Today is "B" and I thought I would share some information about the annual "Blue & Green Day," which falls on April 19 this year. On this day, people are encouraged to don their blue and green to bring awareness to organ donation. According to the website, the purpose of the day is to "give HOPE to the more than 117,000 people on the organ transplant waiting list; HONOR organ, eye and tissue donors; REMEMBER those that died waiting for their second chance at life; and CELEBRATE the
patients who received the gift of life through transplantation." So, on April 19, I will be wearing my Donate Life shirt, carrying my Donate Life bag! I will be honoring not only Bean's donor but all those donors and their amazing families. I will be celebrating Bean's transplant and the life she received. And, I will do my best to remember all those who are not able to receive their needed organs while also holding out hope for all those still waiting.
If you have not already registered as an organ donor, please do so here! There is no greater gift than this - I speak from experience. And I hope you will consider donning some blue and green on April 19 and sharing my story if you don't have your own to share!
This blog is named for my daughter's heart transplant. In July, 2009, "Bean" received a new heart. It is my hope that this blog may help others going through major changes or living with major challenges.
Showing posts with label organ donation. Show all posts
Showing posts with label organ donation. Show all posts
Tuesday, April 2, 2013
Monday, April 1, 2013
Blogging A to Z in April - A is for April Being Donate Life Month
Well, it has been a while since I blogged here at A Second Heart! Bean has been doing well (check her out in that picture in the blog header - taken this past week) and I guess I didn't know how to reenter blogging here while lacking the exigence of her illness. But, I've decided that the Blogging from A to Z and Donate Life Month are the perfect means for making the comeback to posting. And I realize that I don't need to have it be medically related every time I post, although I have chosen Organ Donation and Transplant for the theme of my A to Z month, so it will continue to be somewhat medically related at least for a little while.
According to their website, the Blogging A to Z Challenge is:
Donate Life Month is an effort to increase registered donors so the 115,000 men, women and children awaiting organs will have a better chance of finding a match. There is even a Presidential Proclamation for the month! So, in honor of that and in the hopes to give back a little for the miracle we have received for my daughter, I will be blogging about Organ Donation and Transplant this April!
Looking ahead, I will be telling you about Blue and Green Day (April 19), Cardiac Catheterization (on the day that Bean is receiving her first one since that fateful day last year when they bumped her valve during one), Donors and their families, and that will be just the beginning of this week! I look forward to catching up with those of you who have been wondering how we are doing, spreading the word about organ donation and providing some information about transplant and the aftercare involved with it. I hope you will join me this month!
According to their website, the Blogging A to Z Challenge is:
So, I am starting today with A. I thought of using Allomap or Anti-rejection Medication (that may still come up under "I" for immune-suppression), but then I saw that April is Donate Life Month and so I decided that was the perfect first post for this theme!Using this premise, you would start beginning April First with a topic themed on something with the letterA, then on April second another topic with the letter B as the theme, and so on until you finish on April thirtieth with the theme based on the letter Z. It doesn't even have to be a word--it can be a proper noun, the letter used as a symbol, or the letter itself. The theme of the day is the letter scheduled for that day.
Donate Life Month is an effort to increase registered donors so the 115,000 men, women and children awaiting organs will have a better chance of finding a match. There is even a Presidential Proclamation for the month! So, in honor of that and in the hopes to give back a little for the miracle we have received for my daughter, I will be blogging about Organ Donation and Transplant this April!
Looking ahead, I will be telling you about Blue and Green Day (April 19), Cardiac Catheterization (on the day that Bean is receiving her first one since that fateful day last year when they bumped her valve during one), Donors and their families, and that will be just the beginning of this week! I look forward to catching up with those of you who have been wondering how we are doing, spreading the word about organ donation and providing some information about transplant and the aftercare involved with it. I hope you will join me this month!
