Papas New Heart

wow....1 year already????

2010-06-09T04:45:00.012-04:00

The post below is 1 yr old today, amazing how far we have come in one year....dad is walking 5 miles a day and gets stronger with every step...here is the link to the Boston Heart Walk that he IS walking this year...please join or donate if you can, thanks....

http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=331275&supid=294156840

WEDNESDAY, JUNE 10, 2009

Update
Dad had VAD surgery on 6/9/09 @11 am, things went really well. Dr. Magillivry was very pleased with how things went and was encouraged by how he was responding. He had the breathing tube removed this morning around 11:30 and was breathing on his own without and trouble or difficulty. Mom says he was groggy but knew they were there and was asking a lot of questions about his device and how it all works. He likes his nurses, which is more than I can say, I don't like Travis he wants no part of speaking with family however they encourage you to call 24/7, he is just rude and speaks to you as if you have no clue as to what VAD surgery is about, grrrr.
We did have more than one angel looking over our shoulder yesterday, dad had his in the OR and B and I had 2, Dr Parks who came to the waiting room to advise me on what was happening and Janice for VAD was our other angel, she was fantastic, she kept us up to date on everything all day, she calmed our fears and held our hands and gave hugs when we needed them, she was a truly welcomed part of yesterdays experiences. Kathy from heart Failure met us also in dads room after surgery to make sure he was ok and to check on Me and B, she too is a gift from god, just like Dr Parks and Janice....MGH is truly remarkable and the staff is top rate.

James' heartbeat continues to beat on....

2010-03-12T04:04:00.003-05:00

2010-02-25T18:42:00.002-05:00

Feb. 25 Results from biopsy all came back negative today, that's 14 negatives. Things are looking good. Thank you all PAPA

Slide show from Monique

2010-02-23T04:48:00.001-05:00

"Picnik Show"

Create a free slideshow with Picnik!

2010-02-18T20:52:00.002-05:00

Feb. 18 Just writing to say everything is still going well. If you go to my web page, you can read about my donor and who he was. His name was James Short,he was 24.years old. A world class roller bladder, song writer,and musician. To he and his family, my family and I will be forever grateful. Papa

2010-02-09T04:58:00.001-05:00

James Short Memorial Session from Hawke Trackler on Vimeo.

obituary

2010-02-09T02:34:00.000-05:00

James David Short, whose life was described by his friends as "a unique and beautiful song," passed away at the age of 24, while surrounded by his family on Sunday, Aug. 30, 2009, in Akron General Medical Center following injuries sustained from a motorcycle accident on Wednesday, Aug. 26. Born March 18, 1985, in Aultman Hospital at Canton, James was the beloved son of Rodney L. and Debra "Reb" Lynn (Robinson) Short of New Philadelphia. James was a young man of great charisma and fun-loving persona whom everyone enjoyed knowing. He was especially energized by working with children, inspiring them to succeed, having earned notoriety in professional rollerblade competitions around the country. James graduated from New Philadelphia High School and has spent much of the last decade earning a Ph.D. from the School of Life. Having also lived in California, Michigan and Pennsylvania, James was looking forward to beginning his education at Kent State University's TusCampus, having recently received a Pell grant and eagerly awaiting his letter of acceptance. During his high school years, he began his musical and rollerblading careers. He was a talented singer, songwriter, bass player and guitar player, sharing his musical abilities in a number of bands including One Thing, Autumn Remains, The Color 7, Brickyard Slaves, and The Paul Allens. He was also an accomplished solo acoustic artist. James was a free spirit who enjoyed all that life had to offer. He was proud of the fact he had slept in the Rocky Mountains, on the beaches of California, and in the desert. He traveled Route 66 to California one time, just because he thought it would be exciting to do. His professional rollerblading career gave him the opportunity to see most of the United States. He was internationally known for his standing record of the longest toe roll in the world, and other tricks which incorporated the toe roll. He was supported by a number of sponsors during his rollerblading career. Currently, Remz (Skates), INRI Clothing, Jolly Jolly Heartbreakers, and Sic Apparel were his tour sponsors. He also has been backed by 9MM, Razors, Ground Control and Mix Theorem. When not rollerblading or creating music, James was the life of the party, working at Jesana's Pizza. There, he was an assistant manager and loved creating what he called "artistic, delicious masterpieces." He has also worked for a variety of other companies including Radio Shack, Larry Karol CD's and More, Wal-Mart, Q-dobas and Olga's Kitchen in Detroit, Mich. In addition to his parents, who will deeply miss James, he is survived by his maternal grandfather, Herb Robinson Jr. and his companion, Ingrid Parker of New Philadelphia; his aunts, Sandy Hartshorn and her family of Clyde, O., and Barbara (husband, Dan) Leishman of New Philadelphia; his uncle, Dave (wife, Patti) Robinson of Naperville, Ill.; numerous cousins; and a world of friends. James was preceded in death by his maternal grandmother, Kathryn Robinson, and his paternal grandparents, Chalmer and Mary Short. Visitation will be held in the Linn-Hert-Geib Funeral Home & Crematory at New Philadelphia, 116 2nd St. NE on Thursday, Sept. 3, 2009, from 4 to 8 p.m. A service celebrating James' life will be held in the funeral home's chapel on Friday beginning at 11 a.m. with Pastor Matt Roe officiating. Special arrangements have been made to lead the funeral procession past James' second home, the New Philadelphia Skate Park, en route to Roxford Church Cemetery, where inurnment will be conducted. Those wishing to ride a motorcycle in the procession are encouraged to do so and will be directed by Geib staff upon arrival at the funeral home. Those unable to attend are invited to share memories and condolences with the family by visiting the funeral home's Web site. In an interview given to BE-MAG/Rollerblading Magazine this past July, James responded to a reporter who asked Short about whether or not he would ever settle into one place. He replied, "I am not a stationary person. I live for right now. It's hard for a lot of people to fathom. I move a lot because I'm in need of new experiences. It truly is what makes the creative mind work." � James' philosophy on life was, "It's all good." He also believed, "I'm child and man, then child again. The boy never gets older." Please direct memorial contributions in James' memory to any Dover-Phila Federal Credit Union, where an account has been established. His parents are going to distribute the money donated to allow other children to achieve their dreams. Because James gave life to others through organ donation, and because he leaves behind so many loving family, friends and fans, he'll be forever on the move in the heavens above, riffing with the best, rolling with the rest, and waiting to welcome us Home. Linn-Hert-Geib

