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Dj's Mom
Member
Username: Djsmom

Post Number: 1
Registered: 05-2010
Posted on Saturday, May 08, 2010 - 08:04 pm:   Edit Post Delete Post Print Post

Hello, I am writing this from a hospital room in Northern Virginia as I watch my daughter,who is 14 days post double lung transplant, getting her breathing treatments for the third time tonight.
My daughter "Dj" was transplanted April 22,2010. It was a scary night for her and us. She is doing well with recovery. She still has two chest tubes in her left side. As a mom, I am completely exhasted emotionally. it is very hard to keep a serene and positive face when just below the surface all you want to do is cry.
My daughter is a brave young lady and is going through this head on, It has been difficult for us without having any others to relate to who has gone through transplant. I found this website by googling support groups. If there is anyone out there who can share thier experience with us about transplant. How has it effected your life, your quality of life, we just need someone to relate to who has been through it. Thank You
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13030
Registered: 05-2003
Posted on Saturday, May 08, 2010 - 08:42 pm:   Edit Post Delete Post Print Post

Hello DJ's Mom,

Welcome to Transplant Buddies :-) Congratulations! I am so happy to hear someone breathing with new lungs. God Bless all Organ Donors and their families.

You can read about my experience here-http://www.transplantbuddies.org/html/life_stories.php#risa

Every transplant patient has a unique experience. We all have our ups and downs.

I found that regular exercise and a good healthy diet keeps me as healthy as possible.

Remember to always take care of yourself. By doing so you can teach by example. I hope you have support from family members so you can get your rest.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
Transplant Friends.com

Questions or Suggestions- Email Hostess Rise'
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2285
Registered: 03-2008
Posted on Sunday, May 09, 2010 - 07:52 am:   Edit Post Delete Post Print Post

Welcome Dj's Mom! This is a wonderful place to call "home". Check out the Heart-Lung Forum and I am sure you will find stories and a wealth of support from the members there. I am hoping things calm down and you both are home soon. A very Happy Mother's Day to you, and I am sure your daughter appreciates your love and support.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

I walk slowly, but I never walk backward - Abraham Lincoln
Dj's Mom
Member
Username: Djsmom

Post Number: 3
Registered: 05-2010
Posted on Tuesday, May 11, 2010 - 12:46 pm:   Edit Post Delete Post Print Post

Good Afternon/Evening, writing today, from the hospital room waiting for Dj to get back from getting her right lung drained with a needle instead of them putting another tube in for drainage. Also, the left anterior pigtail tube is coming out today as well leaving only the large tube in the lower left.
Dj did her walking yesterday and she did 5 laps around the floor"wohoo" the last two of those on room air and maintained her O2 sats at 97%. So she s now off oxygen and still looks pink and rosy!!
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13069
Registered: 05-2003
Posted on Tuesday, May 11, 2010 - 01:00 pm:   Edit Post Delete Post Print Post

Fantastic News!

It is wonderful hearing from you. Please give DJ my best.

Tell her to start dreaming of all the things she would like to
accomplish with her life.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
Transplant Friends.com

Questions or Suggestions- Email Hostess Rise'
Dj's Mom
Member
Username: Djsmom

Post Number: 4
Registered: 05-2010
Posted on Tuesday, May 11, 2010 - 03:21 pm:   Edit Post Delete Post Print Post

Ok, so the tubes are staying in for now, they now are saying possibly tomorrow. Dj is having a hard day. she maintains her O2 sats on room air but her heart rate is up at resting. In comes the nurse to give dj what I call her "dish of pills". She just needs rest now and tomorrow is another day on the road to recovery.
Dj's Mom
Member
Username: Djsmom

Post Number: 5
Registered: 05-2010
Posted on Wednesday, May 12, 2010 - 09:53 am:   Edit Post Delete Post Print Post

What a great day!! Dj will be able to leave the hospital on Friday!! We are so excited. It has been a long journey and I have to say that my daughter's courage and patients through this has touched my life in so many ways. I am humbled by her ability to overcome this amazing hurdle. Today we start our education on all the medicines and and such and diet tips and how to take her blood sugar. Time to take lots of notes!
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13076
Registered: 05-2003
Posted on Wednesday, May 12, 2010 - 11:05 am:   Edit Post Delete Post Print Post

Excellent /News! I am so happy for you both.

