Tuesday, February 9, 2010
We've Moved to New Site
For the latest on Alyssa, please go to our new site - caringbridge.org. Alyssa's site name is under "alyssadeffenbaugh".
Saturday, January 16, 2010
It's Been a Year!
Last Thursday night marked the one year anniversary of the beginning of Alyssa’s journey to the abyss and back. We gathered at a local watering hole with several of Alyssa’s friends to toast how far she has come and to hoping for a transplant and good health in the coming year…Alyssa, of course, had a “Shirley Temple.”
January 14, 2009…Alyssa had been sick for several days so some precautionary blood tests were ordered by her GP, whom she was seeing for the first time as a new patient. At 7:00 pm we received a call informing us that the lab work looked abnormal and that it would be best for us to go to an ER. We assumed that she was dehydrated and was just going in to receive some fluids. She walked in with her mom, had some tests, actually shared a lot of laughs with Deb as they waited through the night…then came the words that changed all of our lives forever – “You have a very sick daughter who may not make it through the day.” So began a year of ups and downs with still more questions than answers.
Alyssa spent nearly three months in and out of the Intensive Care Unit, including four days in a coma. She received over thirty plasma pheresis treatments; countless dialysis treatments and numerous blood transfusions. She is in end-stage renal failure (no function) and now receives daily treatments at home through Peritoneal Dialysis (PD). Her lab results were at levels that most of her doctors and nurses had never seen before. Blood pressure ran as high at 220/175 and as low as 70/50. She has been on over 20 different drugs to treat her high blood pressure (currently on 5 for blood pressure and 5-6 other ones to maintain levels of phosphorous, potassium, etc.) and lost close to 40 pounds.
We haven’t updated Alyssa’s Blog recently, so here’s where we are today. Alyssa has been diagnosed with Atypical Hemolytic Uremic Syndrome (HUS) a disease normally seen in children under the age of 10, and extremely rare, with less than 300 patients in the USA. Unlike regular HUS, Atypical HUS is not caused by an external agent (such as a bacteria, virus etc.) Instead, some sort of internal chain of events sets the disease off, and the syndrome becomes active. Due to being so rare, the syndrome is still not well understood. In many cases, it has been identified as a genetic problem due to an irregularity in several suspect genes. In other cases, the disease appears out of nowhere. This is called an "idiopathic" cause. Idiopathic causes are believed to possibly originate from a mutated gene, but not one that has yet been identified, as this is all a developing science. All testing to date tells us that Alyssa’s HUS was triggered due to genetic defect she carries in the “I” gene. This is not a mutation that the experts have seen lead to A-HUS before, but the computer programs that predict these things found a moderate likelihood.
There is no cure for Atypical HUS. In fact, there isn’t even a standard treatment, as each case is different. Plasma Pheresis with blood transfusions has worked best for Alyssa’s treatment. Atypical HUS is a lifetime illness, with the fear of complications always hanging over the patient’s head. These complications may be:
• Recurrence
• Kidney failure
• Seizures/Neurological problems
• No response to supportive treatments
• Return of HUS even after kidney transplant occurs
• Severe Hypertension (high blood pressure)
While kidney failure may be the most obvious characteristic of this disease, the disease does not originate in the kidney. Instead, the root of the problem originates in either the blood or the vascular system. Microangiopathic hemolytic anemia occurs. Basically this means that the red blood cells are shattered and destroyed, because the small blood vessels are obstructed. Obstructed by what? Good question. The blood vessels are obstructed by very small clots. These clots occur when platelets rush to a site to stop bleeding. However, in Atypical HUS patients, the platelets begin aggregating in areas where they are not needed. These tiny clots usually are not the same type of clots that can go to the heart or the brain, because they are too small to do any damage there. But they are just the right size to get caught in the renal system, thereby damaging and in Alyssa’s case, destroying her kidneys. The good news is that Alyssa’s HUS has been under control since February, but unfortunately her kidneys are likely to never recover.
Even though the HUS is not active, everyday is a challenge for Alyssa as her medical team tries to find the most effective ways to deal with all the issues that are created when someone loses their kidneys. Her blood pressure continues to rise and fall; potassium & phosphorous levels are all over the map; basic blood labs are continuously out of the norm; she is exhausted all of the time; and must deal with the depression that naturally comes to anyone that has seen their life change as much as Alyssa’s has.
Okay, for those of you that haven’t fallen asleep or returned to your Facebook page, where do we go from here? A kidney transplant is our next order of business. However, before we can proceed with a transplant, Alyssa’s doctors need to have confidence that if the HUS were to return following a transplant, that they would have a way to effectively treat it. In the coming weeks, Alyssa will be going to the University of Iowa to meet with a team of doctors that are considered to be the best in the country when dealing with HUS. The Iowa doctors, in conjunction with Alyssa’s Rochester physicians, will then develop a plan of attack addressing transplantation and the other issues that Alyssa faces. We are both excited and cautiously optimistic as we approach the coming weeks. Stay tuned!
