It's Official ... Mike is NOT Rejecting his New Heart!!
What a huge relief! They find out tomorrow what the plan is for his kidneys, so we'll post more then (see "2017 Kidney Transplant News" above for future updates).
I know he and his family have been bolstered by your love, support, prayers, and words of encouragement. Thank you!
Mike Wants a New Theme Song!
Too hilarious ... Mike just shared this story with me and he said I could share. Only Mike!!
Mike shared: It was a little messed up... They play music during the procedure. It was already on a kid rock compilation. But right before he was placing the catheter, guess what song came on?!?
Knocking on Heavens doors... really?!? I told Dr. Mudd we needed to change that right now. He agreed. Everyone laughed. I was like can a brother at least get a "I will survive." Or "I Can See Clearly Now" as my theme song...
The Biopsy is Done and All Went Well.
Although we won't get the biopsy results until tomorrow, the heart biopsy is done and from all accounts went just fine! We'll continue to keep everyone updated!
Possible Kidney Transplant and Heart Rejection?!?
There are just no words … other than we’re all continuing to keep Mike in our hearts and prayers – we will do this together!
Mike was hospitalized at OHSU on Friday night, thinking he’d be there until Monday so they could gently remove fluid without making his kidneys angrier. They think he is now in rejection for his heart. His echocardiogram was abnormal and showed thickening of the walls of the heart, which is a sign of rejection. The kidneys staying mad is another sign of rejection, as well as his low white blood cell count.
He was on IV diuretics yesterday to dump fluid and see if the kidneys would respond, but it hasn’t worked so far. He’s only lost a small amount of fluid.
The next step is a heart biopsy which will take place on Monday. Mike hasn’t had a heart biopsy since the first and only biopsy that was done at Cedars. We nearly lost him then because they clipped the wrong tissue and he bled two liters of blood into his chest. Mike and his mom are both confident that the doctor doing the procedure Monday is the right guy for the job. He has taken care of Mike for years and has done several successful biopsies on Mike prior to the transplant. Mike will be monitored by his hemophilia team and on a constant drip of factor 8 throughout the procedure and for a day or so after. Then daily factor infusions for a week or more after the biopsy. We have no idea how long he will be in the hospital.
The doctors are doing all kinds of lab work, scans, tests to get on top of all this, but the biopsy will confirm if he’s in rejection or not and we go from there. They are in collaboration with Cedars, and have requested the ultrasounds of the donor heart from Cedars to look to see what the thickness of the heart was at time of transplant.
Mike’s still got chronic killer headaches and the pain meds aren’t helping. He’s had them all along but is just weary from dealing with them all day, every day. They are working on finding pain meds that will help but don’t filter through the kidneys. The headaches are from the Prednisone and some of the other meds he has to take.
After today’s appointment with the kidney doctor, we got lots of Whys answered, so things are starting to make more sense. Doesn’t mean we like the situation any better, but the pieces are coming together.
WHY ARE HIS KIDNEYS SO ANGRY? Add all these together and I guess you’d really have to ask why not?!? (1) Mike had a previous kidney injury a few years ago with one of his surgeries; (2) with his 10+ years of heart failure, the kidneys took another hit; (3) when they put him on a new medication a few weeks ago and he had that allergic reaction that made his face swell, it also took its toll on his kidneys; and (4) the diuretics they give him for fluid retention because the kidneys aren’t functioning make the kidneys even madder.
SYMPTOMS OF KIDNEY INJURY? This can cause vomiting, nausea, chills, itchy skin and fever. He thankfully does not have any of these (yay!)
THEN WHY THE BAD HEADACHES AND BRUISING? One word – Prednisone! Even though his Prednisone dose has been really tapered down since the heart transplant, it still causes the migraines, bruising and thinning skin. The doctors always told them Prednisone is an amazing drug, but it is absolutely brutal on the patient.
WHAT’S NEXT? The doctor hopes that Mike’s kidneys just need some more recovery time and this could reverse, but if in a month’s time his labs don’t improve, it will mean it’s time to start the workup for a kidney transplant, a live donor would need to be found (tissue and type match), and then the donor would get a workup to prepare for the surgery. We thought they might do dialysis first, but the kidney doctor said that in this situation, transplant comes first and then dialysis (if needed).
WHO KNEW? We had no idea, but with a kidney transplant they don’t remove the bad kidneys – they just add a third. Go figure.
