lizmahony-blog - Tumblr blog

lizmahony-blog · 8 years ago

Text

145 Days

One year ago the phone rang with the long awaited phrase, “Jon, we have a donor on the table”. The following account is the messages I sent to our family and friends during the hours, days and months following this call for bilateral lung transplant surgery at UT Southwestern Hospital in Dallas, Texas.

April 14, 2016:

This is difficult to write – Jon is back in OR. All of numbers post surgery were in positive range, but his heart rhythms were difficult to manage so resulted in very erratic behavior, then his heart stopped. He was paddled 5 times and then opened up for cardiac massage. He left the room heart stabilized but docs need to understand rhythm problems and be cooled down for next few days for fear of neurological impact from the heart stoppage. We won’t know anything neurologically for a few days. He will be deeply sedated and kept cold for at least 48 hours. The risk is stroke and other neurological problems. I’m well informed and feel very well supported by all of you and staff here.

Just spoke w/lead doctor who took Jon to OR and brought him back w/CPR. Jon’s heart is stable – no additional support needed – not back on bypass, no ecmo (to oxygenate the blood externally). Dr. had done 500 transplants and has never seen anything like this happen. Jon’s heart had to be charged over 5 times to respond. But it did respond. What happened in OR just now is best possible outcome bc back in rhythm without additional external support outside of meds. Neurological problems cannot be assessed at this point. Doc did say that brains of people with PH (pulmonary hypertension, which is what Jon has) are “used” to low O2 function. He will be chilled for 24 hours at least and then warmed to determine next steps.

I have spent the last hour with Jon. I was given permission to go in and hold his hand and be with him. He's being cooled for 24 hours as I have mentioned. The hope is if there was a lack of blood profusion to his brain, this will combat the effects. His pupils are responsive but he has not moved deliberately. It is too soon to tell. When I was holding his hand, he definitely was resisting my attempts to straighten his fingers - possibly because he's cold and clinching his fist.

Cardiology came in to discuss what the hell happened?? The consensus is he is vulnerable to long QT (http://www.mayoclinic.org/diseases-conditions/long-qt-syndrome/basics/definition/con-20025388) and the medicine he was on extended the length of QT and sent him into arrhythmia which would have been fatal had it not been fast acting UT staff. The long QT is most likely a result of the trauma of surgery.

He will be on medicine to help stabilize his heart during the recovery phase.

We are not out of the woods. But his lungs are working so far - 98% on room air. Baby steps today.

Shift change so I have an update - Jon's cardiac output is 2.5 - anything above 2.0 is what good looks like. He was on three heart medications and now down to one to help his heart function while it gets used to new lungs.

The star of the show that's been overlooked is our new, healthy lungs. They are doing great and apparently were a great pair for Jon. O2 stat is steady at 100% saturation on room air.

Jon is heavily sedated and again remains medically paralyzed while we wait for the 24 hour hypothermia treatment. He is not out of the woods but is trending up which gives me hope with reservation.

I am deeply grateful for your texts, your prayers, your unending support and love for my Jon. The nurse who first responded today and remained his nurse is Lili. She saved his life. I gave her a big hug from all of us and said there are so many people who are grateful for you.

I'm a little over 20 hours without his voice. I'm a little over 40 hours since sleep. I'm headed to hotel for a rest and will keep you posted with news. Hoping a quiet night.

April 15, 2016:

Good morning. Jon had a quiet night - his heart was stable and lungs continue to function well. He had a chest x ray this morning and everything looks the same as yesterday. They are slowly lowering the heart medicine and weaning him off to see how he does, so far so good. The cardiac output I mentioned last night (2.0 is threshold) is up to 3.5 which is good news for heart function (Lili our nurse is back this morning and gave a big thumbs up).

His lungs will be suctioned out today which is normal procedure for lung transplant patients bc all the nerves are not there anymore and he can't cough.

Today is a waiting game. They will slowly, very slowly start warming him up. This process can affect his heart negatively so low and slow is the plan. Once he's warm, they will wean of the paralyzing medicine and then the sedation. Then we wait and see what he does.