It has been an incredibly difficult year, one that no parent ever wants to see their child go through. Alyssa had never had anything more serious than your everyday illnesses. She had never had blood drawn. Her most feared test was a throat culture, because it always made her gag. In 2009 she went through more invasive tests than most people will go through in a lifetime. She has had blood drawn so many times that her veins are starting to collapse, forcing her nurses to find new entry sites. She hooks herself up every night to her dialysis machine for a nine hour treatment. Everything in our bodies is in balance naturally but as anyone knows who has suffered serious medical issues, once that balance is lost, it is a constant struggle to regain. Sometimes her blood pressure is way too high, other times, way too low. Her fluid levels are either too high or too low, then affecting her blood pressure levels, and if her dialysis is too little or too much, everything else gets affected. She feels nauseated much of the time and is unfortunately exhausted most of the time as well. Phosphorous, potassium and calcium levels are always a struggle to maintain at good levels. She maintains daily logs of all her meds, BP readings and dialysis data. Our little girl grew up and grew up fast. We so hope for her that she can someday live a normal life. Whenever I hear the Les Miserable’s song, I Dreamed a Dream, sung most recently by Susan Boyle, the line “I had a dream my life would be so different from this hell I’m living,” I can’t help but think of Alyssa. We do have strong faith that this nightmare will end and firmly believe she will be able to move on, unfortunately with other challenges post- transplant, but at least not connected to a machine.
As parents, Debbie and I couldn’t be prouder of Alyssa. She has faced this head-on and done everything that has been asked of her. She could have just given in to this horrific disease, but she didn’t. This has become a daily battle that has forever changed her life. Alyssa has had to endure so much, but has seldom complained. She has been everything that a parent could hope for and more. Alyssa – we all love you and we’ll be there to support you in every way we can.
Together, we will get through this!
January 14, 2009…Alyssa had been sick for several days so some precautionary blood tests were ordered by her GP, whom she was seeing for the first time as a new patient. At 7:00 pm we received a call informing us that the lab work looked abnormal and that it would be best for us to go to an ER. We assumed that she was dehydrated and was just going in to receive some fluids. She walked in with her mom, had some tests, actually shared a lot of laughs with Deb as they waited through the night…then came the words that changed all of our lives forever – “You have a very sick daughter who may not make it through the day.” So began a year of ups and downs with still more questions than answers.
Alyssa spent nearly three months in and out of the Intensive Care Unit, including four days in a coma. She received over thirty plasma pheresis treatments; countless dialysis treatments and numerous blood transfusions. She is in end-stage renal failure (no function) and now receives daily treatments at home through Peritoneal Dialysis (PD). Her lab results were at levels that most of her doctors and nurses had never seen before. Blood pressure ran as high at 220/175 and as low as 70/50. She has been on over 20 different drugs to treat her high blood pressure (currently on 5 for blood pressure and 5-6 other ones to maintain levels of phosphorous, potassium, etc.) and lost close to 40 pounds.
We haven’t updated Alyssa’s Blog recently, so here’s where we are today. Alyssa has been diagnosed with Atypical Hemolytic Uremic Syndrome (HUS) a disease normally seen in children under the age of 10, and extremely rare, with less than 300 patients in the USA. Unlike regular HUS, Atypical HUS is not caused by an external agent (such as a bacteria, virus etc.) Instead, some sort of internal chain of events sets the disease off, and the syndrome becomes active. Due to being so rare, the syndrome is still not well understood. In many cases, it has been identified as a genetic problem due to an irregularity in several suspect genes. In other cases, the disease appears out of nowhere. This is called an "idiopathic" cause. Idiopathic causes are believed to possibly originate from a mutated gene, but not one that has yet been identified, as this is all a developing science. All testing to date tells us that Alyssa’s HUS was triggered due to genetic defect she carries in the “I” gene. This is not a mutation that the experts have seen lead to A-HUS before, but the computer programs that predict these things found a moderate likelihood.
There is no cure for Atypical HUS. In fact, there isn’t even a standard treatment, as each case is different. Plasma Pheresis with blood transfusions has worked best for Alyssa’s treatment. Atypical HUS is a lifetime illness, with the fear of complications always hanging over the patient’s head. These complications may be:
• Recurrence
• Kidney failure
• Seizures/Neurological problems
• No response to supportive treatments
• Return of HUS even after kidney transplant occurs
• Severe Hypertension (high blood pressure)
While kidney failure may be the most obvious characteristic of this disease, the disease does not originate in the kidney. Instead, the root of the problem originates in either the blood or the vascular system. Microangiopathic hemolytic anemia occurs. Basically this means that the red blood cells are shattered and destroyed, because the small blood vessels are obstructed. Obstructed by what? Good question. The blood vessels are obstructed by very small clots. These clots occur when platelets rush to a site to stop bleeding. However, in Atypical HUS patients, the platelets begin aggregating in areas where they are not needed. These tiny clots usually are not the same type of clots that can go to the heart or the brain, because they are too small to do any damage there. But they are just the right size to get caught in the renal system, thereby damaging and in Alyssa’s case, destroying her kidneys. The good news is that Alyssa’s HUS has been under control since February, but unfortunately her kidneys are likely to never recover.
