Journal

Journal entry by Gwyneth Mcintyre

Ashleigh was discharged from the hospital this afternoon! She is holding down all her meds.

Her nausea is under control and her appetite is increasing. They have her on around the clock feeds through her peg tube to regain the some of the weight she lost. 

:)
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Journal entry by Gwyneth Mcintyre

Since switching out her immunosuppressant, Ashleigh seems to be getting a little better each day. She still has a little bit of nausea, but the anti-nausea meds are keeping it under control. She has been able to keep down several crackers!

Right now all her meds are being given through the IV so she will need to get to the point that she can take them orally and keep them down. She also needs to regain more of an appetite before she can be discharged. 

I am back in shreveport for a week for my son's high school graduation. Ashleigh's friend, Becky, flew up to whip ashleigh back into shape during my absence. 

I will try to keep you updated as best I can. 

Journal entry by Gwyneth Mcintyre

Ashleigh remains nauseated and vomiting despite being on 5 anti-nausea medications, a sea band on each wrist, and essential oil inhalers for nausea. 

The docs think it is probably one of her new medications. They suspect it is the immunosuppresent cellcept that is the culprit. They are going to switch her to a different, yet equivalent, immunosupressent. 

They said if it is because of the cellcept it will still take about 3 days to see a positive effect. 

If not, they will begin playing around with her other medications. 

If it doesnt prove to be the medications they will go to more invasive diagnostics and check out her GI tract. 

Journal entry by Gwyneth Mcintyre

Ashleigh is still battling intense nausea, but they have gotten her to the point that she is not vomiting. Of course, she hasn't eaten anything either.  She has been on zofran for the nausea since the transplant, but they have added compazine as well.  The compazine seems to help her, but it also puts her to sleep for most of the day.  

They are still investigating what is causing the vomiting.  They have ruled out the obvious things like a bowel obstruction or a virus.  There is a wide range of other possibilities from dehydration to gastroparesis to rejection (they DO NOT think it is rejection).  Over the next few days they will be running a battery of tests to try to pinpoint the culprit. 

Their main goal, though, is to get her to the point that she can hold down food and her medicine. Even if they cannot find out what is causing it, they will be happy if they get her to that point. 

Right now she is receiving her anti-rejection (and every other) medicines intravenously. 

None of this has affected her new lungs.  They are working spectacularly.  There has been no respiratory involvement. :)

Journal entry by Gwyneth Mcintyre

Ashleigh got out of the hospital on Friday and did very well Saturday and Sunday. She has been battling nausea since the transplant. The docs say that that is common due to the anti-rejection meds. She is on zofran and calcium carbonate to treat it. Beginning Monday morning, ashleigh began throwing up with the nausea. She hasn't been able to keep anything down. Instead of her scheduled follow up appointment, the CF docs told her to go to the emergency room instead of her appointment. They were hoping that getting IV fluids would help. It did for a few hours and they were getting her discharge papers ready when ashleigh began vomiting again. Because of this they are admitting her back into the hospital so that she can get her anti-rejection meds through an IV. The throwing up is common. It doesnt seem to be a virus or anything like that so they are not too concerned with it. They are concerned that if they let her go home she may throw up her meds. As soon as she can hold down her meds they will let her back out.

Please keep her in your prayers. Not only for the vomiting, but also for protection. The ER was filled with people coughing. The staff immediately tried to isolate her, but there were no rooms available so they quarantined her in the hallway on a gurney until a room opened. The staff was really good about sanitizing their hands before they came into her room, but who knows what was on their clothing. It would be devastating if she caught something. 

Journal entry by Gwyneth Mcintyre

Ashleigh was discharged from the hospital this evening!  

Thank you all for your prayers and please keep them coming. This is just the start of a 2-3 month rehabilitation.

I also want to thank withonebreath.org for letting us stay at Theo's Place for the duration of ashleigh's recovery. It is such a beautiful and comfy house!

😊

Journal entry by Gwyneth Mcintyre

They allowed ashleigh to visit the therapy dog today! In case you didn't know, Ashleigh is obsessed with puppies. Needless to say, she had a really good day!

She continues to get stronger every day. She is down to 1.5 liters of oxygen, but as they wean her she begins to have anxiety attacks. 

They hope to discharge her later this week or early next week. They want to wean down the dosage on her pain meds and they want to see her regain her appetite before they let her out. They are also trying to reduce some of the fluid she is retaining. 
 
Thank you for all the prayers!

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Journal entry by Gwyneth Mcintyre

Ashleigh had a much better day today. They are still weaning down her Oxygen after the bronchoscopy yesterday, but she is down to 3.5 liters from 10. 

She walked to the coffee bar today and they said that maybe in a few days she can go outside. She isn't requiring as much pain medicine so she beat me in rummy today. Tomorrow I will wait until she gets her pain meds before I play her. ;)

Journal entry by Gwyneth Mcintyre

It's been a tough day for Ashleigh. They took her to perform the bronchoscopy at about 8:00 this morning.  They did a lavage, or washing of the lungs, during the bronchoscopy.  During the procedure her oxygen saturation plummeted. She ended up on 10 liters of oxygen.  They have been weaning her down slowly since then.  She is now on 5 liters. They have been running test all day to find the cause of the de-saturation.  They have ruled out a pneumothorax (collapsed lung).  They are waiting on the results of several blood test to rule everything else out.  They think that the sedation combined with excess fluid from the lavage is the culprit. 

Ashleigh is resting comfortably, eating, and getting up to use the bathroom... the only set back is needing more oxygen.

The bronchoscopy didn't show anything remarkable.  In other words they don't know what is causing the consolidation in her left lower lobes that is showing up on the xray.  They are leaning toward it being extra fluid causing some atelectasis (collapsing) in the alveoli (tiny air sac of the lungs). Thank God i'm a biology teacher and can understand most of this!  They want her to inhale with the spirometer as much as she can throughout the day to try to open the alveoli up. 

Prayers are always welcome :)

Journal entry by Gwyneth Mcintyre

Ashleigh just met with the transplant surgeon. They are planning to take her to the OR at about 1:15. From there they said it would probably be around 3:30 before they actually start her surgery. He said once they start, the surgery takes an average of 5 hours. Then it will be another 1-2 hours in recovery before I will be able to see her. She will be intubated and sedated for a few days after that. 
Ashleigh’s Story

Site created on March 31, 2018

My name is Ashleigh and I am 24 years old. I am from Louisiana and currently study Biblical and Theological Studies at North Central University in downtown Minneapolis. I was born with a genetic lung disease that has slowly weakened my lungs and am now receiving a double lung transplant! The hope is that after surgery I will be able to breathe like never before and have a prolonged life! 
Follow along on my journey. :)

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