Friday, November 18, 2011
Fantasy Land Friday - From Transplant to Triathlon
I originally came up with the idea of a Fantasy Land Friday post to identify all those things I wish, hope, yearn, and/or envision for my life. For instance, a clean house or a completed to-do list. Anyways, you get the idea. But, this first Fantasy Land Friday post will focus on something a bit different. I don't spend a ton of time thinking about Bean's long-term future. I don't know if that is normal or a result of fear or denial or just the result of my seeming inability to plan ahead for anything. I also think that its difficult at this point because she's only two and I don't know what her interests or talents are yet. But, I'm sure that part of it is fear of the future and what it will bring. Because of that, I love stories like this one:
There are a few things I love about his story. First, his transplant was back in 1986, which is pretty early in the transplant history, so long-term survival was usually predicted to be shorter than today. He says that they gave him 10 years, and now, almost 30 years later he is competing in Ironman triathlons! The second thing I love about his story is his willingness to be a "guinea pig" so-to-speak for figuring out the amount of stress a transplanted heart can take. I would love for Bean to do sports - not necessarily Ironmans, but some kind of sport and if she decides she wants to do a sport seriously, I would love for her to have confidence in being able to do that. The last thing that stood out for me was his recognition that many recipients never get the chance to meet their donor family. The media typically covers stories that include both the recipients and the donor families. Everyone asks about the donor...and its strange to know absolutely nothing...and hard to explain, but totally understandable from my perspective. But, perhaps at some point in the future, we will come to know more even if we never meet the donor family. And even if we never know more, I will always hold that family and their angel donor in my heart. And I will try to make sure that Bean does the same. I could not help but think that a boys suicide 30 years ago has given this man a chance to do amazing things and something that seemed hopeless and senseless has become something so full of hope and so meaningful.
So, here is something inspirational that I will definitely have Bean read in the future. Its a great story - hope you enjoy it as much as I did!
Sunday, July 17, 2011
Second Annual Heart Workup Tomorrow
Tomorrow morning we'll be at Lucille Packard Children's Hospital for Bean's second annual transplant workup. This is where they do all the same things they do at all her other biopsies, plus they check heart pressures and for narrowing and/or hardening of the arteries. The cath takes a bit longer than normal, so the recovery is also a bit longer than normal, which can make for a long day. But, it does not require an overnight stay, which I am thankful for. I am interested to see if Bean will be any more accepting of the appointment this time. Last time, she was a real bear to deal with during the hour and a half of pre-op we have to do. I am hoping she is a little less of an angry Bean tomorrow, but I am not holding my breath on that one!
I did an event in Oroville for the California Transplant Donor Network this week. It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered. I worked with a couple whose son was a donor 11 years ago. Their story was so touching and they are truly amazing people. Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento. They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no. He thought it was wrong. His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it. A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart. And they are obviously huge advocates for organ donation now. Their son was the first Latino in 10 years to donate his organs in that organ procurement area. Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory. His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States. Here is a picture of us in front of the one he had displayed at the health fair:
They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things. If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them. They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.
So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.
I did an event in Oroville for the California Transplant Donor Network this week. It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered. I worked with a couple whose son was a donor 11 years ago. Their story was so touching and they are truly amazing people. Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento. They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no. He thought it was wrong. His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it. A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart. And they are obviously huge advocates for organ donation now. Their son was the first Latino in 10 years to donate his organs in that organ procurement area. Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory. His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States. Here is a picture of us in front of the one he had displayed at the health fair:
They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things. If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them. They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.
So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.
Wednesday, July 6, 2011
Heart Birthday Number Two
Tomorrow marks Bean's second "heart birthday". She was born on 2/19/09, but she received the gift of life on 7/7/09. Last year we had a little celebration with balloons and cake, but this year, I am on the road visiting family, so we will probably only mark the day in a small way. But, I wanted to be sure that I posted here and told everyone reading this to please say a prayer and give thanks to the family that so generously made the decision to save lives that day in July 2009. I know that they will mark this day (or one in close proximity to it) in a much different way and I want to always remember that. I am so thankful for each day I have with the Bean. These last two years have been such a gift to us. And I believe that Bean has been a gift to others as well, and I hope she will continue to have the bright and shiny personality she has currently.
Life for and with the Bean will never be totally easy. There will always be the meds and the doctor appointments and the anxiety of facing the unknown. But, life with the Bean will always be totally satisfying. Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart. There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations. And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life. I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.
Yesterday was our country's birthday and Bean and I celebrated with my husband's family. He is away in Michigan working this month, so he was not there and we missed him. But, it was good to be with family and friends and celebrate the holiday. Bean may have overdone it a bit:
This was at 2 p.m. in the afternoon! She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching. But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa! She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention! So, overall, it was a great day for her!
Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!). In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall. My original plan was to hike in 2 miles (easy, flat hike) following the directions I found online. But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill. In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls. It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience. Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures! I will definitely have to put more waterfalls in future travel plans!
Tomorrow we leave my in-laws and head north, but not quite home. I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area. Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always). But, I will be very happy to get home next week again and spend some time in my own bed!
I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in. I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2. I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend! But, we shall see! Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:
We have been busy bugs ourselves these past few weeks and summer is flying by (where did June go?!?). We hope to get in a few more great experiences, reap the bounty from our gardening attempt, and even catch a wink or two of sleep along the way!
Life for and with the Bean will never be totally easy. There will always be the meds and the doctor appointments and the anxiety of facing the unknown. But, life with the Bean will always be totally satisfying. Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart. There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations. And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life. I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.
Yesterday was our country's birthday and Bean and I celebrated with my husband's family. He is away in Michigan working this month, so he was not there and we missed him. But, it was good to be with family and friends and celebrate the holiday. Bean may have overdone it a bit:
This was at 2 p.m. in the afternoon! She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching. But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa! She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention! So, overall, it was a great day for her!
Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!). In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall. My original plan was to hike in 2 miles (easy, flat hike) following the directions I found online. But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill. In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls. It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience. Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures! I will definitely have to put more waterfalls in future travel plans!
Tomorrow we leave my in-laws and head north, but not quite home. I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area. Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always). But, I will be very happy to get home next week again and spend some time in my own bed!
I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in. I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2. I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend! But, we shall see! Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:
| Excited to be leaving for the pool! |
| Looking like a little surfer girl! Chico may be inland, but this is definitely coastal wear! |
| Drying out and warming up after her first swim in a "big" pool! |
| She obviously isn't the only family member who loves the water! |
| Relaxing a bit with Daddy before he leaves for work for five weeks! |
| Working on our summer gardening venture... |
| In the pool with Theresa...she has progressed to NOT wanting help when in her floaties! |
| Playing with her Busy Bugs set and lovin' it! |
Friday, December 24, 2010
A Very Merry Christmas...
Well, maybe this picture is not the best representation of a Very Merry Christmas...but, really it is. Bean freaked out a bit for her Santa visit - to be fair to her, we had to wake her up from a deep sleep to get the picture. But, at least we have one this year. Last year, we missed out on Santa because of her immunity system. This year, we felt much more comfortable since she's been really healthy and we went to a relatively small-scale Santa for the visit (no mall - just a light show that Orland, CA does every year called Avenue of Lights - it was great).
I must admit that the last few months have been a little overwhelming for me. I just haven't been able to get a handle on things - grading, class prep, housecleaning, appointments for Bean, etc. It just all seemed to kind of pile up and I could never dig myself out. So, I was very happy to see the semester end if for no other reason that it would give me some time to get caught up and maybe even relax a bit. The relax part has not really hit yet because we had so much to do for Christmas prep - getting a tree, shopping, decorating the house, etc. - which was fun and turned out really well, but has still created a long list of to-dos since school ended.
The last month has been pretty good for Bean medicine-wise. She is now down to only four medicines in the a.m.! That's right - only four! I believe we started out with nine and we were still at seven up to a few weeks ago. But, she is no longer on the Predinisone, which meant she could come off the Pepcid (which she took because Prednisone often causes stomach problems), and she has stopped taking Lasix! It seems like something is missing each morning now, but what a relief to see her come off of some of the meds. So, our drug regimen is now:
8 a.m. - Prograf, Cellcept, Diltiazem and Magonate
2 p.m. - Diltiazem, Magonate and Lipitor
8 p.m. - Prograf, Cellcept, Diltiazem Magonate, Septra
Pretty simple compared to where we began just over a year ago! We are still playing with the Prograf levels and she is currently getting weekly blood tests to try to get the level where it should be - we've gone up, we've gone down, back up again one time a day, back down again. Hopefully we can get it figured out..but, until then, we just have to get blood tests and change the amounts. In addition, we are on a break from her Periactin, seeing if cycling off of it and coming back to it next week might jump start her appetite again. We'll see...