WHAT CAN YOU DO? While Mike, his mom, and family are feeling blind-sided and discouraged, getting information and education always helps them feel less scared and able to get their heads wrapped around this new battle. Mike is doing as okay as can be expected, and your words of encouragement, prayers, humor, and support help more than you could ever know.
Prayers Requested for Mike
First the great news – Mike’s new heart is still doing really well, he’s been doing cardiac rehab, and he’s continuing to progress in his healing. The harder news is that Mike is having some other health issues and we want to provide an update and request prayers and encouragement from each of you.
In a nutshell, Mike’s kidneys took a real hit before the transplant because of his bad heart, and his kidneys have never gotten back to normal. He’s recently gained 6 pounds of fluid, has unexplained bruising (likely not hemophilia-related), and his BP is too high. He’s been visiting various medical team members up at OHSU, has changed some of his medications, and they are working to figure out the bruising and why his lab tests are off. He just doesn’t feel well.
They have begun discussing a possible kidney transplant(!!) which has been devastating and depressing to Mike and his family. Saying this sucks is quite an understatement. More will be learned about dialysis, the kidney transplant discussion, and possible timelines at Thursday's appointment with the kidney specialist. Mike is doing his best to remain positive and upbeat, but this is not what anyone was expecting.
Mike and his mom Lou Anne are resuming the double-teaming they did before. They will both go to his doctor appointments, take notes, ask questions, and Lou Anne will serve as Mike’s second pair of eyes and ears again. This is so complicated and we know from past experience that things get missed and not remembered, and they have caught many things with their questions. This is definitely a team effort, and the two of them make a formidable team!
First day of Cardiac Rehab!!
Mike shared today: The best. It was first time in my life where they gave ME the option of what I wanted to do first... Before he could even finish I shouted BIKES!! That's never happened because of health issues. It was like winning the lottery.
It's one thing to read that Mike has a very swollen, painful face and near migraine headache with major nausea, but another thing altogether to see his face. Looks so uncomfortable!
Mike and his mom went to the emergency room yesterday, and learned he has something called Angioedema. Caused by a reaction to a bp medication that was started on Wednesday. It's very rare for this med to cause this reaction. (But if it's rare, it will happen to Mike!) So other than watching for breathing difficulties, thankfully he is out of the woods. Today is Day 3, and his swelling has improved some, but as you can see he has a long way to go. The great news is that his heart is still doing great. Hang in there Mike, and we all hope you're feeling better soon!
Mike is back home in Oregon!
So happy to report that Mike is home and being transitioned to OHSU for the remainder of his recovery! Exceeded all the Cedars doctors' expectations and timelines. Look out world here he comes! On to pursuing his dreams and enjoying life.
"I Get to Live My Life Now!"
August 9th will be 90 days since Mike’s transplant! He’s definitely making really great progress! The photo is from a recent clinic visit - Mike wears his pork or bacon or soy sauce shirts to drive all the cardiologists crazy! He’s been cleared for swimming, eating in restaurants and driving again (quicker than anyone in the past that the team could remember). He wasn't supposed to even eat cooked sushi for a year post-transplant, and he was cleared to eat it now. He's bummed about no raw sushi for quite some time but happy to be able to go get a few things he likes. They said with his culinary training they know he can manage all the food rules. The hardest for him is no raw sushi and having to eat only well-done beef and pork.
Mike is walking all over the place, getting in 10,000-12,000 steps per day. He is walking the neighborhood, beaches, UCLA campus and parks. He's back to cooking his amazing food!
He thankfully he has gone from over 20lbs of excess fluid in his entire legs, to just a smaller amount in his ankles and feet. His kidney function is not completely back to normal yet, but continues to get better and better at each lab draw. His kidneys took a hit at transplant time and they are still a little cranky, but so much better.
There are a couple of issues for him right now. One is almost migraine-type headaches about once a week that come with nausea (and pain meds don’t touch the pain in his temples). This happens about once a week and the only thing he can do is try to sleep and wait it out. The other issue is anxiety and restlessness, which is a side effect of the Prednisone (steroids) and Prograf (the most important anti-rejection med he will take for life). It usually comes on in the afternoons or evenings and he runs out of patience, feels amped up like he could run a marathon and he has trouble with his emotions and being able to sleep. It really frustrates him and of course Lou Anne wants to be in “mom mode” and try to do something to help, but can't. The side effects are gone by the next morning. He is being tapered off his steroid medication but it will still be awhile before he will be off of them completely (probably by this fall). He will be off a good number of them eventually, but for now he takes about 40(!!) pills per day.
