I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
July 27, 2017, 05:44:12 PM

Login with username, password and session length
Search:     Advanced search
513776 Posts in 32053 Topics by 11567 Members
Latest Member: Silman
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Introduction
| |-+  Introduce Yourself (Moderator: Rerun)
| | |-+  My Introduction...Hello All!
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: My Introduction...Hello All!  (Read 1751 times)
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« on: April 03, 2016, 10:53:33 AM »

Hello to everyone...and thanks for finally approving my request for membership.

I will tell you a tiny bit about me, and quite a bit about my daughter, Holly.

First of all I am my daughters caregiver-along with my wife.

My daughter was diagnosed with a myocardio fibroma tumor at the age of 2 1/2 months of age in 1990-when she presented with flu like symptoms (slight fever, nausea, etc). Once we got to the pediatrician, they hooked her up to a pulse oxymeter and her saturation levels stunk and her heart rate was near 300 beats per minute. She was throwing SVT's (Supraventricular tachycardia) and the pediatrician didn't know why-so off to the Children's hospital we went.

After we got there, they told us that they'd be able to slow the heart rate with a "brand new" miracle drug called adenosine. Unfortunately, that didn't work and then they proceeded to cardiovert her 17 times to try and stop the heart...so they could start it again. Unfortunately that didn't work either-so after 19 grueling hours, they opted to use digoxin as a last hope. That worked to bring the heart rate down. It eventually spiked a few more times until they dialed in a dose that kept her SVT's under control. They ended up giving her digoxin for the atrial fibrillations and dilantin for the  ventricular fibrillation (lucky there weren't may of those while in the hospital).

After she stabilized enough, they performed open chest surgery and discovered the myocardial fibroma tumor. They originally were going to perform the surgery through her back side, but at the last minute, they decided to do it through the front. That was a good call as she flat lined on the table 5 or six times, until the surgeon actually froze the heart muscle temporarily so he could explore what what going on with the newly discovered tumor. What they found out was that the tumor already covered more than 80 percent of her heart-so surgery to repair wasn't an option. So, they sewed her up and sent her to recovery, where we were told she wouldn't survive. We were able to get our priest that had baptized her to come and give her last rites and we were able to say our goodbyes and went to the waiting room to wait for the word that she had passed.

What happened next was unbelievable-her status did a 180 in the hour after we saw her and the doctors allowed her back up to the ICU-where she maintained critical bodily function levels-not getting much better-but also not much worse either.  We went and met with the doctors at Loma Linda Hospital. The doctors there were doing experimental heart transplant surgery-but we heard that they were getting close to approving the surgery as a normal procedure that would be covered by insurance. We decided that this was the only route that we could take and give Holly any chance at survival. She was put on the national transplant list at the beginning of August of 1990.

Eventually, after 2 weeks we we allowed to go home from the Children's Hospital in mid August 1990 after learning pediatric CPR and also with a pediatric apnea/heart monitor on at all times. Mid October 1990, Holly had multiple myocardial infarction's (heart attacks) at home. I was at work and my wife called the paramedics, then called me. I arrived home about the time they scooped her up to take her back to the Children's Hospital. They did their best with the CPR, but when Holly got to the hospital, she was flat lined-again.  They worked for 35 minutes to establish a normal heart rhythm then came out and told us that it might be wise to get her priest (and family) to the hospital-as it didn't look good. Again, the father who had baptized her and previously given her last rites-gave her last rites again. Again, we went to the waiting room to wait for word that she had passed away.

From what we were told, the docs refused to give up and finally after 45 minutes-they established a normal heart rhythm. This came at a slight cost-as she experienced hypoxic seizuring-due to lack of oxygen to the brain. She seized so much that they eventually put her into a Phenobarbital coma to stop the swelling on her brain. Thus, we entered into the next stage of her medical issues.

Once the brain swelling went down, they took her off of the Phenobarbital-but she didn't wake up. They chief of staff of the Neurology department did EEG scans and extensive testing of the brain and she only had basal brain functions-no upper level brain functions were present. We were taken off of the national transplant list. We were moved from the ICU to a normal floor and had the discussion with Holly's pediatrician about what was going to happen. Holly at this time was stable enough to go home in the coma, but not medically viable for a transplant. So, we would go home and wait for her to die-then we'd call the pediatrician-and he'd take care of all the particulars (coroner, etc.)

Once again, Holly surprised all of us. The day she was supposed to be discharged to go home-we were watching TV in the hospital room that we were sharing with a hydro-cephalic child and heard a screech that started all of us. It was Holly and she had her eyes open and was looking around. I ran and got the charge nurse-who promptly called the Chief of Staff of the neurology department-who did a bunch of testing and he confirmed that Holly was "Back" with normal brain function. She was immediately put back on the national transplant list-and was moved back upstairs to the ICU for monitoring of the heart rhythms.

