Good and Bad News
It's going to be a long day at the hospital for Alyssa. She had labs drawn at 8:30 am, followed by her twice weekly meeting with the transplant team. With the exception of her Phosphorus (down to .7 from .9) her results were very good. However, the Phosphorous is so that low that it will need to be corrected through a four hour transfusion. This is probably what caused Lyss to feel so bad on Sunday. Right now she is Radiology getting a catheter placed in her chest after which she will need a couple hours to recover and eat (fasting since midnight,) then right back to the Cancer Center for the transfusion. Not the ideal way to spend the day after feeling so lousy yesterday.
Due to all of the blood draws and transfusions she has received over the past 21 months, her poor veins are almost impossible to locate, hence the need for a catheter. We won't know what type they have chosen until she is in recovery. It will need to provide access for both blood draws and transfusions and most importantly, be able to stay in place for several months. More on this later.
Lyssa Facts
87.7 million to 1 - the odds of getting a-HUS in the United States - but she still hasn't won the lottery
dd
Monday, November 8, 2010
Sunday, November 7, 2010
Wrong on Both Counts
Today wasn't better than yesterday and I'm not done with the dreaded toolbox...so much for yesterday's predictions. It's hoped that both are just temporary setbacks.
Lyss has had a blue, funky day, just feeling blah! It may be the residual effects of doing too much over the past couple of days. She's had plenty of visitors and probably too little rest, so today we quarantined her to the couch with total control of the remote. Apprehension over tomorrow's catheter placement is also weighing heavy on her mind. Even though she has been through more procedures than she can remember, the thought of being cut open again so soon is not high on her to do list. Hopefully this will be the last one for awhile! She also has labs drawn and meets with her doctors, so it will be another long day in the hospital. But at days end, she'll be back home with us, which is always a good day.
Questions? Use our comment area to ask any questions you may have on the transplant or a-HUS in general.
dd
Lyss has had a blue, funky day, just feeling blah! It may be the residual effects of doing too much over the past couple of days. She's had plenty of visitors and probably too little rest, so today we quarantined her to the couch with total control of the remote. Apprehension over tomorrow's catheter placement is also weighing heavy on her mind. Even though she has been through more procedures than she can remember, the thought of being cut open again so soon is not high on her to do list. Hopefully this will be the last one for awhile! She also has labs drawn and meets with her doctors, so it will be another long day in the hospital. But at days end, she'll be back home with us, which is always a good day.
Questions? Use our comment area to ask any questions you may have on the transplant or a-HUS in general.
dd
Saturday, November 6, 2010
Saturday Night
One of my favorite baseball writers, Buster Olney, always ends his articles with the line - And today will be better than yesterday. I can't think of better way to describe Alyssa's progress...everyday she feel better, stronger and more optimistic about what lies ahead. Her labs continue to amaze her doctors, but its her family and friends that notice the biggest difference. The smile, spunk and zest for life that disappeared in January 09, are on the way back. Our old Lyss is slowly, but steadily reappearing.
Yesterday she ventured out of the house, albeit in a wheel chair, to find some clothes to fit her new trim figure (-20 lbs) and to pick up a few items at Bed, Bath & Beyond. Her donor, Jennifer and her family joined us for dinner last night, which was the first time that they have reunited since Jen left the hospital. It was fun to listen to the two of them share their "war stories" relative to their surgeries and follow-up care. Jen reports that it really feels like there is an empty spot where her kidney used to be, but that she is recovering nicely. It was a very special night!
Tonight a bunch of Alyssa's friends came over for pizza, wings and game playing.
I apologize for not posting since Wednesday. To be honest, I needed a break, but that wasn't the only reason - In typical Deffenbaugh style, we appear to have bit off more than we can chew. We have been trying to get our house ready to list and sell (a process that we started before we knew the transplant date) and have unearthed numerous projects that we are certain will make our house the one that everyone wants to buy. However, I'm done watching the HGTV channel, making non-stop trips to Lowes and pretending that I know which tool to use...well at least until tomorrow when the Realtor comes by for a tour and evaluation. By the way...do you ever wonder why we fix up our homes so that someone else can move in and enjoy them?
