One of my friends on Facebook (who happened to be one of my college roommates) nudged me the other day and told me that it was time to update my blog.
To be honest, I just haven't felt like it. I received bad news once again on August 15, and between that and school starting without me, it's been rough.
My viral count dropped from 1,300 to 720, but still not good enough. I'm really tired of getting bad news followed by the phrase, "You're getting closer!" Ugh!
Meanwhile, a few things have happened that have kept me going:
1. At the end of July, I finally got a calling in our new ward. I was called to be the Relief Society secretary. This is a good fit for me, as it's not too demanding, but will keep me busy and involved. I'm grateful to have something to do.
Our bishop called me the week before school started and asked if I'd be able to help a single mom who just moved here from Missouri. She came to Prescott Valley with her three children and literally the clothes on their back and what they could fit in suitcases. They took a Greyhound bus and are living with her mom. She doesn't have a car and didn't have a job. Her marriage fell apart after 20 years, and it sounds like she's had a rough life. Of her entire family, she's the only one who attends church and is the only one to graduate from high school.
I was able to take her to buy clothes and school supplies. While we shopped, she told me of her life's troubles and about her faith that things would turn around. I was so impressed by her dedication to attending church, even if she had to walk every time.
Growing up, my family didn't have a lot of money, and often received help from others. It felt really good to be in a position that I could reciprocate that help. Talking to her also made me realize that even though I am having health issues right now, I am truly blessed. I came home with a happy heart and felt like things were looking up. I was feeling pretty sorry for myself prior to this experience. When talking to my mom, she told me to look for someone to help and that would help eliminate the "wallowing in pity." I'm grateful that our bishop was inspired to ask me to help.
2. The following Sunday, I was called to be the Stake Primary Music Leader. I'm so excited for this calling. During the 20 years Gordon and I have been married, I think I've been in the Primary 15 of those years. I love the children, and music is such an important part of teaching the Gospel.
3. I've registered and enrolled in 9 credit hours of graduate courses in Human Relations/Educational Psychology. Working towards a Master's degree is something I've been needing to do for a while, and I thought I might as well be productive in this year I'm off work. The good news is that I don't start until October 24, and I'm doing all of the classwork online. I'm REALLY hoping that I'll be post-transplant by then and can focus on the work.
4. Ian is doing a great job getting up for seminary every morning. He works hard at football from 2-6, then comes home and does homework before getting to bed. Some days I know he's really tired, but he gets up at 5 am and is ready to go on time. He's had some difficult health issues himself...we've tried treating these terrible warts on his fingers for a year or so now and finally gave up and took him to the dermatologist. He's had three "freezing" treatments, and we're making progress, but each visit is so painful for him. He's also been battling an ingrown toenail for about six weeks, and it eventually became pretty infected. We took him to his pediatrician who sent us to a podiatrist. It's looking 100% better, but the podiatrist told us it may come back. We'll keep an eye on it. It's been fun to be a football mom...we decorated the lockers before their first game this past Wednesday, and I enjoy being Gordon's cheerleader for a change.
5. Courtnie has started the fifth grade off well. She's running for class representative on the student council at her school, and will find out on Monday how she did. She's also started piano again and will be playing soccer for the first time starting next month. She continues to be her goofy, silly self and makes me smile every day.
6. The new band director at BMHS asked me to write the drill for the third song. I agreed, and hope I can do a good job. If it works out, maybe I can put myself out there as a drill writer. I paid someone else $1000 to write our show last year...If I can write a few of those each year, it would help. I'm not sure what next year will hold for me. I can't anticipate any band director openings, so I'm not sure what I'll be doing. I really don't want to sub for the rest of my life! :)
I've been reading The Happiness Project, by Gretchen Rubin. It has made me really evaluate how I act towards others and how I feel in general. One of the "rules" she makes for herself is, "Act how you want to feel." I never feel great, but I have found that when I smile and am happy, I tend to forget how lousy I feel. It's something I'm going to try and work harder at, and I know it will help. It hasn't been easy this week, as I've felt so incredibly lousy, but I'm starting to feel human again and am anxious to put her suggestions to work.
