Many of you probably have heard that little Sarah Murnaghan received a successful lung transplant last week. How awesome for her is that? Her mother reports that she is still in the ICU and doing well so far, but it is still a long road for her. Thanks for all the prayers for Sarah and her family.
I, myself, am doing well and am a little over half way done with my Cipro antibiotics. The medicine is so gross tasting as soon as it touches my tongue that I had to come up with an idea to get it down without gagging! Finally I tried some salteen crackers. I rub the salty side of two crackers all over my tongue and it masks the taste. Thank God because I felt like a little kid and wanted to hide when it was medicine time...
My coughing has lessened a great deal and besides the side effects of the medicine (stomach issues and feeling tired/dizzy at times), I'm feeling pretty darn good.
Thank you to all who have subscribed to my postings and that are passing the word along about this blog. Have a great rest of the week!
Wednesday, June 19, 2013
Monday, June 10, 2013
Emergency Room Trip
For those of you that haven't heard, little Sarah Murnaghan is now eligible to receive a lung transplant using an adult lung. This is terrific news! However, the doctors say that she may only have even as little as a few weeks to live if a transplant doesn't happen soon. She has already been waiting 18 months. So, you know what to do...
As for me, I had a little scare last Thursday night. At around 9PM I started coughing a little (nothing unusual) and all of a sudden coughed up a little blood. Gross I know, but it happens at times. Since I cough all the time anyway, vessels in my lungs are often weakened and sometime burst causing that to happen. Long story short, I went to the ER in town who took blood and did xrays. Then the doctor came back and said that he saw something "not right" on the xray and that I needed to be ambulanced to Barnes. That's when the really long night started. After being up since 5:30 that morning, my day (and hubby's) ended up going until about 6PM the next day! We both only got about an hour of sleep or so in that period of time. Plus, me being me, as soon as I got home at 2PM Friday I took a shower and headed to work for 2 hours! : ) That was my choice...
After arriving around very early morning on Friday in St. Louis at Barnes-Jewish Hospital, they then started THEIR blood work and xrays. I also did a Pulmonary Function Test (PFT) and scored only a few percentage points lower than 3 months ago. So with the data the doctors collected, they ruled out that it was Pneumonia and just called it a slight lung infection. That doesn't really surprise me since I've been coughing since March. I am very grateful for the "easy" fix and pray it continues to work well.
The doctors prescribed 750mg of Ciproflaxin twice a day for 21 days. This stuff is pretty strong, looks like a horse pill, and tastes like poison. I literally want to puke thinking about how bad it tastes when it touches my tongue. It's awful and starts disintegrating immediately when it touches anything wet. I can't have dairy too close to taking it, must drink a lot of water, blah blah...yuck. I am feeling better though with the exception of the side effects of the Cipro.
It's amazing how fast fear can creep into a situation. When the doctor said I needed to be hospitalized you would have thought my head heard "get ready to kick the bucket". I had to remind myself that everything would be ok and that "God has this". When I was laying in the hospital bed it was the weirdest thing, but I kept hearing a full instrumental version of "Amazing Grace" playing. I mean signers and all! I'm very grateful that I was not required to stay the normal 3 day to 3 week hospitalization that many CFers are forced to do in order to continue living. Ten year old Sarah has been in the hospital for over 100 days.
So the lesson today? Don't let fear over take you because it acts like a mudslide or quicksand. Fear can take over very quickly and consume you! Also, realize how important your life is. Mend those broken friendships, pursue your life goals and ask God to change that bad attitude or habit that you struggle with while there is still "time". Appreciate everyday and every breath because you don't know when the last one will be here and gone.
1 Corinthians 16:13
As for me, I had a little scare last Thursday night. At around 9PM I started coughing a little (nothing unusual) and all of a sudden coughed up a little blood. Gross I know, but it happens at times. Since I cough all the time anyway, vessels in my lungs are often weakened and sometime burst causing that to happen. Long story short, I went to the ER in town who took blood and did xrays. Then the doctor came back and said that he saw something "not right" on the xray and that I needed to be ambulanced to Barnes. That's when the really long night started. After being up since 5:30 that morning, my day (and hubby's) ended up going until about 6PM the next day! We both only got about an hour of sleep or so in that period of time. Plus, me being me, as soon as I got home at 2PM Friday I took a shower and headed to work for 2 hours! : ) That was my choice...
After arriving around very early morning on Friday in St. Louis at Barnes-Jewish Hospital, they then started THEIR blood work and xrays. I also did a Pulmonary Function Test (PFT) and scored only a few percentage points lower than 3 months ago. So with the data the doctors collected, they ruled out that it was Pneumonia and just called it a slight lung infection. That doesn't really surprise me since I've been coughing since March. I am very grateful for the "easy" fix and pray it continues to work well.