This Wednesday, July 27, he will go to his transplant clinic, which is almost a full team comprehensive appointment, lab draw and echo. It is very much looking like he will be released 3 months early to go back to Oregon and continue his recovery and follow up care at OHSU! Back in Oregon in August!!!
His positive outlook, incredibly hard work, never-give-up/grateful attitude are truly inspiring. This guy has been through the wringer from day 2 of life up to his 29 years now. There is no stopping his goals of travel, work, writing a cookbook and opening his own food truck. Like he said just this week, "Mom, I get to start my life"! We know he has certainly has brought light and life to everyone he meets! We're all so proud of you, Mike!
Back to a Regular Room and a New Discharge Date
Mike is getting out of ICU and into a regular room this afternoon, and he's slated to get out of the hospital next Friday, June 3! All his central lines are out, and they're continuing his Factor 8 hemophilia medication through the weekend to control any bleeding. Because he reacted so poorly to the last biopsy, the medical team has determined they will not do any more angiograms or biopsies on Mike unless absolutely necessary. Sounds like a great plan!
Mike's Getting Back on Track
Mike is doing better today. He's already walked some this morning, and had an echocardiogram. His doctor said he should be in ICU one more day and then back to the other unit, where he will work with a physical therapist to get him back on track with strength and endurance. He likely won't get out of the hospital until some time next week, but for now we're taking it one step at a time.
5-24-16, 3:30 pm
It Was the Biopsy That Caused the Bleeding
To ensure Mike’s body isn’t rejecting his beautiful new heart, he needs to have regular heart biopsies done. They do a right heart catheterization, where they thread down a catheter with tiny scissors to snip some heart tissue (he can hear it when it snips and says it sounds like a camera shutter, but says it isn’t painful). Mike had his first heart biopsy last week, and his second biopsy yesterday. The plan was for him to have these biopsies weekly for a month, then monthly for a year. He did fine after the first biopsy, but they believe yesterday’s biopsy caused the excess bleeding around his heart (as in 2 liters!) The best news is that his heart is still doing just fine (hallelujah!) However, they’ve had to give him several units of blood today, and they’re giving him two different kinds of clotting factor (Factors 8 and 9) to see if they can get the bleeding to stop. They are going to rethink how they approach future biopsies with him. He’s stable but completely exhausted from this unexpected and scary turn of events, and his mom and brother are with him now. We are so pleased this was discovered BEFORE he was discharged, but it’s sure not how everyone had hoped today would go.
5-24-16, 11:00 am
Mike is Back in ICU for a Couple of Days
Well, we thought Mike was going to get out of Cedars-Sinai today, but he’s back in the ICU. He had an echo and EKG this morning to verify all was well before they discharged him, and they found fluid around his heart. They are doing a procedure soon that will drain the approximately 2 liters of fluid. He’ll need to be on IV hemophilia clotting factor to control any bleeding, and he’ll need to be monitored in ICU for a couple of days. Mike is discouraged and a bit scared at this turn of events, so please continue to send prayers, thoughts, and encouragement his way!
Mike Should Get "Sprung" on Tuesday!
After living at Cedars-Sinai for 42 days, and only a mere two weeks since his heart transplant, Mike is scheduled to be released from Cedars-Sinai tomorrow, Tuesday, May 24! Isn’t that the best news ever?!?
Mike will still need to live near Cedars for the foreseeable future as he will continue to be closely monitored and will also work to get his strength back, but he’s definitely heading in the right direction!
I Hope You Dance
This is an amazing story Lou Anne and Michael learned from Dr. Oksana Volod, starting today and working backward to the time Cedars-Sinai was first contacted about Michael. Whether told forward or backward, this story will undoubtedly give you goosebumps and let you know that someone bigger than any one of us is involved in all of this!
Dr. Volod heads up the Coagulation Unit at Cedars-Sinai. When she first heard from OHSU last fall inquiring to see who could or would do Michael’s heart transplant, she first said, “No, we can’t do it … it’s way too risky.”