Even though the HUS is not active, everyday is a challenge for Alyssa as her medical team tries to find the most effective ways to deal with all the issues that are created when someone loses their kidneys. Her blood pressure continues to rise and fall; potassium & phosphorous levels are all over the map; basic blood labs are continuously out of the norm; she is exhausted all of the time; and must deal with the depression that naturally comes to anyone that has seen their life change as much as Alyssa’s has.
Okay, for those of you that haven’t fallen asleep or returned to your Facebook page, where do we go from here? A kidney transplant is our next order of business. However, before we can proceed with a transplant, Alyssa’s doctors need to have confidence that if the HUS were to return following a transplant, that they would have a way to effectively treat it. In the coming weeks, Alyssa will be going to the University of Iowa to meet with a team of doctors that are considered to be the best in the country when dealing with HUS. The Iowa doctors, in conjunction with Alyssa’s Rochester physicians, will then develop a plan of attack addressing transplantation and the other issues that Alyssa faces. We are both excited and cautiously optimistic as we approach the coming weeks. Stay tuned!
It has been an incredibly difficult year, one that no parent ever wants to see their child go through. Alyssa had never had anything more serious than your everyday illnesses. She had never had blood drawn. Her most feared test was a throat culture, because it always made her gag. In 2009 she went through more invasive tests than most people will go through in a lifetime. She has had blood drawn so many times that her veins are starting to collapse, forcing her nurses to find new entry sites. She hooks herself up every night to her dialysis machine for a nine hour treatment. Everything in our bodies is in balance naturally but as anyone knows who has suffered serious medical issues, once that balance is lost, it is a constant struggle to regain. Sometimes her blood pressure is way too high, other times, way too low. Her fluid levels are either too high or too low, then affecting her blood pressure levels, and if her dialysis is too little or too much, everything else gets affected. She feels nauseated much of the time and is unfortunately exhausted most of the time as well. Phosphorous, potassium and calcium levels are always a struggle to maintain at good levels. She maintains daily logs of all her meds, BP readings and dialysis data. Our little girl grew up and grew up fast. We so hope for her that she can someday live a normal life. Whenever I hear the Les Miserable’s song, I Dreamed a Dream, sung most recently by Susan Boyle, the line “I had a dream my life would be so different from this hell I’m living,” I can’t help but think of Alyssa. We do have strong faith that this nightmare will end and firmly believe she will be able to move on, unfortunately with other challenges post- transplant, but at least not connected to a machine.
As parents, Debbie and I couldn’t be prouder of Alyssa. She has faced this head-on and done everything that has been asked of her. She could have just given in to this horrific disease, but she didn’t. This has become a daily battle that has forever changed her life. Alyssa has had to endure so much, but has seldom complained. She has been everything that a parent could hope for and more. Alyssa – we all love you and we’ll be there to support you in every way we can.
Together, we will get through this!
Thursday, October 1, 2009
Kidney Walk a Big Success!
I had hoped to have the final totals for last Saturday's Kidney Walk for this week's update, but as of this morning they are still counting the pledges (which is probably a good sign.) It was a great event, but before we get into the details, I'll give you a quick "medical" update.
Yesterday, (Wednesday) saw us make an unexpected trip to the doctors office. Lyss had been battling cold symptoms for several days including a cough and sore throat but no fever. That changed yesterday when she awoke with a fever of 100 degrees. Now for most of us,a low grade fever is just a small inconvenience. However, for Alyssa, it can be life threatening as she doesn't have the strength or immune system to fight off even small infections. Add in the concerns that the H1N1 virus brings to the table and it's off to the doctor we go. After a few precautionary tests, she was sent back home with orders for bed rest and plenty of fluids. Another bullet dodged! This is one part of her illness that Lyss has not yet come to terms with. She doesn't understand why her doctors insist on seeing her for situations such as this, but Mom and Dad are both thankful that they do. Ah yes, yet another parent/child conflict.
Kidney Walk:
On Saturday, September 26th, several hundred walkers, including 20+ on Alyssa's, Team Prayer Bear, participated in the annual Kidney Foundation Walk. The Walk took place at Seneca Park and included a stroll through the Zoo. Funds raised are used to promote awareness of kidney disease, assist those requiring treatment, fund research and promote the need for transplant donors. In future updates I'll delve a little more into each of this areas.