I'm anxious and hopeful. Thank you for everything. I slept last night which is definitely helpful.

I'll try to keep it short tonight but wanted to give an update beyond he's awake!!! He continues to be responsive and even shared a big smile. Now the recovery begins for the lungs which is arduous and difficult. The heart incident does not help but thankfully the UT staff is equipped and so knowledgable with transplants, he's in amazing hands. The respiratory specialist said his lungs are working "beautifully".

As great as it is to have Jon "back" - his alertness complicates the recovery bc he is uncomfortable especially with the vent in his lungs so he will continue to be heavily sedated. The game plan - rest and recover.

So today was (pardon my words but this is Jon's new catch phrase) "pretty fucking good!

April 16, 2016:

Good morning. I've been with Jon all morning so away from my updates. All in all - a good night. His vitals stayed strong, he spiked a bit of a fever but nothing too alarming and probably expected with the second chest opening during the code.

The surgeon and lead transplant doc on call came in and we're happy with what they are seeing. The game plan is to continue to wean him off the medicine for his heart and lung output to see what he does. They turned off his "pacers" today which were managing his heart rate at 90 and now 81 on his own 👍🏻

I just checked on him a minute ago and he's watching tv and writing "shower" on a notebook page. All great signs of healing.

Hoping for a quiet day of rest for Jon, doctors orders.

Saturday night update: today had its ups and downs. Jon is much more alert and interactive. Which is a relief given the incident however it also results in Jon communicating how hard this transplant recovery is. The surgeon asked him today "Lung transplant is hard right?" Jon nodded, and then surgeon said "harder than you thought?" Jon nodded furiously. He's frustrated, the tube down his throat is driving him crazy and he's coming off heavy duty sedation - a combo resulting in a lot of stress and agitation. This shows a lot of fight but also affects his pressures and vitals. My one mistake may have been handing him a pen and pad of paper because the kid had some words 😳

So - we wait. The night nurse tonight is the same one who has been with him since Thursday. Cathy doesn't mess around. She's direct, competent, caring and experienced. He's in good hands.

April 17, 2016:

Today is here, give it your attention. Tomorrow is coming, give it your hope. Yesterday is gone, give it your blessing. -Doe Zantamata

Jon is mentally and physically better this morning. Unfortunately 30% of the patients who have a cardiac event post surgery end up in AFib and God knows Jon doesn't want to be left out so he's in AFib. I spoke with his surgeon this morning and he is not at all concerned. He said he anticipates Jon coming out of it on his own.

All the numbers that should be trending down are doing so, numbers that should be trending up are doing so as well.

Tomorrow the tube comes out and the real work begins. I'm more rested, he's coming around and we are ready to kick some ass.

PFG my friends.

Quick Sunday night update: Jon was up most of day. Very anxious and a bit frustrated with progress. His heart still in AFib and is being monitored but doesn't seem to alarm any of the medical professionals.

He had the pen again and would like to "go for a walk, have a drink, stand up, how's boo, char char" and the heartbreaker "I miss you".

Later in the afternoon his stats started to drop and he needed a "bronc" - essentially cleaning out his lungs for him because can't cough or anything on his own with vent.

Following that procedure - they decided to add another medicine for him to be sedated. As great as it is to have him communicate - most often when you're intubated you're not awake - so he's agitated and not resting which will negatively affect his healing. I'm much happier with him sedated bc there's nothing I can do to help him so unhappy with the tube down his throat.

The good news - he's stable, the bad news the vent will most likely stay in another day.

Anyone want to tell him? 😖😳

We have another day so PFG and here's to rest.

April 19, 2016:

When they said this was going to be a roller coaster they weren't kidding. Yesterday was a bad day in terms of what Jon's lungs looked and sounded like from Sunday to Monday. And in typical Mahony fashion, the X-ray didn't show what a typical bad lung X-ray shows. Then when they went in and did a "bronc" expecting mucus, or secretions it was essentially nothing. So is it rejection? Usually happens 96 hours post transplant, he's further out. Is it pneumonia? Doesn't happen this soon. So our rock star Doc threw in her words "kitchen sink treatment" to see what would work. Essentially antibiotics, steroids, and deep sedation.