Many members of the Cedars team emailed her that evening telling her Michael’s story, asking her to reconsider. She couldn’t sleep that night thinking about him and his case.
Dr. Volod then recalled when she was at the Hemophilia Treatment Center in London she learned all about the “out there,” “risky,” “no one’s done this before” procedures and surgeries, and was so impressed about their saying “yes” instead of saying “no.”
Soon thereafter she told the Cedars team that she was “in” regarding Michael’s heart transplant.
From that decision came the acceptance of Mike in the program, and the extensive 8-week training of staff all over Cedars, from the operating room, to pharmacy, to hematology, and to her coagulation department. They all learned and worked together to coordinate Michael’s transplant relating to his hemophilia. From what we know, he is the first person in the United States with hemophilia to have a heart transplant.
But wait … the story gets even better!
Dr. Volod recently went to an iPic theater in Hollywood to see the documentary, “I Hope You Dance: The Power and Spirit of Song,” based on the book of the same name. Her seat was taken, and she asked the gentleman to move. He explained he was the producer of the documentary she was about to see, and had a row of guests, and asked whether she’d consider moving (which she did). The songwriters of “I Hope You Dance,” sung by Leeann Womack, wanted the lyrics to mean something to anyone experiencing their own stories about hope and faith. So after she watched the documentary, Dr. Volod asked producer Spencer Proffer to autograph the book and take a picture of them together holding the book.
Today she brought the book to Michael, along with the letter from her, and shared her movie theater experience and said how much Michael and his story touched her. She shared that over 100 people have been part of Mike’s journey. She was crying when she told them the story and said the pleasure and honor was all hers to help make this happen.
Bet you have goosebumps (and maybe a few tears!) Such an amazing journey "our Michael" is on.
Last night Mike was moved out of ICU and into a step-down unit, which is a different unit than before since he's now post-transplant (doesn't that have a nice ring to it?!?) At one time he had 8 pumps and 12 bags hanging and had tubes and wires everywhere, and today he gets his last central line out and he'll be "untethered"! That's got to feel so great for Mike. Tomorrow they'll attend a post-transplant education class. So things are moving forward and going well!
He's Back and He's Coherent!
The delirium has gone away and Mike is coherent and feeling like himself again! His family is sooo relieved. Mike had no recollection of anything, but he did ask whether they played a game. Welcome back, Mike!
Progress is Being Made
The ICU delirium is a tiny bit better today, and Mike is making progress in lots of other ways! He's been having spasms and shaking, and both are gone. They took out the swan line, the drain tubes, the chest tube, and he's down to 4 IV drips from 12. His heart and other vitals are excellent. His kidneys are getting better every day, and no dialysis was needed yesterday or today. So we'll all be relieved when the delirium is gone and Mike is feeling and acting more like himself, but we're still thrilled he's continuing to making progress in so many ways.
Difficulties with Delirium
Although Mike’s new heart is still doing beautifully, he is dealing with something called “ICU delirium,” which means he can’t think clearly, has trouble paying attention, has a hard time understanding what is going on around him, and is seeing and hearing things that are not there. We’ve learned this is very common, and 2 out of 3 patients in ICU get delirium, and 7 out of 10 patients get delirium while they are on a breathing machine or soon after. The good news is that time and medication usually clear this condition (which Mike’s medical team is working on), but in the meantime it’s extremely difficult for his family to see him go through this and not be able to soothe him. So please send prayers and encouragement to Mike, his family and his medical team while they work through this issue.Thanks, everyone!
No Friday the 13th News Here!
Mike is making great progress. He's had several tubes removed and medications reduced. He does not need be on 24-hour dialysis! They will put him on 4 hours a day if he needs it. Let the healing commence!
Mike's Organs Need to Sync
Part of what happens after a heart transplant is that the new heart and other organs need to get in sync, and Mike's kidneys aren't cooperating at the moment. So to give his organs "motivation" to fully function together, he had a procedure this afternoon to put a catheter in the left side of his neck for dialysis. The dialysis will clean his blood and will clear his kidneys, and he'll need to stay in bed for 24 hours while this is happening. The medical team says this is not uncommon - it's just something they need to address to get him fully functioning and on the road to recovery!
5-11-16, 11:00 am
Updates, Updates, Updates!
Just received a bunch of information, so here goes nothing!
