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
Saturday, February 28, 2009
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
Friday, February 27, 2009
2/27/09 - We Love ya Lyss - Video
Lights, camera, action...
You are cordially invited to the world premier of
a special documentary featuring Alyssa and numerous special guests, shot in her preHUS days.
Filmed, directed and produced by Steph Hasenauer, who has been nominated for Oscars in all three categories.
The red carpet has been rolled out, the search lights are scanning the sky, the paparazzi are in place and we've saved a special seat for each of you. So pop some popcorn, get a comfortable seat and sit back and enjoy.
You are cordially invited to the world premier of
Get Better Soon Lyssa
a special documentary featuring Alyssa and numerous special guests, shot in her preHUS days.
Filmed, directed and produced by Steph Hasenauer, who has been nominated for Oscars in all three categories.
The red carpet has been rolled out, the search lights are scanning the sky, the paparazzi are in place and we've saved a special seat for each of you. So pop some popcorn, get a comfortable seat and sit back and enjoy.
Thursday, February 26, 2009
2/26/09 - Two Good Days
We hate to jinx her, but Alyssa has had two good days in a row relative to blood pressure...the best two since she fell ill in January. This can be attributed to getting her down to her target dry weight and an increase in her BP meds. Whatever the reason, it is so nice to not have to worry about how we'll get her numbers down.
Friday, Alyssa is scheduled for a plasmapheresis treatment, then an introductory meeting with the Peritoneal Team at the Dialysis Center. http://en.wikipedia.org/wiki/Peritoneal_dialysis. This form of dialysis will allow Alyssa to live a more flexible life style. Within the next few weeks, she will have a catheter surgically implanted into her abdomen. As she sleeps each night, fluid will be placed within her peritoneal cavity through this catheter. The solution, which performs the dialysis function, is then drained from her abdomen before she awakes. This will eliminate the need for her to go through daytime dialysis, which is currently set at three times per week. It will also allow her to travel as this process can be performed most anywhere. While we haven't yet given up hope that her normal kidney function will return, each passing day makes it less likely, so we are now looking into long term alternatives such as peritoneal dialysis and kidney transplants.
Thanks to Aunt Sandy for performing "nurse" duties tonight so that Dave and Debbie could go to dinner at the home of their good friends, Jim & Sue LeBeau. It was great to talk to people that didn't have a stethoscope hung around their neck!
They have begun the genetic analysis at the University of Iowa, but we have yet to receive any results.
dd
Friday, Alyssa is scheduled for a plasmapheresis treatment, then an introductory meeting with the Peritoneal Team at the Dialysis Center. http://en.wikipedia.org/wiki/Peritoneal_dialysis. This form of dialysis will allow Alyssa to live a more flexible life style. Within the next few weeks, she will have a catheter surgically implanted into her abdomen. As she sleeps each night, fluid will be placed within her peritoneal cavity through this catheter. The solution, which performs the dialysis function, is then drained from her abdomen before she awakes. This will eliminate the need for her to go through daytime dialysis, which is currently set at three times per week. It will also allow her to travel as this process can be performed most anywhere. While we haven't yet given up hope that her normal kidney function will return, each passing day makes it less likely, so we are now looking into long term alternatives such as peritoneal dialysis and kidney transplants.
Thanks to Aunt Sandy for performing "nurse" duties tonight so that Dave and Debbie could go to dinner at the home of their good friends, Jim & Sue LeBeau. It was great to talk to people that didn't have a stethoscope hung around their neck!
They have begun the genetic analysis at the University of Iowa, but we have yet to receive any results.
dd
Tuesday, February 24, 2009
2/24/09 - Monday Monday, Can't Trust That Day
Monday Monday, sometimes it just turns out that way - The Mamas and the Papas were right on target for Alyssa's Monday. She met with her hematologist in the morning, followed by a plasmapheresis treatment; things were looking good. But then her old nemesis kicked in again - blood pressure issues!
By noon her pressures had reached uncomfortable levels, so off we went to the Dialysis Center to have some fluid removed. Alyssa's dry weight http://www.davita.com/dialysis/treatment/a/1930 target, which is 60 kilos, had mistakenly been changed to 64 kilos on her dialysis chart. As a result of this error, she was carrying six extra kilos of fluids that should have been removed during her last few dialysis treatments. Extra fluid = high BP. They removed two kilos Monday, getting her down to 66 and plan on removing four more kilos during her regular Tuesday treatment. On top of this, her nephrologist, increased the doses on a couple of her prescriptions.
With all of these changes you'd figure we'd be on easy street Monday night. Wrong - her BP continued to rise into the evening leaving Alyssa with a feeling of "what do I have to do to get my BP under control?" To Alyssa, high BP equates to a fear of seizures. Something that none of want to see her go through again.
We're happy to report that by the 2:00 AM dose, her BP started to fall and has remained down this morning. She is now in her second hour of Tuesday's treatment and her BP is 149/87, which is very good for her. However, we're not going to start celebrating just yet as we have been down this path before.
So, what started as a two hour treatment on Monday morning, ended up being nine hour session that ended at 5:30 PM Monday night...sometimes it just turns out that way.
dd
By noon her pressures had reached uncomfortable levels, so off we went to the Dialysis Center to have some fluid removed. Alyssa's dry weight http://www.davita.com/dialysis/treatment/a/1930 target, which is 60 kilos, had mistakenly been changed to 64 kilos on her dialysis chart. As a result of this error, she was carrying six extra kilos of fluids that should have been removed during her last few dialysis treatments. Extra fluid = high BP. They removed two kilos Monday, getting her down to 66 and plan on removing four more kilos during her regular Tuesday treatment. On top of this, her nephrologist, increased the doses on a couple of her prescriptions.