Back tomorrow with more on the medical side including a new Question & Answer section.
Set those clocks back!
dd
Yesterday she ventured out of the house, albeit in a wheel chair, to find some clothes to fit her new trim figure (-20 lbs) and to pick up a few items at Bed, Bath & Beyond. Her donor, Jennifer and her family joined us for dinner last night, which was the first time that they have reunited since Jen left the hospital. It was fun to listen to the two of them share their "war stories" relative to their surgeries and follow-up care. Jen reports that it really feels like there is an empty spot where her kidney used to be, but that she is recovering nicely. It was a very special night!
Tonight a bunch of Alyssa's friends came over for pizza, wings and game playing.
I apologize for not posting since Wednesday. To be honest, I needed a break, but that wasn't the only reason - In typical Deffenbaugh style, we appear to have bit off more than we can chew. We have been trying to get our house ready to list and sell (a process that we started before we knew the transplant date) and have unearthed numerous projects that we are certain will make our house the one that everyone wants to buy. However, I'm done watching the HGTV channel, making non-stop trips to Lowes and pretending that I know which tool to use...well at least until tomorrow when the Realtor comes by for a tour and evaluation. By the way...do you ever wonder why we fix up our homes so that someone else can move in and enjoy them?
Back tomorrow with more on the medical side including a new Question & Answer section.
Set those clocks back!
dd
Wednesday, November 3, 2010
Best Day Yet!
It was a very good day for Alyssa, in fact, the best in a very long time. It started with a typical "Alyssa move." She called Strong and told them that she'd enough procedures in the last week and didn't want to go through with the scheduled surgery to place her home catheter in her neck. Luckily, they agreed that she could wait until next week--she did have some persuasive arguments that her body needed to heal and she had not really had any good days since the surgery, with blood transfusions and stomach issues, etc., in addition to recovering from the surgery itself. So, she had a break and was able to just go to the hospital and get her blood checked. She will still go tomorrow for the Soliris treatment, but they will do it through an i.v. instead of a catheter. That is how the first infusion was done prior to surgery. Even though she is a difficult "stick," the phlebotomist managed to get her blood without her even feeling it. She wants her to transfer to the infusion area for tomorrow!
Alyssa managed to go for a walk outside today and walked back up to 6-1600 to say hello to her favorite nurses, especially Mrs. Olsen who so patiently answered a million questions for Alyssa both before and after surgery! She also ran into Staples for a new folder for all her new medications (dad's wasn't pretty enough), stopped at mom's office and now has three friends over helping her wash and blow dry her hair. A very full day on day 8 post surgery! Walking through the hospital today, with her not knowing the route, seemed really weird, but very thrilling. This has hung over her head for so long and everyone has worked so hard to get her to this point, it just doesn't seem real yet. We dismantled her PD machine and all of the paraphernalia that goes with it. We still have about 40 boxes of fluid in our basement that we will donate to free up lots of space!! Even with all of these physical changes, and Alyssa's 12 visits to relieve her bladder a day, it is hard to believe we have made it to this point. It is really an awesome display of humanity (in the form of Jen's complete selflessness and unbelievable generosity), medical advances (transplant and Soliris) and perseverance (Alyssa).
It is always a little awkward to brag about our children publicly, but we wouldn't be telling the whole story if we didn't acknowledge our daughter's bravery in going through all she has faced since January 2009 to date. She rarely complains and has very seldom shed any tears. I'm embarrassed to say that she sailed through this with much more grace and fortitude than I could ever have mustered. She is truly amazing and has learned so much about what is important in life, as well as the practical lessons this nightmare has taught her. She has now become her own advocate, learned the PD process, (which she took to like a fish to water even though it is too complex for the majority of dialysis patients to use), learned to give herself shots every 2 weeks and to keep track of a multitude of medications for high blood pressure and kidney disease, as well as doctor appointments, and even managed to be the number one fundraiser for the Kidney Foundation in 2009, and one of the top fundraisers this year. She even spoke in front of our church earlier this year and explained about a-HUS and her kidney disease. She hopes to become an advocate for peritoneal dialysis and help others get through difficult times and believes that she can use this experience to benefit others, and turn a negative to a positive.