Also when they performed an echo for his heart there's damage on his left ventricle from the code - Doc ran it by cardiology and they think it's a "stun" injury and should come back.

Something seemed to work - this morning his X-ray much improved, his fever untreated at 99.8, his blood gas measuring o2 in his blood better, kidney function is normal for his baseline, BP great. Heart rate 😳 well he can't be perfect? Its between 90 - 120.

Plan today is to continue to be sedated and rest. I'm digging deep because roller coasters aren't really my thing especially with my Jon driving.

April 20, 2016:

Wednesday - one week since we had the call. Jon continues to stay the same, maybe has improved a tad today although he has a fever again. Still sedated.

Rockstar Doc did a bronc - and found a "typical" bronc for post lung transplant. She has ordered a ct scan of his lungs to see if there is any infection in the outer lining of the lungs.

I'm told patience is a virtue daily by many of the medical staff. Before he went into surgery they explained how I wouldn't be allowed in the room but could stand and see him at the glass. Jon said "you will have to get her a chair because she won't leave". Truer words never spoken. I'm standing watch and he's fighting like hell.

April 22, 2016:

Friday - often heard is no news is good news, in our case no news is no news. Jon has a fever from an unknown cause. They have checked every little bit of him with no result of infection. They have thrown antibiotics, anti fungals, anti everything and the fever persists. There has been ct scan of lungs and Doctor said "nothing horrible" - which is high praise from Rockstar. The nurses are doing their very best to make him comfortable and bring his fever down with cooling blankets, his room is about 65 degrees etc. He remains sedated.

Yesterday during his sedation vacation he wouldn't respond to the doctor's requests - she asked me to come in to try and I scrubbed in, literally have to scrub in. I walked up close and said "hi hon" eyes wide open, asked him to squeeze my hand, move his feet etc. he did everything. It was a relief and I said "start listening to the doc!" This morning a nurse went in while he was stirring and asked him again all the same reactions, and he was kicking his feet, squeezing etc. He's there just so doped it's hard to get him out of it - also can we say Irish? That kid is stubborn.

Slow and steady wins the race? Patience is a virtue? Good things come to those who wait?

I'm not sure but I sure do miss him.

April 24, 2016:

Sunday night: I hoped to write Jon was "tube free" but alas...god knows he tried - when rockstar doc bronc'D him today she quickly realized Jon had worked the tube out of placement and basically "out" so extubating himself - this was not the plan so they intubated him again. Thankfully he handled It better than he has one week ago in that his stats didn't drop and take most of day to recover. No other news. Baby steps again. I'm patient and hopeful. I miss my boys and girl terribly. I miss Jon. So hug your loved close for us.

April 25, 2016:

”Do not wonder why things are “taking so long.” In fact, everything is rolling out exactly as it needs to, using not a minute more than Perfection requires. Rest easy and be at peace. Life is working its magic even as you take your very next breath.” – Neale Donald Walsch.

A good reminder today. It's Monday, we had a relatively quiet weekend. Baby steps in terms of progress but there was progress. Today rockstar doc announced Jon was a "run of the mill" transplant patient - high praise given our ordeal over the last 12 days.

Hoping for a continued upward trend ride but I've learned enjoy today, tomorrow will come soon enough.

April 28, 2016:

It's Thursday - officially two weeks since surgery. We had an eventful beginning of the week, Jon was off the vent all day Tuesday and then unfortunately a clot traveled to his lungs and it was a struggle for his system. Thanks for the quick action and care of the UT staff he was re-intubated and medically treated to help with the situation. This incident was scary and unexpected but has brought to light some heart function issues that can now be addressed as his lungs are settling into his system. The last two days have been low stimulation recovery days and it's been nicely quiet for him without incident and a steady improvement of all vital signs. I'm hopeful and keeping the faith. Thank you for your continued texts, emails, calls and thoughts - I feel so well supported and loved. All the help everyone is offering in KC has been wonderful, thanks so much. Love you all, PFG and breathe easy.

