Another day at the clinic and another day full of good news. This is the type of habit that we would love to get into! Lyss is doing so well that her clinic visits will now be once a week rather than twice. She also received another treatment of Soliris.
Lab results:
White Blood Cell.....................10.0
Red Blood Cell.........................3.8
HCT..........................................30
Platelets................................446
Creatinine.............................. .71
GFR.........................................59
Tacro.................................... 16.1
Phosphorous........................ 1.5
Tacro level ( immunosuppressant) is running high which resulted in her daily dose of this med. being cut in half. Phosphorous is still low, but steadily improving through diet changes. The irony in all this is that Alyssa has had to change her diet 180 degrees from what she ate before the transplant. The foods that she avoided are now high on the priority list. A plus for her is that food tastes good again and she actually enjoys eating most of the recommended foods.
Last night, the Kidney Foundation held its annual Kidney Walk Picnic, an event to honor and thank the year's leading fundraisers. Although Lyss was not number one again, she was among the leaders and was the highest in Internet solicitations. In recognition, she received suite tickets to the Buffalo Bills/Steelers game. Kyle and I are big Steeler fans, so we're both proud and thankful.
dd
Thursday, November 18, 2010
Monday, November 15, 2010
Monday 11/15
After a less than stellar weekend, today's scheduled trip to URMC brought plenty of good news and a plan to work on a couple areas of concern. We love our medical team, but it never ceases to amaze us how far off schedule they always are. Visits are regularly between seven and eight hours...but I digress, back to Alyssa.
The weekend was a little rocky. She had to deal with a rather nasty headache and a case of the "shakes." Her hands were shaking so much that she was unable to even hold a pen, resulting in Mom taking over the writing of her thank you notes - well at that's Alyssa's story and she's sticking to it. Blood pressure and pulse were also high (160/115 & 120.) Much of this may be due to a high level of Tacrolimus, which is a drug that she takes twice a day to help prevent rejection of the new kidney. All of these are common side effects Tacro leading her Dr. to half the daily prescribed amount for the next couple of days. It's all part of the delicate balancing game that is part of dealing with a transplant recipient's life. Alyssa has really been very fortunate to-date, with a minimum of drug changes needed.
The rest of her labs were some of her best so far. Phosphorous was up to 1.4, White Blood Cell count back to normal and negative results on all of the virus panels that were run. And how about that Creatinine - .67, which is just outstanding! Staples came out today and Dad learned how to do the daily flushing of her catheter. She even got the go ahead to drive very short distances.
It's the kind of day that we hope for every time that we go to URMC. How can you not be happy when you see the Doctors continually smiling and shaking their heads in amazement. Alyssa is beating the odds, but that shouldn't surprise anyone.
dd
The weekend was a little rocky. She had to deal with a rather nasty headache and a case of the "shakes." Her hands were shaking so much that she was unable to even hold a pen, resulting in Mom taking over the writing of her thank you notes - well at that's Alyssa's story and she's sticking to it. Blood pressure and pulse were also high (160/115 & 120.) Much of this may be due to a high level of Tacrolimus, which is a drug that she takes twice a day to help prevent rejection of the new kidney. All of these are common side effects Tacro leading her Dr. to half the daily prescribed amount for the next couple of days. It's all part of the delicate balancing game that is part of dealing with a transplant recipient's life. Alyssa has really been very fortunate to-date, with a minimum of drug changes needed.
The rest of her labs were some of her best so far. Phosphorous was up to 1.4, White Blood Cell count back to normal and negative results on all of the virus panels that were run. And how about that Creatinine - .67, which is just outstanding! Staples came out today and Dad learned how to do the daily flushing of her catheter. She even got the go ahead to drive very short distances.
It's the kind of day that we hope for every time that we go to URMC. How can you not be happy when you see the Doctors continually smiling and shaking their heads in amazement. Alyssa is beating the odds, but that shouldn't surprise anyone.
dd
Friday, November 12, 2010
Lab Results
For the medically inclined, here are the latest lab results:
White Blood Cell.....................10.9
Red Blood Cell.........................3.4
HCT..........................................30
Platelets................................409
Creatinine.............................. .72
GFR.........................................59
I'm leaving for NYC this morning for a "Boy's Weekend" with my 3 sons and the Dave Matthews Band. I'll update only if there are any developments with Lyss.
Have a great weekend!
dd
White Blood Cell.....................10.9
Red Blood Cell.........................3.4
HCT..........................................30
Platelets................................409
Creatinine.............................. .72
GFR.........................................59
I'm leaving for NYC this morning for a "Boy's Weekend" with my 3 sons and the Dave Matthews Band. I'll update only if there are any developments with Lyss.
