Friday, September 27, 2013
Tuesday, September 17, 2013
"Lung transplant evaluation journey"
I scheduled my first visit with the Duke lung transplant team the first of October. I am excited, nervous and still all feels unreal. Please continue to remember my family and I in your prayers as we prepare for the unknown. I know GOD is in control and has a purpose for everything <3.
Monday, July 22, 2013
"My amazing family"
At times I think the Dr.s are crazy and I am NOT as bad as they tell me I am but then again I have days like Sat when I couldn't even vaccum my bedroom without stopping to rest I realize how my lungs have declined.
I don't know what I would do without my amazing family! Thank you Michael, Mckaley, Abby and Luke for always standing by me and helping me when the road gets too hard. I love you with all my heart!
I don't know what I would do without my amazing family! Thank you Michael, Mckaley, Abby and Luke for always standing by me and helping me when the road gets too hard. I love you with all my heart!
Thursday, July 18, 2013
"God has a plan"
When I started my blog I had decided that I wouldn't use it as a poor pitiful me blog feeling sorry for myself. After having a conversation with a awesome lady, a LAM sister that inspires me so much Melanie Putman I have decided that defeats the whole purpose of my blog. She explained to me that I needed to express my feelings and how I was feeling physically with this stinking lung disease in order to help other ladies. Well here goes :).... The last couple days the weather has been in the 90's and has been EXTREMELY hard on me! Some days are good and other days I dread taking a bath and washing my hair because it wears me out so bad. Therefore I try to pace myself and on those good days I take complete advantage of them and on the bad I am TRYING to allow myself NOT to feel guilty and to just rest. I try so hard to be positive and appreciate everything that God has blessed me with. I have to confess sometimes I can't help but get so discouraged. The last couple days I have had no energy, have had to wear my oxygen most of the time and my chest is sore from trying to breath so much. Most people don't even notice they are breathing but it is in my every thought. I know there are so many people that are in a lot worse shape then I am. I look forward to one day after I get a new set of lungs (wings) being able to go all day and do EVERYTHING my girls and husband want to do without getting wore out and making myself sick. I think about the days I was able to do this. I worked full time then and it always crosses my mind that now since I am at home with my girls maybe just maybe that was Gods way of slowing me down and allowing me to realize WHAT TRULY MATTERS IN LIFE. I know regardless of how frustrated I am God has a plan.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11). I believe this with all my heart even on the days I am discouraged <3!
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11). I believe this with all my heart even on the days I am discouraged <3!
Saturday, June 22, 2013
What is LAM?
LAM, or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis), is a rare lung disease that mostly affects women of childbearing age.
In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes, and kidneys.
Over time, these LAM cells can destroy the normal lung tissue. As a result, air can’t move freely in and out of the lungs. In some cases, this means the lungs can’t supply the body’s other organs with enough oxygen.
(TSC). Women who have TSC often have a milder form of LAM.
About 50 percent of women who have LAM develop pneumothorax (noo-mo-THOR-aks), or collapsed lung. In this condition, air leaks out of the lung and into the space between the lung and chest wall (the pleural space).
A collapsed lung can cause pain and shortness of breath. Sometimes one lung will collapse over and over again. Pneumothorax is a serious condition. It usually requires treatment and might be life threatening.
Not long ago, doctors thought women who had LAM wouldn't live more than 8–10 years following diagnosis. They now know that some women may survive longer (as long as 20 years following diagnosis, although this is rare).
Doctors have learned a lot about LAM in recent years. They're now able to diagnose the condition earlier. Support services also are now available to help improve the quality of life for women who have LAM.
Researchers continue to explore and test new treatments for LAM.
In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes, and kidneys.
Over time, these LAM cells can destroy the normal lung tissue. As a result, air can’t move freely in and out of the lungs. In some cases, this means the lungs can’t supply the body’s other organs with enough oxygen.
Overview
There are two forms of LAM. Sporadic LAM occurs for unknown reasons. LAM also can occur in women who have a rare disease called tuberous sclerosis complex (TSC). Women who have TSC often have a milder form of LAM.About 50 percent of women who have LAM develop pneumothorax (noo-mo-THOR-aks), or collapsed lung. In this condition, air leaks out of the lung and into the space between the lung and chest wall (the pleural space).
A collapsed lung can cause pain and shortness of breath. Sometimes one lung will collapse over and over again. Pneumothorax is a serious condition. It usually requires treatment and might be life threatening.
