So What Happened?

**Please know that this particular blog entry includes a lot of detail on Donnie's health history and details of the night he passed away. It was difficult to write and for those that know and loved Donnie, I expect it will be difficult to read. So please, if you feel that this will disturb you, feel free to not read this blog entry. It won't offend me in the least. I just felt I needed to write it out and so many people have had questions that this may finally answer, as well as to quell any rumors or misleading assumptions about his death. Thanks.**

It's been nearly 10 months now since I lost my husband. I've debated over writing about Donnie's death and initially I had planned to do so fairly soon afterwards but when I tried at the time, I found I just couldn't. It's been a long road for me to get to where I could sit down and write it out, moment by moment and it's still difficult, but I'm thankful that at least in this moment, I think I can.

So many people wanted to know what happened that night. What was his cause of death? How did it happen? Some shared their opinions of why he passed and some assumed it was one health problem over another. I received a lot of private messages, texts and phone calls asking for details that I just wasn't quite ready to give. 

Honestly, I don't have the medical facts to back up my opinion, but as I was his help mate and companion and even eventually his caretaker, I have settled on what I believe to have happened and the reason that I believe caused his death. I know I've written a lot here, but I feel that I need to maybe not for you, but for me. It's cathartic to put it into words. And this way I can just refer someone to my blog if I'm not up to discussing it at some point, because the questions do keep coming. So here is my story and my opinion.

Donnie had a lot of medical issues that came up over the years. He was diagnosed with diabetes in late 2000, but lived well and learned to control it through a combination of diet, exercise and medication. In 2004, as the Doctors then put it, he 'spontaneously contracted' Necrotizing Fasciitis or NF (the flesh eating disease) in his left leg. You can read about that story by clicking here. 

Long story short, he survived NF but came close to death and the trauma/devastation of that disease left residual nerve damage in his leg as well as other complications that arose more prominently over time, including foot drop which led to his L big toe amputation in 2006, overcompensation for the L leg nerve damage which led to his R big toe amputation in 2007, restless leg syndrome, painful neuropathy in his L leg, susceptibility to any common bug/virus because of his low immune system after being on such strong antibiotics so often, hypothyroidism, high blood pressure, a severe candida infection/stomach issue that came back any time he was placed on antibiotics and eventually the last 3 years of his life he had to be placed on an antibiotic 'forever' for the candida. Without this antibiotic he would become so ill that he would vomit non-stop. Literally, non-stop, every 3-5 minutes or less. He also dealt with chronic sinus infections, headaches, nausea, IBS and more. This all became the norm for us, the things he dealt with every day.

Between the Thanksgiving and Christmas holidays of 2010, Donnie became very sick, beyond his normal day to day issues. Over those weeks we were in and out of the Dr's office and the ER at least 1 or more times per week. He had an infection that was being treated by his PCP, ER Doctors (who didn't want to admit him) and antibiotics, but he continued to grow more and more ill. On Christmas day we went to the ER once again and this is when we received the report of his kidneys beginning to fail and along with that he also lost a great deal of his vision almost overnight. You can read more about this by clicking here.

By March of 2011, Donnie started dialysis treatments and gained some stability. We settled into a routine for dialysis and dealt with its occasional obstacles and his continual health problems relating to the kidney failure or his pre-existing health issues as well as some new issues that developed from kidney failure. One of the interesting perks of dialysis for Donnie is that it really stabilized his diabetes. The dialysis caused his sugars to nearly always be normal or sometimes a little low from shortly after he started dialyzing in early 2011 until the time of his death. So his diabetes was largely under control for the last 2 years of his life.

During the summer of 2012, the nurses at the dialysis clinic approached Donnie about starting perinatal dialysis which is a dialysis treatment that could be done from home and potentially give us more flexibility schedule-wise instead of losing 3 days a week to treating at the clinic. They felt he was a good, strong candidate and would do well dialyzing from home. Donnie and I talked about it and he felt he wanted to make this transition. I was more hesitant about it, because it would put more responsibility on me and I would become even more of a nurse. But I wanted him to be happy and I supported his decision and we moved forward by planning the surgery to set up the ability to dialyze this way and his training for the home dialysis. 

The surgery was scary. They had trouble afterwards with his blood pressure and when he woke he was still intubated and they kept him overnight to make sure he was okay when it should have just been an outpatient procedure. From that time forward, I found that he did not have as much strength, stamina or stability even in his daily tasks of living. He seemed weaker and activity wore him out even quicker than before. He walked a little less stable and had to have help even more often at home and at church getting around. He wasn't able to cook as often. I mention this, because he LOVED cooking. It was something he enjoyed doing and made him feel normal, independent, in control and helped take his mind off of his discomforts. Before kidney failure he enjoyed cooking nearly daily, after dialysis started in 2011, he cooked a few times a week if he felt well and after the surgery to put the port in for the home dialysis, he rarely cooked. 