Mike got out of surgery at 6:40 pm on Monday, May 9. He was kept sedated until the next day, but his brother Tyler, sister Megan, stepdad Nick and his mom were all there that evening appreciating the miracle of his new heart! That first night Mike had to have his heart rhythm adjusted by shock, but we’re told the patients don’t feel it and it’s very common.
Tuesday, May 10, Mike had his breathing tube removed at noon. He was asked to not talk for an hour, then he could have ice chips. He was too excited and had a hard time not talking! Tyler was able to give him his first sip of ice water! Next step was having the mouth/nose mask discontinued at 4 pm. The respiratory therapist controlled the machine for oxygen and medications for expanding Mike’s lungs until those weren’t needed. They also did an ultrasound of his new heart and Mike could see it on the monitor – pretty surreal.
Mike didn’t take any naps at all yesterday (the day after the transplant)! He talked to and hugged many Cedars staff from both the CCU and ICU. He did have some moments of steroid/medication-induced delirium, but lots of lucid conversations throughout the day. He was able to adjust his pillows and pull himself to a sitting position, and he was able to eat applesauce and Jello by 8:30 pm.
The family talked to Mike’s day nurse this morning and she reported an “uneventful” night (wahoo!), and that he did well and was sitting in the chair eating breakfast. Lou Anne asked how on earth he got to the chair with even more tubes and wires, and she said “we are ninjas” … :)
5-10-16, 2:00 pm
Mike is Awake!
And has to stop talking for another hour to get his first ice chips. Not surprisingly he doesn't want to stop talking (some things never change!) I don't have many other details, but wanted to share this photo so you could all see how he's doing. More later!
5-10-16, 10:00 am
Mike Will be Waking Up Today With a New Heart!
We are all still so thankful everything went to well yesterday. Mike's brother Tyler and stepdad Nick arrived in LA safely last night. His great aunt Ebby will be joining them today ... so he'll have a crowd of loving supportive family to greet him. When they sedated him yesterday to prep for the surgery they hadn't yet confirmed a positive match with the heart, so when he wakes up today it will be the first confirmation for him that he has his perfect new heart!
5-9-16, 7:00 pm
The Transplant is Done and it Went Well!
So excited to share that Dr. Trenton, the transplant surgeon, said the heart surgery went well, Mike is still sedated, and they'll be taking him to ICU soon where his family can see him!
He'll have a breathing tube and an ultrasound tube until tomorrow, when they should be able to remove both. Lou Anne's husband Nick and Mike's brother Tyler are on a flight to LA now and will be there tonight (and Megan is still there). Whew!! Such a huge sigh of relief. I'll continue to post more as I learn more!
5-9-16, 2:45 pm
The Heart Transplant is a Go!!!
Lou Anne and the family just got word that the new heart looks good and they're moving forward with Mike's heart transplant! Please continue to pay for all involved. Wahooo!!!
5-9-16, 11 am
Today May be the Day Mike Gets his Perfect New Heart!
They got “the call” this morning that a heart had become available for Mike, and it looks like it’s a match for blood type, tissue type, and size – and it was only one hour away from Cedars!
They are doing a bunch of surgery prep for Mike now and will put him under anesthesia soon. When the heart arrives at Cedars, the thoracic surgeon does a visual exam of the heart, and if all continues to look good, the heart transplant surgery is ON!!
We will likely know in a couple of hours whether they’ll move forward with the transplant, so I’ll keep everyone posted as we learn more! The transplant itself is about 6 hours, and it sounds like total time needed is around 10 hours, so it’s going to be a long day. We love you, Mike!
Mike and the Terrible, Horrible, No Good, Very Bad Day :(
That was yesterday, and luckily today has been a bit better.
Yesterday, Mike was still in ICU and was in SO much pain, mostly from the bruising from the 100 chest compressions the day before. To add insult to injury, he needed help getting up from sitting in the recliner to walk to the bathroom, he lost his balance and went to sit back down, and the brake on the recliner had not been set and he went shooting backwards in the chair and hit with a big jolt. It really skyrocketed his already high level of pain. Thank goodness for strong pain medications and restorative sleep.
On a more positive note, yesterday morning one of Jenn's friends brought to the hospital a bag of fruit, snacks, salads and all kinds of yummy foods from Whole Foods, as well as a Mother's Day card and Starbucks gift card for Lou Anne! Lou Anne was picking up Mike's sister Megan from the airport so she didn't get to meet her, but they all really appreciated her thoughtfulness and generosity!