A couple of silly experiences with Ian:
1. We were eating dinner at Buffalo Wild Wings last Friday. The kids went and played a game that gave them a bouncy ball as a prize. Ian and Courtnie were rolling it across the table, and that led to bouncing it across the table. Ian remembered the "bounce the ball in the cup" challenge from the TV show "Minute to Win It." He swears he didn't mean to do it, but with one bounce the ball ended up in Gordon's water cup. We all laughed so hard...well, all of us but Gordon.
2. The next night Ian loaded the dishwasher and started it up. He then came in to my room and we were chatting, as we like to do just before bed. After about 20 minutes, he went to bed, and on the way noticed that there was white foam all over our kitchen floor. He had put dish washing detergent in BOTH cups of the dishwasher, along with the dishwasher tablet we use. He thought we would be so proud of him for making the dishes extra clean. Instead, Ian and I spent the next hour cleaning up soap bubbles that kept pouring out of the dishwasher. After it ran a complete cycle, the bubbles subsided, and we were able to go to bed. Ian was desperately sorry, but I thought it was a great bonding moment, and now he knows the difference between "dish washing" and "dishwasher" soap. :)
So, we're still playing the waiting game. I get tested again on September 9, and should find out results on the 12th or 13th. I continue to be hopeful. After the last disappointing news, I told Gordon that if I could just understand WHY I must continue to wait, I would be okay. I just don't get it, and don't know if I ever will. I just have to continue to pray for strength to endure and the faith to accept what comes.
Friday, August 26, 2011
Wednesday, August 3, 2011
The Girl Who Cried "Transplant"
There once was a girl who lived in a small town. This town was pretty boring, and most days were pretty uneventful. This girl had been dealing with health problems for the majority of her life, including some major circulation problems as a result of the radiation treatments she had as a child. She tried and tried to have them resolved in a non-invasive way, to no avail.
Her vascular surgeon suggested that she have a major operation to correct this issue. She would have an artificial graft put into her abdomen that would bypass her damaged aorta. This was done in December 2009. Two days after her surgery, her surgeon informed her that her kidneys had shut down and she would need to start dialysis. He assured her that this happened on occasion, and often times the problem would resolve itself after a couple of weeks of dialysis treatments. When she began treatments on December 25, 2009, she also was informed that she had Hepatitis B, which she would find out later causes some other complications.
After being released from the hospital in Phoenix, she began dialysis treatments in Phoenix three times a week. These treatments made her very sick. She ended up in the hospital several times over the next year or so...often times to deal with extreme dehydration and high blood pressure. She even had a couple of seizures as a result of the extreme blood pressure. (Her highest was 190/120.) She lost 50 pounds, (something she needed to do anyway, but not THAT way!) and was very weak. She was given several priesthood blessings, including one from her bishop that promised her that she would be restored to health.
After about six months of treatments, her nephrologist asked her if she wanted to be worked up for a kidney transplant. She decided to proceed with the testing at Mayo Clinic and was approved to be a transplant candidate in July 2010. Her brother and sister both offered to donate a kidney to her, and it was decided (by means of "Rock, Paper, Scissors") that her sister Michelle would get worked up first.
Meanwhile, the girl had been taking anti-viral medications to get rid of the Hepatitis B virus. The medicine made her very sick, and she doubted that it was working at all. It took five months, but the virus was finally undetectable and she was good to go for transplant.
Michelle came to Mayo Clinic and went through all kinds of testing. The girl stayed with her sister the entire time, and was so grateful that she was willing to go through this for her. Her sister was approved as a match, and the transplant was scheduled for November 19, 2010. The girl went in to Mayo for her pre-surgery testing, which included a CT scan of her kidneys, as she had had kidney cancer in 2008, and they wanted to make sure she was cancer-free. While her kidneys were deemed cancer-free, they discovered that her aorta and bypass graft were once again blocked, and would need to be repaired before the transplant could occur.
The girl was devastated. She felt she had gone through the entire last year of dialysis and being so sick for nothing. The surgery that started this whole thing was a failure. The vascular surgeon at Mayo agreed to do a stent procedure on November 18, so that the transplant could occur as planned on November 19.
