The Joys of having CF

The Joys of having CF

Wednesday, November 30, 2016

Almost the End

It is almost the end of 2016. To say I'm not a little happy would be a lie. It's been a year of change...
since I posted last we had more sad news. My moms mom(my grandma) passed away. Yea, two grandparents, one month.
It's been an interesting few weeks but we're making it. Things will get better.  Thanksgiving was a little hard, not having my grandpa there. Who new last year would be his last? But everything happens for a reason. I know I have a great guardian angel watching over me everyday.

But on the 12th I turned 22. I get excited for birthdays. I'm so thankful I get to keep proving statistics wrong. I know I've said it before but I was told I'd never graduate high I celebrate each big life event.

Now tomorrow's December. One of my favorite months. Christmas. It's my favorite time of the year. It'll be different not having grandpa home for Christmas...but I know he'll be watching over us.
But, The joy you see in people, the happiness, just the spirit of Christmas, and spending time with family and remembering the true meaning of Christmas.
It doesn't get any better. I'm so excited for this month.

Lastly health wise I go to the doctor in a couple weeks. Fingers crossed things look good. I've still been feeling pretty good. So that's always good.

With that, happy start to the holiday season.

~God Bless

Tuesday, October 18, 2016

Update & Tribute

I haven't posted for a while, and every time I've thought to, I can't think of the right words. I've been writing all my thoughts down, and tonight I was able to finally put it all down. 
3 weeks ago I got hospitalized...I hadn't felt 100% for a while, and I went in and sure enough there was a spot on my right upper lung(the usual). So I was in the hospital for 1 week and I've been on home IV's since I will be done this week. 
Thankfully I am feeling much better. 

But the biggest thing that happened was 1 week ago Sunday. Life changed. If you follow me on Facebook you probably saw my post, but a week ago my hero took his final breathe. 
If you've followed my blog for a while you'll know my grandfather was my hero. I've done many posts about him. He was such an amazing man. He got hospitalized while I was in the hospital, so as soon as I got discharged I went up by him. He slowly went downhill and Sunday October 9th, 2016 he peacefully took his final breathe and entered into an amazing life. At 93, he lived such a full life. His wisdom, examples, knowledge, but most of all love will never be forgotten. I learned so much from him...but most of all I learned never take life for granted, and always make the most of everything. He was a simple man, worked hard all his life. He didn't have much, but made the most of what he had. He loved his family. I could go on and on. 
To me he was my hero and I know he's watching over us. I keep saying I've cried so much, but all happy tears. I'm sad because I'm selfish and want him here, but I'm so happy that he is now living a pain free life, and with all his friends and family. It wasn't a goodbye, it was just a "see you later". 

So there's a little update as to where I've been. I'm getting really excited now that it's fall, one of my favorite times of the year but also the start to the holiday season. 

I will try to write soon. Till next time.
~God Bless 

Saturday, July 23, 2016


It's been a while since I've done a blog post. 
This summer has been a fast one. In the blink of an eye it seemed as though June came and gone and now it's September. The start to my favorite Wisconsin season, fall. 
In the past couple months we celebrated my grandparents 68th wedding anniversary. Isn't that incredible?! 
It makes me so proud, and I only hope one day I become that lucky. I love my grandparents so much. 
For a while I've been having the same few thoughts going on, and I haven't quite known how to put all my thoughts down...until today. 
Perspective. Such a big yet simple word and yet so complicated. 
With having CF it's given me the great opportunity to see situations in a much different perspective. I always try to see the good in every situation. When things happen I examine them differently. When I get sick and go in the hospital-to me it's just another routine. When I think of the future I think short term then long term. When some think about reality I think about dreams. When others think about how bad something is I think of hope. 
CF has blessed me with having a different perspective on life. I try not to hold grudges, I try to get along with everyone. When I get sick and go into the hospital for me it's routine and I think about how the IV's will help and how I'll get better. When I think of the future I think short term then long. Short term because I don't want to miss ANYTHING! None of us know if tomorrow's promised for us but I want to take in everything I can and plan for the future. Sometimes reality is good but I choose to dream. I choose to give myself something to look forward to. Things to stay healthy for...hope. 
Sometimes we all forget to stop and smell the roses, but it's the kind of perspective we have in situations that make the biggest difference. 

