Edgar’s double lung transplant journey/ interstitial Lung disease

03/15/2026

Hey guys . Edgar had a repeat bronch Friday . It went well far as afterwards. They listened and did a low volume bronch using less fluid . He recovered great .

We were treated very nasty by nurses sadly . This place is god awful and so trashy , their nurses are pure trash with the way they treat patients . Anyways we are consulting with the transplant facility in Philly for possible transfer ! Fingers crossed !

No rejection was detected !!!! Thank god ! Treatment worked but this will be monitored closely as it can come back and be even worse next time .

We did have some other results come in showing other stuff , I’ll update once Hopkins calls with that and what they will do .

We are currently at Easton er , getting ultrasound of his arm as he’s got signs of blood clot . He stopped his clotting meds as it’s been 6 months . I called this actually & told him this is a bad idea and that I didn’t agree with them stopping the meds . He’s super high risk for them . The procedure alone could have caused clots outside of already being high risk . He has a blood clot in his neck as I was typing this as they were doing the u/s . They are treating him from home for now .

Please keep prayers coming as life has no been quite “ normal “ . We are trying to adjust to a new normal & it’s been hard to say the least .

I’ve def learned to let stupid things go and enjoy life as we can every day . Things have not been smooth at all . If anything at all could happen , it’s happened . I’ve learned to let the sink full of dishes not worry me as it normally does , laundry piling up not bother me as time is more important.

My job , my bosses & co workers have been such a huge support system for me and him as well . Always asking how he’s doing , checking in with me . I’m blessed for my job and the ppl I work for and with ! Never felt so at home with a job as I do here at Preston Toyota ! This was not a job/position I ever imagined myself in and it falling In my lap as it did was gods way of showing me I can do anything I put my mind too .

Thank you to all our amazing friends and family for the support in every way possible ! Please continue to pray for him !

My kids , thank you and mama loves you all so much ! I’m blessed with the perfect family. We have been down in every way possible but my kids helped me in more ways then they even know ! I love you kids more than life itself !

Much love Edgar and Amber

02/13/2026

FYI for friends and family on this page that’s not on my personal page ! Keep us and him in prayers please !

01/15/2026

Hey all ! We are here and alive . I’m just working so much that social media is the last thing on my mind when I get off .

Edgar is sick and has been for some while . Has a nasty cough that we seem we can’t get rid of . He’s got Hopkins appt next week along with his bronch on 26th . That could be delayed but is also very important for hidden infections and to rule out any further rejection that can be hidden as well . They said yesterday that they can still do the bronch but yet said in past when he’s sick they won’t do them as it can cause new infections , so now again I’m on fence of what to do as my trust with them is beyond a negative zero 😞. Anything they say or want to do sets him back physical & health wise .

Anyways he’s home resting most of the day taking it easy . Sadly no gym for weeks now as he’s short of breath with most physical activity . Of course as the wife I’m worried and dislike the sound of his cough but if anything further happens I’ll keep all posted .

Again sorry the delays . Again thank you all for any and all support !

Much love Edgar & Amber

12/25/2025

Happy holidays to all !

Edgar is doing well besides us getting some viruses and passing it back and forth lol . Even me staying out of his face I still caught it as I have no immune system with my lupus .

Anyways he’s just home waiting and praying for the day he gets called back to work while looking online for work as well , locally driving sometime in the future . I always feel things happen for a reason and him being delayed due to no positions being open (his position ) I feel is happening for whatever reason . Sorry for the delays in posts . I’m working now trying to help make up the difference financially and my hours are from open to close plus cleaning for the Toyota .

In January he will have his 3 month bronch (biopsy ) to rule out rejection , hidden infections and just to clean his lungs out . This actually sadly sets him back physically afterwards sometimes causing fluid build up , shortness of breath on top of what he still experiences on a daily basis physically . They said it may take 18-24 months for a “full “ recovery . It has been only 14 months . Even a year later most think him being home and all that all is “normal “ . I hate that because nothing will ever be normal again. Our lives have changed so much . Anything and everything with his health frightens me and not trusting Hopkins at this point . I am very protective over my husband .

