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.

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

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

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.

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

4/24/09 - What A Great Trip!

Greetings, we have just returned from the "Land of the Mouse." Limited access to the Internet, and, to be honest, a need to avoid thinking about medical issues, kept me from keeping you up-to-date, but all went extremely well. Alyssa loved her time in the sun and only had a few "bumps in the road" with her peritoneal dialysis treatments. Following is a recap of the week's best activities, but as one who has the attention span of a fruit fly, I'll keep it brief.

We left last Thursday, flying non-stop into Orlando. A connection free flight was a must to eliminate the possibility of getting stuck somewhere without access to her dialysis equipment and supplies. We found out quickly that traveling with a person with special needs is a very challenging proposition. We use to worry about whether we packed enough underwear and socks...now we need to focus on such things as getting dialysis supplies delivered to the hotel, where will they be stored and where do we find access to items such as a scale. The latter was procured during a midnight run to an all night CVS store. But don't worry, we all wore clean socks and underwear every day.

Our first few days were spent with Grandma Deff at her Melbourne Beach winter retreat. It was nice to just relax for a few days with visits to the beach/pool , a little shopping and a great deal of talking with grandma. She has been down here since Alyssa fell ill, so much time was spent filling her in on what Alyssa has been through.

On Saturday we switched our home base to Reunion, Florida, a small town near Disney World, to begin attending Ryan's baseball games at Disney's Wide World of Sports. Trying to avoid Disney's exorbitant prices, I hit the web and found a great deal at the Reunion Inn, a new golf resort, with three courses designed by Arnold Palmer, Jack Nicklaus and Tom Watson. For half the cost of what Disney wanted, we had a three bedroom villa that felt bigger than our house.

We attended all of Ryan's Athena games, with the team going 6-0. Ryan got to pitch in the big stadium, which is the spring training home for the Atlanta Braves. We also did a couple days in the Disney parks. The weather was perfect - warm days and cool nights - providing us with a nice respite from the chilly Rochester temperatures that we had been experiencing.

Alyssa did very well with her PD treatments. She kept in daily contact with her nurses back in Rochester, providing them with updates on her vitals and getting advice on how to handle a few issues that popped-up. Her blood pressure readings remained good throughout the trip, which prompted her doctor to eliminate clonindine from her daily meds.

The best part of the trip though was just watching Alyssa smile and laugh again. She was able to spend a week away from doctors and tests and just able to be old self again. Sun, baseball, Disney, beaches, grandma and her first real shower in three months...all the ingredients for a great week, which is exactly what it was. The only thing missing were brothers Mark and Kyle who stayed back in Rochester for Kyle's games.

We've learned over the last few months that life can be very fragile and as such, you need to make the most of every day. The past seven days were spent with this in mind and will never be forgotten by all of us.

Now back to work...it's time to start looking for a kidney!
dd

4/13/09 - PD is Going Great!

Four nights completed on Peritoneal Dialysis and everything is going great - in fact, better than planned. It's been an adjustment for Alyssa, but both her mind and body have adjusted well to being in charge of her dialysis. Her blood pressure readings continue to drop, so today her nephrologist decreased one of her BP meds and plans to do the same with others if she continues this great turnaround. The biggest issue has been getting her to eat more protein, which is a critical element of successful PD. She was sick for so long that the thought of eating any kind of meat just doesn't appeal to her at all. She is now drinking protein shakes to help fill the void.

More good news - her blood labs have continued to improve with every draw, so much so that she will be going back to Rochester General Hospital tomorrow morning to have her PermCath catheter removed! This is a big step as the catheter had been used for both hemodialysis and plasmapheresis treatments. However, both her hematologist and nephrologist are confident that she will not need either of these treatments for the foreseeable future. The risk of infection is the number one concern for patients with catheters, so removing it has always been a priority of her doctors. The one drawback (pun intended) is that all of her blood draws have been through this catheter, so Alyssa will now have to be "poked" once a week for her labs. But removing the catheter will allow her to take a regular shower, eliminate the bandage that shows through all of her clothing and most importantly, she'll be able to swim when she goes to Florida on Thursday. Oceans and chlorinated pools are okay - rivers and lakes are not.

Not all with Project Alyssa is positive today. We've tried to never give up hope that her kidneys would recover, but one of the many lessons that we've learned from this ordeal is that you have to deal with the facts as they are and react accordingly with an aggressive plan of attack.

It's been over three months now since Alyssa went into renal failure. Recovery of kidney after three months is very rare, so today her nephrologist told her that she is now classified as being in End-Stage Renal Disease (ESRD) which is defined as when the kidneys permanently fail to work. She has already shown us a miracle or two with her recovery so far, so we'll never rule out another one, but we will be moving forward.

Never wanting to end on a low-note, the good news is that we will begin the transplant process as soon as we get back from Florida. This is often a long drawn out procedure, so the sooner we begin, the better! We know that Alyssa is "one in a million," but we're confident that there is a match out there for her!
dd

4/9/09 - Passed with Flying Colors!

Alyssa successfully completed her Automated Peritoneal Dialysis (APD) training on Thursday, so she is now officially on home dialysis and in total control of her dialysis treatments. Yes, it is a scary thought, but as the "Townie" (Rob Schneider) said in the movie Water Boy..."You can do it, you can do it all night long," although we're taking a different slant on this memorable piece of movieology. But that's exactly what APD is - doing your dialysis treatments all night long as you sleep. And, we know that Alyssa can do it!

One last PD lesson for you.
APD - A- Automated: automated means that the fluid exchanges are done automatically by a machine called a "Cycler." In APD, the treatment is done at home at night while Alyssa is sleeping. If you remember in yesterday's post, we talked about CAPD, where Alyssa was required to manually perform her treatments , (up to five exchanges per day,) throughout her waking hours. With APD, she will still have five exchanges, but they will all be done by the Cycler as she sleeps.

The steps in APD are

1. Start the Cycler
2. Connect the new bags (2)
   
3. Connect Alyssa's transfer line (tube from her abdomen) to Cycler
4. The fluid exchanges are done by the Cycler during the night
5. Disconnect from the machine in the morning
6. Have a normal day!

Alyssa will need to perform APD every night and must plan on at least nine hours for all of the exchanges to be completed. There is flexibilty as to when she starts. If she gets home late at night, she will just have stay in bed a little longer the next morning to get her nine hours in - this is beginning to sound more like her life before dialysis.

APD can be performed anywhere that there is electrical power. The dialyisate flows from her body right into a five gallon jug, which can be disposed of down the toilet. It's a very complex procedure that has been brought down to it's most simple and basic level. There are patients on APD that range from new born babies to those in their nineties. As with any procedure of this nature, the number one concern is infection. However, by following the process that they have taught her, Alyssa should do just fine on APD; and we know that she will thrive on her new found independence.

Alyssa - You Can Do It!
dd

4/8/09 - Great Start!

Day one of Peritoneal Dialysis (PD) training is done, and in the books; and like the Red Sox, it's an opening day victory! Alyssa easily and successfully went through four exchanges of CAPD: Continuous Ambulatory Peritoneal Dialysis today, which is step one in her move from hemodialysis to PD. CAPD is the manual method of performing PD, where the solution exchanges are done manually at home, normally with four exchanges daily, seven days a week, by the patient.

• C- continuous: dialysis solution is always inside the “belly” cleansing the blood in a continuous manner.
• A- ambulatory: ambulatory means that between exchanges, you can move about freely and continue normal activities like going for a drive, walking, studying, sleeping or purse shopping.
  
• P- peritoneal: this type of dialysis makes use of the peritoneal membrane that covers the peritoneal cavity in order to cleanse the blood of waste products and water.
• D- dialysis: dialysis is the process of removing all wastes and excess water from the blood, in PD using the peritoneal membrane as a filter.

The process itself is very simple, with gravity pushing the new fluid into Alyssa's peritoneal cavity and the cleansed fluid out. Following are the steps that she follows for each of her four daily exchanges:

• Step 1) Attach the new bag
• Step 2) Drain: this means letting the solution go from the peritoneal cavity (by gravity) to the so-called drain bag, which takes 15-20 minutes
• Step 3) Flush: this is when the system is ‘flushed’ with unused solution for approximately 10 seconds. This ensures Alyssa is made clear of bacteria that may have entered the system when the new bag was connected
• Step 4) Fill: filling the peritoneal cavity with the new solution. This normally takes less than 10 minutes
• Step 5) Dwell time: this is when the dialysis solution is inside the peritoneal cavity between exchanges.

For Alyssa, CAPD will only be used as a back-up to APD (Automated Peritoneal Dialysis) where exchanges are done automatically by a cycler machine as Alyssa sleeps. But that's tomorrow's lesson, so back to CAPD. It's important for her to know how to perform CAPD as it will need to be used if we experience any loss of power, and we all know how often that can occur in upstate NY. Alyssa will use CAPD through Friday morning, then switch to APD on Friday night.

She did two exchanges during training then two more on her own at home this afternoon and tonight. The critical aspect of each exchange is to maintain a sterile environment around the tube that has been implanted into her abdomen. A dropped line while she is connecting or disconnecting from the solution bag could cause her a trip to the hospital; so not surprisingly, her hands were a little shaky today, but true to the task. Tomorrow she learns APD.

...and by the way, BP and blood labs continue to be great - I never get sick of saying that!

dd

4/6/09 - Lab Results

Good lab results again today so no need for plasmapheresis treatment this afternoon. Let the good times roll!
dd

4/5/09 - Peri What?

...and that magical roll just continues on and on. Another great day for BP and only a slight bout of nausea. Alyssa hasn't had a single reading over 130 for a week now! Removing this issue should help make her Peritoneal Dialysis training go much easier this week. Keep those toes and fingers crossed!

We've mentioned Peritoneal Dialysis many times, but haven't really explained how it differs from the more traditional Hemodialysis that Alyssa has been receiving since falling ill; and more importantly, how it should benefit her. So let's get stared with Dialysis 101.

Renal failure refers to temporary or permanent damage to the kidneys that results in loss of normal kidney function. There are two different types of renal failure - acute and chronic. Alyssa has acute renal failure which typically has an abrupt onset, but is potentially reversible. Chronic renal failure progresses slowly, over at least three months, and can lead to permanent renal failure. The causes, symptoms, treatments, and outcomes of acute and chronic are different.

Healthy kidneys clean your blood by removing excess fluid, minerals and toxins. They also make hormones that keep your bones strong and your blood healthy. As your kidneys fail, harmful toxins build up in your body, your blood pressure may rise, and your body may not make enough red blood cells. When this happens, you need dialysis treatments to replace the function of your failed kidneys. Dialysis removes substances such as water, salts, and waste products (from the body’s normal metabolism), which build up in patients with failing kidneys.

There are two primary forms of dialysis treatments available.

Hemodialysis (HD), is where the blood is cleaned outside the body and then returned to the body. This treatment, done in a hospital, or a dialysis clinic, is normally done 3 times a week, with each session taking about 4 hours. In HD, a machine and a filter are required, as well as a system to get the blood out of the body, and return the cleaned blood to the patient. In most patients, access to the blood is done by inserting two needles into blood vessels on the forearm. Alyssa's access is currently through her Permcatheter that is also used for her plasmapheresis treatments. But this is not a long term solution due to infection risks that are inherit with this type of catheter. Those awful needles are looming in Alyssa's future!

Peritoneal Dialysis - Continuous Cyclic Peritoneal Dialysis (CCPD) is the form of PD that Alyssa will receive. Through the use of a machine called a cycler, dialysate fluid will be instilled through a soft, hollow tube, that has been surgically placed into Alyssa's lower abdomen near the navel. The solution will remain in the cavity for several hours. During this time, waste products and excess fluid pass from the blood into the peritoneal cavity. After the completed dwell time (period the dialysis solution is in the abdomen), the solution will be drained from the cavity. This process is called an exchange. The process is repeated again three to four times per night. In theory, Alyssa will sleep through the whole process as the cycler automatically controls all the various steps. In Alyssa's case, she will need to perform CCPD every night for approximately eight hours per night.

Why switch from Hemodialysis to PD? For Alyssa there are many advantages...since she doesn't have to go to a dialysis center for treatment, CCPD gives her more control. She can do treatments at home, at work or on trips. It allows her to have a normal work schedule. It's much gentler on her body as the process is done over eight hours versus three. But, the biggest reason for Alyssa - NO NEEDLES!

She is very excited to make the change this week! We'll keep you posted as to her progress.
dd

4/4/09 - Catching-up

Things have been rather mellow with Lyss, so I took a couple days off myself; but news continues to be positive. Alyssa has flown through two dialysis treatments and almost a week now of great blood pressure readings. We still aren't sure what's caused this big change, but we're enjoying every minute of it. The icing on the cake is that her ongoing nausea has been on hiatus. She's still not eating the way we'd like, but her appetite is slowly returning and she's becoming more of a "player" at the dinner table.

Next week is going to be a big one for Alyssa. On Monday, she returns to Rochester General for the all important blood labs. Monday will also mark two weeks between plasmapheresis treatments and satisfactory labs will allow her extend this streak. On Tuesday she will have what we hope will be her last hemodialysis treatment as she is scheduled to begin her peritoneal dialysis training on Wednesday. Daily sessions will take place for the rest of the week. If all goes as expected, dialysis will become a nighttime activity undertaken from the comfort of her own bed.

Tomorrow we'll provide you with a short tutorial on peritoneal dialysis.
dd

4/1/09 - No Jokes Here

This is no April Fool's Day Joke...Alyssa has had great blood pressure levels now for 4 days running. Nary a reading above 120! I'm afraid to even say it so as to not jinx her. We are assuming that her new wonder drug, Tekturna, has caused what we call The Tekturnaround. This relatively new-to-the-market drug wasn't even available in the hospital - I had to go to Wegmans to get it filled for her. The addition of Tekturna is the only significant change that has been made in the last week, so all hail the miracle drug...may it's powers rein forever!

While it's a little early to start talking about decreasing her other BP medications, this what we ultimately would like to do as there are some nasty side-effects from some, including nausea and exhaustion. She seldom eats now and continues to sleep a vast majority of the day - two symptoms that we would love to see go away!

Other good and important news - Alyssa will begin peritoneal dialysis training on 4/7. If all goes well, that will also be the date for her last hemodialysis treatment. The peritoneal team is pushing this up so that Alyssa can go to Florida in mid-April for some much needed R&R. It is also hoped that she will tolerate peritoneal dialysis much better than she has the hemodialysis as it is much easier on the body. And, she does it at home, so no need to drive to Irondequoit anymore! YES!
dd

3/30/09 - Labs are in

Today's lab results are in and they are very good, so Alyssa has been returned to the comfort of her home for a day of relaxation. Tomorrow she will have her dressing changed and receive a regular dialysis treatment.
dd

3/29/09 - Peaceful

It's been a very quiet day of which you will hear no complaints from us. Alyssa slept till 10:00 AM, then spent a low key day at home with Debbie's side of the family. The only issue has been that her BP has been running on the low side most of the day (109/62 on average.) This isn't bad news, but it makes you wonder what causes such large swings in her readings. I'm in the process of using Excel to graph her BP readings and overlay the meds that she is taking to see if there is a pattern to the big changes.

Tonight she's at the movies with her good friend Steph and both of their moms (I Love You, Man;) then tomorrow it's back to Rochester General for blood work at 9:30 AM. If all results are within normal ranges, she will have an afternoon free of the medical profession.
dd

3/28/09 - Some Good & Some Bad

Friday - Although Alyssa came home from the hospital late Thursday, it was a quick turnaround as we had to be back at the hospital at 9:30 AM Friday for additional blood labs. Her hematocrit came up to 31 from Thursday's 24, while her platelet count remained the same, meaning she wouldn't need to have another blood transfusion or plasmapheresis treatment. While her hematologist does not believe that the HUS has returned, he does want to tightly monitor her readings through twice weekly blood labs. At this time she doesn't have any major shearing of the red blood cells which was so prominent in her first two hospitalizations; but there are still other symptoms such as the high BP, ongoing nausea and roller coaster lab results that have yet to be explained.

No required treatments meant that the road to Eastview Mall Friday afternoon was clean and green. Three Vera Bradley purchases were made, but two were by mom, so Alyssa's, never ending thirst for new purses went unquenched.

Saturday
Back to the Dialysis Center for her first treatment there since being readmitted to the hospital. We don't know what it is about this place, but it certainly does wreak havoc with her blood pressure. After several treatments in the hospital with relatively low readings, the ugly numbers were back in full force today...205/125. Also making its return was a day full of vomiting. She struggled through the 3 1/2 hour treatment only to find that her BP had dropped to 91/37 on the final reading. This usually occurs when they have taken too much fluid off her, so they extended her treatment to put back on some fluid. Her BP finally came back up (I can't believe that I'm writing about needing her BP to rise) and home she went.

Exhausted both mentally and physically, she slept for the rest of the day.

No treatments or tests of any kind tomorrow. YES!
dd

3/26/09 - 11:00 PM and...

...tucked safely in her own bed!

3/26/09 - Is She Coming or Going?

Alyssa's Biggest Supporter - Aunt Sandy

The day started with such promise. Surgery was behind her, BP levels had been at acceptable levels and even her ever present nausea seemed to be on hiatus. All we had to do was get through dialysis this morning, then home she would go home. She had made big plans for the weekend...Friday, off to Eastview Mall to go purse shopping, albeit in a wheelchair. Saturday a movie and maybe a visit with her nieces and nephew...let the good times roll!

It's 8:30 PM on Thursday and we are still in RGH. What went wrong?

Alyssa flew right through her dialysis treatment, recording the lowest BP averages that she's ever had and she even dropped below her target dry weight. So far, so good. Anticipating the pending departure, mom & dad packed up her room and sent everything off with Deb as she departed for work. Then it happened.

Fearing the wrath of Alyssa, her regular doctors sent a hospitalist physician, that we had never met before, to deliver the news that Alyssa dreaded the most. Her platelets had fallen to 180 and her HCT had dropped to 24, levels that they felt warranted a blood transfusion and another night at RGH. You could feel the air being sucked right out of the room. The purses would have to wait.

But wait, if this illness has taught Alyssa anything, it's perseverance. So when one of her regular doctors came to visit at 4:00 PM, she laid out a scenario that might let her still go home tonight. Do the transfusion in her room, go home after, but return tomorrow morning for additional lab work. If Friday's levels rise, she's free to go purse shopping. If they remain the same or drop, she will have to have a plasmapheresis treatment.

As with the Foley catheter yesterday, Alyssa again prevailed having successfully made her case (the pouty face didn't hurt either.)

Between the "type and cross," ordering the blood and the transfusion itself, getting a blood transfusion is a rather long process. She was finally hooked-up at 6:15 PM and should be done by 9:15 PM. Dare I say it, if all goes well, we could be out of here by 10:00 PM.

Watch out Eastview, there are no Dooney & Bourke, Dolce & Gabbana, Coach & Vera Bradly purses that are safe.
dd

3/25/09 - Everything Went Well!

Alyssa is back in her room after very successful peritoneal catheter implant surgery. The picture shows her in the recovery room, thrilled that this step is done and ready to move on to her peritoneal training sessions that begin in 10 days. The doctors reported that other than a spike in her BP (190/125,) the procedure went exactly as planned. Alyssa even gave them a brief moment of brevity...while in the operating room, and just prior to receiving her anesthesia, Alyssa heard Dr Kurchin ask a nurse to get a Foley catheter. Background - Alyssa was put on a Foley catheter during her first stay at Unity Hospital. To this day she says that was the most discomfort that she has felt.

Hearing the words Foley catheter caused her to raise her hand and rather emphatically say to Dr Kurchin - "I don't pee anymore and I DEFINITELY don't do Foley catheters." She prevailed!

Pending the approvals of her fleet of doctors, it is hoped that she can return home on Thursday afternoon. We are finally beginning to see a light at the end of this long, dark tunnel.

We don't say it enough, but thank you to all of you for your support. You have made a big difference in Alyssa's ability to fight through this terrible time in her life. She knows that she is not is not doing this alone!

dd

3/25/09 - Just Went Into Surgery at 4:45

With her infamous "Prayer Bear" wrapped around her thumb, Alyssa was just wheeled into the operating room. The procedure will take between one and two hours.

3/24/09 - Surgery Still On

The doctors have consulted, the testing is complete, and the patient is ready, so Mission Peritoneal is a go for tomorrow afternoon at 2:30 PM. As Alyssa is still in the hospital, it will be treated as an in-patient procedure. She will likely remain here until at least Thursday, to allow for better BP maintenance.
dd

3/24/09 - 10:30 AM

99/55 - No, that's not a March Madness score, it's Alyssa's BP this morning. We are now entering virgin territory with readings this low. We're not sure if the new meds are kicking in or if it's that the planets have all aligned in the proper formation. What makes this even more amazing is that she is the middle of dialysis, which is where we typically see her highest pressures. Not to complain, but we really don't want to see her BP remaining at this low a level, but it makes us realize that they can drive it down with the right combination of drugs.

After a very difficult day yesterday, Alyssa is feeling much better this morning. She had a rough bout of nausea on Monday that necessitated giving her Phenergan. While this is a wonderful drug, it really knocks you for loop and Alyssa ended up sleeping until 7:00 PM. As a result she didn't eat or drink anything all day, which is not good as she has already lost too much weight. She ate breakfast this morning and so far, so good.

The rescheduled from last week Peritoneal surgery is still set for tomorrow afternoon. If Alyssa can stay issue free today, they will do her surgery as planned. It will probably have to be a "game-time" decision. She would love to get this done so that she can begin home dialysis. We'll keep you posted.
dd

3/22/09 - Not much to report

BP has been high most of the day and just hit 180. They are trying different doses and changing the timing of some. So far we are not impressed with the results. As we've noted many times, it's almost impossible to get anything done on the weekends. Our regular doctors are not on duty and the on-call doctors never want to make any changes to a non patient; so it's always "hold on till Monday." When BP is at 180, don't tell me to hold on!

Alyssa only had one treatment today versus the two-a-days that she has been going through. Her blood levels have been improving gradually and she is starting to feel better overall. Monday will be day seven of this latest visit and we would love to make it the last day. We'll see all of her doctors on Monday and there are plans for both plasmapheresis and dialysis treatments. No rest for the weary.

The following is written with nothing but the utmost respect for Alyssa's fellow patients. That said, when you spend as much time in a hospital as Alyssa has, you need to look for anything that will make you smile, much less laugh.

The unit that Alyssa is in now can only be described as surreal. We have a nice man next door who sleeps all day, then yells out names all night. Let's just say that sleeping without an Ambien is impossible. Then down the hall is another nice man who sits in a wheelchair outside his room...buck naked! He removes his gown, neatly folds it, and lays it on his tray...over and over again. Once the visiting hours have ended, they just let him stay naked as that is what makes him the happiest. Alyssa has named him "Skinny Naked Man" after the ongoing character, "Ugly Naked Man" on her favorite TV show, Friends. Oh, I almost forgot; across the hall is another man, who also sits outside his room, you guessed it, naked. He's a little beefier, so we call him "Heavy Naked Man." Alyssa has sure seen and experienced a lot for a 21 year old.

Finally, this afternoon Alyssa and her mom hijacked a wheelchair (no, not naked man's) and snuck out the hospital's front door to breath some fresh air and feel the warmth of the sunny spring day. Through a huge smile, she commented that she will never, ever, take either for granted again.
dd

3/21/09 - 11:30 AM

In last night's update we encouraged visitors to come and see Alyssa. Unfortunately we are going to have to put that offer on hold for a few days. As we have been noting recently, Alyssa's blood labs have not been very good this week. She now has neutropenia, which is where you have an abnormally low number of a type of white blood cell called a neutrophil. Patients with neutropenia are more susceptible to bacterial infections; so as a precautionary move, we will ask that no visitors come to the hospital to see Alyssa at this time. Thanks for understanding.

Alyssa' first BP reading this morning was 178/110, which is unusually high for her at this time of day. She has just finished her apheresis treatment and her BP is down to a better 142/83. We are still waiting for those all important lab numbers. Next up is her 3 1/2 hour dialysis treatment.

And you thought raking leaves and doing laundry on a Saturday was a drag!
dd

3/20/09 - Tough Day

When we came to the hospital on Tuesday, we all assumed that it would be a very brief visit. Stabilize her drug reaction and get a little extra BP medicine and home we'd go. They actually gave Alyssa the option to go home that night if she wanted to, but she wisely decided to stay. For the most part, it's been a rough road ever since. Today did nothing to change that feeling.

We did finally make it down to the ICU late last night. After a couple of dosage changes and the addition of two new drugs, her BP and pulse were finally brought down to tolerable levels. She actually had a rather good night of sleep.

Life in the hospital follows a rather routine pattern...rounds with the doctors, blood draws, taking vitals, etc. For the Deff's, our day revolves around the lab reports - HCT, platelets, LDH, creatinine, etc. The reports this week have continually gotten worse, especially with her platelet count, which this morning dropped to 101, a level that we have not seen in quite a while. To combat this, she will need to have plasmapheresis treatments for at least the next few days. Not the end of the world, but very troubling to us because no one can explain why this is happening.

Alyssa has been a role model patient, doing everything and more that's been asked of her. But regardless of her efforts, her quality of life remains very poor right now. We are very thankful for how far we have come since January, but we still want more for Alyssa.

Today, one of her doctors spoke quite frankly to us about his frustration of not being able to get her issues under control. We were told that one rather drastic option to control her blood pressure would be to remove her kidneys. The doctor explained that although her kidneys may not be functioning properly, they can continue to wreak havoc on her blood pressure and there is some support in the research that certain patients pressure was better controlled after their kidneys were removed. He warned us that there is no reason to think this would help in Alyssa's particular case, but it might be something to consider. He said the goal is to keep her healthy and avoid any serious issues that high pressure could cause before we can get her a transplant. Since Alyssa's kidneys are recuperating, albeit slowly, we won't be choosing this option. We are very thankful this doctor took the time to review her entire list of medications with an eye toward simplifying it and making it more effective with some different medications. We were surprised that at this point in time, we are just hearing about these changes that thus far seem to be working better than what she had been on.

Alyssa has been very strong but is understandably discouraged to be back to two procedures a day. She knows she is going to kick this thing in the butt and come out stronger and more appreciative of all those little things in life that we all take so for granted until they are taken from us--like a shower and washing her hair right now. She would love to have some visitors and has a nice private room in the 5500 unit.
dd

3/19/09 - Back to the ICU

As you can tell by the title, this has not been a very good day for Alyssa. Escalating BP (195/120,) blurred vision, a pulse rate that has been hovering around 120 (new high) and a platelet count that dropped to 119, is sending Alyssa back into the intensive care unit. The ICU staff is better equipped to meet Alyssa's current needs such as the ability to provide intravenous BP medicine. We look at this as a precautionary move at this time. She has had numerous issues for about a week now that we just haven't been able to get under control. The stress of all the above, along with her ever present fear that she will have additional seizures due to the high BP, has really taken a toll on her. It probably is a factor in escalating pulse. It may sound crazy, but she feels very safe in the ICU and is not upset about making this move.

The day had started rather uneventfully. A few minor tests and off to dialysis in the RGH Dialysis Center. After a typical treatment, she returned to her room for her plasmapheresis treatment. Yes, we thought that she had received her last treatment last week, but her platelet count didn't agree with us. I know that we say this a lot, but hopefully this is just a temporary need. Just prior to apheresis, her BP and pulse went way up. She also began experiencing blurred vision in both eyes.

I'd seen enough and immediately put in requests for all of her doctors. I know that there has to be a better way to get this under control and more importantly, provide her with some sense of peace and confidence. She has suffered far too much!

Within ten minutes the "March of the Physicians" began. A new BP med was added; she was taken off iron pills (nausea;) taken off Albuterol (causes increased pulse;) had her eyes dilated and examined - several abnormalities were found, but all are a result of current situation; reassigned to ICU and we are still waiting for the Neurologist. The medical world has become very specialized and sadly, very fragmented. It's like a baseball team without a manager, there is no one filling out the "lineup card" and looking at the role of all the of the players. You become the manager by default. It's an exhausting job, but oh so necessary. I really feel for the vast majority of patients who don't have anyone here to support them. Everyone here wants to be helpful and they try to stay on top of Alyssa's needs; but lets face it, there are just too many patients and too few doctors/nurses.

As I close, we are still waiting to be moved down to the ICU as her room isn't ready yet. She declined to take the first room that they assigned her to, as it was the room that three patients died in when she was in the ICU last time...plus it was room #13. No more bad luck...right now we need some good karma!
dd

3/18/09 - Still at RGH

Alyssa did make a trip to the operating room today; but not for her planned peritoneal surgery. Due to ongoing fears that her Permcath catheter had become infected, it was removed and a new one inserted. High fevers and intermittent bleeding around the entry point of the catheter, made it an easy decision to replace it. As Dr. Kouides put it, "catheters are the bane of the medical world." They are very necessary to facilitate such procedures as hemodialysis and plasmapheresis, but the fear of infection always hangs over the patients head. The use of the Permcath is usually a short term solution (makes you wonder why they named it "Perm"cath) with the use of a fistula or peritoneal access a safer long term option. Hopefully Alyssa will not need to use the Permcath within a month after her peritoneal surgery is performed, but she does still need one for the time being.

The surgery went well and she is recovering nicely at RGH. They want to keep her for at least one more night to continue monitoring her BP, fever and vomiting issues. There is definitely an infection in her body; but whether it's due to the catheter, a bronchial infection, stomach disorder or some unidentified cause has yet to be determined. She has a very nice private room and excellent care, so we are all comfortable with her staying as long as it takes to get her current issues under control.

Tuesday was a long day followed by a sleepless night, and another busy day today, so I'm going to retire early.
dd

3/17/09 - Back in the Hospital

It's been a very strange and long day...after 12 long hours in the ER, Alyssa was admitted tonight to Rochester General Hospital. We aren't exactly sure what the source of this setback is, which explains why we are staying here tonight. So how did we get to this point?

Like many Rochester families, the Deffs have all been battling cold and flu symptoms. Alyssa was the last to finally fall. She has had both a cough and low grade fever since last Friday. Today during dialysis, she took a turn for the worse. Her fever went to 102+, her cough took on a decidedly new tone, and, of course, her blood pressure took off again - 190/120. A fever in excess of 100 degrees is a very big concern for patients with catheters as they often are indicative of an infection in the line. Blood pressure readings in the range of today's were what caused Alyssa's seizures in January.

Taking a proactive stance, her doctor put her on vancomycin, a very strong antibiotic. Well, with Alyssa being Alyssa, she of course had an infusion reaction to the drug called red man syndrome. Her neck, face and back became, well, red and she starting itching all over.

High BP & fever & an infusion reaction...the next thing we know, we are in an ambulance on the way to RGH. It was, as Yogi Berra said, "deja vu all over again" as we retraced our steps of January 29th. Thankfully there were no seizures this time. We are also thankful that Alyssa qualified to be taken into the pediatric emergency room where she went right into a treatment room. The wait for the regular ER was at least four hours. We are also very thankful that the doctor that originally treated her in January was on duty today and immediately began treating Alyssa. She received another antibiotic, gentamycin and initially responded favorably. But within an hour her temperature again went past 102 degrees and her oxygen level dropped below 90 so it was decided that she should be admitted until they figure out what is causing all of this. If it is the catheter, the current one will be pulled out and a new one inserted. If it's a viral infection, we'll just have to wait it out.

Of course this means that her peritoneal surgery, scheduled for Wednesday, was postponed until next Wednesday at the earliest.

We hope that this is just a small setback in Alyssa's struggle to regain some normalcy in her life.

Alyssa had been concerned that her blog was losing some readers, as the updates haven't had much zing lately. I guess this shows that she will do anything to bring her readers back on board :=)
dd

3/14/09 - #2 Lab Results Back

The report came in tonight and the news is good...Alyssa's platelet count is back up to a strong 187 and her hematocrit is at 31. So for now, she does not have to resume plasmapheresis treatments. On Monday morning she'll go into Rochester General for another blood draw to recheck the platelet count; but for tonight, she's happy that there are no pheresis treatments hanging over her head and her surgery is still a go for Wednesday.
dd

3/14/09 - Waiting for the Labs

It's pins and needles time...we're waiting for Alyssa's labs to come back this morning to see where her platelet count is. It appears that we may have celebrated prematurely her no longer needing to receive plasmapheresis treatments. Her platelets count unexpectedly dropped down to 135 on Thursday. If they continue that downward trend today, Alyssa will to need receive plasmapheresis treatments next Monday, Wednesday and Friday. If they are really low today, she might require a treatment this afternoon. This was news that she didn't want to hear.

What could cause this sudden drop? High BP is a prime suspect and she certainly has had a bad week on the BP roller coaster. It could also be caused by the HUS, but we'll leave that one on the back shelf for now.

What this might result in is a need to postpone her peritoneal surgery on Wednesday. Platelets are critical to the clotting process and obviously, no one wants to go into a surgical procedure worried about clotting issues.

So we sit and wait...and hope for the best.
dd

3/11/09 - The Good and the Bad

Bad News
BP has been very bad the past three days, going as high as 190 systolic and 118 diastolic. She is already on five different BP medicines (Clonindine, Hydralazine, Enalapril, Metoprolol & Amlodipine) and three of those are at the highest recommended daily dose. Yesterday, they gave her one extra dose of Clonindine to knock it back down. We're not sure if something else has come in to play here or are we still trying to find the proper level and mix of meds. One thing the doctors and the nurses all agree on is that she is taking an incredible amount of meds, especially for someone that is only 21 years old. We always assumed that BP would level off as we got the blood issues under control, but that has not been the case at all. We're also concerned about how long she will have to continue taking all these meds and what their long term effects will be on her.

Alyssa's quality of life has really taken a beating. By the time she gets done with dialysis treatments, she is so tired that she'll often sleep for the balance of the day. She has also experienced a great deal of nausea, so she seldom wants to eat anything, which drains her energy level... so around and around the merry-go-round we go. She has already lost 25+ pounds and just can't afford to lose much more. At this point, her nutritionist and doctors want her to eat anything, whether it's on her renal diet or not. We made a big hit with a homemade root beer float last night, so I guess that we will have to continue to look for what appeals to her.

Still no kidney function. She had her physical at 7:00 AM this morning (I forgot what it's like to get up this early) and was cleared for peritoneal surgery next week. They will need to give her a special blood clotting drug and will control her blood pressure through an IV drip. She is nervous about the surgery, but very excited about being able to do her dialysis at home while she sleeps.

Good News
Her MRI taken last week, came back clean. Almost all the damage done as a result of her seizures in February has been reversed. Great, great news!

Also, her blood labs have stayed within targeted levels now for about a week, so Dr Kouides has stopped, for now, her plasmapheresis treatments. We're very hopeful that eliminating these three times per week treatments will help Alyssa gain some much needed energy. She will have blood drawn two times per week to ensure that she stays within her target numbers.

She did shed a few tears on the way home after her final treatment Monday. She has become very attached to her Red Cross nurses that have been with us constantly since this all started back on January 14. As we stated in prior blogs. Alyssa's blood disorder was 98% fatal before apheresis was developed so we certainly are thankful for this life saving process. We also cannot thank the Red Cross nurses enough for the care, compassion, guidance and friendship they provided in addition to this essential treatment. They will always be part of our "extended" family.

Alyssa is still a very sick young lady, but we are going to celebrate every "victory" that she achieves and continue to look forward to a brighter future for her.
dd

3/7/09 - Two good days in a row!

Two uneventful treatments in a row, which is always good news!

Friday, Alyssa received her plasmapheresis treatment and for only the second time since she became ill, her hematocrit(HCT)was above 30 (31.) This could be due to the two units of blood that she received or Thursday...or it may be a sign of good things to come. The rest of her labs were also very good; so good that we heard whispers from the doctors that they may begin tapering her plasmapheresis treatments next week. This would be a welcome relief for Alyssa as the daily need for either plasmapheresis or dialysis really takes a toll on her body. More lab work will be drawn Monday, followed by a treatment. If the results are good, Wednesday's treatment will be skipped. Then we'll go day-to-day depending on what her blood work shows.

Dialysis today went well. Unlike the last two treatments, she was able to get through to the end without any clotting issues enabling her to hit her target weight.

Alyssa had planned on going to the NYS Hockey regionals this afternoon in Brockport, but was just to tired from dialysis. We're happy to report that Athena won the game and now moves on to the state semi-finals. Reports from her brothers tell us that the game was well refereed (by our next door neighbor, Mark.)

Don't forget to set your clocks ahead tonight.
dd

3/4/09 - Oh What a Night!

Great dinner, great play and best of all great friends! It was a special night for Alyssa, Debbie and Dave as Alyssa continued to stretch her boundaries. We joined 40 new and old friends at Tapas' for a great dinner followed by the play, Jersey Boys at the Auditorium Theatre. Everything was perfect, especially watching Alyssa enjoying herself so much. She has always loved Broadway shows, so this was the perfect event for her. A special thanks to Jim and Susan LeBeau for putting this all together and especially for including us. You two are the best!

Today, Alyssa had her normal dialysis treatment and also received two units of plasma. Her hematocrit(HCT) had dropped to 22, which is her target level for requiring a transfusion. The transfusion is done as part of her dialysis treatment. As with the last two treatments, she had trouble with the dialysis machine clotting towards the end of her treatment, so they had to cut it short by 20 minutes. By shortening her treatment, they are not able to remove the targeted amount of fluid, so we will have to watch this in the coming days.