You will continue to be touched as you see her venture out and explore her new life.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
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Questions or Suggestions- Email Hostess Rise'
BreathinSteven
Forum Leader
Username: Breathinsteven

Post Number: 2068
Registered: 11-2004
Posted on Wednesday, May 12, 2010 - 11:13 am:   Edit Post Delete Post Print Post

Hey Mom!!!

I'm so happy for you, and for your precious daughter DJ... That's awesome that she's getting out of the hospital Friday!!! It's awesome, and a little scary too -- it's a time when you feel like you're suddenly on your own, but help is still just a phone call away...

I'm guessing that DJ has cystic fibrosis -- though there are a number of diseases that can result in lung transplant, that is the most common for patients in their late teens and early twenties... I imagine it was pretty wonderful seeing her walk five laps yesterday -- and two of them on room air... You just wait a few months when you see her run for the first time!!! You'll look back on these difficult, exhausting, frightening weeks and you'll smile... DJ has gotten over the biggest hump in this whole process -- there are going to be more bumps in the road, but she made it over the biggest one already and she'll make it over the next ones...

And I hope she finds this breathing stuff completely amazing... Like I'm imagining DJ has, I have cystic fibrosis... All my life with my lousy lungs, people commented on my strength and courage -- I didn't know any better -- it was just life to me, like it's been just life to DJ... I never understood how much I was struggling... Every day, every week, every year it was just a little bit worse -- but it was life, and it was all we knew... I never, ever understood that breathing could feel this easy, and this wonderful... DJ is just a few weeks out of transplant -- she won't hit her stride for a few months yet -- it's going to get so much better for her every single day for the next several months...

Particularly for the next several weeks... For the last year or so, she's probably been gradually getting sicker -- always falling a step back... For the next several weeks, and maybe for the first time in her life, she will be getting better... Sure, sometimes it will feel like a few steps forward, followed by one back -- but the overall direction will be forward... And if her journey is like mine, she will find it quite amazing... I hope her journey is even more amazing than mine...

And I can't imagine what it's like to be a Mom of someone like DJ (or like me or so many people here...) I often think it's easier being a patient... We're just dying... Our caregivers and the people who love us are watching us die and feeling like there is nothing they can do -- but you don't always understand how important just being there truly is... And then, when we pull off something like this... It's been 10 years for me -- my Mom will still choke up when we talk about my new lungs, and about the girl I received them from... I hope that 10 years from now, like my Mom and I were last week, you can be sitting across a table in a cafe' somewhere with DJ -- and you can still well up when both of you talk about her "new" lungs...

In your first note -- you wanted to know how it effected my life, and the quality of my life... I contribute to a blog about organ donation called Revive Hope -- here is one of my recent posts:

http://revivehope.typepad.com/revive_hope/2010/04/thank-you-kari.html

And here is a little video produced by Donate Life Illinois about me and my donor:

http://www.youtube.com/watch?v=SvxpyfZ9Rsk

My quality of life is beyond what I'd ever imagined possible... I was transplanted days before my 40th birthday -- I'd lived surprisingly long for a CF patient already... Breathing like I do now blows my freakin' mind -- I just passed my 10th transplant anniversary, and my 50th birthday -- and I still think about this throughout the day, every single day... I'm almost embarrased to say that I've kinda forgotten what it was like to struggle for breath -- but at the same time, I haven't stopped realizing how amazing this feels... I hope your DJ experiences life similar to the way I have...

You take care of her!!! And take care of yourself too... You've got lots to learn -- and lots of life to live...

Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

www.youtube.com/SteveFerkau
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4446
Registered: 07-2007
Posted on Wednesday, May 12, 2010 - 10:13 pm:   Edit Post Delete Post Print Post

Dj's Mom:

Welcome to Transplant Buddies! Congratulations on your daughters successful lung transplant! I am sure it is so hard to watch your baby struggle, but this is her chance at a normal life. How awesome!

What great news that she will be released from the hospital on Friday. I felt like I made huge strides in my recovery once I left the hospital. I got better sleep and ate better food. She will amaze you at each milestone. Like Steve said - wait until you see her run!!

I am 5 months post double lung transplant. I admit that it was the hardest most incredible thing I have ever been through. It was worth every minute of struggle and pain. I have enjoyed the last 5 months of my life more than the all the other 43 years. Your daughter has so much to look forward to you and so do you. You will be overjoyed as you watch her lead a normal life.

I am so glad that you found us. This is a great place for support and friendship. I hope you continue to visit and keep us updated on Dj's progress. It won't take her long and she will be running around with her friends and you won't be able to keep up with her. That will be a good day!! :-)

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Meagan
Forum Leader
Username: Newheart14

Post Number: 1180
Registered: 01-2009
Posted on Thursday, May 13, 2010 - 08:00 am:   Edit Post Delete Post Print Post

Hi DJ's Mom,

Sorry I'm late in welcoming you. I am happy to hear your daughter is doing well and may be home for the weekend.

Take care,
Meagan
Forum Leader
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
Diagnosed with idiopathic dilated cardiomyopathy 1991 and eventual CHF

Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
nana
Member
Username: Nana

Post Number: 26
Registered: 12-2008
Posted on Thursday, May 13, 2010 - 10:30 am:   Edit Post Delete Post Print Post

Hi Dj mom,
I'm not on here much but I do read the articles and I had to take a minute to go to the library to type to you. My sister, I had a kidney transplant eleven years ago and yes, the struggle the pain and the anger, yes I have been there and my two boys which are 27 and 19 now,saw their mom deterorating but we made it and so are you . Have faith and keep on praying , just a little bit of faith is all you need, I'm praying much for your daughter and your strength Nana`
To my donor, may God bless your soul
Dj's Mom
Member
Username: Djsmom

Post Number: 6
Registered: 05-2010
Posted on Thursday, May 13, 2010 - 04:06 pm:   Edit Post Delete Post Print Post

Thank you so much for the encouragement and the stories.
Well, this morning the doctors decided that the lower tube is not ready to come out today but maybe tomorrow and they are still trying to send her home tomorrow as well.(smiling) at this point we are just going with the flow and if happens it happens, if not then we have another day to wait, no worries!

Looking back on my original posting I realized that I never shared Dj's sickness and the reason for transplant, Ido apoligize and would like to take a minute to tell you her story.

19 years ago a little girl was born, July 4th to be exact, she was born a premie weighing in at 1lb and 12oz six weeks early. Beacause she was so small and her lungs were not quite developed she was placed on a ventilator and oxygen to make her breathe. The first three months of her new born life was spent in NICU on these machines.
As a result her lungs developed whats called Broncular Pulmanary Displasia (BPD) it's caused by the pressure and volume of the ventilator and oxygen and causes the air sacs in the lungs to become weak and not fully expand when you take a breath in and it also causes scaring of the lung tissue. Well, 99.9% of the premies who develop this disease will out grow it due to the maturing of the lungs, she never did.
Dj was on oxygen 24/7 for the first 4 years of her life and was eventually weened off.
We never gave it a second thought until her middle to late teens when we noticed that her breathing was just quite right, she would run out of breath just walking around in the mall or grocery store or when she tried to play soccer in Middle School she would turn pale and say, "I can't breath." Eventually her Primary Care Doctor said, "something just is not right here, she needs to see a Pulmunary Specialist." Because he thought that for an asthmatic (which is what they diagnosed and treated her for during her teen years) she was still looking too sick.
So on August 24, 2009, we went to visit the Pulmunoligist and after he looked at her, listened, took xrays, CATscans he came back into the room and said," Your daughter is sick, her lungs are sick, she is going to need a transplant." Needless to say our world came to screeching halt and we held one another and cried and cried.
For anyone who may not be familiar with BPD, it can be compared to CF as far as the symptoms. I remember during one of our pre-transplant visits her doctor asked us,'Do you want to get an idea of how hard it is for your daughter to take a breath?" And he had us stand up, take a deep breath and hold it in, then as your holding that breath in, take another breath on top of that..let me just say that it was hard and could not imaginge Dj having to live with that everyday.
Now, she is here, new lungs intact, rosey cheeks and looking beautiful as she ever has! I know eventually she will feel the full impact of these new lungs and will out run all of us, while we are hunched over trying to catch our breath to keep up!

