Michael was born with Transposition of the Great Vessels and had open heart surgery when he was just a tiny baby. He was doing great, living a normal full happy life. Until a few years ago, when he started having major health problems. His cardiologist said that he would need a transplant but that he wasn’t a candidate for a transplant due to being overweight. He has had many surgeries, several stents, a pacemaker/ defibrillator, av-node ablation, among several others. He coded on the operating table and died and they brought him back to life. It’s been quite the adventure.
Michal is the most amazing father, friend, husband, brother and man in the whole world. He has always been there for anyone that needed him. From hosting toy and food drives, helping a friend in need, giving the last £5 in his pocket, giving rides, blessing bags for the homeless, fundraisers for others, he is always trying to think of a way to help others.
Which is why it didn’t surprise me when he decided that he was going to fight this fight, and that he wouldn’t let anything stand in his way. He decided to have gastric surgery, so that he could be a candidate for transplant. Just before the surgery, one of the medicines they gave him caused his kidneys to fail and almost killed him, he had to have dialysis.
When they took the picc line out, they didn’t apply pressure and just dressed it and left the room. A few minutes later the site burst and was spraying blood everywhere, he pushed the call light and nobody came, finally he started screaming while he was bleeding out and a cleaning lady came running in and grabbed a towel and applied pressure while screaming for help. She saved his life. Fast forward a few months. After special diets, appointments with nutritionists, battles with insurance, he finally was able to have the gastric surgery.
Shortly after the surgery, he started fainting. He ended up being admitted to the ICU and almost died after he had a massive amount of blood loss in his stomach and went into hypovolemic shock. They saved his life again. Fast forward again, he ended up fainting again and breaking two vertebrae in his lumbar spine. Guess what? He kept fighting! Through lots and lots of hard work and a few tears, a year later he had lost close to 200 pounds and was finally a candidate!! The battle did not end though, this was just his ribbon cutting ceremony.
There were many other battles along the way. His pacemaker battery had to be replaced, he had to have more stents, heart catheterizations, ablations, and so many procedures, surgeries, hospitalizations and doctors.
His cardiologist found 2 doctors in Arizona that were capable of performing a transplant as complex as his (his heart is kind of backwards so they need to be not only qualified in heart transplants but also congenital birth defects of the heart). The first doctor in Tucson said absolutely not, he refused to even see him. The second doctor at Mayo said that he would be willing to do an evaluation.
His insurance approved the first appointment…after that…let’s just say Mayo was not the easiest hospital to work with. It took over a year, countless hours of phone calls, arguments with Mayo and the Insurance company, we weren’t getting anywhere. Finally we caught a break, we were blessed with an amazing caseworker who personally knew the director of his insurance company! She was able to get things moving! He saw the doctors at Mayo and had probably 50 tests and appointments. It was finally the day we found out if they were going to approve him for the transplant list!!! Yay!!!
We get to the appointment and the doctor says, unfortunately the doctor that was going to do the transplant has moved to a different hospital in California! They said they didn’t have anyone capable of doing his heart transplant and they denied him because he was too high of a surgical risk.
So I suppose at this point, he could have easily given up and nobody would’ve blamed him. However if you haven’t learned by now, Michael does not give up!
So we tracked down the doctor in California, made some changes to health insurance, and contacted his office. His nurse knew who Mike was! He must’ve made an impact somehow! So fast forward again, we had Mayo send all of the test/eval results to UC San Diego Hospital. Then we had to go to San Diego and be admitted for more testing. Finally some good news….the doctor had agreed to proceed with trying to get Michael on the transplant list!!! However, since he is in California and we are in Arizona, we’ve had to make trips monthly or bi-monthly for tests, procedures, checkups, occasionally hospitalizations and other medical stuff.
Michael has had many other health battles in the meantime. One of them was his foot. He had MRSA and sepsis from a bad bone infection in his foot. He had to have surgery and was on IV antibiotics for several months. When that did not work and he went septic and almost died, they amputated his toe. His immune system was so weak that he has caught just about every cold and flu going around that year. It was an extremely difficult year for all of us.
Fast forward again. Michael had gone through all of the screening and testing at UCSD (University of California San Diego). The transplant team has agreed to take Mike’s case and feel confident that they can do a successful heart transplant. They have listed him on the transplant list as of October 2017. He started as a status 2, and then his heart failure rapidly decided, and they were able to bump him to a 1b. Now we just have to wait until they can find a matching donor. This is the next challenge in the journey. Because Michael is 6’6” and blood type O-. They haven’t found anything yet that even comes close to being a good match.
Fast forward again. Michael’s health continues to decline. He is constantly on 3 liters of oxygen and his heart is not strong enough to pump blood through his body so he faints frequently. They are worried that his heart strength is rapidly declining faster than expected and feel that the LVAD (left ventricular assist device) will be needed for him to make it to transplant. The LVAD is considered a bridge to transplant in this case. It will require open heart surgery, a pump installed on the outside of his heart with wires coming out of his stomach to a battery pack that will be worn around his waist. This pump will beat his heart for him. These batteries must be charged every 6 hours and will keep him alive until they find a matching donor heart.
Fast forward again. Michael had the LVAD surgery. He is now dependent upon batteries and electricity to keep him alive. Unfortunately because of the anatomy of his heart, they had to put the LVAD in at an angle and it is hitting the septum in his heart. So he is constantly going into v-tach which is a very dangerous heart rhythm. The only thing they can do now is hope to find a matching donor and to have a heart transplant. We are hoping that the vtach gets better with time. It has been quite the roller coaster. He was inpatient in the hospital for 36 days, he had developed an infection from his picc line and had a rough couple of weeks. He has been discharged now and we are currently staying in an apartment right next to the hospital. There wasn’t much more they could do for him in the hospital, so now we just wait and keep a close eye on him.
Michael’s doctor was able to bump him up to a status 1A so he is currently at the top of the waiting list in San Diego for a transplant. They are getting matches, just nothing perfect for him yet. So they are continuing to look through the offers. We are just praying for a good match now. One that will give him a long healthy life with his family and allow him to do things that he never dreamed were possible! 💜
We hope that he can walk his baby girl down the isle someday. .
We will not stop fighting! He deserves a long happy healthy life, just like you and I!