Have a great weekend!
dd
Thursday, November 11, 2010
A Little Clarity
Seven hours today versus 14 Monday wasn't the only improvement - Lab results were also better, including a drop in the White Blood Cell (WBC)count to 10.9. Most everything else fell in the acceptable range with the exception of Phosphorous which results we are still waiting for. They drew a couple of virus panels due to the high WBC count on Monday, but those take a few days to get back. Blood pressure and pulse are still trending high so adjustments will be made to BP meds.
So where are we - good results, bad results. Good days, bad days...what does it all mean? Are we where we should be? Is this what the Dr's expected to see? Well, today brought us a little clarity. We had one of those rare, special, and often terrifying moments, when the doctor looks up from the eight inch thick file, puts down the stethoscope and just talks to you. Sensing anxiety in Lyssa's voice and demeanor, Dr Bodell said "Alyssa, you are doing incredibly well, better than we could have expected." Shortly after, her surgeon, Dr Maroquinn came in and just couldn't stop smiling while telling us that "he is thrilled with her progress." As both said, when you do something with no precedent to compare it to, you just don't know how it will all turn out. Both feel that she is doing better than expected.
We're only two+ weeks into this, with a great deal still ahead for Lyss, but for one day let's celebrate how far she has come!
dd
So where are we - good results, bad results. Good days, bad days...what does it all mean? Are we where we should be? Is this what the Dr's expected to see? Well, today brought us a little clarity. We had one of those rare, special, and often terrifying moments, when the doctor looks up from the eight inch thick file, puts down the stethoscope and just talks to you. Sensing anxiety in Lyssa's voice and demeanor, Dr Bodell said "Alyssa, you are doing incredibly well, better than we could have expected." Shortly after, her surgeon, Dr Maroquinn came in and just couldn't stop smiling while telling us that "he is thrilled with her progress." As both said, when you do something with no precedent to compare it to, you just don't know how it will all turn out. Both feel that she is doing better than expected.
We're only two+ weeks into this, with a great deal still ahead for Lyss, but for one day let's celebrate how far she has come!
dd
Wednesday, November 10, 2010
The Ups & Downs
Unless you have lived it through it, it's very hard to understand the emotional highs and lows that accompany almost every day for someone living through aHUS; and in Alyssa's case, the additional issues that come with a transplant associated with aHUS.
Take today for example...it started normally, Lyss felt good when she got up and had a great time hosting Jennifer, Michael & Leana this morning. Then just like that, things changed this afternoon. First her labs results came back with some issues regarding White Blood Cell count (14.0,) Red Blood Cell count (3.6,) and a variety of other hematology variances. The imunosuppressants may be raising havoc here, but to be safe, they will do a "virus panel"
tomorrow to see if there are any underlying issues at play. When Lyss asked her coordinator if she should be worried, she got a "not yet" for a response. Gulp!
Then, while watching TV, Lyss felt a little out of sorts, which always sends us running for the blood pressure cuff - 158/110 with a pulse of 120. Not good numbers, so back on the phone to the coordinator who increased her blood pressure meds immediately and for the near future. It's been an hour now, and her pulse has started to come down.
These may seem like a couple of minor issues, the problem for Lyss is that almost every day is filled with bumps in the road like these. She has a significantly compromised immune system now due to the imunosuppressants and the Soliris, so each irregularity has to be watched carefully to ensure that it isn't a precursor to some thing major. Our hope is that the further we get from the transplant date, the fewer the issues. She also will learn to address some of the issues on her own as she becomes more familiar with them.
To say that we are proud of how she handles these situations would be a gross understatement! She calmly makes the calls to the appropriate medical source and takes whatever action is needed. She has very successfully worked to bring an order and calmness to each day. Not dwelling on the negative and trying to look for the positives in her situation. Sounds simple/easy right? Try living every day walking on the edge of cliff, never quite sure when something will send you over the edge; or, working with doctors that are the some of the best at what they do, but can't really tell us what our expectations should be due to the uniqueness of this disease. And do Mom & Dad handle it? Probably not as well. Speaking for myself, every time that I'm not with them in the hospital or clinic, and a get a call from Deb, my heart sinks into my stomach and stays there until I'm reassured that all is well. Again, a feeling that you would have to live through to understand. It sucks - for everyone involved. But we will fight through every little blip, praying and hoping that better days are on the horizon for Lyss.
dd
Take today for example...it started normally, Lyss felt good when she got up and had a great time hosting Jennifer, Michael & Leana this morning. Then just like that, things changed this afternoon. First her labs results came back with some issues regarding White Blood Cell count (14.0,) Red Blood Cell count (3.6,) and a variety of other hematology variances. The imunosuppressants may be raising havoc here, but to be safe, they will do a "virus panel"
tomorrow to see if there are any underlying issues at play. When Lyss asked her coordinator if she should be worried, she got a "not yet" for a response. Gulp!