I have read so many of the wonderful stories of TX patients and I salute every single one of you out there!! As a care taker it has humbled me and made me take a step back to re-evaluate my own life. Keep living the dream and with every heartbeat and every breath, be thankful and never take anything for granted, That is what this whole experience has taught me.
Dj's Mom
Member
Username: Djsmom

Post Number: 8
Registered: 05-2010
Posted on Sunday, May 16, 2010 - 11:53 am:   Edit Post Delete Post Print Post

Dj is finally out of the hospital and is home away from home. It was a big day and lots to go home with. She is still very weak and tired but we are trying to keep her motivated to move around. Although, for dinner last might, she ate like a starving monkey..lol hospital food I guess is not up to par with home cooked meals. She looks great and pray that we can keep her motivated.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13133
Registered: 05-2003
Posted on Sunday, May 16, 2010 - 12:27 pm:   Edit Post Delete Post Print Post

Congratulations! Welcome Home DJ :-)

Stay in touch with us.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
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Questions or Suggestions- Email Hostess Rise'
Dj's Mom
Member
Username: Djsmom

Post Number: 9
Registered: 05-2010
Posted on Tuesday, May 18, 2010 - 11:56 am:   Edit Post Delete Post Print Post

- Day 3 post discharge from the hospital and Dj is doing well. She is still very tired and weak but I believe she just needs to get her sea legs back. I get to go back up there to be with her On Thursday and we are going to take a trip to the beauty salon to get her hair washed, she is looking forward to that since she hasn't been able to take a real bath since the transplant.
She had her first clinic visit yesterday and did her 6 min walk and maintained 99-100% sats! Her Doctor said she is ahead of the curve with recovery and looking and sounding awesome.
rainbowmom (yeages)
Forum Leader
Username: Rainbowmom

Post Number: 196
Registered: 11-2009
Posted on Tuesday, May 18, 2010 - 03:04 pm:   Edit Post Delete Post Print Post

Hi DJ's Mom :-) I have been looking for you on Transplantbuddies!!! (This is Yeages - aka rainbowmom). I was SO happy to see DJ last week, and am thrilled to hear that she is back home. No place like home ... :-) I am sure she will go from strength to strength. She has you as her rock - she is incredibly lucky. You, my friend, are awesome, as are all our caregivers. We could NOT do this without you. No way. Am looking forward to seeing you both at the clinic one day soon. Make sure DJ keeps moving - it's so hard to do because sometimes you just feel like sitting in one place and not moving ... remind what I said about kicking herself up and out - she'll feel better once she's found those sea legs. Talk to you soon and lots of love to you both, Yeages xx
rainbowmom
double lung tx january 15, 2010
inova fairfax
Dj's Mom
Member
Username: Djsmom

Post Number: 10
Registered: 05-2010
Posted on Monday, May 24, 2010 - 07:00 pm:   Edit Post Delete Post Print Post

Hi Yeages!! It truly was wonderful to run into you at the hospital that day. I hope you realize that your presence and words of encouragement went along way for Dj and myself. I still talk about you to my family and friends about how wonderful you looked!!

