Mom and Dad were able to join us for Thanksgiving this year. I made my first Turkey Day feast (see my other blog, http://berrybrandonnicole.blogspot.com for more info on that), and we had a wonderful time together with Brandon's family.
One funny thing that happened was before we ate, we all went around the table sharing what everyone was thankful for in our lives. At the beginning of this exercise, Ella announced that she had to use the potty (she's in training these days), so someone ushered her excitedly into the bathroom. We heard her potty play the reward music and she ran back into the living room announcing, "I did it!!!". We all clapped and congratulated her and then went back to our pre-meal sharing time.
Then as Mom was sharing what was in her heart...and the tears were coming to us as emotions were running high, Ella decided that our applause wasn't enough for her because she ran back to the bathroom and carried her potty (it hadn't even yet been emptied!) down the hall and to the dining table, exclaiming, "Guys, I pee-peed in the POTTY! See?????"
Thank God for a little comic relief, right?
Sunday, November 29, 2009
Thursday, November 19, 2009
Another Good E & A Fix
After being discharged from the Cleveland Clinic this weekend, Mom and Dad stopped in Greenville to see us on Sunday night on their way home. It had been a while since their last "E & A fix", and they needed a booster shot, so to speak.
The girls were excited to see Grammy and Pappy, too. We let them stay up a little later on Sunday night to see them when they arrived. We all went to bed shortly after that and woke up on Monday morning to some good breakfast and family time.
Brandon had to go into the office around lunch, but the rest of us stayed home and enjoyed each other's company immensely. It is interesting to see how much we cherish each minute now. Some of them are filled with joy, some sadness...it's all a part of the process, I guess. We are past the wierdness of spontaneous tears...they seem to come and go throughout the day. But, for the most part, we're just having fun watching Ella and Allie be awesome kids.
Allie has always had eyes for her Grammy. Mom says she looks at her like she sees her soul or something. It's fun to watch them stare at each other. Allie has gotten to be quite active now, though, so she'll grab for Mom's oxygen mask or at her Flolan tubes, so I have to be close by to make sure things stay where they should...supervised visits!
They left on Tuesday morning, and headed to Columbia. It had been a week since they'd been home and seen their kitties, who I'm sure, were very glad to have them back.
If all goes as planned and Mom's up to it, I'm hosting Thanksgiving at my house and both families will be here to celebrate.
We have much to be thankful for.
The girls were excited to see Grammy and Pappy, too. We let them stay up a little later on Sunday night to see them when they arrived. We all went to bed shortly after that and woke up on Monday morning to some good breakfast and family time.
Brandon had to go into the office around lunch, but the rest of us stayed home and enjoyed each other's company immensely. It is interesting to see how much we cherish each minute now. Some of them are filled with joy, some sadness...it's all a part of the process, I guess. We are past the wierdness of spontaneous tears...they seem to come and go throughout the day. But, for the most part, we're just having fun watching Ella and Allie be awesome kids.
Allie has always had eyes for her Grammy. Mom says she looks at her like she sees her soul or something. It's fun to watch them stare at each other. Allie has gotten to be quite active now, though, so she'll grab for Mom's oxygen mask or at her Flolan tubes, so I have to be close by to make sure things stay where they should...supervised visits!
They left on Tuesday morning, and headed to Columbia. It had been a week since they'd been home and seen their kitties, who I'm sure, were very glad to have them back.
If all goes as planned and Mom's up to it, I'm hosting Thanksgiving at my house and both families will be here to celebrate.
We have much to be thankful for.
Thursday, November 12, 2009
A Little Run Down
Mom and Dad made a trip up to Cleveland for a checkup. The trip often times wears her out, so I was not surprised to hear that they admitted her to the hospital to get her back on her feet again. She said last night was rough as they gave her some potassium which upset her stomach. Dad is with her right now, and they have not yet heard when they will be discharged. We are looking forward to the possiblity of them stopping by for an E & A Fix (see below for details). It all depends on how she's feeling on the trip home.
Speaking of Ella & Allie...they are doing great. Allie is getting her 4th tooth in today, so she's a little bit fussy. She's also crawling at lightning fast speeds, pulling up on anything she can, cruising around the furniture, and also doing a little, "look mom, no hands!" and standing on her own before her diapered heiny hits the floor. She's so animated and energetic--I have a hard time keeping up with her! Yesterday she was pulling up on the coffee table and bumped her eye on the underside of one of the corners that juts out...I thought I was such a good mama for child-proofing the corners from the top-side in case they fall into them...didn't think about doing the underside, too! She's fine, didn't cry too much I was more upset than her...a tough little girl and a tough lesson for mama.
