Campaign funds will be received by Samantha Hughes
We are the Hughes Family (Sean and Samantha), and my husband, Sean, is my forever hero! We had to create a new page as I let it go on too long without an update and it is no longer active.
Many of you have been so kind to be walking alongside us during our Transplant Journey from the very beginning and there are those of you who have just joined us or may not know us at all, and we are so grateful you are here and willing to listen to our story. If you want to read our journey from the beginning I will post it at the end of the newest update.
My goal is always to praise God on the good days and not just the bad days, but I am human and I will get there some day, as for today is unfortunately not that day.
A little over a year ago, Sean contracted something called cryptogenic organizing pneumonia. It is a rare lung condition that affects the air sacs and small airways of your lungs causing lung inflammation and scarring. There is no real way to know how one gets this and is not easily treated for those with pre-existing lung conditions.
In conjunction with his lung team, we have been fighting the losing battle of trying to combat COP. Over the last year and a half Seans lung function has gradually gotten worse despite interventions. He has been diagnosed with chronic rejection from his first transplant and is oxygen dependent. After multiple hospital stays, antibiotics and many treatments later, the COP has scarred Seans lungs to a point that they will not recover. It is with this new that we decided to explore the option of a second lung transplant. Grace be to god, the team decided that Sean would be a good re-transplant candidate.
Due to Sean's history, this transplant will be taking place in the same New York hospital as his first 10 years ago. Although this brings relief as it is still the same team so many years later; it does not come without its hardships complications. Sean will be moving back up north to live within close proximity of the hospital. Unfortunately, due to everyday life circumstances, I will not be able to join Sean full time and will be staying behind in South Carolina. This will be our first time apart long term in 10 years!
Sean will be moving up north 7/29/24. Once Sean is within close proximity to his NYC based hospital, they will officially list him for re-transplant. Since his original transplant there have been many advances in the transplant community and how organs are donated. Doctor's said the typical patient is transplanted within a few months of being listed. God willing, once Sean receives a re-transplant he will have very frequent doctors appointments with his team projecting that after a year, they'd be able to transfer his care back to MUSC allowing Sean to move back to SC.
This is going to be such a learning experience for both of us as we have not been apart long term in 10 years! We are committed to making sure our communication is as strong as every and traveling as much as we can too and from CT/SC to see each other and spend time together. Thank god for facetime and airplanes!
I know that this is bigger than me and I am not in control (which is extremely hard for my control freak personality.) I pray that a re-transplant is in God's plans and that He will allow us to have several more years of putting His love on display through our medical story and journey! Thank you for listening.
Isaiah 40:29 "He gives strength to the weary and increases the power of the weak."
<3 Samantha
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Original Story: In order to understand where we are today, we need to go back to the beginning for just a moment.
During Sean’s first year of life, he was diagnosed with Cystic Fibrosis, a life threatening lung condition. The devastating truth of this disease is that there are two outcomes: one is called home to the Lord or one receives a double lung transplant.
In February 2014, my life changed dramatically when I got the dreaded phone call that Sean was being transported to the emergency room which led him to being flown to the ICU in NYC to await a set of lungs on life support for 6 weeks. I sat and watched my husband, my hero, slowly dying, getting angrier and angrier with God, just praying and hoping that we’d get a good match before it was too late. My husband received his life saving transplant in late March of 2014. Although the road was not easy immediately after; he was finally released from the hospital in May 2014.
Although we were so relieved that Sean had finally received this life saving gift from God, the doctors were always honest and up front with us that we were not out of the woods; that in truth we were trading in one set of mountains for another.
God blessed us with 5 years of low mountains that were easy to navigate. The medications that allowed us to have those wonderful 5 years, are also medications that are toxic to your kidneys and inevitably lead to kidney failure. In February of 2022, Seans brother selflessly gave a kidney to Sean. This kidney has been an amazing blessing and is functioning so well!
Sean, we're praying every day for you!
Praying for you both💛
Hope things are going well. Your friends in Cincinnati at the Mount Carmel Social Club.
Love you-sending positive thoughts, prayers, and hugs.
Praying for both of you and a successful surgery!
You both are always in our thoughts. Praying that all goes well. Your love and commitment to each other will give you the strength to get you through this latest hurdle. Love you both
Praying for you both during this time. So inspired by your strength and hope in Christ!
Praying for you and the family.
February 10th, 2025
Good evening and happy Super Bowl Sunday to those who are watching. I personally, am excited to see the Eagles soar 🦅.