May 1, 2016:

It's Sunday - Jon has been steady and calm since last update. Today was his first "breathing test" on how things are going without the vent but still on vent. So essentially turning vent off but for a bit and letting Jon breathe on his own. It's like breathing through a small straw so no easy task. But we have new pink lovely lungs - which I reminded him many times today - and he was good for 3 hours and then truly was exhausted. So "knowledge is power" and hiss lungs are working - he needs some stamina and strength which is no surprise given what he has been through and time in ICU.

We also had our first PT/OT session on Saturday. So I watched and learned what to do and have had 5 more sessions of PT/OT with me. Jon was thrilled. 😬

In other news there's a 23 year old from Overland Park, KS named Katie who got her lungs Friday - she's across the hall from Jon and her family is lovely. So I'm thinking of her tonight.

Cheers friends. I'm surviving and I'm grateful for Jon's eye rolls when I announce its time for PT. But God knows I miss my kids so hug yours and if you see mine, hug them from mom (probably more eye rolls).

May 3, 2016:

"Be patient. Be content with small steps. You will get there."

It's Tuesday and in the words of our Dr Rajen, a good day in the ICU is a good day. Jon remains on the vent but was able to breathe on his own for over two hours, building strength. He also worked with PT and sat on the edge of the bed for 7 mins with help. There was a bronc procedure and his left lung is "pristine" and right was pretty good.

The conclusion is his lungs are not the problem, as suspected it's his heart that's slowly recovering and in turn affecting the process of next steps. The magical question is how do we get to the next level - move off vent and protect his heart during the transition? Dr Rajen will balance this with meds for some time post vent. Jon will continue OT, PT and breathing therapy.

So I went to post office today at 12 and standing next to me was a guy in a PFG shirt, honest to God (admittedly it was Professional Fishing Gear) but a god reminder that today is pretty fucking good.

May 7, 2016:

Saturday update - my dear friend Jody sends me a quote every night and I've become quite reliant on her texts - this one seems to sum up my Jon's week:

"Of course life's a bitch...if it was a slut it would be easy!"

Life has not been easy for Jon but today he's been off the vent for more than 24 hours, on and off Bipap all day and all vitals holding steady right where docs want them.

We have a long road to go after what has happened over the course of the last three weeks. A lot of strength building and muscle training through OT and PT. I have watched Jon fight like mad and have no doubt there's more fight left. Before surgery he found bracelets for the 5 of us with TICDA - today I can do anything. He's living it, my kids are living it and I'm doing my best.

I have no doubt there are more ups and downs in the coming days. Thank you for your ongoing endless support. We all know Jon's that guy you cheer for and I'm so grateful to be his wife.

Happy Mother's Day to all the mommas! And today is PFG ❤️

May 10, 2016:

Tuesday - hey Jon fans - quite update Jon has made some incredible progress since last update. He has three types of therapy daily - speech for swallowing, OT for daily function and PT for rebuilding strength. He's off all IV meds for his heart function and lungs are at 100% on 2 liters of O2. Just a point of reference Jon was on 10 liters with stat of 92% just one month ago. The doctors are pretty amazed at what's happening. And none of us are surprised but he's pretty much the hero of the CVICU.

His voice has not come back but he's able to whisper and hearing "I Love You" yesterday for the first time since April 13th was well, there's not really words.

Don't get me wrong - Jon has a long road of recovery ahead but at least now some of it is in his hands and his effort.

That Mahony is one tough Irish man and I'm so grateful for not only Jon but for the UT staff who have become dear friends, and all of you.

May 13, 2016:

Friday - one month post op. We were warned that the first 30 days would be critical and difficult. True on both counts - couple new lungs and cardiac arrest, critical and difficult doesn't even begin to cover it.