Watching her interact with her friends and be her chatty and energetic self is such an indescribable high ----it gives us hope that our Alyssa is back to herself again. She spent so many months having no energy and being nauseated and unable to go out and enjoy life at what should have been a very precious and exciting time in life. Thankfully she has gained from the experience. As someone said to me, this is the stuff of what life has to offer at its fullest--the best and the worst. I am optimistic that the worst is behind us and thankful that the best has brought us to this point!! Thanks for sharing these highs and lows with us and supporting us through it all.
Deb
Alyssa managed to go for a walk outside today and walked back up to 6-1600 to say hello to her favorite nurses, especially Mrs. Olsen who so patiently answered a million questions for Alyssa both before and after surgery! She also ran into Staples for a new folder for all her new medications (dad's wasn't pretty enough), stopped at mom's office and now has three friends over helping her wash and blow dry her hair. A very full day on day 8 post surgery! Walking through the hospital today, with her not knowing the route, seemed really weird, but very thrilling. This has hung over her head for so long and everyone has worked so hard to get her to this point, it just doesn't seem real yet. We dismantled her PD machine and all of the paraphernalia that goes with it. We still have about 40 boxes of fluid in our basement that we will donate to free up lots of space!! Even with all of these physical changes, and Alyssa's 12 visits to relieve her bladder a day, it is hard to believe we have made it to this point. It is really an awesome display of humanity (in the form of Jen's complete selflessness and unbelievable generosity), medical advances (transplant and Soliris) and perseverance (Alyssa).
It is always a little awkward to brag about our children publicly, but we wouldn't be telling the whole story if we didn't acknowledge our daughter's bravery in going through all she has faced since January 2009 to date. She rarely complains and has very seldom shed any tears. I'm embarrassed to say that she sailed through this with much more grace and fortitude than I could ever have mustered. She is truly amazing and has learned so much about what is important in life, as well as the practical lessons this nightmare has taught her. She has now become her own advocate, learned the PD process, (which she took to like a fish to water even though it is too complex for the majority of dialysis patients to use), learned to give herself shots every 2 weeks and to keep track of a multitude of medications for high blood pressure and kidney disease, as well as doctor appointments, and even managed to be the number one fundraiser for the Kidney Foundation in 2009, and one of the top fundraisers this year. She even spoke in front of our church earlier this year and explained about a-HUS and her kidney disease. She hopes to become an advocate for peritoneal dialysis and help others get through difficult times and believes that she can use this experience to benefit others, and turn a negative to a positive.
Watching her interact with her friends and be her chatty and energetic self is such an indescribable high ----it gives us hope that our Alyssa is back to herself again. She spent so many months having no energy and being nauseated and unable to go out and enjoy life at what should have been a very precious and exciting time in life. Thankfully she has gained from the experience. As someone said to me, this is the stuff of what life has to offer at its fullest--the best and the worst. I am optimistic that the worst is behind us and thankful that the best has brought us to this point!! Thanks for sharing these highs and lows with us and supporting us through it all.
Deb
Tuesday, November 2, 2010
Rough Ride Today
Alyssa has had a rough time today, spending most of her time riding the "Porcelain Bus." Unfortunately, this seems to be a common side-effect for almost all of her meds. As a result, the doctors want her to back off on a couple of them; and, to avoid dehydration, she will have to increase her intake of fluids. We all know what that does to her, so it doesn't look like she will be getting of the bus any time soon.
Jan and Michelle, from the Kidney Foundation, stopped by this afternoon for a visit and presented Lyss with a special "transplant necklace." She was very happy to see both of them.