By the way...happy birthday to Dale (one of mom's bff's) and Mommom (Mom's mom!) Love y'all! Another year old and better looking, I say!
Speaking of Ella & Allie...they are doing great. Allie is getting her 4th tooth in today, so she's a little bit fussy. She's also crawling at lightning fast speeds, pulling up on anything she can, cruising around the furniture, and also doing a little, "look mom, no hands!" and standing on her own before her diapered heiny hits the floor. She's so animated and energetic--I have a hard time keeping up with her! Yesterday she was pulling up on the coffee table and bumped her eye on the underside of one of the corners that juts out...I thought I was such a good mama for child-proofing the corners from the top-side in case they fall into them...didn't think about doing the underside, too! She's fine, didn't cry too much I was more upset than her...a tough little girl and a tough lesson for mama.
By the way...happy birthday to Dale (one of mom's bff's) and Mommom (Mom's mom!) Love y'all! Another year old and better looking, I say!
Tuesday, November 10, 2009
Now to the 'Fund' Part...
This November will mark the 4 year anniversary of Cris’ diagnosis with PH, and she has defied all of the prognosis reports she’s been given thus far! We are so thankful to have her with us as she continues to spread love, joy, and encouragement to everyone. Since she’s begun battling, she’s seen the birth of two granddaughters who brighten her life in special ways, and have given her even more reason not to give up. With all that we have to be thankful for, we are still very aware that we are in a battle. Cris’ disease is in its last stage. She is currently on the transplant list for a new set of lungs, and an anticipated surgery is set to be performed at the Cleveland Clinic in OH, one of the country’s best hospitals.
Despite the fact that many lungs have already been given to other recipients because they have not matched Cris, the doctors are still saying that there is hope, and that the matching lungs could arrive any minute. So we continue to believe that she will have another opportunity to live life to the fullest and have an impact on those around her for years to come. When a matching pair of lungs arrives, the Cleveland Clinic will notify Jack and Cris and then send a private jet to transport them to Cleveland where final tests will be performed to ensure the best success rate. The operation will then take place. After the operation, Cris can expect to stay in the hospital a couple of weeks and then be discharged to rehabilitate anywhere from 8 to 10 weeks. During this time Jack will no doubt be by her side encouraging her healing, and I (Nicole) will be traveling back and forth as much as possible.
Until then, every two months, Jack and Cris travel to Cleveland for her examinations by the transplant team. This is a long and difficult endeavor, but they have been able to make the most of it. Jack has considerably reduced his business workload to be able to give Cris around-the-clock care. Who knew that he would turn out to be so great a nurse and caregiver?!? We are amazed at the sacrificial love that he has displayed again and again.
Unfortunately, with all the travel expenses to Ohio and North Carolina, and the impending uninsured costs of the transplant, rehabilitation, medication, and caretaker expenses in Cleveland, our family is looking at what seems to be an ever-increasing pile of potential financial hardship. We have come to the humbling realization that we cannot do everything on our own. We have been blessed to be surrounded by faithful friends and family, coworkers and neighbors who have asked again and again, “what can I do to help?”
Asking for help is never easy, and you may know that it is especially hard for someone who is used to giving the help. With that being said, we would like to ask you to consider how you may help the Malseed family in our time of need. Here are a few ways:
• We have partnered with the National Transplant Assistance Fund, a non-profit organization that has been assisting the transplant community for the past 25 years. All contributions are administered by NTAF exclusively for uninsured transplant-related expenses. Donations are tax-deductible to the full extent of the law. You can send your tax-deductible donations with the attached form to: NTAF South-Atlantic Lung Transplant Fund, 150 N. Radnor Chester Rd., Ste. F-120, Radnor, PA 19087. Print in memo section of check: “In Honor of Cris Malseed” or donate online at www.transplantfund.org and enter Malseed in the box on the NTAF homepage.
• Every uplifting word can help Cris and Jack. You can encourage them by dropping a note in the mail or email (crismalseed@hotmail.com, jackmalseed@hotmail.com). You can also follow updates through our blog: http://battlingph.blogspot.com.
