September 15, 2015
Rob has surpassed his 1year mark with a few bumps in the road, but nothing too serious that him or the rest of us can not handle.
He has been doing amazingly well. Walking, bought a bike, going fishing with his Dad, throwing balls with the kids & just being able to be himself!!
So glad that I am able to sit back & watch him as he can breathe with such ease. Being able to do so much that he was never able to do before, that I can, as well as many others do with such ease....
I can not THANK everyone that has been by our side during this absolutely amazing journey. The journey of course is not over, but the worst of it is. The continued support has been truly a blessing!! WE love you all!!
Thanks again!!
-Jeannette "Netty"
September 21, 2014
Hello everyone. I am post transplant august 31. One of the most important people I have to thank for this is my donor and I will be thankful for the rest of my new lease on life. Others are my team at New York Presbyterian what a great bunch and the nursing and staff are top notch.
Netty helped me through one of the toughest parts of my life and thank my family and friends for their continued support and encouragement.
This road was and will continue to be a little rocky but so far I have exceeded my doctors expectations so as long as I stay determined I will persevere.
I will update soon.
I head back to NY Presbyterian in 3 days for a follow up on blood work xray and breathing tests and will continue every week for 12 weeks then once every 3 months then once every 6 months then once a year as long as I am doing well.
Thank you all again.
September 7, 2014
Hey there Everyone!!!!!
I have wonderful news!!!! Rob received his gift of life on Sunday August 31st and surgery ending at midnight on Sept 1st!!!! He is doing amazingly well! Had a small setback, but it helped him improve his breathing....he is finally getting a comfortable rhythm! He is located at NY Columbia Presbyterian!!! The amazing doctors, nurses, respiratory staff and the rest of the staff have been amazing!!!!
I owe everything to the 20yr old donor and his family...because he choose to become a donor he saved my loves life and I will forever be grateful!!!!
Thank you to everyone who has sent prayers and well wishes.......it means more to us then you will ever know!!!!!
May 18, 2014
May 16th at 6:30 AM got the call for lungs. It was a bit crazy morning because hospital called me missed call and they called my step mom her and my dad were in New Orleans so she tried me missed call so she tried my best friend Jack he came to the house very excited told me I had to call New York they have lungs for me!
Netty and I got on the road headed to Columbia Presbyterian. While I drove Netty was busy informing everyone of the great news. There was an accident on the way so we got rerouted But made it.
Got admitted and up to room got settled in and they drew 12 vials of blood. Started an IV and took vital signs.
Waited till about 5 PM and they moved me down to pre op room. Waited till 8 and they said there was more of a wait but soon. About 10:45 told us it was a "no go" because only one lung was good. A bit sad but there was good out of situation there was a man there that needed only one lung so that was all good. Was thinking about the donor and there family all day and thanking them in my mind for such a selfless gift at a second chance for someone who they have never met. We stayed the night because there was a bad rain storm all night plus parking garage was closed and didn't feel like dealing with anything it was after midnight so got discharged at 10 Am and headed home was a nice ride great weather and no traffic on a Saturday morning. Got home and feel asleep because wasn't able to sleep didn't have my bipap machine but it was ok. I was in more of a daze anyway all night.
There is still good in this world it's just not promoted as much as the bad. If we all started to focus more on the good maybe the bad would fade away.
This will happen in due time. It was obvious that it was not my time. I am grateful for all of the support I have and wouldn't be here without everyone having my back. Thank you.
January 5, 2014
Added a couple photos. This is a start to a new year hopefully better than 2013 alot left behind with that year. Here is to a new start. Still waiting for the call of a miracle and a new start on life. doctors in Hartford are still talking about double listing in Pittsburgh as well as New York just figuring out all insurance and ways to get to and from Pittsburgh so can stay listed in NY plus its a life change because if transplanted in Pittsburgh will have to live in Pittsburgh for at least the first 3 months post transplant. Yet another hurdle to over come but nothing has stopped me yet. My family welcomes me with open arms in Pittsburgh which Im grateful and grateful for all those that have been helping through out this whole process wouldnt be where I am today without you all.
November 15, 2013
Off of Home IV feel cleared out so to speak. Still on some what high dose of prednisone still 30mg per day to keep inflamation down and able to sleep a bit at night but my other organs pay the price. Still waiting on the call from Columbia. Talked to a Insurance addivacte again today on finding me Insurance come january 1 that will be sufficent for my needs. Until next week keep breathing everybody.
November 3, 2013
October 2013 FEV1 (how much air you blow in first second) is 16% normal is 70% or higher. Put on home IV 2 antibiotics Tobramycin & Zosyn. Very powerful Antibiotics. 30mg Prednisone (steroid) for inflammation. get about 1-2 hours of sleep a night. on Bi-pap with 5 liters of O2. 3 liters of O2 at rest 4-5 with exertion. Will update weekly
November 3, 2013
Its getting closer to January 1,2014 yet again I have to change Health Insurance. Hopefully for the last time. what a rocky road. To those who are healthy god bless.
On another note I maybe listing in Boston and or Pittsburgh in near future. I will still be listed at Columbia Presbyterian but they are just not acquiring the organs they used too. This is why organ donation is so very important.
This will mean relocation if I go to Pittsburgh but they do far more transplant than other Locations.
Once again I thank you all that have and continue to help me in this time. I can not wait to show you all the result of your kindness.
I will try to update more as time ticks on. I am going to try something new see if it helps people understand or keep track of my health and progress.
November 2, 2013
As of June 2013 after a recent hospitalization Robert lost his health insurance and his employment of over 20+yrs as a result of poor business management of his employer. It was a horrible situation, but after several weeks & months he now has health insurance & has been approved for SSI & SSDI (which will kick in Jan 14').... His health has been declining in this time as well....He as of November 13' is now on at home IV meds, his O2 has been bumped to 3 at rest & 4 when up.