We finally started the home dialysis in October. Everything was manual, meaning we (I) had to dialyze him every 4-6 hours. It was a lot of work, but we were promised that by the beginning of the year, we could do it by a machine and everything would be so much easier and better. I logged everything, I mean EVERYTHING in a book that the nurses would check every couple weeks. Every time he dialyzed, which was about 4-6 times a day, I would check his blood pressure, his temperature, his pulse rate, and I would log his intake of dialyzing fluids as well as the outtake, so I knew how much he weighed, what was normal, if he was dialyzing enough, and so on. I was on top of every aspect of his treatment at home. We wore gloves and masks and were very sterile in our environment each time he treated. Things seemed to be going well, the numbers in the book were right. His home dialysis was working.

But he just wasn't quite his normal self. His strength waned even more and his balance became even worse. We were about 3 weeks in to the dialyzing at home and I was walking with him everywhere he would go in the house either supporting him or helping him up from the bed or even just following him closely with my arms out in case he needed help. One Sunday after church, he fell in the bathroom. He'd forgotten he had taken off his shoes and couldn't see them on the floor and tripped over them. He fell into the washing machine and bruised up his arm and shoulder but he was okay, just frustrated and sore. A few days later, he fell in the living room and broke a table leg, scratching up his arm a little, but he was okay, again just frustrated and sore. 

A couple days after that, it was Sunday early morning and we were getting ready for church. He had a very difficult time getting out of bed and he just had no strength. I asked him did he need help and he said 'No, I've got it'. As I stood there watching him struggle to gain his balance and stand on his feet, I asked him if he was sure he didn't want my help and he said no, again. As he started moving to the hall doorway I watched him and was cringing inside because he was obviously having great difficulty walking. I asked him one more time if I could please help him and he said "NO." I told myself to let him be, let him have his dignity, leave him alone and I turned my back to walk away and get his clothes ready. The next thing I heard was a heavy thud and his cry. He had fallen in the doorway of the bathroom. His L foot (the leg with nerve damage and the foot with drop foot from the NF in 2004) had caught and caused him to fall into a split, HARD on his already damaged L leg. 

He couldn't get up on his own. He didn't know if it was broken. He was in a great deal of pain. But he STILL wanted to go to church. (I'm laughing right now because he was so, so stubborn. He lived to worship and hated when something happened to keep him from leading worship at church.) So I got the rolling office chair and brought it to him and helped him up off the floor and rolled him to the bed to rest for a few minutes before he finished getting ready. After that he could not get up again, even with my help. We decided to call an ambulance and we went to the hospital instead of church. 

At the hospital, they said it was 'just a bad contusion'. They did an xray, an MRI and consulted with another Doctor to rule out compartment syndrome and then when they found out he was a perinatal dialysis patient, they rushed us out the door telling us to follow up with our PCP in the next few days. I had to call our Pastor to meet us at home and with his support on Donnie's right and my support on Donnie's left it was the only way we were able to get him up our front steps and into the house onto the bed. I called his PCP the next day and they scheduled us for a week and a half later. His leg was swollen and bruised badly. It was as if the bruise was bleeding inside his leg and over the next few days, it spread over almost his entire leg, from his bottom to his mid/lower calf and then it spread almost all the way around the sides and top of his leg, leaving only a thin strip unbruised about an inch wide and 7-8 inches long where his skin graft was. So nearly his entire leg was covered in this horrible deep purple/black bruising.

I continued dialyzing him every day and calling the Dr's office every 2-3 days trying to get them to send someone to our home because he couldn't walk.... BECAUSE HE COULDN'T WALK. I literally had to lift him on and off the bed and place him in our office chair and roll him to the rest room and back to bed. He was too weak to do anything, I even had to help him take sponge baths because he didn't have the strength to lift his arms. The pain in his leg was excruciating for him, he could not bear weight on it at all. I didn't think I needed to take him back to the ER because they seemed so nonchalant about his injury and that he just needed some rest and to follow up with his PCP.

On the day of his appointment with his PCP, it was also the day before Thanksgiving and it had been a week and a half after his fall. I called his PCP once again (this was the 4th or 5th time) and told them there was NO WAY I could get him to their office, I stressed once again that he could NOT walk and I desperately needed someone to come to my house as soon as possible. Within an hour and a half they sent a home health nurse to our door. She came in and asked a lot of questions for about an hour. She checked his pulse, she took his blood pressure, she checked his temperature and she remarked at how great his levels were. She said since it's a holiday weekend Thanksgiving being the next day, we shouldn't expect to see anyone until Monday or after and then she left. This was about 2:30, 3:00 in the afternoon. 

I fixed the kids and Donnie a meal and then about 4:30, 5:00 I went to the store to pick up a few things for our Thanksgiving meal for the next day. I returned home, did another dialysis exchange for Donnie, made dinner, we ate, we watched some TV and then it was about 10:30. I called the kids into the bedroom and told them to hang out with us for a while. Kellan cuddled with Donnie for about 20 minutes while Donnie was sitting up in the bed and Emmi cuddled with me. Then we switched and Emmi cuddled with Donnie while Kellan cuddled with me for another 15-20 minutes. We shared a lot of sweet kisses and hugs and I love you's with the kids. Then I sent the kids to watch TV in the living room because I had a horrible headache all day and wanted to rest my head for a few minutes before taking Donnie to the restroom to wash up before bed, change the sheets, do his next dialysis treatment, prep the food for Thanksgiving and go to bed myself. 