The doctors prescribed 750mg of Ciproflaxin twice a day for 21 days. This stuff is pretty strong, looks like a horse pill, and tastes like poison. I literally want to puke thinking about how bad it tastes when it touches my tongue. It's awful and starts disintegrating immediately when it touches anything wet. I can't have dairy too close to taking it, must drink a lot of water, blah blah...yuck. I am feeling better though with the exception of the side effects of the Cipro.
It's amazing how fast fear can creep into a situation. When the doctor said I needed to be hospitalized you would have thought my head heard "get ready to kick the bucket". I had to remind myself that everything would be ok and that "God has this". When I was laying in the hospital bed it was the weirdest thing, but I kept hearing a full instrumental version of "Amazing Grace" playing. I mean signers and all! I'm very grateful that I was not required to stay the normal 3 day to 3 week hospitalization that many CFers are forced to do in order to continue living. Ten year old Sarah has been in the hospital for over 100 days.
So the lesson today? Don't let fear over take you because it acts like a mudslide or quicksand. Fear can take over very quickly and consume you! Also, realize how important your life is. Mend those broken friendships, pursue your life goals and ask God to change that bad attitude or habit that you struggle with while there is still "time". Appreciate everyday and every breath because you don't know when the last one will be here and gone.
1 Corinthians 16:13
Be on your guard; stand firm in the faith; be men of courage; be strong.
Tuesday, June 4, 2013
Pray for little Sarah
Please pray for Sarah Murnaghan, a 10 year old Pennsylvania girl, who is in the end-stage of Cystic Fibrosis. She is ineligible for a lung transplant because of her age and the low availability of pediatric lungs. The required age is 12 for an adult lung transplant. Please say a prayer for this child and her family. To read more about Sarah's story, please click here (Huffington Post).
A lung disease is a very unique sickness to have to deal with for your whole life. It's exhausting, frustrating, expensive, and deadly (no cure). Every breath a CF patient takes reminds them that CF is in the body. On top of that, many CFers experience digestive system issues and has to take medicine every time food is ingested. THAT is another reminder (especially when you forget the meds). Although this diagnosis is depressing, I must do all I can to be proactive and positive. CF is a card I was dealt in life and every person has their own deck to deal with. Bad things happen to "good" people - yes. Good things happen to "bad" people - yes. No matter what happens, we all still have choices to make.
If you can think of something sad or tragic that has happened in your life that has affected you (positive/negative), think about what things you have learned from it. For example, a loved one dies. Perhaps you learn to find more value in life or you learn to love others more. You loose your job that you've had for 25+ years and your life falls apart, but then you realize that "LIFE" was waiting for you and finally now you can have some long over due fun in life and get happy again. Maybe a stranger blows you off making it seem like YOU are the weirdo! Then they become a great friend. Who's the weirdo now? ; ) Or you have the break-up of your life and down the road you realize it was the best unanswered prayer.
Look at life as a whole. There are sad things going on each day in every crevice of the world! I believe that we all suffer at times so that the good of people can shine through the darkness. It's hard to be selfless and to make time, but just remember, if it was you needing help, wouldn't you want others to stop and lend a hand (or ear)? Please make the time today to say a prayer, make a phone call, give an extra hug, donate money to storm victims or starving people. Do something. Make a difference and remember...Hey, we are all in this together.
Thank you for your support and I hope you take a moment to pray for peace in the Murnaghan family while they are going through this difficult time. God's got this no matter the outcome. Thank you for taking the time to read this blog too. I'm amazed at how many people mention it to me. I didn't think anyone was really reading! : ) I'll update again soon. Doctor appointment on the 10th.
A lung disease is a very unique sickness to have to deal with for your whole life. It's exhausting, frustrating, expensive, and deadly (no cure). Every breath a CF patient takes reminds them that CF is in the body. On top of that, many CFers experience digestive system issues and has to take medicine every time food is ingested. THAT is another reminder (especially when you forget the meds). Although this diagnosis is depressing, I must do all I can to be proactive and positive. CF is a card I was dealt in life and every person has their own deck to deal with. Bad things happen to "good" people - yes. Good things happen to "bad" people - yes. No matter what happens, we all still have choices to make.
If you can think of something sad or tragic that has happened in your life that has affected you (positive/negative), think about what things you have learned from it. For example, a loved one dies. Perhaps you learn to find more value in life or you learn to love others more. You loose your job that you've had for 25+ years and your life falls apart, but then you realize that "LIFE" was waiting for you and finally now you can have some long over due fun in life and get happy again. Maybe a stranger blows you off making it seem like YOU are the weirdo! Then they become a great friend. Who's the weirdo now? ; ) Or you have the break-up of your life and down the road you realize it was the best unanswered prayer.