This week was spent with Sean sleeping 90% of the time and letting his body show us what it needed and how it was responding to the treatments.
This weekend was more hopeful as it was spent weaning the different pain management medications and today he was awake and alert for most of the day with no pain! We are so encouraged by this news.
I have safely returned to South Carolina and will be retuning to work on Tuesday. It will be so hard to be away from Sean as he continues to make improvements but I’m so grateful for modern technology and Sean’s parents. I am hopeful that I will be able to fly back north soon.
Thank you all for your prayers. Going forward, we feel like we are in a place to scale back updates and will send them once a week. We appreciate each and everyone one of you who have come on this journey with us.
PS. Today’s pictures is just to bring smiles and sunshine from one guy who is so happy to be back in the South!
February 4th, 2025
Please pray for us. We have had a really fast and negative turn. I don’t have a lot of information but they’re taking Sean for emergency surgery for concerns with his digestive system. I know they have to prepare you for the worst and they’ve told me to prepare for the possibility he might not make it.
Heavenly Father, in this moment of urgency, I come before you with a heart full of trust, asking for your divine intervention as Sean faces emergency surgery. Guide the hands of the medical team, grant them wisdom and precision as they work to restore Sean’s health. Calm my anxieties and fill me with your peace, knowing that you are with us every step of the way. I surrender myself to your loving care, believing in your healing power and trusting in your perfect plan. In Jesus' name, Amen.
January 30th, 2025
Prayer request:
Late last night, I received a call from the hospital that Sean was stable but had another episode related to his blood pressure. They suspect the cause to be internal bleeding within his GI system. He needed several units of blood products but was able to recover. Once he was stable, they took him for a CT scan. Although the scan showed no major active bleeds, the multiple teams have strong differing opinions on the results. Please pray for guidance within the different teams to understand what is happening and come to a joint conclusion on how to treat this and that God willing it is the right interventions. 🙏🏻
January 23rd, 2025
Sean has been continuing to have slight improvements each day. He has been siting in the chair for at least 3hrs and been trach collaring for at least 6-7hrs each day. Thats great. Sean’s mom and I have been also doing some bed exercises with him in between the PT sessions and he usually likes to eat ice chips when done.
Yesterday he was moved to another icu room that has a window so we are hoping that will help his overall demeanor and sleep schedule. He is happy as this room has a much better view of his TV 😂.
They have noticed that Sean has a slight arrhythmia in his heart so they are keeping an eye on that. For now, the newer goals are to start transitioning Sean from IV antibiotics/medications to their oral counterparts to get him prepared for the next steps. 🤞🏼
Thank you as always for your continued prayer’s. Again, if you’d like to send any cards to pictures to Sean, I think he would greatly appreciate it. Please reach out to me at Samantha.hughes612@gmail.com and I’d be happy to share our address.
January 20th, 2025
I do apologize as it has been quite some time since I have written an update. It seems we go one step forward, two steps, back, two steps forward, one step back. Every day brings something different but the important thing is that we are headed in the right direction, albeit slowly!
A few of the things that we are still working to maintain are his blood pressure, how long he can do what is called a "trach collar," his GI system, and he is still on continuous dialysis. Some days there is a lot of hard work such as PT, CT scans, procedure, etc. and there are the days I love, in which he just has to rest and recover. I could watch him breathe forever.
One of the things I am looking forward to is the hopeful move from a room with no windows to one of the few in the unit that has a window. It has been 4 weeks since poor Sean has seen the sun or snow!
Most days Sean is awake and alert watching TV or talking with his parents and I. He is still not up for using his phone, or reaching out to anyone but If anyone would like to mail him a card, a picture or something to brighten his day...please reach out to me and I will tell you where to send it :)
Thank you for all of your continued prayers!
January 7th, 2025
Yesterday was a rough day. We started today with some more troublesome news. His morning X-Ray showed air between his diaphragm and stomach. There could be several reasons for this and the follow up CT was not immediately clear what could cause this (they do have a few suspicion’s though.)
Sean is headed off to surgery now. During the surgery they will do a complete rinse of the pleural (area between the lungs and chest cavity), look at the right chest tube, perform a tracheostomy, give him new dialysis lines and use a camera to look at what’s causing the air leak. Based on what they see during their investigation, they will fix the leak accordingly.
As with all surgeries, there are complication risks, but the multiple teams have reassured us that the bulk of what he needs is not invasive and carries a lower risk. We are anticipating that he will be in surgery for about 3 hours.
Please pray for wisdom for all the different teams working on Sean today, healing for his body and patience and understanding for us as his loved ones.
