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!