Team Prayer Bear? The name comes from the Ty "Prayer Bear" Beanie Baby that Lyss has had for at least 12 years. Nightly, it can be found wrapped around her index finger and has been ever since she got it. It also never left her side throughout her hospital stays. As her her friends can attest, Lyss never goes anywhere without it. In January, Prayer Bear took on a whole new meaning after Alyssa became sick. She firmly believes that the power of prayer helped get her to where she is today! Team Prayer Bear...the perfect name!
The Kidney Foundation had set a Walk goal of $85,000 and as of today, had raised just over $80,000, with still more pledges to be counted. Alyssa's team goal was $3,000, which was exceeded ($4,100 to-date) with Lyss personally raising in excess of $2,700, making her the highest individual fund raiser! You Rock Lyss!
It's not to late to make a pledge. Click this link which will take you to Alyssa's Walk page. Team Prayer Bear is currently only $300 behind the top team! 100% of your donations go to fighting this awful disease.
Thank you to all of you for your tremendous support of Team Prayer Bear, and of course, for your never ending support of Alyssa.
Yesterday, (Wednesday) saw us make an unexpected trip to the doctors office. Lyss had been battling cold symptoms for several days including a cough and sore throat but no fever. That changed yesterday when she awoke with a fever of 100 degrees. Now for most of us,a low grade fever is just a small inconvenience. However, for Alyssa, it can be life threatening as she doesn't have the strength or immune system to fight off even small infections. Add in the concerns that the H1N1 virus brings to the table and it's off to the doctor we go. After a few precautionary tests, she was sent back home with orders for bed rest and plenty of fluids. Another bullet dodged! This is one part of her illness that Lyss has not yet come to terms with. She doesn't understand why her doctors insist on seeing her for situations such as this, but Mom and Dad are both thankful that they do. Ah yes, yet another parent/child conflict.
Kidney Walk:
On Saturday, September 26th, several hundred walkers, including 20+ on Alyssa's, Team Prayer Bear, participated in the annual Kidney Foundation Walk. The Walk took place at Seneca Park and included a stroll through the Zoo. Funds raised are used to promote awareness of kidney disease, assist those requiring treatment, fund research and promote the need for transplant donors. In future updates I'll delve a little more into each of this areas.
Team Prayer Bear? The name comes from the Ty "Prayer Bear" Beanie Baby that Lyss has had for at least 12 years. Nightly, it can be found wrapped around her index finger and has been ever since she got it. It also never left her side throughout her hospital stays. As her her friends can attest, Lyss never goes anywhere without it. In January, Prayer Bear took on a whole new meaning after Alyssa became sick. She firmly believes that the power of prayer helped get her to where she is today! Team Prayer Bear...the perfect name!
The Kidney Foundation had set a Walk goal of $85,000 and as of today, had raised just over $80,000, with still more pledges to be counted. Alyssa's team goal was $3,000, which was exceeded ($4,100 to-date) with Lyss personally raising in excess of $2,700, making her the highest individual fund raiser! You Rock Lyss!
It's not to late to make a pledge. Click this link which will take you to Alyssa's Walk page. Team Prayer Bear is currently only $300 behind the top team! 100% of your donations go to fighting this awful disease.
Thank you to all of you for your tremendous support of Team Prayer Bear, and of course, for your never ending support of Alyssa.
Monday, September 21, 2009
Please Support Alyssa thru Kidney Walk Pledges!
I aplogize to those of you that have received this message thru multiple channels. I want to leave no stone unturned!
This is a "shameless" plea for you to support Alyssa this weekend as she walks in the National Kidney Foundation's Kidney Walk. This event will be held at the Seneca Park Zoo on Saturday and all funds raised will go the the Rochester Area Kidney Foundation to aid with awareness, research and in assisting those that require services, but are unable to afford them. Alyssa believes strongly in this group and what it does for those with kidney disease. She has assembled the second biggest group of walkers and is listed as third for total dollars raised. With your help, we may be able to push her up to #1!
If you would like to make a pledge, please click on the following link, which will take you directly to the Walk site. Pledges made by 9/22/09 count toward Alyssa's total. Pledges after the 22nd still go to the grand total of the walk. http://walk.kidney.org/site/TR?px=1368054&fr_id=1730&pg=personal
Again, thanks for the support shown Alyssa throughout this awful disease that she has been forced to battle.
Dave
This is a "shameless" plea for you to support Alyssa this weekend as she walks in the National Kidney Foundation's Kidney Walk. This event will be held at the Seneca Park Zoo on Saturday and all funds raised will go the the Rochester Area Kidney Foundation to aid with awareness, research and in assisting those that require services, but are unable to afford them. Alyssa believes strongly in this group and what it does for those with kidney disease. She has assembled the second biggest group of walkers and is listed as third for total dollars raised. With your help, we may be able to push her up to #1!
