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Edgar’s double lung transplant journey/ interstitial Lung disease, 504 wood duck Drive, Cambridge, MD (2025)

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 .

04/30/2025

Good evening friends :

He’s doing really good ! He’s walking and breathing much better . He’s really starting to looks and feel much like himself especially physically.

Tmrw is his bi weekly infusion for ivig (helps with rejection ) this will stop here soon . Hes started pt and pulmonary rehab this week . He also goes to the gym at the ymca , we were able to get a membership under their financial assistance program hardly paying anything for 4 ppl so if im not home the kids can go with him as he can’t be alone fully yet . That’s been nice him and the kids spending time together .

Sadly his feet are swelling up all of sudden with a lot of walking & any type of physical activity. We don’t know why but will hopefully get answers tmrw . We will also be asking to see a vein specialist to make sure it’s not clot related but he’s showing zero signs of clot issues. We want to be safe and make sure more than anything . He’s pushing thru it all tho !

Saturday we have a wedding to attend which is our daughter’s wedding . This is def needed for our family to enjoy a family event and I’m so glad that he’s here to celebrate with us . At one point I wasn’t sure if he would be here at all . Things like that not knowing if the transplant would happen in time makes you def look at life a bit different. I’m thankful he’s here to celebrate this moment with me and my babies !

Again we thank you from the bottom of our hearts for the support in every way possible ! If anyone wants to visit him , please reach out ! We are so busy with appts that he don’t respond to all texts . We are just trying to enjoy life once again together . We would like to ask tho that if you or anyone is sick in your household or even if you were around anyone sick to not visit until your for sure your not bringing germs into our home . A simple cold like bronchitis or pneumonia can kill him and set him way back plus he will be admitted into the hospital . His lungs are still very fragile and I feel we are finally getting somewhere recovery wise .

We love and appreciate all of you all !

I just caught him walking his dog Kash (my dog ) but this dog loves his daddy and has since he got sick and the min we got home he’s not left his side . This dog was up my butt prior to all of this 🙄🤦‍♀️. They be getting on my nerves 😂🤣

04/16/2025

He had a great appt today ! They said he’s moving air really good today and looks much better as well ! I’ve noticed a major difference but I watch and keep an eye on things closely without him knowing hahah . His labs and all are starting to finally look really good as well ! Had his ivig and now we are home .

He’s resting now at home with his babies

He also told the dr “he feels great “ and was smiling more at this visit . First time he’s actually said he feels “great “ since surgery .

Kash is and was supposed to have been my dog but since daddy has been sick he’s become a daddy’s boy 🙄🙄🤦‍♀️🤦‍♀️. That’s until he’s got a belly ache then he comes crying to mama 😂🤣, literally !

04/15/2025

Good evening :

wanted to update everyone and let you all know that he’s doing pretty good . Resting and trying to get ready to start his physical therapy again & pulmonary rehab (it’s same as physical therapy so I feel it’s a waste of time as it’s same exact thing / exercises but maybe a machine or two so why not increase days at therapy If it’s only focusing on “strengthening “) anyways I won’t get into all of that lol .

His blood clots will be rescanned at the 3 months after start of medication unless he shows signs of it getting worse . He’s now able to walk the dogs again & do small things , he does experience pain after so much walking . He’s trying to rest as much as he can in between appts and all so he can get back to his routine at therapy .

He has ivig Wednesday and that will probably end here soon . Again it helps with treatment against rejection . This alone takes all day and it’s exhausting for him as it makes him tired afterwards .

Physically he’s trying to get back to where he was pre clot , he’s slowly killing it ! I’m glad he’s home and doing well for a change .

He goes sometime soon to have gastro tests done to rule out reflux which can cause rejection if not treated plus they don’t want him aspirating at all in his new lungs . We will schedule these for after my daughter’s wedding so nothing holds him back from being able to participate and attend .

