My Introduction...Hello All!

Xplantdad

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Health is not valued till sickness comes. T.Fuller

My Introduction...Hello All!

« 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 31 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!

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

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