check this out...chills

2010-02-08T22:35:00.003-05:00

James Short - Sic Apparel from Stefan Brandow on Vimeo.

James Short - Online Profile from Stefan Brandow on Vimeo.

2010-02-08T22:22:00.000-05:00

By Joe Mizer The Times-Reporter Posted Aug 31, 2009 @ 12:04 AM A report will be turned over to the Tuscarawas County prosecutor’s office for further review following the death Sunday of James D. Short, 24, of 116 Ray Ave. NW, New Philadelphia, stemming from a motorcycle/car accident Wednesday. New Philadelphia police Officer David Cimperman said the collision of Short’s motorcycle and a car driven by Doris A. Caranda, 48, of 412 Kelly St. NW, New Philadelphia, appears to have occurred in Short’s lane of travel. The accident was reported Wednesday at about 9 p.m., and Short was listed Thursday in serious condition in the medical intensive care unit of Akron General Medical Center, where he was flown by helicopter Wednesday night. Cimperman said Sunday that evidence shows that Short was westbound on Park Ave. NW and was turning north onto Union Ave. NW. Caranda was driving a car south on Union Ave. and was turning left (east) onto Park Ave. Cimperman said Short’s motorcycle was “technically in the intersection” and “definitely on the right of way for the northbound lane” when the collision occurred. Short, who was not wearing a helmet, was ejected from the motorcycle and was thrown about 20 to 30 feet from the point of impact. Caranda, who was not injured, was cited for driving under the influence and possession of marijuana. Cimperman noted Sunday, however, that he has not cited yet for the underlying charge and said that won’t be done until he has a chance to discuss the report with the prosecutor. Meanwhile, about 200 of Short’s friends were assembling a memorial tribute to his life at the New Philadelphia Skate Park off Mill Ave. SW late Sunday night. Trina Garcia of Tuscarawas said Short was a pro rollerblader and noted that his friends were skating in his memory. She also said the tribute would include a helium balloon launch. A candlelight vigil also was to be included in the tribute, according to Anjanette Beahm of New Philadelphia. “We’re all devastated,” said Spencer Gray, also of New Philadelphia, adding that Short was one of his best friends. Gray, who also had skated with Short for about a year, described Sunday night’s scene at the Skate Park as “electrifying.” In addition to being a pro rollerblader, Short had been employed as a pizza maker at Jesana’s Pizza at New Philadelphia for about a year and a half.

