Grief of transplant

Thank you for these resources, this has been something I have struggled with for years but with therapy I have been able to address it however as a parent of Ridge I often wonder if there are others out there. I wonder if there are other people with double transplants specifically the heart while I think other transplants change people too I often wonder if the heart transplants changes a persons personality, what they eat, activities, emotional, behavioral. I have literally had three sons in one one and I can show photos to see the differences. I had been going through som anticipated grief when i realized I hadn’t even grieved for the two sons I lost which I didn’t loose just the hearts but there was something special lost and I can’t explain it and I need to see if other parents might feel the same or if there are any studies, I realized I didn’t grieve and the doctors or therapist don’t even give support or resources for this and I think it is a huge issue, it’s not even recognized for that matter. My dad died waiting for a heart transplant and got the LVAD while waiting and he lost his marbles, the amount of support emotionally mentally and cognitively after for families and the patient has. It been nonexistent and I feel like I’m the only one who sees this. I appreciate your words and resources and encouragement. Thank Hank you

I don’t even have words I am right in that struggle with you. Well you were in, I’m so sorry, what we as special needs parents see and go through the vicarious trauma it has me questioning sometimes if all the stuff was worth the few good years he had? I feel guilty for thinking that way but after having to put him through so much with out a choice feels like I’m the bad guy and selfish for wanting to keep my son alive. He told us many times he shouldn’t be here. He gets so anxious when it’s doctor apt days. However we did get great news his heart and labs are amazing it’s just the neurological stuff that is causing him issues. How was your daughter after the stroke? My son had 3 but no one followed him after which led a long list of struggling for answers because I don’t know if you know this but not all charts are connected and they only have to keep your records for 7 years. I have had to dig for his records of him at stl children’s to prove he had a subdermal hematoma that cause these strokes and continues to have micro bleeds. It took them 7 years to finally listen 3 hospitals to finally get scanns. He was being treated for behavior outbursts because he couldn’t do the school work like the other kids. They kicked him out of school and I home schooled. Had they known about his strokes and I told them but without proof it didn’t happen according to them. So here we are 13 years later and I was finally just last week able to get the records get them scanned in for the other doctors to help us. It has been such a journey and we got referred to Mayo and we had a time to go but his insurance does not cover Mayo Clinic so we are just stuck. It’s like we went through all of this for what? I feel defeated as a caregiver and a mom and I’m sure he feels just as frustrated. I’m sorry that was a lot. You momma are a warrior and I am thankful for our communication.

This was not an easy life. I too wondered many times about all of the things we were putting our daughter through, if it was all worth it. The worse thing that I think we ever went through, I get reminded of it EVERY single time I see the St. Jude commercial on tv where the father is crying and telling the audience "There's nothing worse than seeing your child in pain and not not being able to do anything about it."
When my daughter had to have her muscle biopsy she was barely 8 years old. My husband and I stood there with her and we had to listen to her screaming in pain as they cut a chunk of muscle out of her bicep. She begged, cried and screamed for her father to stop the doctors and we couldn't do a thing. (the sedation the nurse had given her was not enough) The pediatric neurologist asked me if she had been given the second dose he ordered, I told him no and he stormed out of the room furious. My eight year old asked her father why didn't he stop the doctors because "that's what daddy's do, they are there to protect their children." We were both crying watching the pain she was having to go through. It's hard when you are a mother watching your child go through all of the things they have to endure. All the questions you are asking about of yourself, I have asked as well but strangely enough I never ask the question all parents ask: "WHY?" My daughter had 19 different serious medical diagnosises on her and when she got diagnosed as being diabetic needing injections, I finally asked that question of Heavenly Father and then of Kristy. This is how that conversation with my daughter went:
"Kristy have you got ANY idea why all of this has happened to you??"
She was very matter of factly, "Gee mom, I can tell you why."
"Great! Go ahead and educate me!"
"In the pre-existance, mom, I was five years old. There was a whole group of us children sitting around Heaven Father and He was handing out problems that we were going to have to deal with in this earthly state; every time He called out a problem, I raised my hand and waved and then yelled: "Pick me. Pick me, Heavenly Father." (I just stood there thinking about the fact that that WAS my daughter when she was five!) She continued on, "Every time He called out another problem, I yelled for Him to pick me. He looked at me and He told me that that was going to be a lot for one person to handle in a lifetime and I told Him, it was okay, I could do it...and so He picked me." Hearing all of that explained her life to me and while I hated what I saw her suffer through, I at least understood that she needed those things not only for her soul to grow, but for mine and her father's souls to grow as well.
I was happy to hear that your son's heart and labs are looking so good, that's a good thing, right? Maybe it will help his stress level to calm down abit with any luck, right? I don't think that makes things easier for you though, right? That's the mother in you. It sounds like your son has a lot on his plate and is having some real depression issues; not exactly uncommon in young transplant patients; my daughter went through that as well. Young transplant patients really live in the moment and do not see a future for themselves so the future scares them; that was something that my daughter taught to her transplant team which changed how young people were treated at the university she was followed at. Their young patients were finding it easier to die than to live so they were commiting a slow suicide. I am well aware of the fact that not all records are connected; I am not sure if the seven year is for "active records" or records that are archived (sp?) at a different facility. Why does your son have trouble doing the schoolwork like the other students? Was it because of the locations of where he had the strokes or is the cause due to his frustration with his health? Did his strokes show up on a CAT Scan or MRI? My daughter was having problems with her vision, letters disappearing off of the page, moving around, that type of thing. And then her memory stated causing problems, confusion on where she was going or what she was trying to do along with memeory issues. Everone thought I was crazy, basically until a new pediatric neurologist got transferred in and took me seriously. When her test results came back he told me, not only did I have 2 Cat Scans to show the strokes, but I knew the exact moment she actually had her stroke! When I told him off the wall things that were going on, he believed me and took my seriously. Have you considered contacting (WRITING a letter as you want everything in writing because it is a solid record) your insurance company to see if they will waver their policy so that you can get your son the care that he needs? It's worth a try as some insurance companies will consider covering someone under certain circumstances. If you see me as a warrior, I'm not the only one here, cc. Take care.