So here we are. Jon is sitting next to me in a regular chair - this is not an easy task as he has suffered myopathy from the lengthy recovery in ICU and essentially not moving for 21 days but nonetheless he's in the chair, off the vent, on room air and fighting like hell.

Dr Kaza today was absolutely amazed when she walked in and Jon said "Dr Kaza, good to see you." Everyone in the room cried a little bit.

He will remain in ICU for the weekend to ensure consistency of care and then barring any other complications will be moved to the "floor" next week. Dr Kaza is also moving to the floor next week for 10 days so that will be reassuring to Jon and me for her quality of care is nothing less than excellent.

It's been PFG today - although the reality is settling in for Jon about how much strength he's lost. Thanks to modern medicine and machine there is a lot of ways he can get stronger through PT and OT.

So happy Friday and we've decided to celebrate in Hawaii next June - y'all are invited.

May 16, 2016:

Monday - Jon has new digs. He has graduated from ICU to a floor. It's a big deal actually because essentially everyone on the team agrees he's "well enough to" not be monitored as closely and can focus on PT, OT and Swallowing. I'm the only one hesitant because some of the people I've met on 9 South will be my friends for life and seeing them everyday was comforting.

Jon is one hell of a patient - so strong willed and appreciative. The fact he has new lungs and a new future is starting to settle in. Unfortunately with how difficult the initial 30 days were, we haven't celebrated or even contemplated this new chance. This is all normal according to our pals here at UT but new for us. I remember hoping and planning for this surgery and subsequent outcome but what's the saying "Make plans, God laughs."

So here we are, 10 South. I have no doubt the quality of care is just as excellent but I may press nine every once in a while for some 9 South love.

Btw the gal from Kansas Katelyn - is kicking some double lung transplant ass - Striding with Strube's is her Facebook page and if you're having a hard day - go check out this family and you'll be amazed, grateful and inspired.

PFG friends and with optimism, breathe easy and deeply.

May 19, 2016:

Thursday - or in other words "sh#% it's already Thursday?!" Jon has continued steady slow progress in the hospital. He has about 2 hours of therapy a day. The physical side of his ICU stint is nothing less than alarming for Jon. He went into surgery the night of April 13, listened to Dave Matthews (his request) and essentially woke up 3.5 weeks later unable to stand and no memory of wtf happened. No surprise it's a emotionally challenging time. But thankfully he has me to encourage him in addition to an amazing team at UT who have adopted Team Mahony and their motto - and we're here to get him to the goal line, to our future and to our second chance...wait third or is it the fourth? So there's encouragement, there's all of your messages and a little ass kicking.

On Monday he moving to a rehab hospital dedicated to getting him stronger with a program designed for him. He will have a strict schedule of therapy - good news he's medically stable enough to move to rehab the bad news it's a bit terrifying when you're working on standing.

We all know he's up to it - he knows he's up to it and in the words of our fav coach "clear eyes, full hearts, can't lose"!

Our 18 year wedding anniversary is Tuesday. Because of UT Southwestern and the donor there is a real hope we have at several years together. On April 12 of this year we hoped to make it to 19.

PFG friends, breathe easy and deeply.

May 23, 2016:

We have hit day 40 - considering we almost didn't make it past day 2 it's quite an accomplishment. I'm happy to say we are moved to the Rehab hospital up the street and Jon is ready to begin getting his strength and "body" back so he can actually enjoy his new lungs. Rehab is not for the weary - it's intense and daunting but as I'm sure no one is surprised, Jon is incredibly motivated. So tomorrow at 8:00 AM he will be evaluated and the schedule will be set.

This hospital is part of the UT system so he will be followed by same docs and in fact, the wonderful Dr Kaza is on the Zales rotation this week. It seems as though our stars are aligned or Dr Kaza is pretty clear she's getting Jon to the goal line of discharge (we also found out our youngest Abigail shares a birthday with her youngest daughter).