2010-02-08T18:30:00.002-05:00

Feb. 8TH Received a letter from my donors family today, and they are willing to corispond.The papers have been filled out, and mailed to the donor center.They say it will take about six weeks for returns from both parties to be exchanged. Things are looking great, and felling great.

2010-02-01T19:48:00.002-05:00

Feb. 1st. I had my thirteenth biopsy Thursday, and everything came back negative. We are now starting the sixth month, and things are looking good. Thanks to all ove you. PS. To ZackRabbit: I'm glad you enjoyed the peanut butter squares

2010-01-23T19:43:00.002-05:00

Jan. 23 To Zachrabbit: I watched your cooking show and was very impressed. I thank you for mentioning my name in your credits. And on the anniversary congratulations. Thank you Papa

It's me again...

2010-01-22T03:05:00.001-05:00

Hi dad...Riley wanted me to tell you that your recipe for PB squares are this weeks cooking show recipe, so you have to watch Zack Rabbit on Saturday @ 3:30

http://zackrabbit.tumblr.com/

Don't miss it!!!!!

Mosi is posting....

2010-01-19T02:27:00.002-05:00

Hi, Monique here........

Zack here is a post you can leave your question or comment for dad....

Hi daddy!!!!!!

2010-01-10T18:43:00.002-05:00

Jan 10Th Hello its been awhile senses we checked in, everything is still going very well. Hope the new year is going well for you, and all your new years resolutions are still in tack, if not you are in the majority. Hello ZachRabbit.

2009-12-31T15:54:00.002-05:00

Dec. 31 Sitting here looking back on 2009, it was a year I will never forget. It all started on Feb. 2nd, when I had a complete hip replacement. Next was a massive heart attack April 3, followed by four more that night. Then it was off to Mass General hospital in Boston, till Oct.1st. They performed two major heart procedures. In the first one they in stalled an left ventricular assist device. Which meant I was running of a machine, or batteries. They consider this a more serious operation than a transplant.Next came the transplant which I'm clad to say went extremly well. I would like to thank the donor, and their family for the great sacrifice they made, and the great sorrow they must fell, we will be for ever in your dept. If I did not be leave in miricals before this, I sure be leave in them now. HAVE A HAPPY AND SAFE NEW YEAR Papa

2009-12-30T07:40:00.002-05:00

Dec. 30th The results of Mondays biopsy came back yesterday afternoon negative, that's eleven in a row. We must be doing something right. Thank you all very much, till next time have a wonderful new year.

2009-12-29T15:09:00.002-05:00

Dec.29. still waiting for the lab results from yesterdays biopsy test. The waiting is the hardest part of the whole procedure.

2009-12-24T18:10:00.002-05:00

To Zach Rabbit: Recipe for peanut butter squares. 2 sticks real butter, no sub 1 cup peanut butter 1 box confectioners sugar one third box of gram crackers chopped fine 2 cups semi-sweet chocolate bits Melt butter and peanut butter in microwave on high for 2 and a half minutes mix gram crackers and confectioners sugar together pore the butter peanut butter into gram cracker sugar beat together in electric mixer for about 1minute thirty seconds pore into buttered 9-13 in. pan melt the chocolate chips and spread over the top of the squares

2009-12-21T18:21:00.002-05:00

just reporting in so that my daughter, will know that i am all right it took me four hours to make six pans of peanut butter squares. so come pick some up. i saw the picturer of the boys

2009-12-20T10:34:00.001-05:00

this all new to me, so please bare with me. thanks to all of you for helping through some hard times

Welcome...DAD!!!

2009-12-20T09:21:00.001-05:00

My dad will now be responsible for this blog, as he is ready to take it over...

now get to work and I will be checking it daily for updates as you check Riley's

Anything at all you want to blog about...not just the New Heart stuff...

this is for you to have fun with...so get to it!!!!!

HAPPY BLOGGING!!!!

Amazing...

2009-09-03T04:19:00.002-04:00

We now that dads donor is 19yrs old from NY, we are forever thankful of their sacrifice and ultimate Gift of LIFE. I spoke with dads RN Tara and she said Dr Macgillivry was in at 9pm

and has cleared him to leave the ICU today 9/3/09 and head over to the

step down transplant unit on Blake 6.

Wow, this news is incredible, I can't believe he is doing so well.

He was up walking today and sitting in a chair for hours, he is thankful to be ALIVE.

The smile on his face was the best thing I have seen in a long time,

who ever thought we would see this day???

We are very thankful and reminded every minute why we have dad with us,

and the loss the donor family feels everyday.