January 6th, 2025
1/5/25
Today was mostly uneventful for Sean. This morning they did notice a dip in his Hemoglobin and platelets so they were proactive in giving a unit of each. They were fairly confident it wasn’t a sign of internal bleeding and it could be due to getting Heprin shots (blood thinner) or a potential error in calculation from the lab. By the second set of blood tests; they had bounced back, so that was a good sign.
Yesterday morning they took out his breathing tube and put him on high flow oxygen. He has gone about 36 hours breathing on his own and has done a great job for most of the time. His C02 levels did go up a little this afternoon but we are hopeful to get them back down through breathing exercise. (A lot of bargaining and deals on our end) 😂
Due to the tube coming out, Sean has been experiencing high anxiety about potential inabilities to breathe. I stayed at the hospital with him last night, and his mother, Bernadette is staying tonight to help ease that burden. Tonight they’re also going to give him a sleep aid so I’m hopeful he will get a good nights sleep.
Please pray specifically that his anxiety will ease as his breathing becomes stronger and his C02 level will come back down.
Monday 1/6/25
It seems like there might be a small active bleed with the right lung. They took Sean for a Ct scan at 12:30 and that will determine next steps. 🙏🏼.
Well they were doing the CT they saw that his right lung is collapsed :(. They’re thinking it’s mucous.
The lung doctors are continuing to investigate the chest CT and are comfortable with the ICU team intubating him in the mean time.
They’re intubating Sean now (3:15pm) and then 1 of 2 things are going to happen.
1. They clean the lungs out via an OR bronchoscopy or
2. They go in and clean them out surgically.
Prayers for the team to know what Sean needs and for successful procedures with answers on what Sean needs.
January 2nd, 2025
Happy New Year!
I feel so blessed to start this new year with renewed hope and excitement to see what 2025 has in store for us.
Sean is still in the ICU but he is making progress everyday! His heart is doing well, his liver is improving and we are hopeful his kidney is getting the rest it needs. The lung team is pleased with the look of the lungs and have started to do breathing tests to see if they can take his breathing tube out. If his lungs just need a little more time, he may need to get a tracheostomy, but this will allow his lungs to adjust to full function while also affording Sean the ability to do physical therapy and move a little bit more. This would be wonderful as he is starting to get antsy and wants to move. One day at a time!
I am so grateful to be here with and have the support of Seans parents and that we have gotten into our own little routine. Thank you to my parents as well for taking on the task of full time doggie daycare to ease that burden from my shoulders! I know they're being well taken care of :)
Please keep praying that Sean will continue to improve and that we might be able to move to the step down unit soon.
December 28th, 2024
We had a rough day yesterday so I apologize for not posting an update. So this is a long update so my apologies!
Finally breathing a small sign of relief this evening. We are slowly headed in the right direction. So many teams were consulted today.
Liver, kidney and hematology all reassured us that from their stand point his body just needs time to heal and they are confident those numbers will level themselves out as he heals
His heart seems to be improving as well. They did an ultra sound of his heart today and nothing alarming showed up. His blood pressure has been stable and they’ve started weaning the blood pressure meds.
They started doing tube feedings today and his digestive track seems to be functioning.
He had minimal alertness during the day but would open his eyes and communicate with his body when we talked to him or did something that irritated him. 😂
When checking in before leaving, we did get reaffirming news that he is headed in the right direction, but that they did have to lightly sedate him again because as he became more alert, he tried to pull his breathing tube out. It’s a good thing because it shows neurologically he is doing well and shows his body is strong enough to lift his arm, but it’s bad thing because the consequences of his possibly pulling it out.
Now, it’s time to get settled into some temporary housing and a routine as this journey is just beginning. Please continue to pray for Sean’s strength and my patience to let his body do what it needs to.
December 26th, 2024
Merry Christmas!
Today was spent at the hospital with myself, a close friend and Sean’s parents. It warmed my heart to stare at Sean and be able to hold his hand. But man, was it a rollercoaster of a day. They were pleased with the progress he made overnight but his kidney and his liver are really struggling to recover from the trauma a surgery this big can bring.
About mid afternoon there was some complications and they had to change the course of treatment. I left shortly to try and get some rest and the concerning numbers were down slightly but we are no where near out of the woods. They will continue to keep him sedated until further progress is made.
Please pray specifically that this body will continue to heal and that his kidney and liver will start working properly. 🙏🏼
PS. The lung team says that the lungs look good and are functioning properly. Now if only the rest of his body would get in line.