I will be writing soon, I have a CF appointment next week, so my prayer is my numbers go up and I will update after. 

Till next time, ~God Bless

Wednesday, June 1, 2016

The Right Track

It's been a short minute since I've updated you all on how I'm doing and what's been going on. 

In my last post I was still in the hospital. I got discharged the next day(May 11), and I've been on home IV's ever since. Today I completed my final dose of anrtibiotics and got my PICC line taken out. That's a grand total of about 26 days on antibiotics. It's the longest I've been on IV's for quite a while and I think it was the best plan. 

The infectious disease doctor and my pulmonary doctors created the most affective plan and it worked great. For not being a CF center they do an amazing job. I still follow up at my CF center but all my other care is done at this clinic. The quality and level of care is amazing. The way they listen to me, and take into account how I feel on things means everything. The way they carefuly put plans in place, but then run them by me first, that shows me they truly care. 

During my appointment with my infectious disease Doctor today he re-informed me of some cultures they took and what all of them grew. First, I have stenotrophomonous(sp?) as usual, and I had staph. For now pseudamonous(sp?) is not growing. Next he told me that when I came in my white cell count was on the high side(meaning sign of possible infections or virus), which I new. Today it's back to normal. Lastly he said another blood culture they took(I don't remember the exact name) but it's something that measures the inflammation in your body(meaning signs of infection or virus as well). When I came in I was above 4...and he said average was 0-1 or something close. Today I'm 0.1. That's a sure sign there was not good things going on. 

As of this moment I feel good. My cough is now back to my normal. I'm no longer coughing up blood and only occasionally coughing things up. 
I had a follow up with my ENT and my polyp has shrunk way down, which is amazing. 
I feel like things are going in the right direction. 

During this month of IV's I made it a point of trying to make my life more simple. Cutting out certain things that I maybe didn't realize stress me out, or just switching things up. The less hectic the better, and also putting priorities first. 
I feel I'm on the right track with that as well. 

We also celebrated my grandpas 93rd birthday. I talk about him all the time. He's my true hero, and I'm so proud to call him my grandpa, and I'm so thankful I was able to spend his birthday with him. 
*his birthday lunch*

Lastly, I had a first last week. In 21 years of having CF I've never flown with IV's. For Mother's Day my present to my mom was a trip to Florida to visit her parents. This was planned in January. Tickets were bought. When I went in the hospital they assured me I wouldn't miss it. Well it was last week, and I made sure to call the airline, get the appropriate Doctor notes, and I can happily say I had no TSA issues. They looked at me a little weird, but there was no questions. I had a whole small carry on suitcase just full of IV's. 

It was a great trip, spending some time with my grandparents. 

And as of today, I'm officially IV free. 

Here's to another year of no IV's. 

Until next time. 

