whole day almost. Awaited updates as I was settling in my own hospital room. I was inconsolable, I was worried about Chasta because being the planner and control freak she is, I knew she was completely freaking out and worried about having her early. I got a text at around 5:30 Tuesday morning, Izabella June Langworthy had arrived at 4:14, 6lbs 2oz, and 19 1/2 inches long. She was completely healthy and Chasta was doing great as well. I was so happy for her and Ben. And then I cried the rest of the morning because I was not going to be able to see her or hold her for at least 2 weeks. But we have skype and so I got to see her via skype around 6:30 that morning. She's absolutely perfect as you can see in the picture!

I am most generally a very happy positive person and don't let much get me down. But this has been really hard for me. I despise CF at times like this. Not that I particular like it at anytime, but most the time I can deal with what it throws my way. This time I feel like it defeated me.....for a few days anyways. I will fight like always, and getting better and healthy to get home to see Colton and my Izzy girl will be my drive.

My Year in Review or I guess you could say the rearveiw :)

So I'm sure like everyone else my 2010 had it's up's and down's. I don't remember anything to spectacular or eventful in Jan 2010. But February came in with a bang, Colton had his appendix removed on February 1st and 2 weeks later got pneumonia as a complication from the surgery, that was one of the hardest things to go through as a mother, to watch my baby in pain and want to take it away or trade him places, I was a wreck for weeks, this is also when I started my blog. In March Colton celebrated his 6th birthday, he got a quad from us and had a bowling party with family. April brought on sickness for me, just the regular run of the mill CF stuff, I was admitted for 2 weeks and had home IV's for another week. All the while working on Great Strides CF walk stuff. I coordinate the Great Strides walk in my home town every year with help from the CF foundation. We had our walk on May 16th, 2010 and it was a huge success raising near $10,000.00 (this is a huge amount for my small rural town). After the unwind of the busy work with the walk and Colton finishing the school year Brad took a vacation and we headed to one of my favorite places the day after school was out June 7th! We loaded the motor home and headed to Silver Lake Sand Dunes! I grew up riding dune buggy's on these dune's and it has always been my favorite spot in Michigan. It was Colton's first time going and as I suspected he loved it and demanded to go back! So as per his request as one of the things he wanted to do on his summer break that he had never done, stay in a hotel. So we asked our closest friends to go and we packed up and headed back to Silver Lake in July. Here's a post about that visit . As our July ended and August began we kinda just chilled at home and enjoyed the beautiful summer we had, swimming almost everyday! I also take Colton to Michigan's Adventure every year, it's an amusement park about 2 hours from our home. We planned a last minute trip with my cousin and her friend, we had a great day. Unfortunately my Dog got sick the day before, we still went but she spent the majority of the day in the Vets office being tested. You can read about her in these 1, 2, 3, 4, 5 posts. September 1st came to be one of the saddest day's of my life. Colton also started the 1st grade Sept. 7th, which he enjoys much better then Kindergarten. But over all September was a bad month we lost a good car, our Dog, and our other dog Diesel tore his knee. October came I celebrated my 28th birthday on Halloween! I love my birthday's, I mean I know most people do but I always feel so blessed to have grew another year older, always saying I made it another one! With November came Diesel's knee surgery and Hunting, you can read all the things I was Thankful for here. I was especially thankful on the 24th when I went to my first concert ever! I got to see Shinedown one of my favorite bands ever! the majority of October and November I felt crappy, knowing I needed to get in for a "clean out". So on December 7th I went into the hospital for 10 days and did home IV's for 11 more days at home. Came home just in time for all the family Christmas' and wonderful festivities. We had a great Christmas actually having our last one last night, with my brothers wonderful girlfriend! Also happened in 2010, we had a wedding in May, our really close friends got married in June, and 2 friends from High school got married in July! My brother got divorced which was a blessing in disguise! My sister and Brother in law moved back to Michigan from Mississippi, one of our good friends had a baby, and our best friends are expecting their first in April. All in all it was a great year with hills and valleys. "There's a touch of grey For every shade of blue That's the way that I see Life If there was nothing wrong Then there'd be nothing right" Shinedown, The Sound of Madness, What a Shame. So I am ringing in the new year with Brad and Colton we went to the movies earlier had spaghetti for supper, now they are watching another movie and I'm about to join them. Happy New Year everyone! I hope 2011 brings great things for all.

Thankful Thursday

So I decided to jump on the blog band wagon from over at Run Sick Boy Run and post some things I'm thankful for this week.