Heart Transplant 8/31/09

2009-09-03T04:12:00.002-04:00

Dad is doing great, he was extubated at 5:30pm and is now breathing on his own. His blood pressure was a little low so he is on medication for that, but they say that is to be expected. The bleeding has slowed down so they do not think he will need to go back to the OR, which is great news.

He is resting comfortably and talking to the nurses.

He is very thankful for his "Gift of Life"

Update 9/1/09 @ 10pm

2009-09-03T04:11:00.011-04:00

Dad is out of surgery and surgeon says it went great. New heart is beating on its own. Still not out of the woods but we are over the tough part, just getting the heart. Dad will be in recovery for a week then he will move to the transplant step down unit where he will be closly monitored for organ rejection symptoms. Dad received a young healthy heart so everyone is optimistic....will write more....

Just saw dad he is resting comfortably....looks good!!!!

Update

2009-09-03T04:11:00.010-04:00

Ok peeps, I know I have been living with this scenario for months now, but HOLY COW...

DAD JUST HAD A HEART TRANSPLANT!

Modern medicine is fascinating, I can't believe he has just received someone elses heart. The truly amazing thing is that it was harvested out of a very giving young person and placed into dads chest cavity and just began pumping as if this is where it was meant to be...

pumping on its own no stimulation, just ok here we go again...beat beat beat.

OMG OMG OMG We have a HEART!!!

2009-09-03T04:10:00.003-04:00

Sorry if this is redundant but I have nothing else to do so I will give you a run down of the whole day so far....9am Paul calls to find out what we have planned for the day and to ask about Brian s grandmothers...he calls everyday to get their updates and to check in on everyone. I tell him B will be heading over after he gym to check on Grammy, he says great just let me know how things go, we hang up. I continue to watch the greatest movie ever made...The Santa Claus with Tim Allen...i get almost to the end and the phone rings, it =s dad I can tell by the caller ID...I answer and dad says so nicely that he is headed to the hospital..i ask what is wrong, he says nothing that the hospital called and they have a heart for him, and for him to get there as soon as possible. Now at this point in the conversation I begin to freak out, ahh so quick so soon, I mean we were listed 1A only 4 days ago. So I run around like a chicken w/ my head cut off and secure a place for Titan to spend the night, and I know that Riley and Annaboo will be fine staying home, b/c Auntie Erin will be by to walk them as she always is, we are blessed to have her in our lives. So we finally get to the hospital and we are all in the room, we are having a blast, everyone is in a great mood, nothing heavy hanging over our heads, but we all kn ow where we are there. Dad is cracking jokes and causing trouble right up until the minute he is wheeled away, thanks dad..I will get you back for all the trouble you have caused before running off to the sanctity of the operating room, damn you...you will have to answer for your actions, hehehehe. Dad was wheeled off to the operating room at 5pm, we received word that the first incision was made at 9:20 pm, meaning everything is a go and the heart is young and viable. His heart failure MD says this is the perfect heart, if she could pick a heart any heart, she says this is the ONE she would choose, so we feel very confident in her words. The cardiac surgeon also d=said he was more than pleased with the donor heart, all good news. As i write this dad has been in surgery now for almost 5 hours and the waiting is the hardest part. They tell you waiting for the heart is the hardest part, that would be true if we actually waited for this one, this perfect heart literally fell into our laps 4 days after being listed for transplant, this time around. We did wait and have our trials and tribulations earlier this year, but as they say everything happens for a reason, well our reason is...we were waiting for the right one to become available. I will continue to update as i have more info available.

Please remember the donor family in your thoughts and prayers as without them,

this NEVER would have been possible.

We love an appreciate their selfless sacrifice, we are forever in thier debt, we owe them everything, they are truly now our angels as they have to be looking over dads shoulder remembering their loved one everyday.

Birthday Wishes...

2009-06-26T03:25:00.002-04:00

I got my birthday wish today and I didnt even need to blow out the candles!!!

I had lunch outside in the sun today with Dad.

It was a wonderful afternoon that quite frankly I didn't think I get to see.

Dad

2009-06-22T03:08:00.005-04:00

Update....6/19/2009

2009-06-20T07:45:00.002-04:00

Update....Papa has NO MORE IV's !!!! Thats right no more, and the arterial line is out, so he officially off telemetry. Now I can take him for walks around the hospital and out to the patio for for lunch. I love that he has all this freedom now, woohoo. He is very happy to be up and getting out of his room more. We decorated his room, but still who wants to look at hospital walls all day. He is awaiting the Fourth of July..he gets front row seating on the 22nd floor of the hospital which sits right over the Charles River where they light off the fireworks, he is overly excited about this. His MD's think he should be home in time for his birthday on July 20th.