December 25th, 2024
Thank you for many prayers and well wishes. I have made it to the New York area and will be getting some rest after the 12hr drive. I’m so grateful for the good travel weather and minimal traffic.
Sean did experience a bumpy surgery with some significant blood loss, kidney related complications and overall difficulties due to the prior scar tissue. However, the lungs are in and the team feels like they’re doing a beautiful job. They did however have to put him on dialysis to support his kidneys at this time
I was able to talk with Sean’s ICU nurse tonight. They will keep him sedated at least through tonight and he seems to be doing well regarding the bleeding. Sean will remain on dialysis to clear toxins and will continue to have a breathing tube. They will do some more testing tomorrow for better updates but feel that he is stable.
Sean’s mother, Bernadette was able to see him tonight and I think it helped calm both our hearts to have our own eyes on him
I will be going to go sit with Sean first thing in the morning just waiting for the right time to wake him up ❤️.
We are still in a critical window so all of your prayers are greatly appreciated.
December 24th, 2024
Merry Christmas Eve,
As a chronic illness caregiver, I always hesitate to share the bad and only want to share the good news, I mean isn’t that the world we live in? The world of highlight reels? I have always struggled to open up about our journey publicly, even though I know this format is mainly for family and friends who are well aware of the struggles. Well I come to you do say to share an update about our past month that
It has been a rough few months for us. Sean had slowly but consistently declining in health. A few weeks before thanksgiving he ended up being admitted to the hospital. After about 2 weeks, just in time for me to visit for thanksgiving, he was released on 2/long term IV antibiotic, increased oxygen flow and overnight Bipap. I was blessed to be able to spend the week with the him and get him settled back into a home routine.
Unfortunately, despite these interventions, Sean was continuing to decline in overall health, spirituality and emotional state. The conversations were changing from hopeful to realistic before my eyes. With me having to stay behind in SC and Sean in CT, we were trying to make sure we stayed as in touch as ever, but as his health declined, his body needed more rest and our conversations were less and less. I swear, this is the hardest part of everything, not being able to share your day with the one you want to tell everything to.
Now, on to the good news. Yesterday, we received our 3rd call that a set of lungs were available and were a match for Sean. They explained that they wouldn’t know if they were viable until later last night but seemed very hopeful. Around midnight, I got the call from my husband that my Christmas wish was one step closer to becoming true, the lungs were viable and Sean wouldn’t be headed into surgery early this morning.
As I type this, Sean is still in surgery but the wonderful team has kept me informed that things are going well. Sean will most likely be sedated through the next few a days to allow his body to recover and slowly wake up.
I ask that you pray for surgery to be successful, that we have grace to understand Gods road to recover whatever that may look like, for my continued safe travels for myself from SC to NY and lastly for the donor family as this blessing for ours, means a loss for theirs.
I will try to do my best to update the page over the next few days and weeks as we learn what God has in store for our next chapter.
🤍 Samantha
September 18th, 2024
Happy Wednesday!
Last Friday (Sept. 13th) Sean had an appointment at NY Presby. His lung function has not changed and his overall health has remained steady, which is good thing right now! Although nothing significant had changed, we were able to find out that he is currently #6 on the transplant list! Although it is a concrete number, anyone with transplant experience knows, that it is just a number and that we don't know how long or what circumstances will lead to the official call.
In even better news, Sean has been finding new primary care doctors in the New York/Connecticut area and his new ENT doctors have made a great breakthrough for Sean. If you didn't know, Sean has not had taste or smell for about a year. The new ent team wanted to try Sean on a new dosing regiment of Trikafta and after about 3 days Sean started to regain his ability to smell and taste! If you know Sean and his food loving self, this was the best news ever! Now he can get back to eating all the junk food :)
Lastly, I was able to go visit Sean over Labor Day weekend and I just wanted to send a big thank you to all of my friends and family who made it possible! Seeing him made my wifey heart content and filled my weekend with love and I couldn't have done it without those who helped!
With love,
Samantha and Sean
August 24th, 2024
We are about a month into this transplant journey! Sean has settled into life in CT and has started to form a new medical community locally. He was officially listed for transplant in early August. So, now the hard part…waiting.
I am still working to settle into life and routine by myself and being a single doggy mom to 3, but I am grateful that my friends, family and coworkers help keep me busy.
Now that Sean has settled in I am looking forward to planning my first visit as I miss him terribly.
Prayer Requests: That I give my anxiousness to God and trust in His plan and HIS timing! 🙌🏼 That Sean will continue to be patient as we wait and continue to be separated.
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