If you would like to make a pledge, please click on the following link, which will take you directly to the Walk site. Pledges made by 9/22/09 count toward Alyssa's total. Pledges after the 22nd still go to the grand total of the walk. http://walk.kidney.org/site/TR?px=1368054&fr_id=1730&pg=personal
Again, thanks for the support shown Alyssa throughout this awful disease that she has been forced to battle.
Dave
Tuesday, September 15, 2009
What Alyssa Did on Summer Vacation
Even though I'm a little old to return to school this fall, Alyssa has given me a homework assignment (what else is new)...write an essay for her blog that covers what she did over the summer and to tell you all about her involvement with the upcoming National Kidney Foundation Walk. I'll break this down into two parts - Health and Fun. Also, since there are new developments on the transplant front, I will be providing a weekly update each Monday evening for the foreseeable future. We all so appreciate the support you have shown Alyssa and our family. We could never have gotten this far without it.
Health:
For the most part, it has been a good summer for Alyssa. She has gone through some peaks and valleys with her blood work - hematocrit and platelet counts continue to take unexplained dips - but not enough to warrant a return to plasmaphersis treatments or require any blood transfusions. She has however needed to have blood draws pretty much on a weekly basis. The best news though is that there has been no sign of any HUS activity!
Her Peroteneal Dialysis has gone extremely well. She needs to hook-up to her machine each night for a nine hour treatment, but has adapted so well to the process that she is able to travel pretty much at will without any issues. PD has certainly made her life more manageable versus what she went through with hemodialysis.
We are well into the kidney transplant process at Strong Memorial. Alyssa has met with all the members of her transplant team and has begun the testing and compatibility process. The doctors have decided that with her history of HUS that they would prefer to see her receive her kidney from a live donor rather than a cadaver kidney. Assuming that we get final approval from her doctors to proceed, the transplant process will be front and center for Alyssa and all of us for the foreseeable future.
Fun:
On Sunday, July 19th, the seats were almost empty; the food venders were all closed; most of the cars in the parking lots were there to see Abby Wambach score her 100th goal down the street at Marina Stadium; and the Red Wings were out of town...but, it was a perfect day at Frontier Field for over 150 of Alyssa's most ardent supporters!
So how did we all end up here?...When Alyssa was at her worst in January and February, we promised her that if she got through this, we'd throw a party for her and her friends that she would never forget. Thankfully, Alyssa doesn't remember much of what happened during that awful period, but of course she did remember our promise. So the planning began. At first we were going to hold it at our home; we picked a date, Sunday, June 21 and Alyssa went so far as to send out Facebook invitations to her friends...but in true Deffenbaugh fashion, it was only then that we then discovered that we had chosen to hold her party on Father's Day. We know that Alyssa has a strong following, but we didn't want to go head-to-head with all of the fathers out there, so it was back to the drawing board. By this time, our list of invitees had almost doubled from the initial one, so a new venue had to be found. Those familiar with the Deff's know that we are huge fans of the game of baseball. So what better place to celebrate than Frontier Field, home of Rochester's AAA baseball team, the Red Wings. July 19th was selected after a thorough review of the calendar.
The appeal of Frontier Field has always been the baseball field (although my family spends a great deal of time at the food venders) so we used the field to host a variety of activities. We set-up a temporary softball field, placing home plate just behind second base. This configuration gave the better hitters a chance to knock one out the park, which several did. "Kids" from 4 to 40+ took part, providing us with some truly "Good, Bad & Ugly" moments. No score was kept, but everyone got to hit a few times and had the chance to run around on the field. The field also played host to numerous games of Kan-Jam, an informal home-run derby and impromptu Athena reunions. Following a picnic dinner, everyone went down on the field to watch a couple of "Alyssa videos" that were lovingly created by some of her friends and played on the big digital scoreboard. It was a great day for the Deff's and all of Alyssa's special guests!
Dan - that old saying that you'll find someone special when you're not looking sure rang true for Alyssa this summer. She was just happy to be alive and enjoying time with her family and many of her friends who had just recently returned home from college. But then along came Dan Horowitz, who had been an acquaintance for a long time, but not much more. Some how everything just clicked and fell into place. They have spent most of the summer together, traveling to Rhode Island and the Hampton's to visit with his family; spending time with us in the 1000 Islands and best of all, spending time at home playing cards and visiting with friends. They are really enjoying each others company and support! Our family has enjoyed getting to know him and his family. He treats her with the utmost of respect and has helped put smiles on her face that had been missing since she became ill. He has been a great fit with the family and Alyssa has really enjoyed spending time with his family as well.
Alyssa has been a huge Taylor Swift fan for several years now. When she heard that Taylor would be appearing in Rochester, the pressure was on to get her tickets. Thanks to good friends Jim LeBeau and Mike Davis, Alyssa and good friend Steph got their seats and to their great surprise, they were in the front row, right next to the stage! Up close and personal took on a whole new meaning for her! Oh, and the headliner wasn't bad either...Keith Urban.
