Heather's Lungs

Breathe Together

Author: Joshua

HeatherPalooza



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Heather is home with new lungs

After Waiting for just over a Year for Heather to receive a bilateral lung transplant she received the call on June 26 2013. We have been waiting for so long we became somewhat complacent in what we were waiting for.

I was just walking out the door for work when heathers phone rang. As I was listening to her I knew this was the call we have been waiting for by the somber tone in her voice. After hanging up she looked at me with a gazed stare and said “I cant believe it they are here, This is going to happen today. I don’t think I’m ready now!” There were so many emotions it was almost like a dream.
We arrived at the University of Washington around 10 am. I was with her though all of her pre op. Then the hard part came for me where I had to watch her be rolled past the doors of the operating room and wait for a call of updates every 2 hrs. Fortunately every call for the updates were positive. After 8 hr in the waiting room Her surgeon came in to tell everyone that the operation was a success.
Heather is now home and is healing remarkably well. There are no sings of rejection and she is felling better every day. She is pushing herself as hard as she can to heal and start running again.
It is hard to believe that for almost two years I witnessed her lungs failing her and her body getting weaker. Her body was slowly dying but her mind and spirit never gave up. She kept a positive and happy outlook on life even though she was on the lung transplant waiting list. She is a true example of what your mind can achieve over the body.
She now has a second chance at living life and our kids and I have a second chance at living life with her. We will not take it for granted and cherish every moment we have.
Thank you so much to everyone that continually prayed. The prayers have been answered and this family could never feel more blessed.

What is Constrictive Bronchiolitis.

Heather is suffering from a disease called Constrictive Bronchiolitis. This is a rare disease that affects the smallest airways in the lungs and restricts the body’s ability to oxygenate the blood.

As an analogy, imagine the lungs airways as the root structure of a large tree. They are large at the top and get smaller and smaller the deeper they reach into the earth. The tiny roots, some as thin as a human hair, bring the needed water and nutrients to the tree.
 The Lungs act in a similar fashion.
1. When we breathe,our Lungs fill up with air. 
2. At the same time the Right side of the Heart is pumping blood to the Lungs.   
3. As the oxygen reaches the tiny airways of the Lungs, it enters into the blood, removing the carbon dioxide.
4. We then exhale the carbon dioxide(waste) our blood had absorbed on its journey through our body.
5. The clean(oxygenated)blood is then pumped to the Left side of the Heart which sends it back to the body.
 
In Heather’s case, these very small airways are becoming restricted and squeezed from her disease. This limits the amount of oxygen entering into her bloodstream. At rest Heather seems to be fairly stable.
Her oxygen levels stay in the mid 90% range. Keep in mind that a normal persons oxygen levels will always stay in the high 90’s to 100%. As we all know, with activity,we begin to breathe harder and our Heart pumps faster. With any activity, even walking, Heather’s Lungs can’t oxygenate her blood fast enough on their own. This requires her to be on concentrated oxygen to recover.
 
Just walking from one room to another we have seen Heather’s levels drop to the high 70’s with a heart rate of 120 and above. This would feel like suffocation to any normal person.
 
As this disease progresses the tiny airways become what looks like scar tissue and no longer function at all. As more of these airways get destroyed Heather will will become more dependent on supplemental
oxygen.
 
The secondary problem caused by this disease affects the Heart. If the blood does’t get the oxygen it needs from the Lungs, the blood in turn doesn’t get rid of the carbon dioxide. The blood is still sent back out to the body which sends an emergency signal to the Brain. The Brain tells the Right Heart to send more and more blood to the Lungs because the body isn’t getting enough clean blood. The Right Heart thinks it needs to work harder even though it is the Lungs that are dropping the ball.
 
This added pressure on the Pulmonary Artery leads to Pulmonary Hypertension and more. Just like any muscle you focus on at the gym, the Right Heart begins to get larger. Unlike other muscles, with the Heart, larger doesn’t mean stronger. An enlarged, overworked Right Heart can lead to cardiac arrest.
 
Thanks to the team at UW, they are not only watching the disease but working hard to keep all the side effects under control as well.     -John Rima  
 
 

On the list for 7 months.

I have officially been on the list for 7 months. The wait has been not so bad. Been sick a few times and breathing can be good and bad at times, but I’m finally feeling my medicine kick in so its making me feel like I can take care of my kids better =-). I am so thankful for all the support I have received. This has been a crazy journey so far and it seems it will only get crazier.
Thank you for keeping me and my family in your prayers. More updates to come ! Heather Phillips

Dec-19th

 

Well the Phillips family has had a rough couple of weeks. Right now Josh Corbin and Keira all have ear infections and have already been sick for a week, heather has been sick for 2 weeks with the flu. Heather also goes in for a right heart catheterization on Dec-28th. As of now the whole family is recovering and is continually grateful for all the prayers. The support has been amazing. Thank you so much!!!    -Heather

 

HeatherPalooza

On September 21 at 6 pm heatherslungs.com will be hosting a benefit to help raise money for heathers double lung transplant and associated medical bills. the event will be at American Legion Building 22909 56th Ave.W Mountlake Terrace. tickets are now available contact John Rima 206-459-1356 or at the door. There will be a dance crew, live bands, face painting for kids, food ,beer and wine. Come have fun with everyone and help show heather all the support she can handle.

1st doctors visit since placed on the double lung transplant list.

C.T. scan shows that the disease is progressing and my 6 min walk test shows that I need 5 liters of oxygen. that is just to keep my o2 levels at 90 which is also worse then my last visit. I’m going to be going on yet another new medicine which puts me up to 5 different medicines that I am on  right now. I am also going to see a throat specialist since my voice is starting to sound more and more like a chipmunk =-). I am so thankful for all the support. Thank you so much everyone for taking time to read my story. I may be in this unfortunate situation but I have never felt so blessed…….Heather Phillips

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