A little while after the kids left the room, Donnie was still sitting up in the bed and after a couple minutes he half turned his head toward me and said very calmly and kind of thoughtfully, "I feel funny". I asked him what was wrong and he said he didn't know. I asked him if he was hungry, if he was thirsty, if he needed some medicine, if he wanted some ice, if he needed me to do anything, and each time he answered "No". I asked him if he was okay, if he was sure there wasn't anything I could do for him and he said "No, I'll be alright. No, I'm fine". I asked him if it was okay if I closed my eyes for a few minutes to try to get rid of my headache and he said sure, so I did. 

A couple of minutes later, he layed down beside me from his sitting position, facing me. I had my head buried under my pillow and was pressing my temples and my eyes, trying to get rid of my headache. When he layed down, I peeked from under the pillow and through my fingers at him to make sure he was okay. He looked relaxed. Then I ducked back under the pillow and continued to press my pressure points. 

Within the next minute or so, he was snoring. And I breathed a sigh of relief. Because if he was awake, I was always on alert. I knew at any moment I may have to jump up and get him something, or help him to the bathroom, or grab a vomit bucket or do whatever it was he needed. But when he slept, that was the only time I could truly relax. So I remember very vividly, sighing aloud and thinking to myself 'Oh thank you God, he's sleeping. Now I can relax a few minutes and maybe get rid of this headache before I have to get up and do our bedtime routine'. So I relaxed. I chilled. I pressed my pressure points. And I breathed another sigh of relief.

It was probably within about 10 or 15 minutes, when Donnie exhaled in a very long, low and deep way. I chuckled, because over the last couple of weeks he had been doing some really hilarious stuff in his sleep. He would have these very vivid dreams and he would talk, he would sing, he would hum, he would giggle... it was just so funny. I would often capture it on video, show it to him later when he woke up and we would have a good laugh. Then he exhaled again, the same way. I peeked at him through my fingers from under my pillow again and said, Donnie? He did it again and I thought, 'This is weird', put my hand out and rubbed his arm and said 'Donnie? Honey, wake up'. 

And that's about the time I realized something might be wrong. That's as far as I'll go in detail here. But basically, after another moment of trying to wake him and checking his pulse on his BP cuff, I realized he had stopped breathing. And a few hours later is when I knew he was really gone.

So that's it. It happened so fast. Yes, he had so many health issues. Yes, he had diabetes. Yes, he was in renal failure and on dialysis. But his diabetes was largely under control. His dialysis was going well. His blood pressure, pulse, temperature and fluids I monitored multiple times daily and none of it was out of wack. The home health nurse had been there not even 10 hours before and all his levels were great. 

His death certificate reads 'cardiac arrest' as the cause of death. His heart was checked with EKG's regularly (about 2-3x a year) by the clinic, just 2 months before when he had the surgery that enabled him to do the home dialysis, and the Sunday prior when we went to the ER after his fall they checked it there as well and every time he had it checked, they all said "Your heart is great!" which was always a reassurance to us because it was one of the few areas nothing was wrong.

No autopsy was done due to Donnie's extensive health history. So we don't 'actually' know what took place. It could hypothetically be attributed to anything. Any one of his more serious health problems you could probably make a case out of and go with that, or say it was a combo of all of the above. But in my opinion, this is what I think happened. I think that Donnie had a blood clot travel from his severely bruised and blood filled injured leg to his heart in that small space of time after the kids left the room from our cuddling session. I believe that's why he "felt funny" and couldn't describe the problem to me. I know I'm not a doctor and I have nothing to prove that, but it's what I believe because all his stats were consistently good to great throughout the dialysis log I kept and confirmed by the home health nurse that very afternoon. It happened so quickly, in a matter of minutes and I honestly can think of nothing else that would suddenly cause his death even in the midst of all his other health issues. Nothing else makes sense to me. So that's what I believe; it was a blood clot.

For the longest time, all I could remember was the moment of his death, his last breaths that I didn't know were his last breaths. It haunted me. Oh how it haunted me. But now that I'm mostly past that, what I remember most is his face. His sweet peaceful face. There was no pain on his face. No anxiety or distress. No discomfort or displeasure. His expression when I looked at him was one of sweet sleep and peacefulness. He looked as if he layed down to take a nap and fell asleep, which is exactly what he did. And that is the moment that I choose to keep with me, to carry with me. I believe he didn't suffer pain when he passed, because if he had, he would have told me in those moments I was questioning him. I believe that although it may have been distressing for me to lose him, for him it was peaceful in those moments, and for that I am so very, very thankful. 

Tomorrow's Blog: The Aftermath, Part 1: The Surreal Whirlwind - An inside glimpse into our journey of the days following Donnie's death.