Update...in a chair

2009-06-17T02:21:00.002-04:00

So here is dad on 6/15/09 six days after surgery. He is doing great, he received the Heartmate II VAD system and it is completely portable, he will plug into a wall at home when he is resting or sleeping and when he is up and about he will run on batteries, yes I said batteries. He will use 2 batteries at a time and they will each last about 2 hours, he has 6 total, so he can feel free to go on and live a productive life outside the hospital. He is still waiting for a heart transplant as this is called a bridge to transplant...he will finally have some quality of life back. As you can see by the pictures he is feeling better and the VAD has made a huge difference in his attitude. The first pic he is being sarcastic and making faces when I simply asked him to smile. He was up in the chair today and tolerated it well, he had his feet on the floor which is huge as he has not touched the floor in 83 days, he loved the cold tile under his feet.His appetite is coming back too, he is starting to eat more and more everyday.

Update

2009-06-14T03:54:00.001-04:00

Papa was sitting up in a chair today and he only has on chest tube left, and that will be taken out today 6/14/09, he is doing so good, momma is excited. He practiced changing his battery again today, he is getting better at it, he will be a pro in no time. He ate most of his lunch and enjoyed the view of the Charles River for most of the morning. He is doing really good sitting up, he has some edema in his legs but that is to be expected.

Update

2009-06-10T23:29:00.002-04:00

Dad had VAD surgery on 6/9/09 @11 am, things went really well. Dr. Magillivry was very pleased with how things went and was encouraged by how he was responding. He had the breathing tube removed this morning around 11:30 and was breathing on his own without and trouble or difficulty. Mom says he was groggy but knew they were there and was asking a lot of questions about his device and how it all works. He likes his nurses, which is more than I can say, I don't like Travis he wants no part of speaking with family however they encourage you to call 24/7, he is just rude and speaks to you as if you have no clue as to what VAD surgery is about, grrrr.

We did have more than one angel looking over our shoulder yesterday, dad had his in the OR and B and I had 2, Dr Parks who came to the waiting room to advise me on what was happening and Janice for VAD was our other angel, she was fantastic, she kept us up to date on everything all day, she calmed our fears and held our hands and gave hugs when we needed them, she was a truly welcomed part of yesterdays experiences. Kathy from heart Failure met us also in dads room after surgery to make sure he was ok and to check on Me and B, she too is a gift from god, just like Dr Parks and Janice....MGH is truly remarkable and the staff is top rate.

Twitter

2009-06-08T05:42:00.004-04:00

Dad is offically on twitter, I will help him tweet as often as possible.

I will see to it he gets all his tweets....

@donate4life

June 7, 2009

2009-06-07T21:11:00.002-04:00

So we made it through another weekend, dad is still waiting, they had a heart for him yesterday but it was too far away so it would not have been viable by he time it got to Boston, so we continue to wait. We met with the surgeons and heart failure teams on Friday and they were considering doing a VAD surgery for later this week, but things have changed a bit since then. VAD is a ventricular assist device which is portable life support, meaning he can get out of bed and move around but NOT leave the hospital, this is a bridge to transplant. However he started to respond to his new medication so they may hold off and just transplant when a heart becomes available. The other problem we have with the VAD is if they have to heavily transfuse him during surgery he could build up antibodies to the blood and that severely limits the heart he could receive.

June 4, 2009

2009-06-04T23:29:00.002-04:00

I went and visited dad today, he was doing well. His mixed venous numbers were low this morning but they came back up after he was given more Dibuterine (diuretic) His blood pressure was very low today but they say that is because he was on Nitro for the past 3 days. The ectomy he has had in his heart has all but gone away, meaning he was throwing PVC’s (bad rhythm) He is more stable now, than he has been since going into the hospital, which is great news for everyone. The heart failure team was in this morning and said they had gotten nibbles on donor hearts all week but none of them proved to be the right heart for dad, so we wait until the right one comes along. Thankfully the weekend is here and weekends are always good for hearts, or so the doctors say.

Dad was excited to see the picture I brought him of Titan, we put it on the wall at his feet so he can see him, he loves him already. Dad can’t wait to meet him.

This out of order sorry...oops

2009-06-04T03:55:00.003-04:00

Smiles all around....