• We believe in a mighty God who has the power to do anything…far beyond what we can even ask or imagine (Ephesians 3:20)! It would mean so much for you to join us in praying for God’s will to be done in this situation, for Him to provide through His people, and for Him to be glorified in our lives. Pray for continued strength and patience for our family as we battle Pulmonary Hypertension.
Thank you in advance for your love and support.
Joyfully,
The Malseed Family (Cris, Jack, and Nicole Berry)
Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.
Despite the fact that many lungs have already been given to other recipients because they have not matched Cris, the doctors are still saying that there is hope, and that the matching lungs could arrive any minute. So we continue to believe that she will have another opportunity to live life to the fullest and have an impact on those around her for years to come. When a matching pair of lungs arrives, the Cleveland Clinic will notify Jack and Cris and then send a private jet to transport them to Cleveland where final tests will be performed to ensure the best success rate. The operation will then take place. After the operation, Cris can expect to stay in the hospital a couple of weeks and then be discharged to rehabilitate anywhere from 8 to 10 weeks. During this time Jack will no doubt be by her side encouraging her healing, and I (Nicole) will be traveling back and forth as much as possible.
Until then, every two months, Jack and Cris travel to Cleveland for her examinations by the transplant team. This is a long and difficult endeavor, but they have been able to make the most of it. Jack has considerably reduced his business workload to be able to give Cris around-the-clock care. Who knew that he would turn out to be so great a nurse and caregiver?!? We are amazed at the sacrificial love that he has displayed again and again.
Unfortunately, with all the travel expenses to Ohio and North Carolina, and the impending uninsured costs of the transplant, rehabilitation, medication, and caretaker expenses in Cleveland, our family is looking at what seems to be an ever-increasing pile of potential financial hardship. We have come to the humbling realization that we cannot do everything on our own. We have been blessed to be surrounded by faithful friends and family, coworkers and neighbors who have asked again and again, “what can I do to help?”
Asking for help is never easy, and you may know that it is especially hard for someone who is used to giving the help. With that being said, we would like to ask you to consider how you may help the Malseed family in our time of need. Here are a few ways:
• We have partnered with the National Transplant Assistance Fund, a non-profit organization that has been assisting the transplant community for the past 25 years. All contributions are administered by NTAF exclusively for uninsured transplant-related expenses. Donations are tax-deductible to the full extent of the law. You can send your tax-deductible donations with the attached form to: NTAF South-Atlantic Lung Transplant Fund, 150 N. Radnor Chester Rd., Ste. F-120, Radnor, PA 19087. Print in memo section of check: “In Honor of Cris Malseed” or donate online at www.transplantfund.org and enter Malseed in the box on the NTAF homepage.
• Every uplifting word can help Cris and Jack. You can encourage them by dropping a note in the mail or email (crismalseed@hotmail.com, jackmalseed@hotmail.com). You can also follow updates through our blog: http://battlingph.blogspot.com.
• We believe in a mighty God who has the power to do anything…far beyond what we can even ask or imagine (Ephesians 3:20)! It would mean so much for you to join us in praying for God’s will to be done in this situation, for Him to provide through His people, and for Him to be glorified in our lives. Pray for continued strength and patience for our family as we battle Pulmonary Hypertension.
Thank you in advance for your love and support.
Joyfully,
The Malseed Family (Cris, Jack, and Nicole Berry)
Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.
Monday, October 26, 2009
That's What Friends Are For!
For good times, for bad times...I'll be on your side forevermore...That's what friends are for...
Mom had a hard week last week. On Wednesday she had an attack during the short amount of time that she was left alone while Dad had to get something done outside the house. She had to get across the room to get a new tank of oxygen (when she walks, she has to switch from a machine to a tank because the tank can deliever more oxygen at a time than the machine-she went through her tank much more quickly than expected on this day), and wasn't able to lift it (anyone got a good idea for a lighter oxygen tank...we could be millionaires!). She broke out in a cold sweat, and by the time she got the tank where it needed to be, her sweaty palms couldn't grip the dial enough to turn it on! She called Dad, who sent a neighbor over to help until he could arrive.
It took her much longer to recover from that episode than she would've liked, and she had to miss the 60th birthday party of one of her closest friends. By the time it rolled around on Saturday, she was too weak to take a shower, and Dad ended up calling the ambulance to come and take her to the ER to be evaluated as to whether Cleveland should send a plane to come and get her and put her on a heart/lung machine to await her transplant. At the ER it was determined that she wasn't as bad. Her meds were adjusted and they were sent home. By Sunday, she felt a lot better.