We have a new anthem - "Rise Up" by Andra Day..."I'll rise up in spite of the ache and I'll rise up 1000 times again" give the girl some love and check it out on ITunes.

May 26, 2016:

Our Jody nails it again with her nightly quote-

"I demolish my bridges behind me…then there is no choice but forward.” – Firdtjof Nansen

Day 1 in rehab was alarming for both Jon and me because of all the evaluations and subsequent reality of what's happened to Jon physically. I'll paint a picture - lost 40 pounds, muscles so tight in his legs neither can be straightened, his skin is so taut around his incision when he applies pressure with his arms for balance to sit up right he has opened his chest wound - and required a visit from wound care. And how was the play Mrs Lincoln? 😖

We were defeated, overwhelmed and weeping.

We hit day four today - he stood yesterday with assistance for 14 minutes, the goal for the therapists was 10 mins by next Wednesday. He needs one person to help him move from one apparatus to another, on Monday he had three therapists helping, the goal was two people by next Wednesday. He's blowing the medical staff out of the water.

Today was the medical team meeting with the us - they all have decided they need new goals, the attending doctor on the floor read his chart Sunday night and expected a much different person than who is "sitting"'unassisted during the meeting. Jon responded "you hadn't met me yet."

PFG friends, breathe easy and deeply and thank you Jon is kicking some serious ass in rehab - it's humbling to watch. He's one of a kind and on a mission...can't wait for you all to enjoy our future.

June 2, 2016:

Quote of the day "your lungs look perfect" - Dr Mahanka.

Jon had a Bronc this morning for his "lung hygiene" - and those babies are working great.

Rehab as I have mentioned is no walk in the park - Jon works 3 hours a day with some of the most incredibly kind, capable and tough therapists at Zale. They have extremely high expectations and goals for Jon. I watch him hesitantly accept their challenges and then overcome each one, I understand why the bar is set so high.

We had a weekend with the kids last weekend and I must say we must be doing something right because it was incredible to watch my kids show up in the most positive way for Jon. Charlie encouraging Jon through all his therapies - a true cheerleader and Jack spending all afternoon with Jon so he wouldn't be alone. And then Abby - simply holding his hand and adorning his room with all her art she made while we've been away. We all know my kids aren't perfect but goodness it was inspiring this weekend to watch our kids be stellar.

I move into an apartment today - that's a big step for me because I wasn't sure on April 14th if we would continue with our plans and now here we are, Jon's alive, building strength, breathing at 100% on room air...PFG.

Breathe easy and deeply friends.

June 10, 2016:

Friday - 8 weeks post transplant: it's been a big week down here in Dallas - Jon has continued his 3 plus hours of rehab a day and this week he has been able to stand with walker assistance and walked (again with assistance of the parallel bars) his first steps since April 13. He continues to gain strength and confidence.

In addition - he passed part of the swallow test today and will be enjoying a diet of puréed foods. This is a huge milestone in lung transplant ville.

And with the highs there was a low, he had a CT Scan of his lungs and there's some unexplained inflammation on the right side which suggests acute rejection - this happens in 70% of lung transplant patients so no one is too alarmed and the treatment is three days of large doses of steroids.

The most notable change for me is his overall demeanor...I'm happy to say "he's back" - feisty, Irish and ready to get back to our wonderful life.

In other news - I had my hair cut and I'm here to tell you I left the salon "closer to God" as a Dallas blond 😬.

June 17, 2016:

Friday 9 weeks post transplant - Jon officially walking with a walker, stronger ever day and so handsome. His discharge date is set for next Wednesday and both of us are cautiously optimistic.

Unfortunately much of this week was waiting for results from a lung biopsy - there is a spot on his lower right lobe - rejection? Inflammation? Last week it was treated with a shit load of steroids and this week after a chest X-ray the transplant team met on Tuesday and decided a biopsy was necessary. This is no easy task for Jon because he's on blood thinners due to the amount of blood clots in system from the length of stay in ICU and the PE in his lungs. So a shot of vitamin K, blood tests, hope and prayer. Today our rehab Doctor who follows Jon and has become a dear friend walked into our PT session. My heart dropped bc I knew she knew something and had to share. I'm definitely the Debbie downer of the family so assumed the worst - well not today friends...there's no sign of rejection. There's something there - probably from pulmonary embolism but not rejection. We will know more when we talk with transplant and we will have more hurdles but today well...PFG.