She is now one month out of TX and we were told today that she gets to go to our real home next Tuesday after clinic, woohoo!! She still is vibrant, looking and feeling great everyday. Though like you said somedays she just wants to sit around, but I have a plan for those days, what do young girls like to do more than anything? Shop! So we go to Target or somewhere and window shop and that brings her joy and she's excerising at the same time, (so does my wallet) lol.
I'm glad to hear from you and I pray that you are doing fantastic and we hope to see you on a clinic day! Take care and love to you and your family.
Dottie Lessard
Member
Username: Dottie_lessard

Post Number: 43
Registered: 03-2009
Posted on Monday, May 24, 2010 - 11:30 pm:   Edit Post Delete Post Print Post

Hi DJ's Mom, This is Dottie...I just read all the wonderful posts from you and the reply's of the wonderful people here on Tx Buddies. We are all so lucky to have this place and i love feeling inspired by others.

I am so excited for you, DJ, and your whole family and freinds-it is truly a NEW life. I received a double lung transplant 16 amazing years ago from CF and it has truly been a miracle. Of course there are bumps here and there but the "mountains" we can stand upon with new lungs make the "bumps" just something to hop over one minute, one day at a time.

Enjoy this healing process and get excited for what is yet to come...new hope, joy, excitement and experiences. A full life with deep breaths and an appreciation we are blessed to have from where we have been.

May each day ahead of you be filled with great possibilities and abundant health,

Dottie
Dottie,
Author of "The Seven Letters That Saved My Life"
Coach, Athlete and Mom to Liam
Survivor of
Cystic Fibrosis, Double lung transplant 94, Kidney transplant, 03
{http://wholebodywellbeing.com,WholeBodyWellbeing.com}
Dj's Mom
Member
Username: Djsmom

Post Number: 11
Registered: 05-2010
Posted on Sunday, May 30, 2010 - 04:33 pm:   Edit Post Delete Post Print Post

The day has finally come, dj gets to come home with us on June 1st. It has been a long journey to get to this point, but let me say that she is more beautiful than ever. For the first time this weekend she said to me that she can feel the real difference with how she breathes. I took her out shopping for new clothes because she has lost so much weight during all this, we spent 6 hours shopping and walking, I had to sit down, I could'nt keep up with her, lol.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13303
Registered: 05-2003
Posted on Sunday, May 30, 2010 - 05:06 pm:   Edit Post Delete Post Print Post

Congratulations Dj's Mom and to your daughter. Tell DJ I said hello and that she has a bunch of people here who would like to chat with her.

Wait until she walks in the front door. Take a picture of her face as this will be a priceless moment.
Enjoy your shopping spree.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
Transplant Friends.com

Questions or Suggestions- Email Hostess Rise'
Kate/Jeremy's Mom
Member
Username: Dixieluvinchik

Post Number: 192
Registered: 06-2009
Posted on Tuesday, June 01, 2010 - 08:51 pm:   Edit Post Delete Post Print Post

Welcome DJ's Mom,

I am honored to welcome you on the day DJ gets to come home. Looking forward to hearing all the details!LOL!
Kate/Jeremy's Mom

Jeremy donated Easter morning,4/12/2009

-"How can we not be organ/tissue donors?" -Jeremy D. 11/28/80 - 04/11/09
- Baton Rouge,LA. USA-
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4523
Registered: 07-2007
Posted on Wednesday, June 02, 2010 - 05:46 pm:   Edit Post Delete Post Print Post

Dj's Mom:

YEAH!! You are home!! That is the greatest feeling! I am so thrilled to hear that DJ is doing so well. Just wait. In a few months she will be running circles around all of you. I am just 6 months post transplant and I am doing everything and anything I want to do. This morning I walked for 45 minutes with a friend of mine. She is very tall and I am very short so her strides were a lot longer than mine. I kept up just fine and then I did a kickbox workout after I got home. It is wonderful to be so active. I thank God and my donor everyday!!

DJ has so much to look forward too!! Tell her to keep up the great work and continue to get stronger every day!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.

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