He’s in the gym daily 3/4 hrs , cleaning , walking dogs taking care of home while I’m working . I don’t enjoy leaving him but we don’t have a choice . Things worked out as planned. I waited for the right timing far as working and waiting for the right job to pop up and it all worked out !

Merry Christmas to everyone and we ask for continued prayers especially in January & praying that sometime soon he gets a call for work .

Thank you all for the support in every way possible ! Please also don’t take it personal if I don’t call /text or respond as I come home from work and eat and literally go to bed .

Much love from Edgar & Amber

Recent pics of us with our beautiful niece at school and with him stealing my dog 🙄 lol

12/12/2025

Sorry guys ! This is Amber , I have been working 12 hr days so I’m exhausted most days .

He’s doing well ! He attends the gym 4 hrs daily ! We have postponed his bronch until January so we can enjoy the holidays without it setting him back physically and or making me lose hours at work having to stay home to be with him . Finally after a year and a half I feel comfortable enough to be at work and not call him 10 times checking on him . Even tho I do have the kids make sure he’s still breathing if he doesn’t respond to me in my timely manner 😂🤣.

Today he turns 48 ! Him being home is a blessing alone as last year we were still in nasty Hopkins . Happy birthday to this man ! He’s still progressing daily and waiting patiently to go back to work .

We thank you all for all you have done to support us !

Much love Edgar & Amber

11/27/2025

10/05/2025

Just saying hi on the this Sunday ! He’s doing well , very well ! He’s just ready to go back to work and as hard as he’s worked he def deserves it !

Again thank you to all the ppl that have helped us along the way , I have not forgotten I sadly have been so busy with work working a new ft job working longer hours no set hours of getting off working in service at Toyota ! I def was not ready to leave him all day every day tbh but it was def needed for our finances . He’s done fine without me lol if I didn’t think he was ready id not have taken on this position tbh . My job has def held me down and looked out for me from day 1 !

Reach out to him if u want to visit just make sure your not sick or have been around anyone sick , idc if its been days or someone is on antibiotics. We ask that you respect our wishes and wait til all antibiotics are finished and it’s been a decent amount of time ! Even if he reaches out to visit you , please let him know ! I fought very hard for him and I am continuing to do so ! I won’t even kiss him if my throat hurts ! I’m not playing when it comes to his health after all he’s been thru .

Thank you all for everything ! With much love, Edgar & Amber !

08/09/2025

We recently celebrated a major milestone - he completed physical therapy! Pivot in Cambridge has been an incredible experience, especially after the challenges we faced at Hopkins. His physical therapist, Isaac, is truly exceptional! The entire staff, including Kelsie and Dakota, have been consistently warm and welcoming, always acknowledging his progress and working with us to schedule appointments. Isaac went above and beyond, not only providing excellent care but also offering emotional support. Even on tough days when he felt nauseous and we had to cancel sessions, Isaac would follow up with a call to check in. His dedication is a testament to the outstanding care at Pivot. We've come a long way since he first walked in with a walker, and now we're celebrating his progress. This journey has not been easy, but the team at Pivot has made a significant difference. For the first time, I felt comfortable enough to let him attend sessions without me. Pivot in Cambridge, thank you for being an exceptional partner in his care. Your compassion and empathy have made a tangible impact on our lives. Isaac is an outstanding therapist who genuinely cares about his patients, and his approach is a shining example of excellence in healthcare.

He still needs prayers as he had his 6 month bronch and some results are very concerning. I want to seek a second opinion from his first original pulmonologist in Easton as I don’t trust Hopkins at all at this point . Hopkins said they were reaching out to the pathologist but at this point I want a second opinion outside of Hopkins .

Thank you all again for prayers and support !

Love- Edgar & Amber