She has not grown as much as I had hoped. She is still wearing mostly 9 MO size clothes and still fits in some of her 6 MO pants. I am hoping she will be at least in 12 MO clothes by the time she turns two, but we shall see. We have an appointment with the endocrinologist at Lucille Packard in February as well - to get her checked out for growth and make sure everything is okay in that department. She also has a biopsy in January. So, not much of a break in the medical department for us, but at least I'm not teaching for the month of January, so its easier to schedule travel, etc.
We're excited to have Christmas at my parents tomorrow - Bean still doesn't really get the whole Christmas thing, but she loves tearing into paper and says a great "Wwwwoooowww" when she sees new things in a box or bag, so it should be fun. I will have some video rolling and will hopefully post something for you in the next week.
I hope everyone out there has a great Christmas and gets all the gifts they need and want. My thoughts and prayers will be going out to our donor family this holiday season - it must be a devastating time of year. I hope they can take some comfort in knowing that they have given this family the only Christmas gift that they would ever need - the health of our daughter. We love all the other gifts, but this is truly more than we could ever ask for or expect and it came from a stranger. Please remember that and send a good thought/prayer out to all the donor families who must deal with their loss this holiday season. And if you have not already, please consider becoming a donor and giving the most amazing gift out there...the gift of life.
Merry Christmas and to all a good night!
Sue, Jason and the Bean...
I must admit that the last few months have been a little overwhelming for me. I just haven't been able to get a handle on things - grading, class prep, housecleaning, appointments for Bean, etc. It just all seemed to kind of pile up and I could never dig myself out. So, I was very happy to see the semester end if for no other reason that it would give me some time to get caught up and maybe even relax a bit. The relax part has not really hit yet because we had so much to do for Christmas prep - getting a tree, shopping, decorating the house, etc. - which was fun and turned out really well, but has still created a long list of to-dos since school ended.
The last month has been pretty good for Bean medicine-wise. She is now down to only four medicines in the a.m.! That's right - only four! I believe we started out with nine and we were still at seven up to a few weeks ago. But, she is no longer on the Predinisone, which meant she could come off the Pepcid (which she took because Prednisone often causes stomach problems), and she has stopped taking Lasix! It seems like something is missing each morning now, but what a relief to see her come off of some of the meds. So, our drug regimen is now:
8 a.m. - Prograf, Cellcept, Diltiazem and Magonate
2 p.m. - Diltiazem, Magonate and Lipitor
8 p.m. - Prograf, Cellcept, Diltiazem Magonate, Septra
Pretty simple compared to where we began just over a year ago! We are still playing with the Prograf levels and she is currently getting weekly blood tests to try to get the level where it should be - we've gone up, we've gone down, back up again one time a day, back down again. Hopefully we can get it figured out..but, until then, we just have to get blood tests and change the amounts. In addition, we are on a break from her Periactin, seeing if cycling off of it and coming back to it next week might jump start her appetite again. We'll see...
She has not grown as much as I had hoped. She is still wearing mostly 9 MO size clothes and still fits in some of her 6 MO pants. I am hoping she will be at least in 12 MO clothes by the time she turns two, but we shall see. We have an appointment with the endocrinologist at Lucille Packard in February as well - to get her checked out for growth and make sure everything is okay in that department. She also has a biopsy in January. So, not much of a break in the medical department for us, but at least I'm not teaching for the month of January, so its easier to schedule travel, etc.
We're excited to have Christmas at my parents tomorrow - Bean still doesn't really get the whole Christmas thing, but she loves tearing into paper and says a great "Wwwwoooowww" when she sees new things in a box or bag, so it should be fun. I will have some video rolling and will hopefully post something for you in the next week.
I hope everyone out there has a great Christmas and gets all the gifts they need and want. My thoughts and prayers will be going out to our donor family this holiday season - it must be a devastating time of year. I hope they can take some comfort in knowing that they have given this family the only Christmas gift that they would ever need - the health of our daughter. We love all the other gifts, but this is truly more than we could ever ask for or expect and it came from a stranger. Please remember that and send a good thought/prayer out to all the donor families who must deal with their loss this holiday season. And if you have not already, please consider becoming a donor and giving the most amazing gift out there...the gift of life.
Merry Christmas and to all a good night!Sue, Jason and the Bean...
Tuesday, September 14, 2010
Back to Blogging Day One: Back to the Beginning
In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog. I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week). The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances. So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!