And finally, what summer would be complete for Alyssa without a trip to see the Red Sox in Fenway Park. We had one last big surprise for her...seats on top of Fenway's famed Green Monster. It was a beautiful day, the Red Sox won 6-0 and Dad and Kyle were able to share the thrill of the Green Monster right along with Alyssa. The Yankees may be a better team this year, but we still love our Sox!
Alyssa is proud to be walking in the National Kidney's Foundation Walk next Saturday, Sept. 26th at the zoo. She has discovered from all too personal experience the value of her kidneys and is happy to support the cause. None of us knew just how important our kidneys are until we watched Alyssa go through all that she has with dialysis, nausea, blood pressure issues and shots to help her produce new blood--all of which her kidneys had controlled before that fateful day! We know that many young as well as older people suffer the terrible consequences that go with loss of kidney function and hope to help raise public awareness of not only these issues but all that transplantation involves The "End the Wait" campaign stresses the fact that the extremely expensive anti-rejection drugs (which unfortunately cause their own set of health issues) are often not even covered by insurance, and only by Medicare for three years when transplant recipients have to be on them the rest of their lives. Alyssa has formed one of the largest walk teams in Rochester!!! Please visit the Kidney Foundation Walk's Website and know that we appreciate any support you can give including walking with us, sponsoring our walk or even just spreading the word!! Thanks for all you have already done in supporting us in prayer and friendship.
dd
Health:
For the most part, it has been a good summer for Alyssa. She has gone through some peaks and valleys with her blood work - hematocrit and platelet counts continue to take unexplained dips - but not enough to warrant a return to plasmaphersis treatments or require any blood transfusions. She has however needed to have blood draws pretty much on a weekly basis. The best news though is that there has been no sign of any HUS activity!
Her Peroteneal Dialysis has gone extremely well. She needs to hook-up to her machine each night for a nine hour treatment, but has adapted so well to the process that she is able to travel pretty much at will without any issues. PD has certainly made her life more manageable versus what she went through with hemodialysis.
We are well into the kidney transplant process at Strong Memorial. Alyssa has met with all the members of her transplant team and has begun the testing and compatibility process. The doctors have decided that with her history of HUS that they would prefer to see her receive her kidney from a live donor rather than a cadaver kidney. Assuming that we get final approval from her doctors to proceed, the transplant process will be front and center for Alyssa and all of us for the foreseeable future.
Fun:
On Sunday, July 19th, the seats were almost empty; the food venders were all closed; most of the cars in the parking lots were there to see Abby Wambach score her 100th goal down the street at Marina Stadium; and the Red Wings were out of town...but, it was a perfect day at Frontier Field for over 150 of Alyssa's most ardent supporters!
So how did we all end up here?...When Alyssa was at her worst in January and February, we promised her that if she got through this, we'd throw a party for her and her friends that she would never forget. Thankfully, Alyssa doesn't remember much of what happened during that awful period, but of course she did remember our promise. So the planning began. At first we were going to hold it at our home; we picked a date, Sunday, June 21 and Alyssa went so far as to send out Facebook invitations to her friends...but in true Deffenbaugh fashion, it was only then that we then discovered that we had chosen to hold her party on Father's Day. We know that Alyssa has a strong following, but we didn't want to go head-to-head with all of the fathers out there, so it was back to the drawing board. By this time, our list of invitees had almost doubled from the initial one, so a new venue had to be found. Those familiar with the Deff's know that we are huge fans of the game of baseball. So what better place to celebrate than Frontier Field, home of Rochester's AAA baseball team, the Red Wings. July 19th was selected after a thorough review of the calendar.
The appeal of Frontier Field has always been the baseball field (although my family spends a great deal of time at the food venders) so we used the field to host a variety of activities. We set-up a temporary softball field, placing home plate just behind second base. This configuration gave the better hitters a chance to knock one out the park, which several did. "Kids" from 4 to 40+ took part, providing us with some truly "Good, Bad & Ugly" moments. No score was kept, but everyone got to hit a few times and had the chance to run around on the field. The field also played host to numerous games of Kan-Jam, an informal home-run derby and impromptu Athena reunions. Following a picnic dinner, everyone went down on the field to watch a couple of "Alyssa videos" that were lovingly created by some of her friends and played on the big digital scoreboard. It was a great day for the Deff's and all of Alyssa's special guests!