One last note...it's Father's Day weekend and my Jon is one of the best and so are all of you. So Happy Father's Day Daddys.

June 25, 2016:

Day 3 at "home" - Jon was successfully discharged from the rehab on Wednesday. It was the bittersweet to say goodbye to our rehab team - a lot of tears and so much mutual admiration. It was humbling to work with such accomplished young women and also alarming when we discussed movies or music tastes and they looked at us blankly - maybe the 20 year age difference 😳

But we're home. Jon is a warrior in this game of life - exercises every morning, a million meds to take and then down in the exercise room for the apartment riding the bike 30 mins - mask on.

Today was a little pampering with a fresh shave and haircut from one the kindest most gentle men I've ever met. You would have thought Jon was his very own brother by the way he carefully took care of Jon.

We just have Abby right now as boys are in Kansas and Colorado for fun and it's been a treat. She not only has lost 4 teeth, her favorite word is "aloha", she reads everything and when we passed "hooters" she announced "I call it hoots". Keeping it real.

We have our first clinic visit Monday, continue wound care due to part of his chest incision that refuses to heal - may end up in an oxygen chamber 2 hours a day, 5 days a week to hasten process....god knows this hasn't been easy, but we know it's worth it.

So life goes on. Texas is as hot as they say but we are so flipping grateful to be home together, helping each other and enjoying every fucking minute.

PFG, breathe easy, enjoy the weekend and Jody quote of the night...

"Dance. Smile. Giggle. Marvel. TRUST. HOPE. LOVE. WISH. BELIEVE. Most of all, enjoy every moment of the journey, and appreciate where you are at this moment instead of focusing on how far you have to go." -Mandy Hale

July 11, 2016:

"I'm blessed with everything I need. I am working hard towards everything I want. And most of all I appreciate everything I have" -Unknown

Well the good news - we are "very good" transplant patients meaning we caught a nasty GI infection in Jon early but not before he was severely dehydrated which required hospitalization. So back at Clements - fluids, antibiotics and constant monitoring. As things go for the Mahony's it got worse before it got better and we are on the upswing.

While in-patient - the docs decided to check in on his heart - I'm sure you all remember - it had a rough start as in had to be started after surgery. This week we found out his right side which was in complete "failure" on April 13, so large in size cardiologists would gasp (I'm not kidding and he was a "heart failure" specialist") is NORMAL - in size and cardiac output. We are not even 12 weeks post transplant and we have this result. The left side remains "injured" due to the cardiac arrest, at the 6 month mark we hope see some left heart improvement.

One last note - our time in Dallas has been difficult because of Jon's health journey but we have met the most incredibly kind, loving and smart people we've ever met. We grieve with them this past week as they lost not only lives but a sense of safety.

Breathe easy and deeply dear ones.

July 29, 2016:

106 days, 22 hours and 3 minutes since the lung transplant journey began. Some days flew by, some days felt like 2 combined into one. We have faced more in the last 106 days than most survive in a lifetime. This is due to expert medical care, a selfless donor, hope, prayer, a community of all of you and Jon's will.

As of 2 PM today, we have the green light to go home. Yesterday Dr Wait (Jon's second surgeon after his heart stopped) happened to be in clinic. We asked the nurse if he had time, could be stop in and see us. I will tell you something, the pure elation and joy Dr Wait showed when Jon stood up to shake his hand was life changing. "I am so proud of you Jon - a lessor man would not have survived...and your wife, boy she shared some looks with me but never left your side". It was enough.

We are ready. We are grateful and Pretty Fucking Good has been upgraded to Pretty Fucking Amazing.

Breathe easy and deeply friends.