I wrote earlier, but a lot has happened since 12/24/24 when my husband with kidney transplant 6 yrs ago had 3rd urinary tract infection *UTI in 30 days. Our holidays were him in dire pain and had rehearsed this same situation twice and knew not to go into emerg room on 12/24 or 12/25 due to insanity of ER in any hosp. He lets his local nephrologist know the 3rd UTI is back on 12/26 and at noon we are sitting in a room for 7 hrs in the ER 25 min from our house waiting for an inpatient room. While in ER a group of doctors including his nephrol discussed best different antibiotic to take by IV (reason for inpatient status 5 days). So a drug was chosen and he was put on it as we sat and sat waiting for a room to vacate in hospital . Our last time in an ER was 2/2019 and avoided such places like the plague especially with COVID-19. Around 710pm a room was located and he was taken and settled in. I left 90 min later. THe following problems revealed when we arrived in the ER at noon 12/26 and we told every medical caregiver over and over "he is a kidney transplant recipient and has serious immunocompromised health issues and no immunity from COVID-19 and more. We wore our kn95 masks not taking them off all day except a sip of water. Over and over people working there nurses,doctors, lab techs came to care for him without a mask on! It was like a Twilight zone episode of employees in a hosp not wearing a mask to respect my spouse' immunocompromised health. We had never had COVID-19 or any type of sickness in over 6 yrs. I called the night nurse and explained in detail who my spouse was,his journey of getting the kidney transplant and problems and he has immunocompromised issues now and we lived isolated 'still' like lockdown March 2020. I started to cry on the phone I was so upset about people not giving a damn to wear a mask caring for him. The next day 12/27 I went into his room and a sign on closed door "Per Patient request: wear a mask to enter". He was there for one reason, get 5 doses in 5 days of this Iv antibiotic for a UTI that had stubborn bacteria to kill. He was discharged 12/30 last Monday 10am and that night 7pm he had cold symptoms and 12/31: "I" had cold symptoms and Jan 4 we both tested positive covid19 at home. I chose to get on Paxlovid through our family Dr on that date and a good friend brought it to my home. I have NO trust in the medical hospital caregivers who did not have the respect to put on a mask for my spouse . WE have been doing so much to protect his health for 6 yrs and came home like no one cares. When I feel better, I plan to write a severe letter to the CEO and other administrative offices about how they "let us down in a way that is so disrespectful of immunocompromised people ". WE have not shared a holiday with friends or taken a vacation or anything "normal' in 6 yrs. We left there with COVID-19 as their Christmas gifts . I feel so angry and pissed off about this . Is anyone else seeing a trend of employees not wearing masks when it is the right thing to do for the patient care?

I am a liver post transplant patient of 8 years. I experienced significant changes initially. I believe from the donor. As time progressed these feelings were resolved and I gained my independence. A return to myself. I hope the same for your son and for you. My husband went through all of this with me and his support was my salvation.