I have heard thy prayer, I have seen thy tears, behold I will heal thee.
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Thursday, June 16, 2011

Lets talk about Prednisone

Prednisone:
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Prednisone:

Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.

I can check off just about every single one of those side effects & I am on a very small daily dose of 5mg. However, Prednisone is an important and effective medication for post transplant patients. I don't see it list "increase blood sugar levels" or "water/fluid retention" or looking "swollen" as I have encountered those side effects. But beyond those I want to sorta focus on "increased appetite". . .

Life before transplant was a life long daily struggle to put on and keep on weight. . why? Ya know I always thought is was just because my pancreas and digestive system were affected by CF which caused my body to NOT absorb and break down what I ate. Then how is it that miraculously after getting new lungs, putting on weight and maintaining weight is not an issue? In fact I have noticed that a lot of post transplant CF patients for the first time in our lives struggle with gaining too much weight. This is one of the trade-offs that I talk about. I understand why, I even asked my doctor about it to see if the conclusion I had come to was even correct. I was surprised that I was right (or at least it made sense).

You see when you have "CF" lungs they are always keeping your body running and working overtime just to keep them working. This means every part of your body linked to your lungs will have to work harder (and everything is linked to your lungs in some way). In an effort to breathe, your body will do several things. It goes into survival mode. It disperses energy to where your body needs it most, but in order to get that extra energy it has to steal it from other functions of your body. Makes sense right? So your digestive system which is already compromised and other organs that are "less important" are working at a lower capacity than they need. Also your body recognizes that the oxygen in your blood is not sufficient, therefore it tells the heart to pump harder and faster in hopes that will compensate, when in fact it just makes your heart work too hard and will cause your heart to become enlarged.

Okay, so my body got to the point where it had no more resources, no where to steal enough energy or strength to keep my damaged lungs working. . .and I was blessed with new ones. CF free ones. My lungs don't need extra energy pulled from any other part of my body. My pancreas and digestive system are happier along with my heart (which repaired itself). Now my body doesn't need all that extra energy (aka:calories)BUT Cystics have been programed to take in over 4,000 calories a day since our bodies needed all that extra fuel. However, post transplant my body doesn't' need all that. . .it doesn't burn off that much. . .so where does it go? Hey, and lets add Prednisone which "increases appetite" now we want to eat, we are taught to eat a lot, but we don't need all that.

There are two options now. One is to indulge myself, I mean I did survive a lung transplant. . .or I can re-teach myself how to eat properly and take care of my new body. Even though I only got new lungs, I have honestly looked into the mirror and realized my body has changed a lot too. It's working properly for the first time in my life :) But now it needs as much or MORE exercise, proper diet and calorie intake, and I watch my sugars to avoid diabetes. For the first time in my life I have cellulite on my legs and butt, heck for the first time in my life I have a butt!! I have a little muffin top (which I try to keep small) and some days my face can look a little full or swollen. I counter act these with eating a proper calorie diet, very little snacking, rarely eating sugar, avoid drinking regular soda or candy and exercise regularly.

I may not be able to avoid all the side effects of my meds like prednisone (the moodiness especially), but I think making the right choices to decrease the effects or at least try to decrease the effects is important.

*Remember*: I am not a doctor. . .I just play one on my blog. haha! Hope this is helpful, it's my opinion, my philosophy but so far it's helped me maintain a healthy, active figure post transplant.

Any comments on their post transplant experience with prednisone or weight is welcome!!

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2 comments:

Kristin said...

Jesse gets put on prednisone every now and then, he never notices any side effects. He wishes he could take it all the time, but the doctors worry it could make his bones brittle.

I got put on it when my allergies were really bad last year and felt horrible. It made me so dizzy and gave me severe stomach cramps.

I'm glad you are able to enjoy your new, healthier body!

Collette Larsen said...

Hello Jamie,

I am Sharlie's mom...I believe you know her. She is currently in the hospital and I believe very close to transplant. My question to you - why did you go to Pittsburg? What prompted that decision? I am researching for Shar. USC is evaluating her, but I just don't feel that good about it. I'm finding it difficult to get actual survival rate statistics. Would love your input.

Warmly,

Collette Larsen
collette@collettelarsen.com

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen