Thursday, October 1, 2009
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.
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
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.
Tuesday, September 15, 2009
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.
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.
Monday, May 11, 2009
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
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.
Friday, April 24, 2009
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!
Tuesday, April 14, 2009
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!
Thursday, April 9, 2009
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
- Start the Cycler
- Connect the new bags (2)
- Connect Alyssa's transfer line (tube from her abdomen) to Cycler
- The fluid exchanges are done by the Cycler during the night
- Disconnect from the machine in the morning
- Have a normal day!
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!
Wednesday, April 8, 2009
- 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.
- 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!
Monday, April 6, 2009
Sunday, April 5, 2009
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.
Saturday, April 4, 2009
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.
Wednesday, April 1, 2009
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!
Monday, March 30, 2009
Sunday, March 29, 2009
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.
Saturday, March 28, 2009
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.
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!
Thursday, March 26, 2009
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.
Wednesday, March 25, 2009
Tuesday, March 24, 2009
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.
Sunday, March 22, 2009
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.
Saturday, March 21, 2009
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!
Friday, March 20, 2009
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.
Thursday, March 19, 2009
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!
Wednesday, March 18, 2009
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.
Tuesday, March 17, 2009
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 :=)
Saturday, March 14, 2009
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.
Wednesday, March 11, 2009
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.
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.
Saturday, March 7, 2009
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.
Thursday, March 5, 2009
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.
Tuesday, March 3, 2009
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.
Saturday, February 28, 2009
Thanks for your patience!
(See, I told you there would be no 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:
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.