The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart. She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest). We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago. Needless to say, our lives have been turned upside down. We have to give Bean medications three times a day. We have to flush a broviac line (something like a semi-permanent IV) each day. She has a lot of doctors appointments that are about three and a half hours away from our home. We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry. My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges. We will need to figure out additional forms of income. We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean. We will need to deal with insurance debacles that are threatening to put accounts into collections. We will need to become aware of medical issues that come with Bean's medications and treatments. And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them. Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet. But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart. I hope you will find something that is helpful to you!
Well, there it is. It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago! We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully! We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life. I still need to get more organized. We are still constantly looking for additional sources of income and often short on money and time. We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month. We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast. We are hoping for the same this year! I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it! So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit! I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy. I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey. And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...
So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do: "get me back into a posting and commenting routine now that summer is over." I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began! Its a challenge...but, I feel motivated!
The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:
A Year of Thanksgiving...and Soul Searching
Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza. So, to me, today is the day after Thanksgiving - or leftovers day! I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks. So, this starts my year of Thanksgiving...My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart. She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest). We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago. Needless to say, our lives have been turned upside down. We have to give Bean medications three times a day. We have to flush a broviac line (something like a semi-permanent IV) each day. She has a lot of doctors appointments that are about three and a half hours away from our home. We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry. My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges. We will need to figure out additional forms of income. We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean. We will need to deal with insurance debacles that are threatening to put accounts into collections. We will need to become aware of medical issues that come with Bean's medications and treatments. And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them. Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet. But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart. I hope you will find something that is helpful to you!
Well, there it is. It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago! We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully! We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life. I still need to get more organized. We are still constantly looking for additional sources of income and often short on money and time. We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month. We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast. We are hoping for the same this year! I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it! So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit! I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy. I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey. And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...
So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do: "get me back into a posting and commenting routine now that summer is over." I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began! Its a challenge...but, I feel motivated!
Saturday, May 8, 2010
Unexpected Motherhood
As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection. I don't think motherhood is ever what we EXPECT it to be. After all, first-time mothers have NO IDEA what to expect. We all watch other people parent. We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything. In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen. But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared. And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up. Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton. She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for. Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do. It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky. But, I also realize there are things that are "typical" for me that other moms will never have to deal with. Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well). Getting blood drawn on a regular basis. Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists. Its all part of our lives now. And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey. It captures so much in just a few simple statements. My favorites include:
Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love. And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you. This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart. May you feel that love today and all your days.
I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.
I never knew how terrifying a simple stomach bug could be.
Those never knows become empowering "now I know"s soon enough. And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others. Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us. I am truly thankful and appreciative this Mother's Day!I never thought I'd know what an IEP is.
Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love. And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you. This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart. May you feel that love today and all your days.
Saturday, April 10, 2010
Are you an organ donor? Make it known!
As everyone who has followed this blog at all knows, my daughter is a heart transplant recipient. It still seems strange to say that, even though it has been 3/4 of a year since she received it. It just seems like such a foreign concept. Although I often heard of organ donation in the news and even from family and friends, I had never known anyone personally who had had one. And although I have always had the little pink sticker on my driver's license (that used to indicate organ donation - it now is directly on the new licenses), I had never really thought much about organ donation and the impact that every donor can make on the world. April is "Donate Life Month" so I wanted to remind all those who read this blog to consider becoming an organ donor and to make sure that if you make the decision to become an organ donor, to let those around you know! The first reason is to make sure your wishes are known, the second is to spread the word and get those who have not considered organ donation to think about it and make a decision for themselves.
