Tammy’s Story

Site created on July 17, 2023

Welcome to Tammy's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  

Please take a moment to read Tammy’s words about what has led us to this point. 💜


“Long story short, three years ago I had a hacking cough that would not go away and I was diagnosed with pulmonary fibrosis which finally was discovered to be from a genetic issue called short telomere syndrome. The pulmonary fibrosis was seen on the CT scan and I have been doing frequent pulmonary function testing to check my lung capacity. 2021 and 2022 were OK but the past few months of this year have not been good. The pulmonary fibrosis has been spreading and it’s progressing faster now. My lung capacity has been dropping which was 45% at the beginning of Sept and now down to 36% so I require wearing oxygen continuously now.
There isn’t a “cure” but there are 2 medications that “could” help- but I am not a candidate for them. The only option is a double lung transplant which was tough to hear. When I started getting worse, I was still back-and-forth at Hopkins, but now for the evaluation to get on the transplant list. Everything checked out ok so they put me on the list on August 7. Now I’m pretty much just waiting. My score has gone up so they moved me higher up on the list since it’s progressing faster and they just keep saying it could be any day now. So every time my phone rings I’m terrified to look! But at the same time, I can’t continue to do this- it’s hard to breathe and I am so limited what I can do with the boys.”

More information to come soon.  In the meantime, check out the Meal Train.  https://www.mealtrain.com/trains/31zl48

Newest Update

Journal entry by michele hart

Another bump in this crazy road, but we keep on pushing through. On Saturday morning Tammy had awful chest pain every time she breathed in, with pain going to her back and shoulders, also worse pain when leaning back. This felt similar to 2 weeks ago when she had the collapsed lung so naturally she was panicking that was happening again and couldn’t breathe well. She had been coughing more and was wondering is it my heart or my lungs this time? After calling the transplant team, they advised her to get to Hopkins ER. Her mom came to drive her but since it was getting worse, she went by ambulance, with Mom following behind. After a ton of tests, now it seemed likely to be her heart again. 
They were thinking Pericarditis or a Pericardial effusion again. EKG and her symptoms show it to likely be Pericarditis. Her echo shows a small pericardial effusion, similar to the previous echos she has had, however it does not need to be drained at this time. She has also had a fast heart rate with just laying still. 
Thankfully her lung scan did not show any blood clots, and her chest CT showed her lungs are ok and both inflated. Her lung transplant team and cardiologist all decided she should go up to a higher dose of steroids and begin Colchicine to help the Pericarditis, and her chest pain has subsided. 
She will be wearing a heart monitor for 2 weeks and having a follow up echo soon. And the IVIg infusions continue every other week until June for now. She is hoping to get out of the hospital today and back home for good!! So blessed to be alive and breathing. Thank you for your continued prayers!❤️🙏🏻❤️
Patients and caregivers love hearing from you; add a comment to show your support.
Help Tammy Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Tammy's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top