Tonight hasn't been a real good night. Alyssa has been experiencing nausea and a general achy all over feeling. Her BP has been elevated a little, but no fever. It may just be a reaction to the two blood transfusions this morning; but as parents, we think the worst and it brings back memories that we don't want to relive.
dd

3/4/09 - Up and About

We've had several busy days in a row, so I apologize for not updating sooner. We keep hoping that a light day will pop up her schedule, but it's just not meant to be!

Alyssa ventured out into the real world on Sunday, going to the ESL Sports Centre to see Athena play Fairport in the Section V Hockey final. Athena won (sorry Heidi) so a good time was had by all the Deff's. Several of the players are good friends with Ryan and Kyle. Alyssa enjoyed her first outing, although she slept for hours upon returning home.

Monday saw a return to plasmapheresis at RGH. Her HCT level had dropped to 22, which will mean that she will need another blood transfusion. Alyssa is begun receiving the drug, Aranesp, which should help to build up her HCT count, and eventually eliminate the need for blood transfusions. Relative to plasmapheresis, the plan is to try two treatments this week - Monday and Friday, then possibly one treatment next week.

Following her plasmapheresis treatment, we drove over to the dialysis treatment center to be briefed on the peritoneal form of dialysis. Alyssa has decided that she wants to switch to this format as it will give her move flexibility. I will use the next update to explain this process and it's impact on Alyssa.

We finally got home around 5:00PM, so it was a really long day for Alyssa.

Tuesday wasn't going to be any easier. Dialysis was moved up to 9:00AM so that Alyssa could meet with the peritoneal surgeon in the afternoon. During dialysis, Alyssa had the opportunity to meet 1/1 with a 38 year old woman who is currently using peritoneal dialysis. She was very helpful in helping to eliminate some of Alyssa's concerns.

Following dialysis, we went over to see Dr Kurchin to discuss the surgical process of implanting the catheter into Alyssa's peritoneal cavity. It is a relatively basic surgery that will be performed on an outpatient basis. She should be in and out within three hours. Continuing with her string of great doctors, Dr Kurchin made a big hit with Alyssa. He is very engaging and informative. He's also French with an accent that makes him sound exactly like Lumierre from Beauty and the Beast. He is the only surgeon in this area that performs this procedure with a scope, which makes it a less invasive procedure. She is scheduled for the surgery on March 18th.

It's now Wednesday morning and we have already had blood drawn and met with her hematologist, Dr Kouides at RGH. We still haven't anything from the University of Iowa relative to her genetic testing. Dr K has put together treatment plans that address three potential results that could come from the testing. I'll share those on a "slow news day."

Shuffling down the hallway of RGH, we are now in the Neurology area where Alyssa is presently undergoing a MRI brain scan. This is a follow-up procedure to ensure that the fluid which caused her seizures is no longer on her brain. It's a painless procedure, but you are in a very small chamber that sounds like the inside of a washing machine. ADD and claustrophobics should avoid if possible!

We're finishing off today with the three of us going to Tapas 177 for dinner and then to Jersey Boys with a group of friends. Alyssa has always been a big fan of Broadway musicals. It will a full day, but one she says she up for.
dd

2/28/09 - Leaving Comments

We have received many inquiries about not being able to leave Alyssa a comment at the end of a posting. We're happy to report that our account has been updated so that everyone will now have access to the comment area.

Thanks for your patience!
(See, I told you there would be no anger)
dd

2/28/09 - Anger

Today's update is # 51. A great deal has happened since that first posting on January 14th...we have gone through the lowest lows and have felt some great highs watching Alyssa fight back against strong odds. We haven't shared everything with you, but have always tried to keep you informed as to the major details surrounding this horrible disease, HUS, and its impact on Alyssa and to a smaller degree, our family.

Tonight's update will have a little different tone to it. In her 1969 book, Elisabeth Kubler-Ross introduced her Kubler-Ross model relative to grieving. Although we usually associate the concept of grieving with death, it can also be applied to other major/catastrophic changes that impact our lives. As a reminder the five steps are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

Personally, I didn’t have time for Denial as everything was happening so fast. I also skipped Anger and went directly to Bargaining, after being told that Alyssa might not live through this. I’d have made any deal, and still would, to ensure a good outcome for Alyssa. Depression, well, that's popped in and out since the start; and Acceptance – sorry, none of us are ready for that!

So Anger is where I’m at now. Angry that this horrible disease, which thankfully strikes so few individuals, somehow found my daughter. Angry that her life will never be the same again. Angry that she rarely feels at peace anymore, worrying about what lies ahead. Angry that she needs to spend parts of six days a week attached to machines. Angry that she may need to be on some form of dialysis for the rest of her life. Angry that at 21, she should be out enjoying life to its fullest, not stuck at home too weak to move. Angry that when she finally does get out, she barely has the energy to walk into a store and back to the car. Angry that many of her so called “friends” have slowly disappeared (but also very thankful for those that have provided her with much needed support.) Angry that important tests were not performed early on that might have changed her outcome. Angry that I can’t find the right thing to say when I find Alyssa and/or her Mom crying. Angry that we don’t all wake up to find this nightmare over with.

I’m angry, but I’m also very thankful for all the incredible support that Alyssa has received from family, friends, strangers, and especially from her team of physicians and nurses that have worked tirelessly to help her.

I promise that # 52 will be void of any overt anger. Anger is a wasted emotion, but one that we all need to use at times so that we can move on. Thanks for allowing me this opportunity to vent.

dd