Unless you have lived it through it, it's very hard to understand the emotional highs and lows that accompany almost every day for someone living through aHUS; and in Alyssa's case, the additional issues that come with a transplant associated with aHUS.
Take today for example...it started normally, Lyss felt good when she got up and had a great time hosting Jennifer, Michael & Leana this morning. Then just like that, things changed this afternoon. First her labs results came back with some issues regarding White Blood Cell count (14.0,) Red Blood Cell count (3.6,) and a variety of other hematology variances. The imunosuppressants may be raising havoc here, but to be safe, they will do a "virus panel"
tomorrow to see if there are any underlying issues at play. When Lyss asked her coordinator if she should be worried, she got a "not yet" for a response. Gulp!
Then, while watching TV, Lyss felt a little out of sorts, which always sends us running for the blood pressure cuff - 158/110 with a pulse of 120. Not good numbers, so back on the phone to the coordinator who increased her blood pressure meds immediately and for the near future. It's been an hour now, and her pulse has started to come down.
These may seem like a couple of minor issues, the problem for Lyss is that almost every day is filled with bumps in the road like these. She has a significantly compromised immune system now due to the imunosuppressants and the Soliris, so each irregularity has to be watched carefully to ensure that it isn't a precursor to some thing major. Our hope is that the further we get from the transplant date, the fewer the issues. She also will learn to address some of the issues on her own as she becomes more familiar with them.
To say that we are proud of how she handles these situations would be a gross understatement! She calmly makes the calls to the appropriate medical source and takes whatever action is needed. She has very successfully worked to bring an order and calmness to each day. Not dwelling on the negative and trying to look for the positives in her situation. Sounds simple/easy right? Try living every day walking on the edge of cliff, never quite sure when something will send you over the edge; or, working with doctors that are the some of the best at what they do, but can't really tell us what our expectations should be due to the uniqueness of this disease. And do Mom & Dad handle it? Probably not as well. Speaking for myself, every time that I'm not with them in the hospital or clinic, and a get a call from Deb, my heart sinks into my stomach and stays there until I'm reassured that all is well. Again, a feeling that you would have to live through to understand. It sucks - for everyone involved. But we will fight through every little blip, praying and hoping that better days are on the horizon for Lyss.
dd
Wednesday, November 10, 2010
Nice Day at Home
No procedures on Tuesday, but that didn't keep Alyssa at home. She went over to Rochester General Hospital for a social visit with Dr Kouides and his hematological team that were instrumental in getting her to where she is now. While falling just short of a ticker-tape parade, hugs and smiles were everywhere! We are so thankful for all that this special group of people have done for Lyss. A bond has been formed that will last a lifetime.
Today will hopefully bring another day of rest before returning to the hospital tomorrow for a Soliris treatment and clinic visit. Let's hope that this one is under Monday's 14 hour day!
dd
Today will hopefully bring another day of rest before returning to the hospital tomorrow for a Soliris treatment and clinic visit. Let's hope that this one is under Monday's 14 hour day!
dd
Monday, November 8, 2010
Monday Night - 7:00pm
Changing of the Guard
Deb and I have switched places and now I'm with Alyssa at URMC as she continues the infusion process. It typically takes six hours, but we're not sure what kind of rate they have her on, so it could be as late as 10:00pm till she is finished. Unfortunately, she can't trade places with anyone, for a much needed break. This will be at minimum a 12 hour day and could go as high as 14. But we're looking at these as "steps forward" toward her goal of regaining her life.
As most of you know, I started writing these posts when Alyssa fell ill in 2009. It was a way for us to keep everyone informed as well as provide me with an outlet for emotions, frustrations and quite honestly, fears. With a blog, you never quite know who your audience is, but hope that you are providing information that's interesting as well as informative. Our source site, Blogspot has now added a feature that allows us to track geographically where our readers are located. Over 1,000 are scattered throughout the US, but a large number of followers are from Japan, Canada, Germany, Russia, Ecuador (cousin Lisa,) Singapore, Spain UK, etc. Our assumption is that they are searching Soliris and hitting on our site. Alyssa's and two other similar a-HUS/Soliris transplants (Brandi in Iowa & Jose in Spain) are being watched very closely by both the medical community and families dealing with this awful disease from around the world.
A toast - May the information that we bring you continue to trend positive and the list of successful transplant names grow longer!
dd
Deb and I have switched places and now I'm with Alyssa at URMC as she continues the infusion process. It typically takes six hours, but we're not sure what kind of rate they have her on, so it could be as late as 10:00pm till she is finished. Unfortunately, she can't trade places with anyone, for a much needed break. This will be at minimum a 12 hour day and could go as high as 14. But we're looking at these as "steps forward" toward her goal of regaining her life.
As most of you know, I started writing these posts when Alyssa fell ill in 2009. It was a way for us to keep everyone informed as well as provide me with an outlet for emotions, frustrations and quite honestly, fears. With a blog, you never quite know who your audience is, but hope that you are providing information that's interesting as well as informative. Our source site, Blogspot has now added a feature that allows us to track geographically where our readers are located. Over 1,000 are scattered throughout the US, but a large number of followers are from Japan, Canada, Germany, Russia, Ecuador (cousin Lisa,) Singapore, Spain UK, etc. Our assumption is that they are searching Soliris and hitting on our site. Alyssa's and two other similar a-HUS/Soliris transplants (Brandi in Iowa & Jose in Spain) are being watched very closely by both the medical community and families dealing with this awful disease from around the world.
A toast - May the information that we bring you continue to trend positive and the list of successful transplant names grow longer!
dd
Monday at 2:30pm
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
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
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
Subscribe to:
Posts (Atom)