August 26, 2016:

19 weeks post transplant

I hoped to write a much different update from the last three weeks than what will follow - but we have to start with the good...It's really just the moments that have made the past three weeks amazing - Jon able to drive kids to school, hockey try outs, jeep rides with Jack and a couple of dates. Not asking for much frankly, just being able to be together as he continues to heal.

The bad...Unfortunately this changed this week with a slight decrease in lung function which lead to a clinic visit at KU revealing a cloudy cheat X-ray suggesting pneumonia. This landed Jon in the ER which when hooked up to monitors heart rate was 150 beats 😖.

The ugly...Fast forward to today - an air ambulance flew Jon to UT Southwestern bc he a. Has an infection and b. At KU he had a cardiac event that led to pulmonary edema and is back on the vent. One of my favorite doctors in Kansas was "on" when this happened and worked quickly to help Jon and save his life. Dr Crosser happens to be the doctor who arranged our meetings at Texas from one year ago when he was so sick. He immediately called Dr Kaza to share the update and put the phone down to say "Texas wants him" I said "what do I do?" His reply - "they're not asking".

So here we are - the possibilities - pneumonia, acute rejection, etc etc. The good news - Jon and I are quick to respond to any change and after the bronch today - there was optimism. UT is throwing kitchen sink at him until something "grows" - antibiotics, anti rejection meds, steroids and a full Cardiac evaluation. Currently - he's on the vent but so little support and at 100% I assume he will be off tomorrow, heart rate controlled and in sinus rhythm and all in all doing well.

Apparently the first year post transplant is difficult - or so I've been told. Currently my screen on my watch is "...on the bright side I'm not addicted to cocaine" pretty much sums it up.

Breathe deeply and easy friends - would love your powerful thoughts for my Jon.

August 30, 2016:

Not the ones speaking the same language, But the ones sharing the same feeling Understand each other. Rumi

Quick update - lungs are...wait for it...good. There is some pneumonia (infiltrate) in the right lung. Maybe due to aspiration from liquid or food but very treatable.

So what the hell happened?? Essentially Jon's heart is still struggling with the new lung scenario. Why can't they just get along??

Thankfully because of what happened at KU - the heart has become a main concern of transplant in Dallas and EP cardiology and cardiology are involved. What has been uncovered is Jon has an electrical issue which is affecting his heart rate and complicating simple issues aka minor pneumonia and a structural issue with a valve in his left ventricle.

Both issues can be resolved with time but have to be treated properly with the right meds that will not stress his system or mess with our fresh lungs, no easy task.

So in short - it was good something happened because the heart needs extra help during the remodeling process and now we have the right information with further testing and evaluations.

Breathe easy and deeply friends - thank you for sharing the same feeling with us.

September 5, 2016:

"Life doesn't happen to you, it happens FOR you". -Tony Robbins

Quick Labor Day update about Jon. We are back on 35 headed north. Jon was released from UT yesterday - best he has felt leaving the hospital since April.

So what happened? As I mentioned in my previous updates - Jon's heart was continue to struggle with the new lung scenario. This is unfortunately a side effect of having severe end stage pulmonary hypertension prior to a lung transplant. We met with Dr Doom and Gloom heart failure and the electrophysiology cardio group. At first we discussed adding medication to better help Jon's heart remodel during this lengthy recovery but there are so many complications and side effects with these medications plus the transplant meds, other options were explored.

On Friday morning - Jon had an ablation procedure of his left ventricle. There were three areas that were in arterial flutter causing a lot of problems - the ventricle performs the squeezing function of the heart so not being rate controlled unfortunately worsens the overall function of the heart.

The procedure was a success and Jon's heart is in sinus rhythm. So now the remodeling process should be possible with the new lungs in time.

The last five months have taught us a lot about time and life, the quote from Tony Robbins rings so true - we are so grateful to continue to uncover and live through experiences that will help Jon live the best life for him.

Breathe easy, thank you yet again for your unending support and friendship.

#lung transplant #utsouthwestern #first145days #beadonor

0 notes