Mike and Lou Anne are so grateful Megan is in LA for a few days - she brings laughter wherever she goes, and is such a boost to their spirits. Lou Anne and Megan were able to go to the farmer's market for fresh squeezed juice and fruit, and enjoy a bit of what LA has to offer!
For as awful as yesterday was for Mike, he was doing some better today and they were able to move him back to his '"regular" room in the critical care unit late this afternoon. He's still in a lot of pain, but nothing compared to yesterday. We appreciate any improvement we get, and here's to Mike not having any more terrible, horrible, no good, very bad days!!
Mike is Back in ICU
As they say, what a difference a day makes. I hadn’t heard from Lou Anne or Mike yesterday (Wednesday), so went ahead and posted the latest I had heard about Mike getting a bit more sleep and eating a bit more. What I didn’t know was that Lou Anne wasn’t feeling great so she stayed at the apartment all day, but wasn’t hearing much from Mike (was hoping he was sleeping). When they finally connected late yesterday afternoon, all hell had broken loose – REALLY scary stuff!! But he’s okay!
Tuesday night Mike’s blood pressure dropped again and he was having atrial fibrillation and ventricular tachycardia arrhythmias (all with possible life-threatening consequences). Yesterday afternoon he started feeling weird again and the next thing he knew was when he came to, he was hanging partially off the bed. The nurse had to do 100 chest compressions to bring him back!! HOLY @*&#(!
Lou Anne headed up to Cedars to see him and then slept in his ICU room in the recliner last night so she’d be sure to be there when the doctors made their rounds early this morning. (She did admit to staring at him while he slept, like when he was a baby … bet all the moms can relate!)
So here’s where things stand right now: Mike’s vitals are good, and his heart numbers are good. The pain in his chest is confirmed as a partially collapsed lung, likely caused from the fluid build-up. He has to use the plastic breathing “thingy” (medical term, you know) about 10 times an hour to help re-inflate the lung. The other pain in his chest is from the chest compressions. The pain and swelling is still from excess fluid.
Mike’s sister Megan is flying from Portland to LA tomorrow and staying through Tuesday, and then Lou Anne’s aunt Ebby will fly in from Seattle and be there from Tuesday until May 17th. Lou Anne had felt she was doing okay, but after yesterday’s scare she’s very relieved she’ll have additional family with her and Mike.
While we’ve known Mike has needed a new heart for a long time, and months ago his doctors were amazed he was even upright because his heart function labs were so awful, this latest development has still really shaken everyone. He definitely needs that new heart SOON! So please continue to pray for all involved and we’ll continue to keep you posted. It does appear this is going to be a bit of a roller coaster ride, so hang on tight!
No Pulmonary Embolism
The leg ultrasound test results came back and Mike does not have a blockage of his pulmonary artery - glad to have that confirmed! He's gotten a bit more sleep the past few days/nights, but they are still working on figuring out his leg issues and chest pain. He has been able to eat a small amount each day - exciting things like a quarter of a tuna melt, a little fruit and some OJ. And of course Mike decided to get creative with his fruit before eating it!
Mike's "Field Trip"
When Mike gets out of his room it's rather like a field trip. Not quite as fun as going to the museum or a performance like when we were kids - Mike is on a field trip to have another leg ultrasound done to make sure there is no pulmonary embolism, which is a blockage of the pulmonary artery. He's just hanging out in the hallway waiting for transportation to pick him up. Lou Anne is is just a wee bit worried he might make a run for it once he gets out of his hospital room for a bit! :)
Rough Days for Mike
Mike has had several rough days, with very low blood pressure, retaining too much fluid, swollen painful lower legs, sleep deprivation, muscle spasms, chest pain and nausea. His blood pressure did go up enough so they could give him pain medication, but he hasn’t eaten much since Friday. The doctors got more aggressive with an IV diuretic to get rid of the excess fluid, but have switched it to a different diuretic thinking that was causing the pain in his chest and the swollen legs. They estimate he has an extra 15-20 lbs. of fluid on board – how uncomfortable!