Look at life as a whole. There are sad things going on each day in every crevice of the world! I believe that we all suffer at times so that the good of people can shine through the darkness. It's hard to be selfless and to make time, but just remember, if it was you needing help, wouldn't you want others to stop and lend a hand (or ear)? Please make the time today to say a prayer, make a phone call, give an extra hug, donate money to storm victims or starving people. Do something. Make a difference and remember...Hey, we are all in this together.
Thank you for your support and I hope you take a moment to pray for peace in the Murnaghan family while they are going through this difficult time. God's got this no matter the outcome. Thank you for taking the time to read this blog too. I'm amazed at how many people mention it to me. I didn't think anyone was really reading! : ) I'll update again soon. Doctor appointment on the 10th.
Sunday, May 19, 2013
Please don't take away Disability Benefits...
There is still much work to be done to prevent changes that could make it more difficult for people with Cystic Fibrosis to receive disability benefits. Now it's time to talk to those senators!
Send a message to your senator by clicking here.
The CF Foundation recently worked with several House Representatives to send letters to the Social Security Administration that explains the concerns about the proposed disability benefit eligibility changes. The last post asking for your help resulted in over 9,000 messages (collectively) from advocates throughout the US. Let's work together and do the same with the Senate!
Well, summer is here! So is coughing. : / Going from hot and humid to A/C isn't always the best for me. So needless to say, our house isn't usually that cool inside. We don't mind though. As long as we have a fan on at night we can usually make it through ok...lol. We haven't had TV channels for over 5 years either! It's amazing what you really can live without. I don't have FaceBook at this time either. Gosh, what do I do with my time? A lot of other things!
My next doctor appointment is coming up June 10th so I'll give another update later. Thank you for all that you do! Together, we will keep adding tomorrows to lives of all people with CF - Including ME!
Send a message to your senator by clicking here.
The CF Foundation recently worked with several House Representatives to send letters to the Social Security Administration that explains the concerns about the proposed disability benefit eligibility changes. The last post asking for your help resulted in over 9,000 messages (collectively) from advocates throughout the US. Let's work together and do the same with the Senate!
Well, summer is here! So is coughing. : / Going from hot and humid to A/C isn't always the best for me. So needless to say, our house isn't usually that cool inside. We don't mind though. As long as we have a fan on at night we can usually make it through ok...lol. We haven't had TV channels for over 5 years either! It's amazing what you really can live without. I don't have FaceBook at this time either. Gosh, what do I do with my time? A lot of other things!
My next doctor appointment is coming up June 10th so I'll give another update later. Thank you for all that you do! Together, we will keep adding tomorrows to lives of all people with CF - Including ME!
Monday, April 22, 2013
Please Don't Cut Funding!
Cystic Fibrosis research does not receive as much attention and
funding as, say, Cancer or Leukemia. Currently,
States are in the middle of making important program funding decisions that
will greatly affect the availability of high-quality, specialized care for CF
patients. In addition, several States are proposing changes that will make it
even HARDER for CF patients to receive disability when they really need it. On
top of those looming possibilities, the government recently approved drastic funding cuts for medical
research and drug review. Please let state representatives know that this
funding is needed and is very important to someone you know! Also please take the time to let the Social
Security Administration (SSA) know that when CF patients get to a point where
the sickness will not allow them to work on a regular basis, disability is
important and necessary for CF patients!
As a CF patient, I’m sure that many “sick” people can
relate, having the money and INSURANCE to cover necessary medical drugs is
extremely important and often a frequent stress factor in life. Recently while on the CF Pharmacy website, I
discovered that the newest drug, Kalydeco, which I am not yet prescribed to take,
is almost $31,000 for 60 pills if I didn't have insurance! My nebulizer medicine is $2,657 for 30 days.
Another example is my Pancreaze enzymes which I must take multiple of each time
I eat. That’s $218 per month (give or
take). Sometimes, the future seems so unknown when it comes to being able to
pay for medicines so I can survive. At least I am fortunate enough to have the opportunity
to get medicine if I need it. Third
world countries have a much larger need and it’s hard for them to obtain the
necessary medicines. Worldvision.org
multiplies monetary gifts by 10 to
help those people in need. (Just thought I’d mention that!).
Well, April is almost over and May is within reach. I’m
ready for the sunshine (and exercise!). I’ve been a little sick lately but this
weekend it seems to have gotten a little better. Thanks for all the prayers and
support. You are appreciated and loved
back!
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