October 6, 2023
It's been a long a rocky road with heart #2! Joey has been in chronic rejection, they tried ATGAM (Anti-Thymocyte Globulin (ATG) ATG is approved in the U.S. to treat acquired aplastic anemia and to reduce the chance of organ rejection after a kidney or other organ transplant.) This didn't work which was very disheartening.
In the meantime we found that Joey wasn't absorbing one of his anti-rejection meds, so he was started on a new med. Fingers crossed that this is the magic bullet. This poor kid has had seven 2R rejections. NOPE didn't work!
Next we try thymo (which he apparently had a reaction to so into the icu for observation while infusing) This medication is used to prevent and treat rejection of a kidney transplant. This medication belongs to a class of drugs known as immunosuppressants. It works by decreasing your body's natural defense (immune system). This helps prevent your body from rejecting the organ transplant so it can work normally.
This may have worked two biopsies with a 1R!!!! Now the boy has noooo immune system so we are masking up wherever we go! Next biopsy will be Halloween Day.
WISH US LUCK and PRAY please!!!
March 25, 2023
Joey's had some bumps in the road. The drop foot is still an issue. He has also contracted Cytomegalovirus (CMV) the virus that causes Mono. He was pretty sick and had to be admitted to the hospital for 5 days, he came home with a picc line needing 2 infusions a day. His numbers are now looking better and he is starting to feel better as well. (thank goodness) They found some blockage in his right carotid artery I am still not sure what they want to do about this hurdle. For now we are just keeping a close eye on him.
January 2, 2023
Joe has been in the transplant list here in Tennessee at Vanderbilt hospital for four months, we got "the call" December 29 the following afternoon he was transplanted. He's off the ventilator but not feeling so hot. We've got a long road ahead of us let's pray for minimal speed bumps.
September 23, 2022
We are here in Tennessee at Vanderbilt, Joey is currently listed and we are patiently waiting. The team here is already trying to make Joester more comfortable, he is being seen next week to see if he's a good candidate for a sub-cutaneous defibrillator. Which will get him out of the Zoll Life Vest that he's been wearing since Dec. 22, 2022 which is very cumbersome and uncomfortable. We have been told our wait will probably be about 3-6 months as they don't have anyone with the same blood type as Joey currently listed. If he were hospitalized it could happen sooner. I'm quite content keeping him home until hospitalization is absolutely necessary.
We still haven't heard from Columbia whether he's been accepted or denied which is thoroughly maddening.
Please keep your finger crossed, send up some prayers or good vibes whichever is your choosing, We could really use them especially with the latest financial set-backs.
As it turns out all of our previous visits to Columbia and Vanderbilt have been denied by our insurance!!! It would have been nice if I was aware of this situation from the beginning. Shoulda, coulda, woulda. I am in process of appealing what I can.
May 23, 2022
Welp, we were in New York at Columbia last week. That went okay. Not a fan of having to be rude to be treated with respect. This week we are back in Tennessee, and it looks like we will be approved here. (fingers crossed) The doctor here was saying they want and need to move as fast as possible. To this mom that's a little intimadating!!! We need to find a place to live and we need a vehicle!!!! Whatever it takes it's that's what we'll do!!!
April 8, 2022
We are sitting in the airport waiting to come home from Tennessee. I believe the evaluation went well. The team will meet and give us a call next week. Columbia is dragging their feet. Can't get answers, sooooo that's not sounding/feeling too positive
March 28, 2022
We Leave for Tennessee March 31, for the whole transplant evaluation! We will be there until April 8 hopefully they accept Joey into their program, they are telling me he doesn't need desensitization, which is in my opinion the best scenario hopefully he can be listed and transplanted with no issues. Fingers crossed, prayers continuing and any other thing we can do for luck!!!
March 10, 2022
We have heard back from Tennessee and good news on that end, in that region he is only 37% sensitized and doesn't need to undergo the desensitization treatments if we get accepted to Vanderbilt after the initial evaluation process!
March 7, 2022
We have gone to two Transplant centers to see if they will accept Joey into their program. We went to Tennessee on the 28th of February. We loved everything about the Hospital and the area. They are doing a work up of all of Joey's tests and meeting with the Desensitization team on March 8th hopefully we will here from them sooner rather than later. We also went to Columbia Hospital in New York, they are stating that Joey may not need desensitizations (That would be great) but again they ran all their own tests and hopefully we'll here back from the soon as well. Maybe, just maybe we'll have to choose between the two, instead of one of the two choosing us.
February 19, 2022
It's been quite some time since we've updated. Joey has been listed for quite some time now with no offers. His CAV (cardiac allograft vasculopathy) has gotten considerately worse over the last six months. He has two arteries that are 90% blocked and cannot be stented due to the size and place of the arteries. He is wearing a "Life Vest" which is an external defibrillator 24/7, being that he is at risk for sudden death.
It looks as if we will be needing a new transplant center, one who does HLA desensitizing. We have upcoming appointments at Vanderbilt in Tennessee and Columbia in New York. Wherever we end up, relocation is needed for Joey to have the best chance at success. Needless to say we were not expecting the added expenses. Let alone the stress of having to relocate while dealing with all of the other issues that come along with the transplant process.
April 18, 2019
Joey's getting his bike this weekend!!! No more excuses, get out there and RIDE those pounds and emotions AWAY!!!! The Joester had an awesome week. The eating disorder and weight loss program at the University of Pennsylvania ROCKS!!! Thanks Sharon.
April 12, 2019
It's been quite some time since we've updated. Joey has been battling some pretty serious depression, which has led to weight gain and being put on the inactive list. Which is sad but everything happens for a reason, right???
Joey has been seeing a therapist at his transplant facility who has been amazing, he switched Joey's antidepressants, (which one of the side effects was weight gain) which has given me, my son back (almost). His therapist has also has gotten him into the center for weight and eating disorders at the University of Pennsylvania. Which has been a blessing, his dietitian is an absolute dream. Catering to Joey's wants and needs. This is our 5th Dietitian and Joey has finally connected with one of them!!! As of now Joey is heading in the right direction. We are trying to get him a bicycle. So he can do a little something. Not being able to do "anything" has really taken a toll on him.
His condition is stable but critical, we are more than hopeful that in the near future he will be back on the active list and transplanted soon.