Posted May 23, 2009 4:25am

I finally saw dad smile this morning, he is officially listed for transplant, ahhhh finally and just in time for the long holiday weekend. He was sarcastic when his favorite RN asked how he was feeling tonight, and he has not been sarcastic for the past9 days, so this is a huge improvement for him. He looked so much better that my sister had to text me to tell me she couldn't believe the change in him, oh and he ate his lunch and dinner again something he has not done in 9 days. Things are finally starting to look up, i will keep you all posted...

2009-06-04T03:01:00.002-04:00

We went to visit dad in the hospital on Sunday, and we knew he was in the Cath Lab, because Ellen his RN called to let us know he would not be in his room and that the PA line they placed for surgery had to be removed immediately because It was Heparin coated and dad is allergic to Heparin and it was causing him to go in and out of Ventricular tachycardia. We arrived at MGH about 15 minutes later and called the desk to let them knowwewere in thewaiting room, and to let us know when dad was back in his room….about 10 minutes later we hear over the inter come“CODE BLUE CODE BLUE IN THE CATH LAB” we panic, Dad is in the Cath Lab! I call the nurses desk and I am told that they don’t know anything yet and as soon as they do, they will get in touch with me, about 20 minutes of sheer panic and stress goes by and we see ELLEN walking in saying it was NOT dad, she reassures me he is fine and she spoke with him, he is ok.

He gets back to his room about 2 hours later and I cry out of fear, I finally BROKE! He is in good spirits and doing well, being sarcastic and cracking jokes. I walk out of there held up by Brian as I have nothing left, I am emotionally, physically and literally EXHAUSTED, 65 days of living on the edge, now we continue to wait for a new heart and hope one arrives soon….

Welcome

2009-06-04T01:07:00.000-04:00

This is the blog I decided to start or rather move, so that everyone can catch up on what is going on with my Dad, Paul Balthazar

2009-06-04T00:51:00.007-04:00

quick update

Posted 2 days ago

We thought we had a heart on Friday night and we did up until a minute before surgery, when they called it off due to a bad donor heart, it would not hold a rhytham once it got back to Boston, the doctors and the balloon pump guy both said they made the right decision by not transplanting, it was a bad heart. We see him back in his room on Saturday afternoon and he is doing well and in good spirits and understands the need to call off the surgery. We went to visit him on Sunday and his nurse called to tell us he was in the Cath Lab and would be back in his room around 1pm. We arrive and wait in the waiting room only to hear CODE BLUE CODE BLUE in the CATH LAB. Can you say PANIC? We were not the only ones panicking, the whole floor was, everyone thought it was dad. They sent a nurse running down to see what was going on, she came into the waiting room about 20 minutes later to tell us it was NOT dad and she had spoken to him and reassured us he was fine. STRESSFUL 20 MINUTES!!!!!! I finally saw dad 2 hours later and just cried, I broke, that was it, he was ok…dad was ok. He is still ok and waiting for a new heart, we will get one, I know we will..this time it will be the RIGHT HEART!

2009-06-04T00:50:00.016-04:00

Good News

Posted May 17, 2009 12:25am

We got some really good news today.... All of Dads medical bills are and will be paid in full, we have no bills!!! He is covered 100%, Can you say RELIEF???? We are waiting to hear on the relisting, but we also want him to be in prime surgical mode to do it, why risk having a stroke or worse?...best case scenario only.... no second guessing later that we should have waited, so we wait now and transplant when the time is optimal.

2009-06-04T00:50:00.014-04:00

Posted May 17, 2009 12:24am

Dad is still not listed for transplant yer because of the **** neg read on his Heparin test..he has 3 neg borderline tests, we need one NEGATIVE only read to get him back on the list, we are hoping to have him relisted by the weekend, ugh....in other news Riley was feeling better this morning and tonight as I was leaving for work he refused his treat, which is never a good sign. B went home and made him a waffle and that seemed to work its magic and B says he was feeling better, so now we wait and see...I have had enough of waiting and hoping and seeing to last a life time, thank you very much....

2009-06-04T00:50:00.013-04:00

Posted May 11, 2009 9:40pm

So today was not the kind of day you want when you are waiting on a heart transplant. Dad was deactivated this morning due to an allergy he developed to Heparin, causing minor blood clots in his feet, resulting in them turning blue. He was placed on a new medicine called Argatroban, hoping to get the heparin out of his system and have the test come back negative so he can be placed back on the list as early as this weekend, fingers crossed. He is doing fine otherwise; all is complicated when waiting as different things tend to arise, but you take the good with the bad as they say, one day at a time.

