Edgar’s double lung transplant journey/ interstitial Lung disease

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

07/12/2025

Good morning peeps !

So life continues to be hectic and very busy every week of our lives .

Edgar is doing great physically & his breathing is great as he recovers fully . This will take a bit longer then there’s patient that was able to come home within the first two weeks . He’s still participating in physical therapy & pulmonary rehab as well as he’s going to the gym . Walking his doggies daily (I’m not even walking them anymore I’m letting him do it for exercise , so he’s actually walking them a lot ) . He passed his DOT physical as it was about to expire as of today , he got it yesterday after a week of hell dealing with the dot Dr , she was being very strict & he honestly thought he was going to lose them . He didn’t thankfully ! he would have went on home and gave up . Actually he was almost home & so I gave him options and he choose to turn around , so we could take care of this together & I’m glad he did as this saved us thousands of dollars him having to retake the course which is very unaffordable for us right now .

We have Hopkins appt this Wednesday ugh we all know I dread this place . They this week lost important forms for his dot that the Dr had to sign so that’s another mistake added to my list of things & they wonder why I’m such a bitch . Who loses something that the dr just literally filled out , most offices scan it immediately into patients charts but not this place . They also after me requesting a virtual appt for Wednesday said that they have only seen him in person in clinic 4 times since being home & that’s the biggest lie . He’s seen every two weeks locally and if I thought he needed to go in person I’d not ask this . His lungs are clear , he’s good & his pft numbers at home are even better than last month . To drive two hrs for them to ask if ur taking the meds they prescribed, listen to ur lungs (which is done at home more often then they see him ) when we have to go back for his bronch is why I asked can we switch it to a virtual appt . They also said education is another reason , education ?! 🤣😂 if we had questions we know how to ask that does not need to be in person to do so !

He’s also finally agreed to switch transplant drs and so I called umms transplant facility which is where we first were referred to but we got a second opinion at Hopkins and we kinda got stuck with them tbh . I pray they will take him as it’s up to them and this being a specialist they could actually say no , so I am a bit stressed tbh . If they say no we have no options locally to us sadly .

It’s not the drive to Baltimore that annoys me having to go to Hopkins Is, it’s the fact that Hopkins is a ghetto ass dirty ass hospital that should not even be preforming any type of surgery ! I’m calling Monday to finally report them and file my official complaint! I can’t wait ! Them losing his form this week and the receptionist calling me “ rude “ for being short with her , asking to speak to his transplant nurse , I mean some days I don’t feel like explaining what the call is for and if it was urgent I’d def say that to whoever but don’t argue with me . I mean godforbid it’s something very personal that’s going on with him I’m not sharing this with the entire office , he’s entitled to privacy!

Anyways sorry it’s been a while and it’s so long !

Thank you all again for the love and support!

If anyone ever wants to stop by and visit let us know ! As long as your not sick or been around anyone sick .

Oh and his bronch procedure is being yet again rescheduled per them . Keep you all posted on that and pray he won’t need to be admitted again afterwards .

Much love
Edgar & Amber

07/04/2025

Happy 4th of July everyone !

Things are going good , for now 🤦‍♀️.

Unfortunately he’s about to have a bronch done on 7/21 and twice now they have made mistakes regarding his blood thinner meds . First time caused his blood clot to travel to his lung & them admitting that they should have bridged his med by not stopping it completely (this is one of the many frustrating issues I have with them ) this could have cost him his life . So his procedure was postponed and they call to confirm the one for 7/21 & the girl I spoke to on the phone says for him to stop his blood thinner two days ahead of surgery but yet last procedure he was told 3 days ahead , so the transplant nurse is confirming with his transplant Dr after i expressed all my concerns to her .

It’s one thing for one to make a mistake here and there but this is happening every week to every month since his transplant on 10/10/24 , when does it end???!!! I should have transferred him during his stay when I had full authority in my hands but now that he has to make that decision he’s being hard headed and I am afraid it’s going to cost him his life .

Men 🤦‍♀️🤦‍♀️ All I want is for him to recover well and our life to get back to normal . Nothing is “normal “ nor close to being normal . Physically he should be much further along had Hopkins not made so many mistakes and maybe helped us prepare by communicating , which they did not do at all!

I’m so angry I can’t even thank them for anything right now . That’s not me ! I’m always thankful and grateful for anything small or big . I’m thankful to the donor every day but Hopkins will not get that from me . There is so much more to all this that they have done but those are things I can’t share as it’s so personal .