Mike can go from bed to chair to bathroom, but hasn't even been doing that the last couple of days. He's weak so he has to have someone with him to walk to the bathroom with his giant IV pole. He won't be able to leave his room until after surgery, but we're pleased that he's still in his "regular" room and didn't need to go back to ICU! We would sure appreciate prayers and healing thoughts for Mike, and encouragement and strength for his mom. He definitely needs that new heart - soon!
"Heart Ambassadors" Tim and Brenda Visit Mike and Lou Anne
Each week, "Heart Ambassadors" who have personally gone through a heart transplant visit patients in the heart unit to share their stories and encouragement and answer questions. This week's Ambassadors were Tim and Brenda. Tim had his transplant 6 years ago. Brenda had hers 14 years ago, and her son also had a heart transplant! Her perspective as a recipient plus her perspective as a mom of a son who had a heart transplant was especially amazing for Lou Anne. And can't you just imagine what kind of a Heart Ambassador Mike will be after his transplant!
Mike is on CBS-Los Angeles News
Mike was interviewed by the CBS-Los Angeles news crew from his hospital room at Cedars-Sinai. Click here to see the news video!
Cedars-Sinai "Home Depot"
Mike had a "swan" IV tube threaded down through his carotid artery in his neck. Every 12 hours they have to change the tubing and do what they call his "numbers," which is what that swan carotid arterly line measures. They have to be very precise and have him at a 30% incline. So they mark his body with a pen and use the level to check the %. Who knew a level could be so helpful in the hospital?!?
It's Official - Mike is Admitted to Cedars-Sinai
Mike is officially admitted to Cedars-Sinai and is awaiting his new heart. It's been amazing to see all the love and support culminate into this moment. Now the waiting begins ...
Home Away from Home ... and an Admission Date
Mike and his mom Lou Anne made it safely to LA Wednesday morning and got settled in their new home away from home.
Lou Ann's husband Nick (aptly known as "Super Nick") drove down to LA Friday/Saturday and is spending a few days with them and to help Mike as he gets admitted to Cedars-Sinai on Monday, April 11! Nick will fly back home next week, leaving the car for Lou Anne (and ultimately Mike) to use. Thanks Megan and Brian Harrell for making that possible by loaning your car!)
Starting Monday, Mike will live at Cedars to await his perfect new 💖! It could happen quickly, or it could take months, so let Mike know we're in it for the duration, however long (or short) that may be!
Check back often for more updates and photos of Mike's journey!
Flight is Booked, Apartment is Found and Admission to Cedars is Near
Mike and his mom Lou Anne were planning to leave last Sunday to drive to LA, but Mike's health decided to get in the way of that plan. He started having shortness of breath, chest pressure, fatigue, and just didn't feel well (he definitely needs that new heart soon!). So he went up to OHSU yesterday afternoon, and after blood tests and a visit with his doctor, they decided they wouldn't admit him to OHSU (yay!), but they nixed the plan to drive to LA.
So on to Plan B - flying instead of driving! Lou Anne got online and found some awesome deals on one-way airfare to LA - only $59 each - so she and Mike are booked for April 6!
And finding housing has been a HUGE worry. Lou Anne has literally spent hours every day trying to find something that would meet their needs but kept running into brick walls (or sticker shock - LA is definitely for the rich and famous!) But today it looks like the housing came through as well. She found an apartment that is reduced rent because of construction in the front of the building (earplugs should handle that if needed), yet it's only 4 miles from Cedars, has laundry facilities on their floor, is fully furnished, includes all utilities/wi-fi, secure free parking in a parking garage, exercise room and pool for Mike's rehab after the transplant, is $500 off for the first month, and is month-to-month after that (most places require a year lease)!
And Mike should find out late this week or early next week the actual date that he will be admitted to Cedars-Sinai (likely shortly after they arrive in LA on April 6). So as long as everything pans out with the apartment, he'll get to see it before he's admitted to Cedars, Lou Anne will stay in the apartment near the hospital until Mike has his transplant, and then Mike will live there during his recuperation/rehab once he's discharged from Cedars.
Please continue to keep Mike and his family in your thoughts and prayers - it's been a long, stressful process to get all the pieces lined up, but perseverance (and prayers!) are paying off!!
A Huge Thank You and an Update
First, Dollar For Portland is absolutely amazing! For the entire month of February Jared and his team worked to get word out and raise funds for Mike's heart transplant. Click here to see the video they produced to bring awareness to Mike's situation.