But before she left the ER, she was surprised by her friends who were all at the party! Dale, the hostess, had been in contact with Dad, and after celebrating Dee's 60th for a while at the house, the whole crew packed up a couple of plates of food and trucked it down to Lexington Medical Center where they went in 2 by 2 to see Mom and Dad! While it was an awesome act, I really wasn't surprised when I heard what happened.
Mom & Dad have been in the same group of friends for close to 30 years. Most of the gang lived in our cul-de-sac when we moved to SC back in 1982. Others have been added to the group through one person or another. The tight-knit clan has seen many ups and downs...divorce and the death of loved ones, celebrations of marriage and grandbabies, graduations and promotions...through thick and thin they have always been together. We are so thankful to have this "family" in our lives, especially when tough times come along.
Saturday, October 24, 2009
All I Want For Christmas...
It's getting to be that time...time to start planning how we are going to spend the holidays. Things get sticky when you get married and have to split time between the two families-especially when there are grandkids involved.
We have found that since we've been married, we've been more apt to give the creme de la creme time to my parents, and have often times had to fit in Brandon's family when we could. This is for obvious reasons, but in case you're not into the obvious, I'll spell it out for you...every holiday we think, "well, this could be our last..."
Our first Christmas together as a married couple, Brandon and I spent at MUSC. I remember wanting so badly to carry on our family tradition of going out to lunch on Christmas Eve. Since Mom was in the hospital, that obviously wasn't possible. But Brandon and I went throughout downtown Charleston (not a bad place to be, if you've got to be visiting a hospital) and got takeout from various favorite restaurants. We brought it back, put some white sheets over a rolling tray and had a spread that I still remember tasted and looked so good...right there in her room. Then Brandon pulled out his violin and played Christmas carols for Mom and all the nurses and anyone else who was confined to a hospital bed. I remember waking up in my best friend's parents' house and being with them as they opened gifts, then going over to visit mom in her hospital room. It was very strange, but very sweet. It was the first year that we didn't really have presents to open or a tree to sit around, but we realized how blessed we were to just have each other.
During our second Christmas together, I remember being at Mom and Dad's on Christmas Eve. No lunch, no takeout, but Mom did manage to cook that year. I remember her wanting to pray that night before we opened our gifts. It was a precious prayer that I will never forget...we were all so thankful to be together, so thankful for the new life that was growing inside of my womb at the time, so thankful for our relationships with Jesus.
During our third Christmas together, Ella was only a few months old. Mom and Dad were living in NC, and Mom was in the Duke program. We tried to go out to our Christmas Eve lunch, but chose a horrible restaurant. Mom started not feeling well, and by that evening Dad had to take her to the ER at Duke where she was admitted. Brandon and I stayed at their apartment and read Cosmic Christmas to some family members before turning in. In the morning, we packed up our stuff, drove to the hospital and sat with Mom and Dad as Ella cooed at them in her little Santa hat and Christmas pjs.
Last year was our 4th Christmas together. Christmas Eve lunch was spent out again at Macaroni Grille. The cool story about that outing was that Brandon and I offered to pay because we had redeemed CC points for a gift certificate...only problem was that it hadn't come in yet! So we were waiting all week for it. Mom and Dad drove to Greenville to spend the night with us and we were literally getting in the car to go to lunch when the mailman arrived and delivered our gift certificate! Woohoo! We had an awesome meal together, and Mom and Dad got to watch Ella tear into gifts around our huge Christmas tree. It was a very special holiday for all of us.
So...this will be our 5th Christmas together, and Mom's 5th Christmas with Pulmonary Hypertension. Allie has joined our family and will experience Christmas for the first time. Ella will be really into it, I'm sure.
We are always thankful for each passing year we have together, but they seem to be ever sweeter when we understand the possiblity that each may be our last. We hold each moment tightly and cherish each memory. This Christmas would be a great time to celebrate Mom's recovery with a new pair of lungs! That's all I want for Christmas...
A special thanks to the Berry family for your understanding hearts and attitudes. The grace you've bestowed on us during these tough times has been outstanding, especially around the holidays when our travel plans have usually been centered around Mom and Dad's whereabouts and conditions.
We have found that since we've been married, we've been more apt to give the creme de la creme time to my parents, and have often times had to fit in Brandon's family when we could. This is for obvious reasons, but in case you're not into the obvious, I'll spell it out for you...every holiday we think, "well, this could be our last..."