2009-06-04T00:50:00.012-04:00

RELISTED

Posted May 22, 2009 1:25am

Dad's sarotonin levels came back NEGATIVE so he is relisted for transplant!!!!

2009-06-04T00:49:00.003-04:00

Posted May 11, 2009 9:40pm

Riley was so much better today!!!! We took mom out for breakfast and enjoyed some pancakes and bacon can you say..."YUMMY!" Mom enjoyed it and so did we. After breakfast we went into Boston to see Daddy..his numbers were fantastic today...his NVO2 numbers were awesome..refers to his cardiac pulmonary output function (lung & heart pressure) His sugar and potassium were right on the money and his white blood cell count was great, and his sodium was up so he got have some ice in his diet coke....so we are looking to have him relisted in the morning, pending nothing happening over night.

2009-06-04T00:48:00.013-04:00

sitting up

Posted Apr 27, 2009 9:41pm

Dad was sitting up and drinking DIet Coke again today. I made the solo visit in to see dad as B stayed home to get the A/C's in yeah it is hot here. Dad was happy to finally be able to sit up. He had a date with the cath lab today to change his central line, which after a brief glitch went according to plan. The plan was for him to be in the cath lab for 10am but in reality he still hadn't gone done @ 1:30, he did not enjoy this as he missed both breakfast and lunch. He did have a few new visitors today which was nice to see. I believe they stayed for a little over 3 hours, I bet dad was worn out by the time they all left. All in all dad is doing great and his mood in wonderful, if only he could get comfortable. He is expected to meet with PT tomorrow and they hope to have him up in a chair soon, ahh out of bed how nice will that be?

2009-06-04T00:48:00.012-04:00

Posted May 11, 2009 9:40pm

My baby was sick today, I hate when he is sick it makes my heart ache. I went to Boston this morning solo, because B stayed home to make sure Riley was ok and if he did get sick, I wanted B to comfort him. I had a nice visit with dad, it was just a daddy daughter visit...relaxing and comforting. We had a nice chat and he remained upbeat and can't wait to get a new heart and continue to live life outside a hospital room.

2009-06-04T00:48:00.011-04:00

Numbers

Posted May 11, 2009 9:39pm

Our days all depend on numbers...numbers mean everything. They decide what gets done and what gets to wait; for example...dads potassium numbers are low which means no water or ice. Fluid restriction to 1500cc's a day (32oz for the day, not alot) we monitor his white blood cell count, if the numbers are high that means infection, if too low then we monitor for other complications. We check his sugar levels, insulin or not depending again on the numbers, see where this is going...everything is on the numbers. Now we are hoping his Heparin numbers read negative so we can get him back on the transplant list. If any of the above numbers are not met everyday he can be deactivated off the list, numbers rule our world, and I am beginning to hate numbers. this is just a partial list of numbers to be met everyday, too many to count, no pun intended.

2009-06-04T00:47:00.013-04:00

Balloon pump

Posted Apr 26, 2009 9:45pm

Dad is off the balloon pump and his heart is beating on its own!!!! Dad was successfully weaned off the balloon pump yesterday and he is holding his own, woohoo. He was finally able to sit up and enjoy a Diet Coke, this made him very happy. He is doing well now that the bleed is contained and he is reactivated and relisted for transplant, this is HUGE. We need a heart and we need one now.

2009-06-04T00:47:00.012-04:00

Visitors

Posted Apr 15, 2009 10:47pm

Dad had 2 very important visitors today...2 transplant survivors! They were wonderful and told dad to keep being positive and told him what to expect while in the hospital and after the surgery. Ron was from upsate New York and was thankful for his surgery at Mass General, and told us how lucky we were that we had Mass General right in our back yard as he travels 3 hours each way for all his checkups. We are very lucky indeed.

Posted Apr 15, 2009 10:42pm

DAD IS LISTED #1 ON THE TRANSPLANT LIST!!!!!

2009-06-04T00:47:00.010-04:00

better & better

Posted Apr 22, 2009 1:57am

I just spoke with dad and he sounded better than he has in 5 days, thank god!!!!Hopefully he will be relisted today or tomorrow since his labs have been stable for 24 hours...new heart here we come...

2009-06-04T00:46:00.013-04:00

Final Test part 2

Posted Apr 15, 2009 10:41pm

Dad had the final test today at 10am...it lasted an hour and all dad was responsible for was to breathe. He had to breathe room air, 100% oxygen and O2 and NO, each for 10 min and taking a vike for 5 min in between. At first glance everything went exactly as planned but we had to wait for the final calculations to confirm that theses were good results We were told about and hour...this was at 11:00am, the waiting begins.... I called dad at 4:21pm and asked if he had heard anything yet, the answer was NO!! so we wait more. Dad called at 6:42pm and told me "I'M LISTED!!!" These are the very best words in the whole english language right now. He is listed, woohoo!!!!! I know now the real waiting begins, but getting here I feel was the hardest part..now we are on the list, not only on the list but he is #1 on the list!