~God Bless 

Tuesday, May 10, 2016

Slowing Down

There's a lot to update on so let's get started. 
First, I'm still on my steroid regiment for my sinus polyps. This has been for almost three weeks now. It was going good at first, then i developed a cough...bad cough. Coughing tons of junk up. The only thing I could think of was maybe I had some kind of infection and the steroid just irritated it. So for the last few weeks I've been dealing with that. 
Then comes last week. Monday i woke up at 3 a.m. throwing up every little bit. I figured I was just coughing up so much stuff that even though I tried to spit it all out, it was affecting my stomach. 
Any ways after Monday I just wasn't myself. But I went back to work...very weak, not feeling good, not eating much. Wednesday was a bit better. Then Thursday I woke up at 5:30 for work, and I had a huge shooting pain in my upper right shoulder area. It was so bad I could hardly get out of bed. After I got up I couldnt stop coughing and I started coughing up blood. Not just steaks, chunks. That's when I knew, this isn't right. I called into work, called my doctor, and was able to get an appointment. 
Going into this appointment I had no idea of what was going to happen, I kind of just wanted to make sure nothing worse was wrong. I got to the doctor, did blood work, did X-Ray, and saw my local nurse practitioner(the most wonderful lady ever). 
She then came into the room and said, "your white counts are a little high, there's new spots on the X-Ray, and I don't feel comfortable sending you home. Are you okay with staying?" 
My mom and I looked at each other, and I said "yeah". What am I going to say, no? 
This is a part of CF...things unexpectedly happen. You don't control it. So I came into the hospital, Friday I went down for a PICC line. I was promised the procedure would only take 10 minutes. Since last time was 3+ hours. They told me they have this new doctor, and he also specializes in veins. I was apprehensive but was on board. When I went down for the procedure once they started they discovered I had a blockage in my arm(likely the issues from last time), so he asked me if I was ok if he fixed it. I said of course...and he assured me it wouldn't then I had an angioplasty. It worked, didn't hurt, and after that the PICC took 10 minutes. Start to finish less than an hour. The doctor felt bad and said if I would have had an angioplasty a few times before I probably wouldn't have that issue. He was amazing. 
So here I am, it is Tuesday night. Waiting to hear back on culture results(possibly tomorrow) then I get to come home on home IV's for 2-3 weeks. We've been trying to get the correct IV meds, and the best plan of attack before I bust out. 
We've also adjusted a few medicines that are resistant of a few bugs I'm growing. 
I've been extremely happy with my hospital stay, the care and concern is amazing, especially for not being a CF clinic. They really care about making sure the best plan is in place all the way around. 
I can honestly say I haven't really felt this good in months. I must have had something growing and just didn't realize. I am so excited to continue the next few weeks and get my lungs healthy. 
And in honor of CF awarness month I made it 10 months without an admission. 
In the end as I finish writing tonight, I really think this is Gods sign to me to stop and slow down. The last few months have been a little crazy, and at some point you have to just slow down, and I think this is Gods secret plan...and its exactly what I'm going to do. I'm stopping, relaxing, slowing down, and focusing on my health. My number one priority. 
I will update soon! Thank you for all the thoughts and prayers! 
~God Bless 

Thursday, April 21, 2016

The Perfect Appointment

Today was the day that I was to go see my local ENT that was recommended to me. Going into this appointment I was expecting to set up a surgery date. I did a lot of research and didn't think there was much else that could be done.
I've prayed A LOT. I've prayed that this ENT dr I was going to see would be a good fit. I prayed that surgery will have no complications. Deep down my silent prayer was that by a miracle my sinus's would clear all up and I wouldn't have to have surgery. 
I left for my appointment this morning knowing what was ahead(or so I thought). I left my appointment with a whole different view. 

Onto the appointment. I arrived, and got in immedietly. Went through all the routine things, and I gave the assistant the disc of my CT scan that I had. 
The doctor came in, did his small exam, and said; "ok here are our options". First to hear that there were other options kind of shocked me. I had hoped and researched to see if there were other options, and everything had kept going towards surgery. Then he said, there's actually multiple options.
1) do nothing-he said if I felt fine, and didn't feel like fixing anything, I could, it's my choice
2) do a 30+ day run of a steroid(prednisone)-this is his number one choice
3) do a steroid nasal spray
4) do a sinus rinse-which is also recommended either way
5) do a course of antibiotics-an ok option, but he said with someone with CF, we have such a higher risk of needing antibiotics in the future, and can become resistant, why take that chance, and save it for when we really need it.
6) surgery-which he said he does not recommend at this time. he said, with CF patients, we tend to go through so much, why add a surgery on top of everything, and add a whole bunch of unnecessary risks. He did say, yes it is inevitable that someday I will need a sinus surgery, but he proceeded to say, lets not explore that avenue until I really need it, because once you have one surgery, then you will almost always need more in the future.

This doctor was truly a blessing that came into my life I feel for a specific reason. I asked him which option he recommended, and he said option 2, for a number of reasons.
1) by taking a steroid it can shrink my polyp into almost nothing in a short amount of time
2) with CF the way it pretty much works is that if the lungs don't feel right, it can be because of he sinus's, and if the sinus's don't feel right it can be because of the lungs, and if the two together don't gel-you basically have a problem(which I do), and a steroid is good for kicking both problems in the butt-fast-and then it'll all work its way into place. Which could also be the reason my lung function is low, and it could help increase it.

Next he went onto say how amazed he was that I've made it 21 years without any sinus surgery's or other issues. His goal is to make sure we do what I feel comfortable with.