Our first Christmas together as a married couple, Brandon and I spent at MUSC. I remember wanting so badly to carry on our family tradition of going out to lunch on Christmas Eve. Since Mom was in the hospital, that obviously wasn't possible. But Brandon and I went throughout downtown Charleston (not a bad place to be, if you've got to be visiting a hospital) and got takeout from various favorite restaurants. We brought it back, put some white sheets over a rolling tray and had a spread that I still remember tasted and looked so good...right there in her room. Then Brandon pulled out his violin and played Christmas carols for Mom and all the nurses and anyone else who was confined to a hospital bed. I remember waking up in my best friend's parents' house and being with them as they opened gifts, then going over to visit mom in her hospital room. It was very strange, but very sweet. It was the first year that we didn't really have presents to open or a tree to sit around, but we realized how blessed we were to just have each other.
During our second Christmas together, I remember being at Mom and Dad's on Christmas Eve. No lunch, no takeout, but Mom did manage to cook that year. I remember her wanting to pray that night before we opened our gifts. It was a precious prayer that I will never forget...we were all so thankful to be together, so thankful for the new life that was growing inside of my womb at the time, so thankful for our relationships with Jesus.
During our third Christmas together, Ella was only a few months old. Mom and Dad were living in NC, and Mom was in the Duke program. We tried to go out to our Christmas Eve lunch, but chose a horrible restaurant. Mom started not feeling well, and by that evening Dad had to take her to the ER at Duke where she was admitted. Brandon and I stayed at their apartment and read Cosmic Christmas to some family members before turning in. In the morning, we packed up our stuff, drove to the hospital and sat with Mom and Dad as Ella cooed at them in her little Santa hat and Christmas pjs.
Last year was our 4th Christmas together. Christmas Eve lunch was spent out again at Macaroni Grille. The cool story about that outing was that Brandon and I offered to pay because we had redeemed CC points for a gift certificate...only problem was that it hadn't come in yet! So we were waiting all week for it. Mom and Dad drove to Greenville to spend the night with us and we were literally getting in the car to go to lunch when the mailman arrived and delivered our gift certificate! Woohoo! We had an awesome meal together, and Mom and Dad got to watch Ella tear into gifts around our huge Christmas tree. It was a very special holiday for all of us.
So...this will be our 5th Christmas together, and Mom's 5th Christmas with Pulmonary Hypertension. Allie has joined our family and will experience Christmas for the first time. Ella will be really into it, I'm sure.
We are always thankful for each passing year we have together, but they seem to be ever sweeter when we understand the possiblity that each may be our last. We hold each moment tightly and cherish each memory. This Christmas would be a great time to celebrate Mom's recovery with a new pair of lungs! That's all I want for Christmas...
A special thanks to the Berry family for your understanding hearts and attitudes. The grace you've bestowed on us during these tough times has been outstanding, especially around the holidays when our travel plans have usually been centered around Mom and Dad's whereabouts and conditions.
Monday, October 12, 2009
Fundraising
Well...I admit, we're getting a late start on this. I don't know what kept us from getting going on raising funds for Mom's transplant, but whatever it was...we finally got with the program. Or...we're getting with the program.
We are considering partnering with the National Transplant Assistance Fund to help us raise funds to pay for transplant-related expenses that are not covered by Mom's insurance.
Please stay posted to find out how you can help!
We are considering partnering with the National Transplant Assistance Fund to help us raise funds to pay for transplant-related expenses that are not covered by Mom's insurance.
Please stay posted to find out how you can help!
Wednesday, October 7, 2009
A Real Catch
My friend from Furman, Megan Carson, wrote a book about going on blind dates and finding "the One". I have enjoyed getting on her website (http://www.megancarson.com/) and reading her blog posts. Today I came across an article that she found in the Boston Globe, written by a breast cancer doctor.
http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/will_he_hold_your_purse/
If you don't want to read the whole article, the gist of it is that there is a misconception among many young singles who are looking for lifelong partners...they think they want partners to romance them with sunset walks on beaches and French food. But what the author is pointing out is that the REAL CATCH is someone who will hold his wife's purse as she gets radiation treatment for breast cancer. I inserted my parent's situation with Pulmonary Hypertension in for her references to Cancer and this is what I came up with:
WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with bad news, and who will keep his cell phone close at all times waiting for "the call". A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 90-10, and that’s OK, even when the 90-10 phase goes on and on. A man who truly doesn’t care what somebody looks like after battling PH for 4 years, in and out of ICU, and with a permanent port sticking in her chest, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “Pulmonary Hypertension death sentence” in a Google search. And, most of all, a partner who will sit in a transplant clinic waiting room and hold hard onto the purse on his lap.