The final tally is in, and due to your generosity at the big February 25th fundraiser and the other Dollar For Portland activities throughout the month, $5,000 was raised for Mike. As he would say, "so legit"!
The family has been laying low the last few weeks ... Mike and Tyler's dad, David Hargett, was diagnosed with liver cancer just 2-1/2 weeks ago. The boys got to visit him in Idaho a couple weeks ago, and were on their way there again when they learned he had passed away last Tuesday. Please keep Mike, Tyler and David's family and friends in your prayers.
And on the transplant front, Cedars-Sinai's operating room manager reports that the hemophilia training being done in preparation for Mike's heart transplant will be completed by March 31. The coordinators expect to admit Mike sometime the week of April 4. We'll let you know as this progresses, but this is what everyone has been working toward these past many months. No doubt additional needs will arise, but for now please continue to keep the entire situation and all the people involved in your thoughts and prayers.
You've got this, Mike!
Seeking rental housing in Los Angeles
Mike and his mom are actively looking for an apartment, duplex, small house, or shared housing space for their time in LA. Check out all the details on our How You Can Help page.
Good News ... and a Little More Patience
Mike heard from Cedars today and they have deemed him eligible for a heart transplant, will list him as a 1A (the highest priority), and will admit him to Cedars-Sinai in about 8 weeks!
Because there is no Hemophilia Treatment Center in Cedars and they have not done a heart transplant on a patient with Hemophilia A (Severe), they aren’t going to list him until their cardiac and operating room staff get further training on Hemophilia. They said that would be completed in 8 weeks.
Considering Mike has been living with Dilated Cardiomyopathy for 11-1/2 years, 8 weeks is not too long to wait. But if his heart starts to worsen during that time, he would go down to LA sooner to be admitted and wait for the training to be completed.
Mike and his mom were so impressed by Cedars during their two visits. They knew that Cedars did a lot of transplants and a lot of high risk transplants, but didn’t know that they are the largest transplant center in the world, do the most transplants per year in the world and have a 92% successful outcome rating and the national average is 85%.
Obviously, Cedars is Cedars because of the work they put in to eliminate as much risk as possible so the family is very grateful for that part!
Second Trip to Los Angeles/Cedars-Sinai!
Mike and his mom just completed their second trip to Los Angeles, and they definitely had a packed schedule!
For Mike's tests, Cedars took 20 vials of blood, did a CT scan and took chest X-rays. Then there were the 15(!!) appointments in two days, including rheumatology, hepatology, hematology, nutrition, finance, psychiatry, surgical, and a transplant lunch and learn, just to name a few.
No answer yet on hospitalization, but more information should be available next week!
Mike's heading to Los Angeles/Cedars-Sinai
Mike’s OHSU medical team believes he has the best chance of survival by having his heart transplant performed at Cedars-Sinai in Los Angeles.
The emotional piece of this big news is that Mike and his mom Lou Anne will need to live in Los Angeles for 4+ months, away from family, friends and their support system during the surgery and recuperation period.
The financial piece of this big news is that they need to have a minimum of 4 months of living expenses raised through NFT to show Cedars-Sinai he has that covered, and after that we will need to continue to fundraise to cover the rest of his needed expenses. As of today the donations made through NFT total $3,335 (thank you!), and we definitely need to push that number over $12,000 in the next month to help ensure Mike will get approved by Cedars-Sinai!
Mike and his mom Lou Anne are heading to Los Angeles Dec. 2-5 to get the process in motion, with the end goal of having the transplant done by Cedars-Sinai instead of OHSU. As you might expect, there are many, many steps in the process and a tremendous amount of red tape. They're just tackling things one at a time.
Mike and Lou Anne anticipate they will again need to go back to Los Angeles sometime between mid-December to mid-January in order to:
1. Meet the Cedars-Sinai transplant team
2. Have any required labs/tests that Cedars requires
3. Get Mike officially listed for the transplant
Then we wait to find out whether Mike will need to live in LA until the transplant, or if he'll be hospitalized in LA until the transplant, or ?? They're trying not to get too far ahead of themselves, but big things are definitely ahead!
Mike is officially "listed" by OHSU for a transplant
Lots of moving parts including appointments with the heart transplant team, coordinating with the fundraising contact at NFT, trying to get our ducks in a row, and LOTS of prayers ... we'll know more soon. Stay tuned!