So gameplan: NO SURGERY!! at least for now. I cannot tell you how happy I am. I chose option 2, so tomorrow morning I am starting a 42 day run of Prednisone. For the next 6 weeks, I will be on a different dose each week. I am prepaired to make sure my blood sugars stay ok(I usually get high sugars when I'm on it).
I go back when the prednisone is done for a follow up and we will see where I am at then.

Today turned out to be a great day. I am very thankful that this doctor was brought into my life, and i'm very happy my intuition/instinct told me not to go with the other doctor.

Today I feel very blessed and thankful. It truly was "the perfect appointment".

~God Bless

Sunday, April 17, 2016

Decision Week

As this week has finally approached, it has me thinking about what really is going to happen. This week, in 4 days to be exact I will be having a consult with an ENT and hopefully we'll put a plan in place for my sinus surgery. 
It's to the point now where it's just agrivating me. I want it taken care of. I want to feel better. How I've been feeling the last few months is not my "normal". It's become my normal; when I'm asked how I feel I say good, not even realizing that I've felt like this for so long it is my normal, even though it's not. Does that make sense? 
My short term goal is currently to get my sinuses cleaned out and focus on getting my health back to my "normal". 

My long term goal is to move past these health things for a while, and I know once my health is back to normal that will happen. To me CF is something I have, NOT who I am. 

I am so excited to get past this little bump in the road and to start really enjoying life. I have big plans this year. 2016 is going to be a great year with great memories to be made. 

I will post an update after I have my appointment, and I'm excited to take you all oh this exciting journey! 

~God Bless 

Thursday, March 10, 2016

Next Phase

Monday and Tuesday I had my appointments in clinic. It started with the glucose test(which only took three tries for an IV),
then I had my dexa scan(it tests bone density), from there I had a chest X-ray, and I ended with my CT scan of my sinuses. 
Then I had PFT's, which were 85%. Still very low for me, but not lower. They are stable. I got all my results and Everything looked good. I am still borderline but I'm not diabetic. All my levels look good. My xray looks pretty much the same as it did last year. My dexa scan showed my bones are above average. Then I got the results of my sinus CT. As we've all assumed my sinus's are pretty full. Which means I need sinus surgery. Not a big shock. I had a feeling it was going to show that. 
The only small detail is I do not like the ENT my doctor works with. In fact she told me she knows of know one else. So after my appointment we called my nurse practitioner, who I absolutely love(the one I go to when I need a hospitalization, or when I need a second opinion) and she does work with a pulmonologist. We told her what was going on and she recommended two ENT's that she works close  with. Today I heard back and next month I have a consult with one of them. All they need is my current CT scan and notes. 
I'm happy that all my teams of doctors can work together, and I'm very thankful I have all of them to help me with my health. 
I'll be honest, I'm not looking that forward to the surgery, but I know it is the best thing for my health. This could be the whole reason my lung function is down and why Im not feeling 100%. Im looking forward to the consult only because the sooner the surgery, hopefully, the sooner I start feeling better. The surgery will probably be in summer due to the fact of time/availability. 
I will definitely be bringing you all on this next journey in my health. Thanks for all the support, love, messages, and prayers. It means a lot. 
Until next time, 
~God Bless

Sunday, March 6, 2016

March 7th

It's crazy how sometimes little details in life repeat themselves. Every year I celebrate March 7th. It's the day that mine and my family's life changed forever. 
On March 7th I was diagnosed with Cystic Fibrosis. Though I was obviously born with CF, I consider March 7th my "CF Anniversary". 
On March 6th 1995, my parents probably didn't know that the next day everything would change. 
I say it's interesting that life repeats itself because tonight I sit here in a hotel room, and tomorrow I'm going to spend the day at the doctor. I don't ever remember having an appointment on my actual anniversary. 
Tomorrow and Tuesday I have doctors appointments. Tomorrow I have my glucose test, X-ray, dexa scan, and sinus CT scan. Then Tuesday I have PFT's and see my doctor. I'm trying something different. Splitting everything into two days of appointments so I don't get to wore out like I usually do. 
Then tomorrow after my appointments I am going to enjoy a fun day with my mom, celebrating my anniversary. 
21 years ago none of us knew what laid ahead of us. It's been quite a journey so far, and I can't wait to see where else life takes me. I'm going to do my best to live my life to the fullest. I can't wait to celebrate 21 more CF anniversaries, and hopefully one day not long from now I'll also be celebrating the anniversary of when CF became...Cure Found. 