The stent procedure was successful, and she was in ICU recovering and making necessary preparations for the next day's surgery when she woke up with severe pains in her right leg. The surgeon came in around 3:00 a.m. and took one look at the bottom of her feet (which were black and blue) and said that she had what is called "trash foot." It turns out that all of the crud that was blocking my aorta came loose when the stent was placed, and it sent all of it--the plaque, clots, and other materials--down my leg and to my feet. They would need to do emergency surgery to "roto-rooter" the artery in her leg. The surgeon also told her that the transplant could not take place. She called her husband, cried so hard, and told him to tell her sister that everything was off.
She ended up staying in the hospital for several days while they monitored her circulation for any other blood clots. They told her that the transplant would need to be postponed for at least three months to give her arteries time to heal and grow stronger. Meanwhile, she was given Coumadin and Plavix to thin her blood and avoid any dangerous clots.
In February, she saw the surgeon again and was cleared for transplant. The transplant was rescheduled, and plane tickets were bought. When she went in for her pre-surgery tests (again) she was told that they would do another Hepatitis B check, just to be sure. When she was called and told that her levels were higher than they'd ever been, she was confused. She was under the impression that once the virus was undetectable, she was good. She didn't realize that she'd need to be on these meds for the rest of her life. So, the transplant was postponed yet again.
March, April, May and June came and went. Surgery dates scheduled, hopes were high, only to be dashed time and time again. She was beginning to wonder what she had done wrong, why she was being punished, and what she could do better. Fast Sunday in June was a special day. Her whole family, and a lot of friends fasted for her and that the transplant could finally take place. She felt completely at peace, and felt confident that the surgery would take place on June 14. This was also her final chance for the transplant if she wanted to return to teaching in August. She went for her pre-surgery testing AGAIN and was so confident that all would be well. When she was called on June 11 and told that her level was still at 10,000, she was--once again--devastated.
The liver specialist increased her dose again, and she was tested on July 12. This time her count was at 1,300...a huge improvement, but not where it needs to be. (It needs to be at zero.) She feels so silly, and doesn't even know how to respond to her sister when she calls to tell her the bad news. She's just numb.
She will get tested again on August 12, and is so hopeful that things will be good. If the count went from 10,000 to 1,300 in one month, surely it can go down to zero in another month. But, as one of her nurses told her, "Well, it is YOU!" Who knows.
She is sure people are tired of hearing that the date is so close. She is sure people just don't even know what to say anymore. She feels very much like the boy who cried wolf, just to get the attention of his small town.
She goes through times in her life where she is fine. She is grateful for the opportunity she has to go to dialysis, for she knows it keeps her alive. She is so grateful for her sweet husband and amazing children who have stood by her and taken care of her through all of this. She is grateful for all of her family who pray for her and love her. She is able to keep going and keeps her chin up, even though things are tough.
She also goes through times where she gets down. She wonders if the transplant is ever going to happen. She can't stand sitting in the chair at dialysis for one more minute. She counts down the minutes until she can go home. She dreads the thought of going, smelling the bleach/vinegar smell, and the headache that will follow treatment.
She is sure that there is a reason for all of this. She just wishes she knew what it was. Band camp started last week, and she is so sad that that part of her life is over. Someday she will understand.
Her vascular surgeon suggested that she have a major operation to correct this issue. She would have an artificial graft put into her abdomen that would bypass her damaged aorta. This was done in December 2009. Two days after her surgery, her surgeon informed her that her kidneys had shut down and she would need to start dialysis. He assured her that this happened on occasion, and often times the problem would resolve itself after a couple of weeks of dialysis treatments. When she began treatments on December 25, 2009, she also was informed that she had Hepatitis B, which she would find out later causes some other complications.
After being released from the hospital in Phoenix, she began dialysis treatments in Phoenix three times a week. These treatments made her very sick. She ended up in the hospital several times over the next year or so...often times to deal with extreme dehydration and high blood pressure. She even had a couple of seizures as a result of the extreme blood pressure. (Her highest was 190/120.) She lost 50 pounds, (something she needed to do anyway, but not THAT way!) and was very weak. She was given several priesthood blessings, including one from her bishop that promised her that she would be restored to health.
After about six months of treatments, her nephrologist asked her if she wanted to be worked up for a kidney transplant. She decided to proceed with the testing at Mayo Clinic and was approved to be a transplant candidate in July 2010. Her brother and sister both offered to donate a kidney to her, and it was decided (by means of "Rock, Paper, Scissors") that her sister Michelle would get worked up first.