We had slept at the hospital continuously for most of the time she was in the hospital. The charge nurse convinced us to spend a day at home and that Holly had the best care-so for the first time, my wife and I went home to sleep for the night. At 5 am the next morning, we got a page on our pager that they had located a heart for Holly! She was life flighted to Loma Linda Hospital for the surgery. There were issues right before transplant there-but I won't get into those here...Holly had a successful heart transplant on November 15th 1990- (just a few days after the procedure went from an experimental procedure to a standard procedure covered by insurance).

Fast forward to 2012-and the toll of taking the immunosupressant medications was starting to become apparent in Holly kidney function. Her kidney function was starting to decrease pretty steadily-and her nephrologist held out as long as he could before putting her on the transplant list for a kidney in 2013. He was able to control kidney function with a series of 13 pills and keep her off of dialysis until January of 2015. At that point, it was decided to put her on peritoneal dialysis-as she had the least chance of infection going this route. She had the surgery at the beginning of February 2015 for the PD cath-and they gave her 1 month to have that heal (due to the immonsuppreasants and reduced immune system response). The days preceding the start of her PD dialysis-she was feeling miserable and could barely walk. We were told by the on call doc that as soon as she started the PD-she'd feel better.

What ended up happening was that we went for the first dialysis session-I literally had to carry Holly into the center. Once the nurse say her-we were sent to Mayo Hospital emergency room where there put a central venous catheter in and put her into ICU-as she was extremely septic. They did dialysis 3 times before she stabilized and was moved into a non ICU room and we were able to go home. We started hemodialysis at DSI in Phoenix in March of 2015 and got so frustrated with them that we went to Fresenius in May of 2015.

Our kidney doc thought we'd be great candidates for home hemo-so we started training in mid-January of 2015. By the beginning of February on 2016 we were released to do home hemo with the NXStage system. We've had our share of issues with the customer service at NXStage-but I will save that for another post!

We've been at home doing it since they end of training. Holly's clearance is at 3.1 so she's getting really good dialysis!

Here are some pics:













So, how's that for an introduction? :) By the way, Holly has been on the transplant list for over three years-and we've heard that she's at the top of the list-and it should be any time now.

Bruce
« Last Edit: April 03, 2016, 04:58:53 PM by Xplantdad » Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
cassandra
Global Moderator/Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 3969


When all else fails run in circles, shout loudly

« Reply #1 on: April 03, 2016, 11:10:47 AM »

Welcome to the site Xplantdad

   :welcomesign;


And what a story it is.

Lots of luck, strength and love to you and your family, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #2 on: April 03, 2016, 11:39:57 AM »

Thanks for the welcome, Cas. I hate that my daughter has to go through this...and I cannot even begin to imagine what she goes through. Both my wife and I asked if we could donate-and were both turned down. Me, due to chemo in my recent past. My wife, I don't remember why.

We thought we had a paired donation set up but that fell though as well. I know that if it was possible-I would give my life so my daughter didn't have to go through this anymore. She HATES the dialysis now. She HATED seeing her older friends at dialysis passing away :(

All I DO know is that she is my inspiration. She is what keeps me going every day.

Hopefully we can learn some of the tips and tricks from the long time folks on the NXStage system.  :flower;
« Last Edit: April 03, 2016, 01:21:13 PM by Xplantdad » Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1356


« Reply #3 on: April 03, 2016, 12:23:52 PM »

Welcome to the site, I hope your amazing daughter gets the gift of a kidney soon.  Stories like yours are very heart warming, I will hold good thoughts about your family I look forward to hearing how well she is doing post transplant. 
Logged
hatedialysis2
Full Member
***
Offline Offline

Posts: 170

« Reply #4 on: April 03, 2016, 02:54:13 PM »

Welcome  and thank you for sharing Holy's amazing recoveries against all odds!   Your little girl has the fighting spirit of a great warrior!!    My heart felt wishes for her continued success and ability to surprise her doctors.

Logged
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #5 on: April 03, 2016, 04:50:47 PM »

Thanks very much for the warm welcome! :thx;
Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2405


« Reply #6 on: April 03, 2016, 05:47:52 PM »


Welcome to IHD.   Thank you for sharing Holly's journey so far.  You can be sure that there IS someone above watching over her.  She is destined to touch many hearts during her life.

Stay strong in your Faith, is does matter.

Take Care,

Charlie B53
Moderator
Logged
PrimeTimer
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1714


« Reply #7 on: April 03, 2016, 10:33:52 PM »

Welcome, Xplantdad! Thank you for sharing your experiences and strength! Seems our corner of the world here just got a little brighter... ;) My husband uses NxStage and I'm his care partner. We've learned a lot about dialysis and NxStage here on this site. Many experienced people here willing to share and lend their support. One of them is Simon Dog, he's been a big help with the NxStage stuff. You will meet a lot of knowledgeable people here plus, we also like to have a little fun conversation, too. Enjoy!
Logged

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Vt Big Rig
Global Moderator/Premium Member
Full Member
*
Offline Offline

Gender: Male
Posts: 471

« Reply #8 on: April 04, 2016, 07:50:15 AM »

Welcome  to the site

 :welcomesign;
Logged

VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kickingandscreaming
Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 1648


« Reply #9 on: April 04, 2016, 08:46:37 AM »

Welcome.  It appears that Holly has a guardian angel (or 2) not to mention devoted parents.  I hope you find the support you need here at IHD.
Logged

Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #10 on: April 04, 2016, 08:22:33 PM »

Welcome.  It appears that Holly has a guardian angel (or 2) not to mention devoted parents.  I hope you find the support you need here at IHD.

