Joe has had a battle with lymphedema (fluid retention) for many years along with his weight. In January of this year he took steps in the right direction and started seeing a physical therapist who was helping him control the lymphedema along with exercising in a warm pool. Joe lost 40 lbs from January to May. He had a bit of an off month in June. By July he had a dangerous amount of fluid build up. On July 16th at 4am the ambulance was called to our apartment as he was very weak and pale and short of breath. A couple hours later we were in the ER and then being admitted into the hospital where he was until August 1st. In those two and a half weeks he lost 178 lbs of fluid off his body! They began regulating his oxygen as we know it becomes very low. He was also retaining too much C02, which means he wasn’t exhaling enough so he basically self sedated himself for the first few days as his brain was pretty tired and foggy. He also began using a sleep mask (still waiting for a sleep study) but we purchased a bipap machine out pocket to ensure he could continue this great progress at home until the study is complete. Having a good night sleep made a world of a difference in his life. Cardiology has also been very involved in his recovery as this is all very tiring on his heart. They gave us a scare of him having a leaking valve, which when examined again they said they do not think it actually is. He is also restricted to only 1500ml of fluid each day, we have to weigh him every day, we have had to cut a lot of sodium out of his life. He knew this was his last chance to get himself healthy. He was ready!!! He felt so much better!
We got home on August 1st, began following all the doctors orders, we wrote everything down we were doing daily. He continued to lose another 13 lbs on his home in just over a week.
Then came August 10th...We have been monitoring Joe’s oxygen and heart rate levels. He was using his home oxygen with activity like directed but things just didn’t seem right. He began to lose his appetite. We went into his primary doctor the morning of the 10th. They did all the normal checks in the clinic room. They did a EKG which was good, wanted labs done but just to be extra safe the doctor drew a CT order. That’s when our life changed! Joe was rushed from radiology to the ER where we were told he has blood clots in his lungs. He was put on blood thinners immediately and then brought back to radiology for a procedure to go internally to blast and break down these blood clots to help give him a head start. And brought to the ICU to recover. They removed the catheters which were placed up in the lungs the next morning. This is when I found out 80% of his lungs were filled the day before. The radiologist said it went good but not great. There is still a lot of them in his lungs. They kept Joe on his breathing tubes and sedated from Friday to Monday. Sunday is when they shut off his sedation to see how well he would do waking up.
Come Monday the 13th he was still pretty out of it. He was giving us zero movement on his right side. But all his vitals were great this whole time, he passed a breathing test with flying colors. I went to work at 2 pm Monday, Joe’s brother had come up to be with him. By 3:30 the ICU was calling me to tell me the stroke team was in his room assessing him because he began to have less movement overall. I made it back to the hospital just after 4 and they rushed him down for a CT scan of his brain. This where the heart breaking news of Joe had a massive stroke was given to me. This was the worst of the worst, this damages his entire left side of his brain. We were given the options. Surgery which was very risky due to his size, and condition. This would remove the left side of his skull to allow the rest of the brain to do its swelling. We opted out of this. We chose to allow his body to do what it wanted to do. Which meant, he could possibly go into a coma if it were to swell too much. He would either pass on or live in a coma in a nursing home with a tracheotomy most likely. As of Tuesday he has already shown us he is here to fight. He is strong and determined. He can recognize everyone, he can hear us. But he cannot speak. He tries to get sounds out. We were told he will not understand what we are saying to him. But we do not believe what neurology is telling us. Joe very much understands us. He is beginning to properly answer questions with yes and no head nods. Showing more body language to us. And he has even started more movement on his right side (his bad side). We are unsure what the future will hold for us, but we know it will be hard. He will also have delays in his future. There are so many unknowns yet!
During Joe’s first hospital stay, I took 2 weeks off of work to be with him. I stayed at the hospital every single night. I used all my sick time for this year and unfortunately used all my sick time for next year. During this second visit, I was trying to go to work so I wouldn’t have to use all my vacation time up also. Unfortunately I will be using that up which is only a week and a half of time. I have been approved to have 12 weeks off with work but that is unpaid. We have been living on my own income as a small retail manager for the past year as Joe’s health and weight have made it hard for him to work.