Dan - that old saying that you'll find someone special when you're not looking sure rang true for Alyssa this summer. She was just happy to be alive and enjoying time with her family and many of her friends who had just recently returned home from college. But then along came Dan Horowitz, who had been an acquaintance for a long time, but not much more. Some how everything just clicked and fell into place. They have spent most of the summer together, traveling to Rhode Island and the Hampton's to visit with his family; spending time with us in the 1000 Islands and best of all, spending time at home playing cards and visiting with friends. They are really enjoying each others company and support! Our family has enjoyed getting to know him and his family. He treats her with the utmost of respect and has helped put smiles on her face that had been missing since she became ill. He has been a great fit with the family and Alyssa has really enjoyed spending time with his family as well.
Alyssa has been a huge Taylor Swift fan for several years now. When she heard that Taylor would be appearing in Rochester, the pressure was on to get her tickets. Thanks to good friends Jim LeBeau and Mike Davis, Alyssa and good friend Steph got their seats and to their great surprise, they were in the front row, right next to the stage! Up close and personal took on a whole new meaning for her! Oh, and the headliner wasn't bad either...Keith Urban.
And finally, what summer would be complete for Alyssa without a trip to see the Red Sox in Fenway Park. We had one last big surprise for her...seats on top of Fenway's famed Green Monster. It was a beautiful day, the Red Sox won 6-0 and Dad and Kyle were able to share the thrill of the Green Monster right along with Alyssa. The Yankees may be a better team this year, but we still love our Sox!
Alyssa is proud to be walking in the National Kidney's Foundation Walk next Saturday, Sept. 26th at the zoo. She has discovered from all too personal experience the value of her kidneys and is happy to support the cause. None of us knew just how important our kidneys are until we watched Alyssa go through all that she has with dialysis, nausea, blood pressure issues and shots to help her produce new blood--all of which her kidneys had controlled before that fateful day! We know that many young as well as older people suffer the terrible consequences that go with loss of kidney function and hope to help raise public awareness of not only these issues but all that transplantation involves The "End the Wait" campaign stresses the fact that the extremely expensive anti-rejection drugs (which unfortunately cause their own set of health issues) are often not even covered by insurance, and only by Medicare for three years when transplant recipients have to be on them the rest of their lives. Alyssa has formed one of the largest walk teams in Rochester!!! Please visit the Kidney Foundation Walk's Website and know that we appreciate any support you can give including walking with us, sponsoring our walk or even just spreading the word!! Thanks for all you have already done in supporting us in prayer and friendship.
dd
Monday, May 11, 2009
5/11/09 - Giving in to Facebook
Hi All,
I have been rather delinquent in creating new posts lately. Alyssa has been doing pretty good and I just didn't think that posts about daily activities dealing with Peritoneal Dialysis and this awful disease that has so changed her life, would be very interesting. How many times can you say BP up or BP down without sounding like a broken record.
All that changed last night as I was dealing with a bout of insomnia. I began thinking about how I would handle the numerous requests that I have received to be friends on Facebook, many from Alyssa's friends. I must admit to being a total Facebook novice. For a reason that escapes my mind (this happens a lot lately) my kids opened a Facebook page for me awhile back. To this day, I haven't done anything with my page as I have very little knowledge about this phenomenon and not many of my peers use it.
Doing a little investigative work, I looked at some of the sites of my new found "friends." I found out that they were playing games, going to the refrigerator for beers, taking quizzes and surveys, out walking the dog, longing for summer... all of a sudden, Alyssa updates seem to take on a nw sense of worth - I just needed to change to the "quick-hit" format employed by Facebook users. Get in, get out and in between, provide a little Alyssa update info. Photos also seem to play a big part in Facebook. Unfortunately, Blogspot isn't real "picture friendly." So with that in mind, over the next few days, I will update my Facebook page with a few photo albums of Alyssa that help tell her story. I'll post a link that will give you access to my page. While this may appear to be a to be a pathetic way to get new friends, it will open up the lines of communication for those seeking info regarding Alyssa.
Now that I have totally violated the quick-hit format by writing three set-up paragraphs, I'll give you a little info on what has happened the past week:
A new crisis hit as her liver readings were very high, with no real symptoms to support any kind of diagnosis. Follow-up blood tests have shown a decrease, so as with many of her medical issues, it will have to "remain a mystery."
This past weekend, Lyss and new friend Wendy Dandrea from Frontier Field, escorted the "Zooperstars" http://zooperstars.com/ during their performance in the Lilac parade. While she enjoyed their costumes and routines, her favorite part was getting to know the "very cute" performers. Rumour has it that she will be getting together with them when they return to Rochester in June for another performance at Frontier Field. She also tried her hand at bar tending. If you like your beer with a large head on it, Alyssa is your girl!
Last night her peritoneal tube became clogged, keeping her from doing her nightly dialysis. A trip to the dialysis center and a few "belly dance" type gyrations, got the hose in the right spot and everything flowing again. We hope that this was just a temporary issue.
Tomorrow she meets with her nephrologist to get the kidney transplant process underway. We are all excited to get her through this next big step to recovery!