Meanwhile, the girl had been taking anti-viral medications to get rid of the Hepatitis B virus. The medicine made her very sick, and she doubted that it was working at all. It took five months, but the virus was finally undetectable and she was good to go for transplant.
Michelle came to Mayo Clinic and went through all kinds of testing. The girl stayed with her sister the entire time, and was so grateful that she was willing to go through this for her. Her sister was approved as a match, and the transplant was scheduled for November 19, 2010. The girl went in to Mayo for her pre-surgery testing, which included a CT scan of her kidneys, as she had had kidney cancer in 2008, and they wanted to make sure she was cancer-free. While her kidneys were deemed cancer-free, they discovered that her aorta and bypass graft were once again blocked, and would need to be repaired before the transplant could occur.
The girl was devastated. She felt she had gone through the entire last year of dialysis and being so sick for nothing. The surgery that started this whole thing was a failure. The vascular surgeon at Mayo agreed to do a stent procedure on November 18, so that the transplant could occur as planned on November 19.
The stent procedure was successful, and she was in ICU recovering and making necessary preparations for the next day's surgery when she woke up with severe pains in her right leg. The surgeon came in around 3:00 a.m. and took one look at the bottom of her feet (which were black and blue) and said that she had what is called "trash foot." It turns out that all of the crud that was blocking my aorta came loose when the stent was placed, and it sent all of it--the plaque, clots, and other materials--down my leg and to my feet. They would need to do emergency surgery to "roto-rooter" the artery in her leg. The surgeon also told her that the transplant could not take place. She called her husband, cried so hard, and told him to tell her sister that everything was off.
She ended up staying in the hospital for several days while they monitored her circulation for any other blood clots. They told her that the transplant would need to be postponed for at least three months to give her arteries time to heal and grow stronger. Meanwhile, she was given Coumadin and Plavix to thin her blood and avoid any dangerous clots.
In February, she saw the surgeon again and was cleared for transplant. The transplant was rescheduled, and plane tickets were bought. When she went in for her pre-surgery tests (again) she was told that they would do another Hepatitis B check, just to be sure. When she was called and told that her levels were higher than they'd ever been, she was confused. She was under the impression that once the virus was undetectable, she was good. She didn't realize that she'd need to be on these meds for the rest of her life. So, the transplant was postponed yet again.
March, April, May and June came and went. Surgery dates scheduled, hopes were high, only to be dashed time and time again. She was beginning to wonder what she had done wrong, why she was being punished, and what she could do better. Fast Sunday in June was a special day. Her whole family, and a lot of friends fasted for her and that the transplant could finally take place. She felt completely at peace, and felt confident that the surgery would take place on June 14. This was also her final chance for the transplant if she wanted to return to teaching in August. She went for her pre-surgery testing AGAIN and was so confident that all would be well. When she was called on June 11 and told that her level was still at 10,000, she was--once again--devastated.
The liver specialist increased her dose again, and she was tested on July 12. This time her count was at 1,300...a huge improvement, but not where it needs to be. (It needs to be at zero.) She feels so silly, and doesn't even know how to respond to her sister when she calls to tell her the bad news. She's just numb.
She will get tested again on August 12, and is so hopeful that things will be good. If the count went from 10,000 to 1,300 in one month, surely it can go down to zero in another month. But, as one of her nurses told her, "Well, it is YOU!" Who knows.
She is sure people are tired of hearing that the date is so close. She is sure people just don't even know what to say anymore. She feels very much like the boy who cried wolf, just to get the attention of his small town.
She goes through times in her life where she is fine. She is grateful for the opportunity she has to go to dialysis, for she knows it keeps her alive. She is so grateful for her sweet husband and amazing children who have stood by her and taken care of her through all of this. She is grateful for all of her family who pray for her and love her. She is able to keep going and keeps her chin up, even though things are tough.
She also goes through times where she gets down. She wonders if the transplant is ever going to happen. She can't stand sitting in the chair at dialysis for one more minute. She counts down the minutes until she can go home. She dreads the thought of going, smelling the bleach/vinegar smell, and the headache that will follow treatment.
She is sure that there is a reason for all of this. She just wishes she knew what it was. Band camp started last week, and she is so sad that that part of her life is over. Someday she will understand.
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