With all of these changes you'd figure we'd be on easy street Monday night. Wrong - her BP continued to rise into the evening leaving Alyssa with a feeling of "what do I have to do to get my BP under control?" To Alyssa, high BP equates to a fear of seizures. Something that none of want to see her go through again.
We're happy to report that by the 2:00 AM dose, her BP started to fall and has remained down this morning. She is now in her second hour of Tuesday's treatment and her BP is 149/87, which is very good for her. However, we're not going to start celebrating just yet as we have been down this path before.
So, what started as a two hour treatment on Monday morning, ended up being nine hour session that ended at 5:30 PM Monday night...sometimes it just turns out that way.
dd
Sunday, February 22, 2009
2/22/009 - Just Waiting for Monday
The last couple of days have not been the best relative to BP, water retention & a high pulse. Whether you're in the hospital or at home, weekends are tough when your sick. It's difficult to connect with your doctor(s) so you end up with the doctor on call, who typically isn't familiar with your case; so for the most part you find yourself just hanging on for Monday morning to connect with your physician.
As parents, we just don't know when we have reached a critical stage that requires immediate attention, or just a set-back that can wait until the next "work day." Everything out of the ordinary is scary, especially when you're dealing with the issues that we are with Alyssa. We feel like we have been hanging off a ledge for several days now. Alyssa's BP has been much higher than it was a week ago, which is most likely due to fluid retention. Yesterday, Alyssa was 12 lbs over what they call her ideal "dry weight." All of this is due to fluid retention. They removed four pounds through her dialysis on Saturday and plan to get five to six more off on Tuesday. But, in the meantime, the excess fluids drive her BP to levels that leave us very concerned. So Monday just can't come soon enough. We'll be meeting with Dr Kouides, Alyssa's hematologist, during her plasmapheresis treatment in the morning. He has been one of our guiding lights during this ordeal, who along with his incredible knowledge, brings a sense of calmness that we have all valued over the past month.
We'll update you after our "reunion" with Dr K.
dd
As parents, we just don't know when we have reached a critical stage that requires immediate attention, or just a set-back that can wait until the next "work day." Everything out of the ordinary is scary, especially when you're dealing with the issues that we are with Alyssa. We feel like we have been hanging off a ledge for several days now. Alyssa's BP has been much higher than it was a week ago, which is most likely due to fluid retention. Yesterday, Alyssa was 12 lbs over what they call her ideal "dry weight." All of this is due to fluid retention. They removed four pounds through her dialysis on Saturday and plan to get five to six more off on Tuesday. But, in the meantime, the excess fluids drive her BP to levels that leave us very concerned. So Monday just can't come soon enough. We'll be meeting with Dr Kouides, Alyssa's hematologist, during her plasmapheresis treatment in the morning. He has been one of our guiding lights during this ordeal, who along with his incredible knowledge, brings a sense of calmness that we have all valued over the past month.
We'll update you after our "reunion" with Dr K.
dd
Friday, February 20, 2009
2/20/09 - Just the Facts
A brief update with nothing but the facts as they are tonight:
Blood pressure is still all over the place. One hour up, the next down, but mainly up. Extremely frustrating and definitely taking a toll on all of us. We often feel that we are put in a position of having to decide on med changes - a position that none of is comfortable with being in. We have gone from "Intensive Care" to "Parent Care."
Kidneys are still not functioning, but Alyssa has produced some "pee." Nothing to get excited about at this time, but it is a change in the right direction. Whether or not Alyssa's kidneys will again perform their bodily functions is yet to be determined. If functionality is not regained within two months of the initial failure, they are determined to be in permanent renal failure status...Alyssa is now at five weeks
The plan is to get three plasmapheresis treatments next week, followed by two the following week.
Dialysis treatments will remain at three per week indefinitely.
Alyssa's three primary physicians return from vacation next week and we plan to meet with all of them.
No word yet on results from the genetic testing being performed at the University of Iowa.
She remains on 12 different medications that are taken between 6:00 AM and midnight.
Her new renal diet is a killer - no pizza or mac & cheese - Alyssa favorites.
Despite all of the above, Alyssa is trying to remain optimistic, although she's had a few difficult moments the last couple of days trying to deal with enormity of it all. She hasn't had any easy days lately and it's beginning to take a toll on her.
dd
Blood pressure is still all over the place. One hour up, the next down, but mainly up. Extremely frustrating and definitely taking a toll on all of us. We often feel that we are put in a position of having to decide on med changes - a position that none of is comfortable with being in. We have gone from "Intensive Care" to "Parent Care."
Kidneys are still not functioning, but Alyssa has produced some "pee." Nothing to get excited about at this time, but it is a change in the right direction. Whether or not Alyssa's kidneys will again perform their bodily functions is yet to be determined. If functionality is not regained within two months of the initial failure, they are determined to be in permanent renal failure status...Alyssa is now at five weeks
The plan is to get three plasmapheresis treatments next week, followed by two the following week.
Dialysis treatments will remain at three per week indefinitely.
Alyssa's three primary physicians return from vacation next week and we plan to meet with all of them.
No word yet on results from the genetic testing being performed at the University of Iowa.
She remains on 12 different medications that are taken between 6:00 AM and midnight.
Her new renal diet is a killer - no pizza or mac & cheese - Alyssa favorites.
Despite all of the above, Alyssa is trying to remain optimistic, although she's had a few difficult moments the last couple of days trying to deal with enormity of it all. She hasn't had any easy days lately and it's beginning to take a toll on her.
dd
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