First off I'm Thankful that I'm going home tomorrow after a 10 day hospital stay! I am thankful for the advances in medicine that I can continue the rest of my care in the comfort of my home with my husband and son by my side. Brings me to two more things Im thankful for Brad! He is an amazing husband, supportive, giving, and caring among a lot of other great things. I truly found an angel in him he really takes great care of me and encourages me to take great care of myself. And then there's Colton I am beyond Thankful for him! He gives me so much love and care always willing to help Mom whether it be making me laugh or getting nebs for me, he also knows what aerosal meds I take and will get them for me sometimes. He is another angel from God for me. He gives me the drive to fight.I am Thankful for a long time friend that visited me today, that put a smile on my face and my heart. I'm also thankful for the comforts of home, like my favorite pizza place that I intend on having for supper tomorrow. My dogs that I miss very much. And not to be to deep but I am truly thankful for being able to live my life with a purpose.

I am happy to slow down and be thankful in my everyday life, because you just never know when those things your thankful for will be gone.

Update on Hospital stay

Figured I would do an update as promised. So the plan was to discuss doing desensitization with the doctors, well I seen an on call doctor all weekend that I wasn't comfortable with, and maybe that's because he comes in at 6AM!!! If you know me, you know that I am not a morning person at all! I never have been, so I don't really wake up if doctor's come in that early. Doctors that see me on a regular basis know this and they will come by a little later when they know I will be up, unless they absolutely can't then I understand they see me earlier. So anyways, I decided to wait until today to discuss it. But in the mean time I was still on Tobramycin and Zosyn and they added colitine aerosol. Well because of it being "intermediate" to my bugs they decided running it 24 hours instead of a one hour bag every 6 hours would be more effective. I have no problem with this but here was the problem, when they put my PICC in they only put a single lumen, well Tobramycin and Zosyn are not compatible, so this meant I needed a double ended hookup or lumen. Basically so they could run Tobra every 12 hours without having to stop the Zosyn, so I can get 2 meds at once. Well every other time I have had a PICC I have gotten a double lumen, not this time! Never needed a double before, now that I do I don't have one. So Saturday morning they took me back down to have it swapped out with a double, luckily this is quite simple, it took the doctor like 5 minutes and with a little lidocaine I didn't feel a thing. But here's the kicker I was down there for 2 hours for a five minute thing, that was irritating. So that was my drama for the weekend! LOL But after that it was a great weekend, Mom and Dad brought Colton down to visit and brought me TONS of candy and goodies! And a huge canister full of candy for my wonderful nurses! Was really great to see Colton, and he told the nurse the sweetest thing, she asked what was on top of his Christmas list and he said for me to feel better and come home <3 My heart melted! I love that boy! So for whatever reason, maybe all the excitement Saturday, I was exhausted Sunday and napped a lot. So finally to today, bless the doctor he didn't come in until about 5pm! I discussed my thought process on the desensitization and wanted to get the best treatment out of my stay and fear of losing lung function. He said he would discuss it with the other CF doctors and see what they say, but he thinks I will get the results I'm looking for from the treatment I'm on. So I guess I'll find out tomorrow what they think all together. My plan is to get out Friday, with home IVs for another week or so. I guess that's all for now :) As if that's not enough! LOL

Hospital Stay....again :(

Well I'm back at good old "Club Med" aka Spectrum Medical Center in Grand Rapids MI. It's kinda just the usual stuff, but there's been a few complications. Let me start from the beginning. I had clinic back in September, my lung function was decreased slightly but not enough to be hospitalized. I had been having a lot of lung pain so the doctor put me on 600mg Ibuprofen every 8 hours. That really took care of the pain, but I started developing fevers in the evenings. I called the docs office and they put me on a 2 week round of Cipro. I finished that, felt better, and fevers subsided....for a short time. The fevers came back as well as fatigue, loss of appetite, and shortness of breath. Called the doctors again and they said they thought I was having mild to moderate symptoms and ordered a different oral anti-biotic for 2 weeks, Levaquin. I finished that round and felt somewhat better again and fevers went away again. But once again they came back a couple weeks later. By this time I was sick of of feeling sick! I called and told the nurse that I really needed to be admitted that my symptoms had came back again, she said she would talk to the doctor and call me back, of course the doctor said direct admit. So that was Tuesday, after 4 days I am feeling slightly better but some small complications have came up. They started me on my usual regimen of IV anti-biotics Tobramycin and Zosyn. Now 4 days have later my cultures came back and my strains of pseudomonas are "intermediate" to the meds they have me on. This means they are not the most effective to treat my bugs. The drug that is most effective I am allergic to. So today the doctor want to tried to give this drug to me with benedryl to try and stop the reaction, which is full body hives. Well as I suspected it didn't work, we stopped it and the doctor decided to go back to the original plan, to treat with the other 2 drugs even though they are not the best option. Here's my dilemma, I want to use the best drug I can to kick this bug! And there is a process called desensitization, where they give me small amounts of the drug slowly building the amount to full strength so my body doesn't react to the drug. I had it done before a couple years ago with a different drug and it worked. I am going to talk to the doctor tomorrow about this option. I just feel like I am already here and although yes I am starting feel better with the normal regime, I feel like if I don't get the best drug I will be back sooner then normal and risk losing more lung function that I can not afford to lose. So we will see what tomorrow brings and hopefully I can do whats best for my lungs.