Tuesday, February 16, 2016

Options & Hope

Today I went back to my old clinic. The clinic I went to for 7+ years before i transferred to my current clinic. I did lots of research. I met with one of the top doctors. She was awesome. Very knowledgeable. She answered a lot of my questions, we talked about health plans, goals, and went over my medical history. 
Each person I had contact with today asked why i wanted to switch since I'm currently attending one of the top CF centers. When you hear a clinic say their following "Minnesota protocol" that's my clinic. 
This clinic is smaller. In their words they try to model the clinic I go to, and are even trying to recruit my old pediatric pulmonologist so they can get more research there. 
After lots of discussion, questions, and meeting a wonderful CF team I left with options. 
I did not want to make a final decision today. I wanted to weigh all my options. I left with a small amount of, "what do I do", and a greater amount of hope. 
I now have two great clinics I can choose from. Both are great. Don't get me wrong I do love my current Doctor, there just needs to be some change. 
So after all this where does this leave me. 
Right now I am going to keep my two doctors appointments in Minnesota next month. One day I have my annual studies, chest X-ray, dexa scan, and sinus CT. Then the next day I have PFT's and the doctor visit. This appointment will be at a new facility, so maybe things will be different. My biggest dilemma really, is wanting a new ENT doctor for when I need my sinus surgery.
I am going into the appointment with all my concerns, questions, and most importantly options. I think just knowing that there are other options now just releaves a little pressure. 
Switching clinics isn't easy, especially when you have a whole team you work with. It's not just a doctor you switch. You switch dietician's, respiratory team, social workers etc. it's like leaving family, and today while being at the other clinic hearing how highly they talk about my current clinic, I couldn't help but feel a small sense of pride. It made me really think how thankful I am to be able to go there. To be at the tip of research, to see some of the top doctors, be at the clinic the VEST was created. To have met the doctor who created the VEST, and to also be at one of the top medical schools. 
A small part of me had a little guilt for being at this other clinic, almost like being a trader, BUT it made me realize how blessed I am to have all of that at my finger tips. 
I'm now sure if all my ramblings made any sense, but I say all that to say, I don't have my final decision made, and I won't make it until after my appointments next month, but today I left with more hope, gratitude, and most of all options. 

~God Bless 

Monday, February 15, 2016

Glimpses of Hope

It's been two months since I've posted an update, mainly because I haven't had to much to update on. In January I went down to Florida to visit my grandparents, and enjoy some warm weather. It was nice to relax a little to start off 2016. 
Last week Friday, I had one of my dreams come true. I've had glasses since I was 3, and not a big fan, so I had LASIK eye surgery. I'm in love. The next day(Saturday) I had a follow up appointment, and I have 20/20 vision. The eye doctor even took a picture of my "perfect" eye. 

Now onto a health update. I can finally say I have a glimpse of hope again. Tomorrow I have my very first appointment meeting with a new doctor, at my old clinic. It's been a long time coming. The waiting game is long overdue. I'm ready to improve my health, and hopefully this appointment will be the start of a great journey. 
To say in the past few months I've lost hope...I wouldn't quite say that. Maybe more of feeling defeated. Not knowing which way to go. Having my hands tied of staying, or switching clinics, and doctors. Those with CF know you get attached to your medical team. They become family. You trust them and put your life in their hands. 
It's scary to move and switch. It's scary to think of starting over. But, you can't let that get in the way of your health. 
It's time to turn the page. Time to start a new chapter. In my case I'm going back. Back to the clinic where I went when I was diagnosed, back to the place that basically saved my life. If it wasn't for this clinic, I probably wouldn't be here today. Of course it'll be different...but I'm so excited. 
I'm excited for this new chapter. Though it may be a little scary, I feel God has pointed me in this direction, and I know he has his hands on my shoulders. 
I can finally say I have glimpses of hope again...

~God Bless