Daddy, you are a REAL CATCH, and Mom's a very blessed woman to have caught you.
http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/will_he_hold_your_purse/
If you don't want to read the whole article, the gist of it is that there is a misconception among many young singles who are looking for lifelong partners...they think they want partners to romance them with sunset walks on beaches and French food. But what the author is pointing out is that the REAL CATCH is someone who will hold his wife's purse as she gets radiation treatment for breast cancer. I inserted my parent's situation with Pulmonary Hypertension in for her references to Cancer and this is what I came up with:
WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with bad news, and who will keep his cell phone close at all times waiting for "the call". A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 90-10, and that’s OK, even when the 90-10 phase goes on and on. A man who truly doesn’t care what somebody looks like after battling PH for 4 years, in and out of ICU, and with a permanent port sticking in her chest, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “Pulmonary Hypertension death sentence” in a Google search. And, most of all, a partner who will sit in a transplant clinic waiting room and hold hard onto the purse on his lap.
Daddy, you are a REAL CATCH, and Mom's a very blessed woman to have caught you.
Monday, October 5, 2009
The E & A Fix
Mom and Dad affectionately say they need an "E & A fix". That's Ella and Allie, their precious grandbabies who live about an hour and a half away. And then they say, "and of course we want to see you and Brandon, too!" Riiiiight! I know where I stand now! Ha ha! :)
Brandon and I decided to pack up the car and the kids and trek down there. We arrived Friday at lunchtime and had a wonderful visit. Allie has just cut two teeth and is beginning to crawl. Tomorrow she will be 6 months old. Ella is into everything, and was a total angel the whole time we were there.
We had some good talks, some difficult talks, some great weather, some great food, and a lot of fun. There are a lot of topics of conversation that I honestly never thought I'd have to engage in at such a young age concerning tying up loose ends "just in case". Mom has always liked to be prepared, and I'm glad for it.
Most of our time was just spent in each other's company. It is a precious commodity that I don't take for granted anymore.
Cleveland Trip September 2009
Mom and Dad went to Cleveland the last week in September to meet with her transplant team. Honestly, they told her they were surprised to see her again because she was so sick the last time she was there two months ago. (They go every two months for check ups while she waits for a matching new pair of lungs to become available.) At that last appointment she was given very grim news, but just like every other prognosis report, she has outlived it and surprised the doctors in doing so. I wonder why they keep giving her timelines?
So, the doctors said that everything is being done to find a match, but unfortunately they have already performed 124 transplants since she has been #1 on the list (that means that each available pair goes through her grid first to see if it's a match and if not, it goes through the #2 person's grid, and so on).
That's a lot of lungs.
Mom's issues have to do with size and her antibodies in her blood. She has a very high amount of antibodies, so a qualifiying pair of lungs will have to come from someone who has a low amount so that they do not fight, and her body doesn't reject them. We knew going into this that there was a small percentage chance that she would have a match come available. But barring a miracle, it's our only chance, so we're taking it!
Anyway, the rest of the trip went quickly and uneventfully. She didn't get admitted to the hospital this time, so we were all thankful. On their way home, Mom and Dad got to stop in Greensboro to visit Leslie & Keith, and Karen & Dennis. These are Dad's cousins (Keith and Karen). Leslie is battling against cancer, so they wanted to go and encourage her in her time of need.
So, the doctors said that everything is being done to find a match, but unfortunately they have already performed 124 transplants since she has been #1 on the list (that means that each available pair goes through her grid first to see if it's a match and if not, it goes through the #2 person's grid, and so on).
That's a lot of lungs.
Mom's issues have to do with size and her antibodies in her blood. She has a very high amount of antibodies, so a qualifiying pair of lungs will have to come from someone who has a low amount so that they do not fight, and her body doesn't reject them. We knew going into this that there was a small percentage chance that she would have a match come available. But barring a miracle, it's our only chance, so we're taking it!
Anyway, the rest of the trip went quickly and uneventfully. She didn't get admitted to the hospital this time, so we were all thankful. On their way home, Mom and Dad got to stop in Greensboro to visit Leslie & Keith, and Karen & Dennis. These are Dad's cousins (Keith and Karen). Leslie is battling against cancer, so they wanted to go and encourage her in her time of need.
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