Ok, this turned out to be a lot more difficult than I imagined. I promised that part two on Barbara would be concerning her health as it worsened over the years. I have been trying to write this for a week now. I have written and then deleted several writings. This took me out of my regular way of writing, which is to just write what is in my mind and let it flow. I tried to be precise but at the same time convey the emotions and feelings that the two of us went through as we began down this road that would lead to surgeries and end with her passing. I can't do both those styles. I have decided to just write from my heart, use my emotions and throw in the visions of memories of Barbara as she put up a long fight to get well. It hurts to write about this and may sound jumbled up and it might not even make sense. What needs to be understood is that right now, after the last 5 months which involved losing not only Barbara, but my good friend Jim, his daughter Lori, my father and my Uncle Dale, this period of time has been extremely confusing, fast moving, and terribly sad. I will do my best for you though.
Barbara had a heart murmur for as long as she could remember. I think she just assumed she had it all of her life. Maybe she did. It was her aortic valve that had the mummer but it was a small one and the doctors were not really concerned about it. They kept an eye on it through the years and it just seemed to be a small problem that she would more than likely have throughout her life. What brought us to July 23, 2018 was much more than a heart situation. It was a combination of health issues that she had to deal with as the years ticked by.
So I guess we can say her health issues started with that pesky mummer. Other things about Barbara that would come into play as far as her health was that she was very small. She stood all of 4ft-10in. It wasn't only her height that was small but she had extremely small arteries. When she was in her mid thirties, she developed type two diabetes. She was very good at taking care of her diabetes. She kept her diet under control and took all of her medications to keep the diabetes under control. During this time she was a tiny bit obese but not bad at all. She kept everything under control. She was very active, keeping moving all the time and had a pretty healthy social life by way of the church and her high school classmates. She took courses at local colleges and was very good at managing the office of the firm where she worked. When Brett joined our family, she took off work to raise Brett, which kept her very active. After Brett was in his teenage years, she returned to work and was able to work without any problem.
Around 2005 or so, her body started to change. It was her back. Her spine started to fuse together slowly. As the spine hardened it began to curve forward, bending her over just slightly, not enough that you would really notice. The fusing of the spine did start to cause her pain though and the pain continued to increase as the fusing of the spine progressed. Eventually they tried to give her a shot for the pain thinking they could manage it that way, however the spine was so hardened and fused that they could not get a needle in to give her the shot. They ruled out surgery for some reason but right now I can't remember the reasoning behind that. She tried several things to try to loosen her back and ease the pain. She joined an excersize club and that work for awhile but as the spine continued to deteriorate, it slowly became too difficult for her to continue. She tried acupuncture at one point but that had no effect on the pain at all. She eventually went to a massage therapist once or twice a week and that did seem to loosen the back just enough to relieve the pain just enough for her to continue on. Eventually, the massage ceased to have an effect on the back as it steadily got worse.
Eventually her back had her hunched over to the point where she had to start using a cane to keep her balance. The fusion of her spine continued up on into her neck and before long she could not raise her head, lower her head, or turn it from side to side. Basically her entire spine was fused and hardened and unable to move. As the spine got worse, the pain increased. She started using heat pads on her back and the heat would help ease the pain a little bit. She finally got a TENS unit where I would place four electrodes on her lower back on either side of the spine and run the small electrical pulses through the muscle around her spine for about 15 minutes before bed when the pain was especially bad on certain days. When she got to this point she could not walk very well at all and was using the cane constantly.
In 2011 or 2012, sometime during that period, she began having small chest pains and it was becoming more difficult for her to be active without becoming fatigued. Her doctor referred her to a cardiologist and after taking some tests, they discovered that she had a couple of partially blocked arteries. She went in the hospital and they inserted two stents to open up the arteries. This was when it was discovered how small her arteries actually were. The stents eased the chest pains a little but the fatigue was still an issue. Her back and neck were totally fused by this time and she became pretty compromised. It was about this time as well that her diabetes began to catch up with her and she began to retain water which caused her to gain weight which had an effect on her fatigue.
She continued to worsen over the next four years. She never let on how much pain she was in or how tired she felt all the time. When she was out in public, she always had a smile on her face and she was "pretty good". I saw a different side though. I saw her consistently getting less and less mobile. I saw her ability to do things being stifled. Soon we ended moving anything she might need down to a bout three feet off the floor. The kitchen floor became her can goods shelf. In the bedroom, the bed, her desk, the top of the dresser became her closet. I tried to be there as much as I could to get her things she couldn't reach.