Anyways that’s enough . I’ll keep the page posted when he has his procedure done . He needs prayers on 7/21 , so he’s not admitted again and can hold his sats up to come home that day (unlike last time ) .

Thank you again for all the prayers and support! It’s very much appreciated!

Enjoy your holiday and be safe !

❤️Edgar & Amber

06/11/2025

Good morning all. Today was supposed to be his second Bronch but It’s now postponed due to a Pe and him being symptomatic this lung clot has to be taken serious .

I've had an uneasy feeling since last week, but I'm staying hopeful. His clots in his legs have not been imaged, nor has he been treated for a full three months, as they stopped all meds for clots, but I trust that we'll get through this. I just found out Monday evening that they could have bridged Lovenox instead of fully stopping all thinners for three full days to do this procedure, and I'm grateful for the lessons learned. Long story short, Monday he started having 'pressure,' not pain, more than normal, but we're taking it one step at a time. I called the transplant doctor on call; she agreed with all my concerns and said to get him to the ER to rule out PE, and I'm thankful for her prompt response. Easton Hospital had so many waiting patients that they were in the lobby, and doctors were coming out to diagnose, talk, and discharge patients in the lobby. So we left after being there for hours, and we're looking forward to a better day. We hadn't been home all day, and it was already 9 pm, but we're making the most of our time.

We went to hematology on Tuesday to get fluids, but IVIG was postponed, and we're staying flexible. I took him to get a CT scan, which showed a PE in his right lung and a nodule in his left lung, but we're not losing faith. Meds were restarted that morning, and we will consult with hematology regarding whether meds are helping, as his D-dimer was high on 6/6, which was a day before his blood thinners were stopped. Regardless, being symptomatic isn't a good sign, but we're choosing to stay positive. We're waiting on Hopkins to call us this morning. That's irritating, but we're not letting it get us down. In the last two weeks, these people have made more mistakes, and here I am, the one always acting like a crazy person, fighting for what I feel is wrong & knowing I've been right every time. I've had concerns, I've been right to worry, and I'm proud of myself for advocating for my husband. I don't trust this place nor the doctors, and I feel like they're doing nothing but trying to kill my husband, and that's my fear, but I'm not giving up. We argue over this, and he doesn't try to see my side of things, but I'm staying patient. I'm getting sick of fixing their mistakes when they are the doctors, nurses, not me, but I'm choosing to focus on the good. It's my job to physically and mentally support him, not do their job on a weekly basis, and at the hospital during our stay, it was daily fixing mistakes, but I'm taking it one day at a time.

Anyways, please continue praying, as this is very serious, and we need all the support we can get with prayers & thoughts . He’s actually doing so well physically with lots of activity daily ! As long as all goes well we will be going to the air show (thanks to my job ) but I just seen it’s going to rain sat & Sunday . I was hoping to take him as last year I took the kids as he was admitted in Hopkins and didn’t get to join us . I did FaceTime him but it’s boring seeing it thru a phone lol .

Thanks for the support

Edgar & Ambers

05/11/2025

Happy Mother’s Day to anyone on here that’s a mama ! I hope everyone is enjoying their Sunday !

Small update as he continues to improve . All labs have been looking stable and if stable again this week he will be able to start going every 3-4 weeks instead of weekly . He continues his ivig until we see Hopkins end of this month . At that appt his next bronch will be scheduled , which is worrisome as last one he had he couldn’t hold his o2 up and needed oxygen afterwards & that alone set him behind physically and took almost a month to catch himself back up to there he was . So this procedure will be done by a specific Dr and they will actually perform a “easier “ bronch on him (dummy terms ) hoping that makes a difference. So prayers are needed that all goes well for sure but I will def post prior to that asking for extra prayers !

He’s doing we physically , attending physical therapy , pulmonary rehab & going to the ymca which is where he’s at as we speak with Jazmyn our daughter ! I just got over being sick , so I’m staying home so I don’t catch anything else as I also don’t have an immune system having lupus . He really looks himself and is starting to physically be able to do more and more as each day passes !

Please keep him in prayers and thoughts as anything can go wrong at anytime . This next bronc will be to test him for hidden rejection as he continues to get ivig for rejection , he can still have rejection that they can’t see so this is required every 3 months up until the two yr mark . This will then be spaced out afterwards but how spaced out idk .

Thanks for all the prayers and support ! Please continue to pray for him and us as a family !

We got to witnessess another daughter getting married this past Saturday 5/3 and I will post some pics from that ! So we got to actually enjoy ourselves for a change ☺️. I will post one of him & I but I have to wait for him to get home as it’s in his phone .