And finally, in true Facebook format, I will tell you that Alyssa is now connected to her peritoneal machine which sits in her bedroom. Her TV does not work, so she has stretched the PD hose and from the hallway outside her room, she is watching the Hills on the TV in mom & dad's room. Yes, she is very creative when it comes to watching her "reality shows."
Dave is going to bed...goodnight.
I have been rather delinquent in creating new posts lately. Alyssa has been doing pretty good and I just didn't think that posts about daily activities dealing with Peritoneal Dialysis and this awful disease that has so changed her life, would be very interesting. How many times can you say BP up or BP down without sounding like a broken record.
All that changed last night as I was dealing with a bout of insomnia. I began thinking about how I would handle the numerous requests that I have received to be friends on Facebook, many from Alyssa's friends. I must admit to being a total Facebook novice. For a reason that escapes my mind (this happens a lot lately) my kids opened a Facebook page for me awhile back. To this day, I haven't done anything with my page as I have very little knowledge about this phenomenon and not many of my peers use it.
Doing a little investigative work, I looked at some of the sites of my new found "friends." I found out that they were playing games, going to the refrigerator for beers, taking quizzes and surveys, out walking the dog, longing for summer... all of a sudden, Alyssa updates seem to take on a nw sense of worth - I just needed to change to the "quick-hit" format employed by Facebook users. Get in, get out and in between, provide a little Alyssa update info. Photos also seem to play a big part in Facebook. Unfortunately, Blogspot isn't real "picture friendly." So with that in mind, over the next few days, I will update my Facebook page with a few photo albums of Alyssa that help tell her story. I'll post a link that will give you access to my page. While this may appear to be a to be a pathetic way to get new friends, it will open up the lines of communication for those seeking info regarding Alyssa.
Now that I have totally violated the quick-hit format by writing three set-up paragraphs, I'll give you a little info on what has happened the past week:
A new crisis hit as her liver readings were very high, with no real symptoms to support any kind of diagnosis. Follow-up blood tests have shown a decrease, so as with many of her medical issues, it will have to "remain a mystery."
This past weekend, Lyss and new friend Wendy Dandrea from Frontier Field, escorted the "Zooperstars" http://zooperstars.com/ during their performance in the Lilac parade. While she enjoyed their costumes and routines, her favorite part was getting to know the "very cute" performers. Rumour has it that she will be getting together with them when they return to Rochester in June for another performance at Frontier Field. She also tried her hand at bar tending. If you like your beer with a large head on it, Alyssa is your girl!
Last night her peritoneal tube became clogged, keeping her from doing her nightly dialysis. A trip to the dialysis center and a few "belly dance" type gyrations, got the hose in the right spot and everything flowing again. We hope that this was just a temporary issue.
Tomorrow she meets with her nephrologist to get the kidney transplant process underway. We are all excited to get her through this next big step to recovery!
And finally, in true Facebook format, I will tell you that Alyssa is now connected to her peritoneal machine which sits in her bedroom. Her TV does not work, so she has stretched the PD hose and from the hallway outside her room, she is watching the Hills on the TV in mom & dad's room. Yes, she is very creative when it comes to watching her "reality shows."
Dave is going to bed...goodnight.
Tuesday, April 28, 2009
4/29/09 - The Good News Continues
On Monday, Alyssa went in for her first lab work in almost two weeks, and continuing her upward swing, the results were very good! Hematocrit - 39 and platelet count - 220 which are both within the normal range. Creatinine and BUN are both outside of the norm, but that is to be expected with End Stage Renal Disease (ESRD.)
With her BP lingering around the 100/60 levels, her GP, Dr Salamone has lowered the dosage on another of Alyssa's BP meds. As mentioned before, the goal is to continue to ween her off of as many BP meds as possible. This however, will not be accomplished overnight, it will be a long term project.
As she continues to feel better each day, Alyssa was hoping to go back to work at Bed, Bath and Beyond soon, but Dr Salamone emphatically put an end to that discussion for now. She told Alyssa that among her 2,600 patients, Alyssa was by far the most critically ill over the past three months and that it will take her a while longer to recover and regain her strength. Not what Alyssa wanted to hear, but not surprising news to any of us that have observed her trial and tribulations since January.
dd
With her BP lingering around the 100/60 levels, her GP, Dr Salamone has lowered the dosage on another of Alyssa's BP meds. As mentioned before, the goal is to continue to ween her off of as many BP meds as possible. This however, will not be accomplished overnight, it will be a long term project.
As she continues to feel better each day, Alyssa was hoping to go back to work at Bed, Bath and Beyond soon, but Dr Salamone emphatically put an end to that discussion for now. She told Alyssa that among her 2,600 patients, Alyssa was by far the most critically ill over the past three months and that it will take her a while longer to recover and regain her strength. Not what Alyssa wanted to hear, but not surprising news to any of us that have observed her trial and tribulations since January.
dd
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