Then in late 2015, after having some tests done, they diagnosed that her aortic valve was failing. One of the leaves in the valve was disintegrating and her heart was not pushing enough blood through her heart to the rest of her body. As the blood flow decreased, she began to show the effects of not enough blood to her brain. It had minor effects but if you spent time with her, you could tell that she was having trouble with her memory. The fatigue continued to increase and they finally told her she needed a valve replacement. The date was set for January of 2016 to replace the valve.
We went and checked into the hospital early on that January day and she was taken to be prepped for surgery. It was to be open heart surgery. After hours of prepping her, they discovered she had a small infect in one of her fingers. The surgery was called off and rescheduled until after her infection had been cleared up by antibiotics. The next date was set for February, but after a week of testing to be sure she was healthy enough for surgery, her blood sugars stopped it. The antibiotics had messed them up and so now it was a race to get her diabetes back under control.
Finally, March 6th of 2016 was set as the date for the surgery. The day came and once again it was early morning when we arrived at St. Luke's. She was taken in and prepped. Things seemed to be going as planned. They called me back to the prep room to spend some time with her before she went to surgery. I watched as she was wheeled off into the operating room. It wasn't long before a nurse came to me in the waiting room and informed me the surgeon wanted to see me. She assured me that everything was ok. The surgeon informed me that they had decided that the open heart option was too risky to take. Her short stature and fused spine made it extremely difficult and dangerous to try to get to the heart through open heart surgery. They had pulled her out of the operating room with out even making an incision.
However there was a new option that was brand new and you had to qualify to have it done. It was called a TAVR, or trans aortic valve replacement. This was just coming out of the testing stage and was being used as an option to those not able to have the open heart option. It involved taking a pig valve, or tissue valve, through her groin and running it through her arteries to the heart where it would be placed inside the failing valve and then opened up sealing it in place and giving her a new valve.
They decided to keep her in the hospital for a week to be sure she was healthy enough to have the TAVR. During this time they took her into surgery one afternoon to place a stent in an artery that was partially clogged. After a week in the hospital the day finally arrived for her to get a new valve.
The surgery went very well. They had to use the smallest size valve that there was because her arteries were so small, but it worked. That evening, the surgeon came in to talk to her, He informed her that they were going to try to get her up and walking the next day if they could. Both of us were kind of doubtful if this would happen. But the next afternoon, the nurses came in to see how well she could walk with the new valve. All day long I was noticing how her coloring was better in her face. She kept saying how she didn't feel very tired all day long. She slowly got up and made her way to the hall. The nurse handed the cane to her and told her to try to walk and see how she felt. What happened next simply amazed me. Barb took off walking at a brisk pace up the hallway. The nurses were standing back with me watching but not for long. They had to take off to stop her and turn her around back towards her room. I stood there with what must have been a huge grin as I watched her power her way back up the hall. Again the nurses had to catch up with her as she passed her room and stop her so she could get back and sit in the chair to rest. She insisted she was okay but the nurses made her rest anyway. She was amazed herself. She had not felt this good in years. No fatigue whatsoever. She was still bent over with the fused spine but she had her cane and she could be mobile without any problems at all. It truly was amazing. She was out of the hospital and back home within three days of getting the new valve.
The timing was perfect. A month or so after her surgery, I broke my leg while taking the dog out at night one evening. I was helpless. I ended up going in for surgery to put plates in my leg and was sidelined for several weeks. She was healthy enough to help me through my own recovery.
The new valved held up for quite awhile after that but not long enough. through the year of 2017 and into 2018, she began to start feeling fatigued again. The staff at St. Luke's were trying everything to think of to keep her going. She did a trial study for new drugs that would treat her diabetes and at the same time keep her heart working. She went through cardio-rehab for a second time and graduated. She continued to try to walk up and down the street, but the distance she was able to walk became less and less. The fatigue was coming back slowly but surely.
Wow. Stopping to take a breath from writing and reread this discombobulation of words and I apologize for the poor writing. Please be patient with me. this is not an easy write so far.
You know, I think this enough writing for one post. The tale of her last surgery may be long, or it could be short. I am not sure how I will write it. It definitely will be the hardest thing I ever wrote about her and I want to get it right. So lets just finish it here for now knowing that her first valve was failing and it would take another surgery to replace it. A very risky surgery.
Thank you for your patience with me on this.
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