We think Holly has a few guardian angels for sure! :)

She is our inspiration-the least we can do is fully support and help her in everything that she does. We are so grateful to the family who donated her heart. We also realize that Holly gave us and all of our friends and family the best gift....the gift of realizing how precious and short our time together on Earth really is...so we celebrate life daily!

We are active in donor awareness programs-here's a local TV station with Holly a few years ago at the NHRA drag races in AZ with Holly favorite driver...Tony Schumacher.

Here is a link to the video (She was a bit nervous). Sorry for the bad sound quality...I videoed the screen on my computer.


Click on the blue picture to play the video

Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #11 on: April 04, 2016, 08:24:58 PM »

I hope that you don't mind me sharing more....

Holly's first birthday party...which we never thought would come :)




Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #12 on: April 04, 2016, 08:27:12 PM »

She was also part of the Ca. kids plate program...and had a personal visit from the assembly woman who authored the bill, Jackie Speier...Here's the newspaper part:

Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #13 on: April 04, 2016, 08:28:21 PM »

Her third birthday celebration...and one of my favorite pics with Holly :)

Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2405


« Reply #14 on: April 05, 2016, 06:19:29 AM »


Please feel free to post all the clippings ou have.

Holly is sure to give hope to others by her continued successes.

I Pray that Holly sets many many more 'Firsts'.


Take Care,

Charlie B53
Logged
SooMK
Premium Member
Full Member
*
Offline Offline

Gender: Female
Posts: 386


« Reply #15 on: April 05, 2016, 06:36:29 AM »

Welcome Xplantdad! Certainly adds some perspective. Hope that new kidney comes soon.
Logged

SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 5934


« Reply #16 on: April 06, 2016, 03:30:16 PM »

Gosh Dad, what an amazing story and an amazing little girl you have. One of our posters says we need a "celebrity" to appear for the kidney patients. Perhaps you would be interested. But whether or not you are interested, welcome to IHD   :welcomesign; 
Logged

One day at a time, thats all I can do.
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #17 on: May 22, 2016, 05:51:42 PM »

Time to share some more pics if you don't mind?

For those who are near my age and into music...and great guitarists...We made friends with Gary Hoey when Holly was five years old. She was enamored with his music, especially his Christmas music. So, we got on his website, found out his managers name....then found out he was playing near our home. We explained a little bit about Holly and the next thing we knew...we were backstage at his show. We were treated like royalty.

Backstage at the Coach House in San Juan Capistrano, Ca.




In the late 1990's in Santa Ana, Ca.





Then fast forward to 2011 here in AZ at another event...




And the guitar with the heartfelt message from Gary to Holly  :thumbup;



« Last Edit: May 22, 2016, 05:53:19 PM by Xplantdad » Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #18 on: May 22, 2016, 06:05:44 PM »

Holly has been pretty lucky to meet some cool folks...We adopted the school of thought that you never know when "you will be called home to heaven" so make most of your time while you are here...

Holly and Don "The Snake" Prudhomme! (Famous Drag racer) when Holly and I were at Barrett-Jackson




Carroll Shelby knew of Holly through a friend of my oldest sister...and sent this to us when Holly was 2 years old...so cool!




And I took this picture with Holly and Carroll Shelby (rest in peace sir) at Barrett-Jackson, too. Holly and Carroll shared transplant stories...as they had their heart transplants a few months apart and Carroll also had a kidney transplant



Carroll's heart foundation liked the image so much that they used it in one of their ads for the Children's heart fund :)






And they used one other photo from Barrett Jackson for their ad...with Jenni-who works for the foundation:




and Carroll autographed it for Holly, too!




More car related folks...Bill"Grumpy" Jenkins smiling with Holly...rest in peace Bill.





And one more music related one for now....Sean Kelly from "Sixpence None the Richer"





« Last Edit: May 22, 2016, 06:17:28 PM by Xplantdad » Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 177


Health is not valued till sickness comes. T.Fuller

« Reply #19 on: May 22, 2016, 06:29:11 PM »

Last one for now...and a more current photo (from a few years ago)....Holly with the band "One Republic" backstage here in Phoenix. I do business with one of the band members father...and I just have to say, we are blessed!

These guys are really talented and nice guys, too!

Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.5 | SMF © 2013, Simple Machines
Enotify by CreateAForum.com
Valid XHTML 1.0! Valid CSS!