Then, while watching TV, Lyss felt a little out of sorts, which always sends us running for the blood pressure cuff - 158/110 with a pulse of 120. Not good numbers, so back on the phone to the coordinator who increased her blood pressure meds immediately and for the near future. It's been an hour now, and her pulse has started to come down.
These may seem like a couple of minor issues, the problem for Lyss is that almost every day is filled with bumps in the road like these. She has a significantly compromised immune system now due to the imunosuppressants and the Soliris, so each irregularity has to be watched carefully to ensure that it isn't a precursor to some thing major. Our hope is that the further we get from the transplant date, the fewer the issues. She also will learn to address some of the issues on her own as she becomes more familiar with them.
To say that we are proud of how she handles these situations would be a gross understatement! She calmly makes the calls to the appropriate medical source and takes whatever action is needed. She has very successfully worked to bring an order and calmness to each day. Not dwelling on the negative and trying to look for the positives in her situation. Sounds simple/easy right? Try living every day walking on the edge of cliff, never quite sure when something will send you over the edge; or, working with doctors that are the some of the best at what they do, but can't really tell us what our expectations should be due to the uniqueness of this disease. And do Mom & Dad handle it? Probably not as well. Speaking for myself, every time that I'm not with them in the hospital or clinic, and a get a call from Deb, my heart sinks into my stomach and stays there until I'm reassured that all is well. Again, a feeling that you would have to live through to understand. It sucks - for everyone involved. But we will fight through every little blip, praying and hoping that better days are on the horizon for Lyss.
dd
Nice Day at Home
No procedures on Tuesday, but that didn't keep Alyssa at home. She went over to Rochester General Hospital for a social visit with Dr Kouides and his hematological team that were instrumental in getting her to where she is now. While falling just short of a ticker-tape parade, hugs and smiles were everywhere! We are so thankful for all that this special group of people have done for Lyss. A bond has been formed that will last a lifetime.
Today will hopefully bring another day of rest before returning to the hospital tomorrow for a Soliris treatment and clinic visit. Let's hope that this one is under Monday's 14 hour day!
dd
Today will hopefully bring another day of rest before returning to the hospital tomorrow for a Soliris treatment and clinic visit. Let's hope that this one is under Monday's 14 hour day!
dd
Monday, November 8, 2010
Monday Night - 7:00pm
Changing of the Guard
Deb and I have switched places and now I'm with Alyssa at URMC as she continues the infusion process. It typically takes six hours, but we're not sure what kind of rate they have her on, so it could be as late as 10:00pm till she is finished. Unfortunately, she can't trade places with anyone, for a much needed break. This will be at minimum a 12 hour day and could go as high as 14. But we're looking at these as "steps forward" toward her goal of regaining her life.
As most of you know, I started writing these posts when Alyssa fell ill in 2009. It was a way for us to keep everyone informed as well as provide me with an outlet for emotions, frustrations and quite honestly, fears. With a blog, you never quite know who your audience is, but hope that you are providing information that's interesting as well as informative. Our source site, Blogspot has now added a feature that allows us to track geographically where our readers are located. Over 1,000 are scattered throughout the US, but a large number of followers are from Japan, Canada, Germany, Russia, Ecuador (cousin Lisa,) Singapore, Spain UK, etc. Our assumption is that they are searching Soliris and hitting on our site. Alyssa's and two other similar a-HUS/Soliris transplants (Brandi in Iowa & Jose in Spain) are being watched very closely by both the medical community and families dealing with this awful disease from around the world.
A toast - May the information that we bring you continue to trend positive and the list of successful transplant names grow longer!
dd
Deb and I have switched places and now I'm with Alyssa at URMC as she continues the infusion process. It typically takes six hours, but we're not sure what kind of rate they have her on, so it could be as late as 10:00pm till she is finished. Unfortunately, she can't trade places with anyone, for a much needed break. This will be at minimum a 12 hour day and could go as high as 14. But we're looking at these as "steps forward" toward her goal of regaining her life.
As most of you know, I started writing these posts when Alyssa fell ill in 2009. It was a way for us to keep everyone informed as well as provide me with an outlet for emotions, frustrations and quite honestly, fears. With a blog, you never quite know who your audience is, but hope that you are providing information that's interesting as well as informative. Our source site, Blogspot has now added a feature that allows us to track geographically where our readers are located. Over 1,000 are scattered throughout the US, but a large number of followers are from Japan, Canada, Germany, Russia, Ecuador (cousin Lisa,) Singapore, Spain UK, etc. Our assumption is that they are searching Soliris and hitting on our site. Alyssa's and two other similar a-HUS/Soliris transplants (Brandi in Iowa & Jose in Spain) are being watched very closely by both the medical community and families dealing with this awful disease from around the world.
A toast - May the information that we bring you continue to trend positive and the list of successful transplant names grow longer!
dd
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