Sadly, due to today's issues, tonight's visiting hours have been cancelled. We hope to reopen for business tomorrow.
The Deff boys are off to Buffalo tonight for Dave Matthews. Alyssa will be there in spirit. We're hoping that she can make the Madison Square Garden concert later this month.
dd
Jan and Michelle, from the Kidney Foundation, stopped by this afternoon for a visit and presented Lyss with a special "transplant necklace." She was very happy to see both of them.
Sadly, due to today's issues, tonight's visiting hours have been cancelled. We hope to reopen for business tomorrow.
The Deff boys are off to Buffalo tonight for Dave Matthews. Alyssa will be there in spirit. We're hoping that she can make the Madison Square Garden concert later this month.
dd
A Day of Rest
Nothing like a day at home! No tests or procedures today, so Alyssa gets to spend a day resting and catching up on missed TV shows recorded on her DVR. Yesterday's labs were very good - with Crit leading the way, staying strong at 30. She does have some phosphorous issues, but they are regulating that through pills. There was some concern that the surgeon took out the pic line. This was put in to provide easy & quick access for Alyssa's Soliris infusions. Due to all she has been through, she has incredibly small veins, which requires the IV Team be called in to place the line each time. So to ease the process, she will have a tunnel catheter placed in her chest tomorrow afternoon. This will be the third catheter she has received in a little over a week. This one should be good for several months.
Blood pressure today has been running high again - 156/114. It may take a little while to get the proper meds and doses to bring this under control.
Lyss had several visitors last night and mom & dad joined in by cracking open a new bottle of wine to celebrate - I can't remember a drink ever tasting better!
Baseball fans - 109 days to Pitchers & Catchers report to Spring Training!
dd
Blood pressure today has been running high again - 156/114. It may take a little while to get the proper meds and doses to bring this under control.
Lyss had several visitors last night and mom & dad joined in by cracking open a new bottle of wine to celebrate - I can't remember a drink ever tasting better!
Baseball fans - 109 days to Pitchers & Catchers report to Spring Training!
dd
Monday, November 1, 2010
A Message from Alyssa
Hello everyone; I figured it was time for me to write something on the blog so here it goes. It's Alyssa by the way! :) This morning was a rough morning to say the least, had to wake up at 7am to go to the clinic for a blood draw and to meet with doctors, which was hard because I was so tired from being up all night, PEEING! :) No complaints here. It may sound weird to say, but I LOVE TO PEE! haha. Anyway the doctors said everything looks good as of now, which was wonderful news, even though all I wanted to do was go home and sleep! So I finally got home around 12:30 and spent almost an hour trying to figure out these meds. It's unreal. There are at least 30 individual pills that I take at 9:00am and again at 9:00pm and a whole bunch more in between. I don't know how people do this without help considering it took me, my mom and my dad to figure it all out! But I got them down, without pleasure. They are not pleasant pills. Anyway I'm getting tired so I just wanted to come on here and say Hi and thank you to everyone for all the prayers and thoughts sent my way. I really do believe there is a higher power and he helped me through this because everyone was asking him to. I am so grateful to have had this opportunity and I have so much trouble putting it into words how to thank Jen but she is an AMAZING person, who was willing to go through hell just to make me feel better. She is so wonderful and I wish I could show her my thanks, but there just aren't words. SO Jen (& Mike, Luis & little Leana, I know this has been hard on you too) I LOVE YOU, and you truly are my hero and a gift from god. I hope you feel better soon, and we will forever have a bond and tie that most people will never know. We actually call the kidney LBJ (Little Bit of Jen). And let me tell you all, this is one good working kidney, it pee's all day and night and my levels are almost TOO good. Love you Jen, you're the best!! Anyway, it's time for me to lay down, this is exhausting. Friends on the TV, and sleep sleep sleep!! Hope to see you all soon! :)
-Alyssa
-Alyssa
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