Normal Lungs and Lungs With LAM
Figure A shows the location of the lungs and airways in the body. The inset image shows a cross-section of a healthy lung. Figure B shows a view of the lungs with LAM and a collapsed lung (pneumothorax). The inset image shows a cross-section of a lung with LAM.
Many women who have LAM get tumors called angiomyolipomas (AN-je-o-my-o-li-PO-mas), or AMLs, in their kidneys. Women who have LAM also may develop:- Growths in other organs, including the liver and brain
- Large tumors in their lymph nodes
- A buildup of fluid in their chests, abdomens, or pelvic areas
Outlook
LAM has no cure, and the disease tends to worsen over time. How quickly the disease worsens varies from woman to woman. LAM may lead to death from respiratory failure. Lung transplant is a treatment option for women whose lungs have been damaged by LAM.Not long ago, doctors thought women who had LAM wouldn't live more than 8–10 years following diagnosis. They now know that some women may survive longer (as long as 20 years following diagnosis, although this is rare).
Doctors have learned a lot about LAM in recent years. They're now able to diagnose the condition earlier. Support services also are now available to help improve the quality of life for women who have LAM.
Researchers continue to explore and test new treatments for LAM.
I have decided to start a blog about my life with a lung disease. I know I have a long road ahead of me but I also know I have A LOT more living to do! I will give a brief explanation of my health to date for those of you that want to follow me through this journey.
In 2005 I was told by my Dr that I had COPD (Chronic Obstructive Pulmonary Disease) but they didn't understand why with my age (33 at the time) and not smoking. In 2008 my local Dr sent me to Duke University to meet with the Lung transplant team only to determine after a week I was not ready (after many prayers)! This goes to show only the man upstairs knows the full plan. In 2009 I got a call from my local lung Dr that said he thought I had been misdiagnosed. He had been looking over my CT scans and thought I had a rare lung disease called Lymphangioleiomyomatosis (LAM). It affects women in there child bearing years and they think it is caused by estrogen. In October of 2011 I got really sick with a lung infection and my Dr advised me to stop working because my body was so wore down that I couldn't keep up with work, family and take the care I needed of myself. In 2012 I had a lung biopsy to try to determine if I did have LAM. The biopsy didn't show LAM cells but was told they were not ruling it out that if I had an open lung biopsy they could give me a 100% diagnosis. There are many risk that come with having an open lung biopsy because my lungs have so many cyst in them (honeycomb affect) so I have decided at this stage not to have one. In June of 2013 I went to my local lung Dr for a check up which included the normal breathing test and walking test. I was told I now need oxygen and that my Dr is reaching out to the Duke transplant team because my numbers have drop to that level required to possible be put on the transplant list after evaluation. My hopes in doing this blog are not only to keep my friends and family up to date on my journey but I hope God uses me to help other young ladies that may be going through the same issues I am. If I have learned anything it is God is in control and he works through these awesome Dr's that are trying to make our quality of life better <3.
In 2005 I was told by my Dr that I had COPD (Chronic Obstructive Pulmonary Disease) but they didn't understand why with my age (33 at the time) and not smoking. In 2008 my local Dr sent me to Duke University to meet with the Lung transplant team only to determine after a week I was not ready (after many prayers)! This goes to show only the man upstairs knows the full plan. In 2009 I got a call from my local lung Dr that said he thought I had been misdiagnosed. He had been looking over my CT scans and thought I had a rare lung disease called Lymphangioleiomyomatosis (LAM). It affects women in there child bearing years and they think it is caused by estrogen. In October of 2011 I got really sick with a lung infection and my Dr advised me to stop working because my body was so wore down that I couldn't keep up with work, family and take the care I needed of myself. In 2012 I had a lung biopsy to try to determine if I did have LAM. The biopsy didn't show LAM cells but was told they were not ruling it out that if I had an open lung biopsy they could give me a 100% diagnosis. There are many risk that come with having an open lung biopsy because my lungs have so many cyst in them (honeycomb affect) so I have decided at this stage not to have one. In June of 2013 I went to my local lung Dr for a check up which included the normal breathing test and walking test. I was told I now need oxygen and that my Dr is reaching out to the Duke transplant team because my numbers have drop to that level required to possible be put on the transplant list after evaluation. My hopes in doing this blog are not only to keep my friends and family up to date on my journey but I hope God uses me to help other young ladies that may be going through the same issues I am. If I have learned anything it is God is in control and he works through these awesome Dr's that are trying to make our quality of life better <3.
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