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
Saturday, March 14, 2009
Wednesday, March 11, 2009
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
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
Saturday, March 7, 2009
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
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
Thursday, March 5, 2009
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
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
Tuesday, March 3, 2009
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
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
Saturday, February 28, 2009
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
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
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