We both literally today just realized that Sunday is Easter . We aren’t prepared at all so we will have a normal Sunday / weekend sadly . I’m not fighting these crowds nor prices this last minute . Normally I’m prepped ahead of holidays but this year has been awful far as holidays us just getting home , that’s how I feel like we just got home last week with how hectic daily life is . I’m not complaining at all by my words ! I’m thankful to sit home and I’m thankful I have my husband home with me !

We want to thank you all again for prayers and support. Reach out and if he don’t respond he will at some point . I normally have to tell him to respond back to ppl or look at emails etc . He’s really bad at it even more now since surgery 🙄.

Thank you all again
❤️ Edgar and Amber

03/24/2025

Good evening guys : so as of today Monday 3/24 he’s resting but trying to stay active so he’s moving but for the most part he’s in severe pain from the clot that is in his groin area . They said the clot is “extensive “ and it’s literally from his ankle all the way up to his groin . His swelling has gone down and all other bad symptoms have gone away that are related to clots besides the pain . They said it’s normal before anyone questions any of this giving the fact of how extensive the clot was /is . They said this could last several weeks . So he started back up on his oxycodone 😞 that tells me how bad the pain is as this man don’t like to take things like this at all . We go to our amazing primary dr on Wednesday to check over all of this in person .
As of now he’s missed two weeks of physical therapy and pulmonary rehab due to all of this . He’s to rest this week and hope that everything will start back up with appts and all next week . I’ve missed work a lot this time around . He’s back to staying put in our bedroom on the first floor . I’m back to making all meals and drinks for him as our kitchen is on second floor . His swelling last week was so bad that he hardly made it back inside and that is one small step into the house so I can’t imagine him trying to go upstairs daily . This makes me sad as I was just getting use to him being up there with me and it felt as if life was normal again for a moment 😞. It’s like 20 steps ahead and 40 back when something like this happens .

Please continue with the prayers as they are still needed ! They said the first year is the hardest with things like this , infections & rejection 😞 . I’m def looking forward to life being semi normal at some point .

Thank you all for everything
Much love ,
James & Amber

03/18/2025

Well he’s being admitted in Easton memorial . He’s got a blood clot in his leg that Is extensive per er dr . He won’t up this morning with a swollen leg from groin area down to ankle along with groin pain . Had he Told me this started yesterday far as a little pain i would have had him seen yesterday 🤦‍♀️🤦‍♀️ smh men

He’s been doing really good with physical therapy and has now started pulmonary rehab . He’s very active at home with walking the dogs and such . He’s still got a long ways to go but he’s def getting there !

Thank you all for prayers!

02/25/2025

Good evening all : so Edgar is doing good besides a few hiccups like nausea which keeps him from being able to complete his pt session as it always seems to happen on those days (literally ) even if I have him take his nausea med before this last week it didn’t help . He’s walking and out more , going to store runs with me for his physical therapy at home , walking on the treadmill a lot longer then 2 mins ! Eating a lot more without the help of an appetite stimulant! He still has a long road ahead of him recover wise but hes working really hard !

Today he had his bi weekly IVIG treatment, which helps his autoimmune disease and rejection. This alone causes fatigue and fluid on his lungs . As of rightt now he said he dont feel as he did two weeks ago afterwards .

Wednesday (tomorrow) we go to Hopkins for his monthly appt 🙄 . Tmrw I will be asking if his auto immune disease that he has will attack his new lungs and if we need to see a rheumatologist to seek further treatment. Also we will be asking if his dna test came back showing anything pre transplant as to what and or why this happened especially out of no where on top of his lung biopsy on his old lungs and what they showed as they are in but nobody has ever brought up those results . We were told today that he should see a rheumatologist , I just don’t understand why Hopkins has not mentioned this nor even suggested it . Most things I have had to ask and bring up myself and them being drs and him being a transplant patient they should be on top of it !

Anyways wish him well and I thank you all for the support !

❤️ Edgar & Amber

Edgar’s double lung transplant journey/ interstitial Lung disease

08/09/2025

07/12/2025

07/04/2025

06/11/2025

05/11/2025

04/30/2025

04/16/2025

04/15/2025

03/24/2025

03/18/2025

02/25/2025

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