In case you have not read Bean's story, I will take this chance to share some pertinent details, as well as some related statistics. Bean ended up at Lucille Packard Children's Hospital after being at two other hospitals, with a diagnosis of Idiopathic Dilated Cardiomyopathy. Although some children with this diagnosis can be treated for years and years with drugs, Bean was one of the approximate 33% who end up needing a heart transplant to survive. Because she was in the hospital, on a ventilator, she was listed as a 1A status with the United Network for Organ Sharing database. We were told at the time that we should expect a long wait and that she may need a "bridging device" in order to survive the long wait. A Berlin Heart was ordered for her and was kept on site in case her heart took a turn for the worse while waiting. One thing you soon learn when waiting for a transplant is that there is no "usual" - each story is different. But, the doctors and social workers still supply you with statistics in the hopes of giving you some idea of the range of possibilities. According to Science Daily, up to 40% of infants die while waiting for a donor heart and the average wait is two months, although new attempts at using ABO-incompatible hearts are showing promise in decreasing both those numbers. Because Bean was a preemie, she was extremely small (under seven pounds at the time she entered the hospital) and she also had the hardest blood type to match, so we were told that average of two months may stretch out to six months and even a year. We settled in at Stanford to wait. But, shockingly, a heart came in less than 30 days. On July 6, 2009 we received word there was a heart that was compatible and had been examined by the transplant team and found to be a good candidate for Bean. The surgery would wait until July 7, because other organs were also being donated and the heart is the last organ to be taken for donation. I don't know how many other babies were helped and maybe even saved by these donations, but it still amazes me that some parent was able to see through what must have been crushing grief to think about others who could be saved by their tragedy. I am so thankful for that decision.
Organ donation is a gift that gives exponentially. Obviously, Bean was saved by organ donation, but the effect of that is felt and known by a myriad of people and will be felt for years and years to come. According to UNOS data, today there are 106,937 people waiting for transplants and since January of 2010, only 2,198 transplants have been performed. Consider the impact you can have by becoming a donor.
Please feel free to use Bean's story to spread the word about the benefits of organ donation and if anyone out there reading would like me to share Bean's story with an organization, on a website or anywhere else to help raise awareness, please feel free to email me. I am in the process of becoming an Organ Donation Ambassador, but would love to share our story in any capacity.
I would also like to say to all the donors and donor families out there that I thank you. I thank you for thinking of others and impacting others in a way that few others are able. I would like to say that you are not only saving lives, but you are changing lives for many, many years to come with your gifts. Thank you, thank you, thank you.
In case you have not read Bean's story, I will take this chance to share some pertinent details, as well as some related statistics. Bean ended up at Lucille Packard Children's Hospital after being at two other hospitals, with a diagnosis of Idiopathic Dilated Cardiomyopathy. Although some children with this diagnosis can be treated for years and years with drugs, Bean was one of the approximate 33% who end up needing a heart transplant to survive. Because she was in the hospital, on a ventilator, she was listed as a 1A status with the United Network for Organ Sharing database. We were told at the time that we should expect a long wait and that she may need a "bridging device" in order to survive the long wait. A Berlin Heart was ordered for her and was kept on site in case her heart took a turn for the worse while waiting. One thing you soon learn when waiting for a transplant is that there is no "usual" - each story is different. But, the doctors and social workers still supply you with statistics in the hopes of giving you some idea of the range of possibilities. According to Science Daily, up to 40% of infants die while waiting for a donor heart and the average wait is two months, although new attempts at using ABO-incompatible hearts are showing promise in decreasing both those numbers. Because Bean was a preemie, she was extremely small (under seven pounds at the time she entered the hospital) and she also had the hardest blood type to match, so we were told that average of two months may stretch out to six months and even a year. We settled in at Stanford to wait. But, shockingly, a heart came in less than 30 days. On July 6, 2009 we received word there was a heart that was compatible and had been examined by the transplant team and found to be a good candidate for Bean. The surgery would wait until July 7, because other organs were also being donated and the heart is the last organ to be taken for donation. I don't know how many other babies were helped and maybe even saved by these donations, but it still amazes me that some parent was able to see through what must have been crushing grief to think about others who could be saved by their tragedy. I am so thankful for that decision.
Organ donation is a gift that gives exponentially. Obviously, Bean was saved by organ donation, but the effect of that is felt and known by a myriad of people and will be felt for years and years to come. According to UNOS data, today there are 106,937 people waiting for transplants and since January of 2010, only 2,198 transplants have been performed. Consider the impact you can have by becoming a donor.
Please feel free to use Bean's story to spread the word about the benefits of organ donation and if anyone out there reading would like me to share Bean's story with an organization, on a website or anywhere else to help raise awareness, please feel free to email me. I am in the process of becoming an Organ Donation Ambassador, but would love to share our story in any capacity.
I would also like to say to all the donors and donor families out there that I thank you. I thank you for thinking of others and impacting others in a way that few others are able. I would like to say that you are not only saving lives, but you are changing lives for many, many years to come with your gifts. Thank you, thank you, thank you.
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