2009-06-04T00:46:00.012-04:00

Final Test

Posted Apr 15, 2009 3:09am

Dad has his final test today, it is the pulmonary function test. Cathy the NP said no matter the results he could be placed on meds to control it if needed and he would be listed soon. She was very incouraging as to what was going to happen today. I can not get over how wonderful all of the nursing staff has been, it is so comforting knowing that he is in good hands when we cannot be there. He loves the nursing staff, and doctors alike, they treat him very well. Overall dad is doing great however the waiting for all the tests results are getting to him. I would not say he is depressed but he is definately stressed. I know they say the worst part is waiting for the heart, but really the worst part has been waiting to finish all the tests just to get listed. The waiting is AWFUL, but hopefully it will be over today, and everything moves along right on schedule. The transplant team says because of his blood type the average wait is about 21 days for a new healthy heart, we can only wait and pray.

2009-06-04T00:46:00.011-04:00

Colonoscopy

Posted Apr 13, 2009 4:47am

Dad had the colonoscopy done this morning @ 8am...we are waiting for the results, hopefully we get them Monday morning and the news is good. This is the final piece of the puzzle, all we need is for this to come back negitive and we are "all systems go for TRANSPLANT!!!" WOOHOOO!!!!

We are hopeful

2009-06-04T00:45:00.003-04:00

Day 8

Posted Apr 11, 2009 9:40pm

Dad had a good morning followed by a "$#itty" afternoon. Dad is having a colonoscopy tomorrow morning and this is the last thing on a very long list to check off before getting officially listed as a 1A heart transplant patient. Dad had a boatload of test yesterday that ruled out everything else and clearded the way for this test...finially a light at the end of the tunnel....100 down, one to go!!!! Dad is in good spirits and is keeping himself occupied with a DVD player, movies, visitors,...

2009-06-04T00:42:00.005-04:00

This is dad on 4/7/09, three days after after he was rushed to Marlboro Hospital.

Dad went into CHF (conjestive heart failure) last Friday night (4/4/09) and was rushed by ambulance to Marlboro Hospital. He was stablized there as best they could and then tranferred to Umass Hospital. After arriving at Umass he was deemed critical and and required the Bypap breathing assist device. He was placed on Bypap and moved to the Cardiac Cath Lab and a Balloon pump was inplanted, this assists his heart to beat, he needs this for survival, without it his heart can not support life. When he was as stable as they could get him, he was transported to Mass General, where he currently waits for a new heart. His nursing staff is FANTASTIC!!!! MD's WONDERFUL!!! Cardiac transplant team...AWESOME!! Social services...OUTSTANDING!!!

My dad almost died on 4/4/09 he went into CHF and never recovered. He is in the Cardiac Care Unit at Mass General Hospital and will remain there until he gets a new heart. He is waiting patiently on the heart transplant list. He went into the hospital on 4/4/09 weighing 227lbs and now less than 3 weeks later he weighs in at 175lbs...all fluid, he was literally drowning in fluid. The blue machine is called a balloon pump and is keeping him alive till he gets a new heart. Please say a prayer for him as he could use all he can get. I believe he survived Friday night because he was destined to live and continue on with his life, he has made it so far, however we have had a few setbacks along the way...he had a massive bleed on 4/19 that has now resulted in him being placed on the deactivated transplant list until his white blood cell count returns to normal. I spoke with his nurse Ellen a little while ago and she confirmed that the count is returning to normal and he will be re listed soon. waiting patiently on the heart transplant list. He went into the hospital on 4/4/09 weighing 227lbs and now less than 3 weeks later he weighs in at 175lbs...all fluid, he was literally drowning in fluid. The blue machine is called a balloon pump and is keeping him alive till he gets a new heart. Please say a prayer for him as he could use all he can get. I believe he survived Friday night because he was destined to live and continue on with his life, he has made it so far, however we have had a few setbacks along the way...he had a massive bleed on 4/19 that has now resulted in him being placed on the deactivated transplant list until his white blood cell count returns to normal. I spoke with his nurse Ellen a little while ago and she confirmed that the count is returning to normal and he will be re listed soon.