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.

@chambelc, welcome. Your post and experience underlines the value of a trusted caregiver. Transplant involves so many for a successful recovery. Congrats to both of you on your 8 years.

How are you doing now?

Hi, @dotygl.
I am so sorry for what your husband and you have gone through. As a kidney transplant patient myself, I too , have noticed the laxity sometimes in healthcare workers not taking proper precautions to protect those of us who are immunocompromised. Many workers don't wear masks. Some ask if I would like for them to don a mask. Of course, my answer is always yes. But I think they shouldn't even have to ask. They should automatically have on a mask when interacting with immunocompromised patients. That's just my opinion. I basically live in masks and never leave the house or go around people (individuals or groups) without having my mask on. I am concerned about my safety every time I have a doctor's appointment, lab draw, or diagnostic scan. I was absolutely petrified on New Year's Eve in 2023 (just one month after my transplant) when I had to go to the emergency room. It was packed with people who were obviously sick with respiratory illnesses. After checking in, I sat out in the hallway instead of in the waiting room. Fortunately, they called my name immediately, and the nurse took me to the room through a back entrance, bypassing the waiting room. I was so thankful for that. Anyway, I take my precautions and, to date, fortunately, I have not had any infections -- no covid, no cold, no flu.
So, we just need to keep doing what we’re doing to keep ourselves safe and healthy despite the carelessness sometimes of the staff. I do hope that you will write that letter to the CEO and other administrative offices. They definitely need to be made aware, and we need to keep advocating for ourselves. Best wishes to you and your husband. Hugs!

Thanks for responding as the first person on this. I am pretty close to shutting down my MayoClinic account due to people not responding to my "truth". Your writing delays that action. I don't recall what I wrote now in detail but 1/14 when I felt well enough being with covid19 symptoms still, I mailed two complaint 2 page letters to high management of the hospital. My spouse has the kidney transplant 6 yrs plus now and we both tested positive covid19 first time ever on 1/4. I tested negative 1/12 and he tested positive 1/15. We both have a deep dry cough all day long, but not when we sleep (glad about that). His normal fatigue he has always felt being on the 3 antirejection meds is worse now due to 3 UTI's since 11/22/24 and a 5 day hospitalization for IV antibiotic to kill the stubborn bacteria and now positive covid19. We have lived 'isolated' long before covid19 arrived March 2020 and still do live like that date now. I went into my first in life depression May 2020 due to living isolated like we do and I'm an extrovert in alot of nonprofit work committees and other activities in groups of women. I have yet to resolve and improve the depression regardless of the hundreds of things I have done or tried. Living isolated is robbing the spirit of my soul and long time friends of 25-40 yrs are now in the rearview mirror. I've learned now they were "fairweather friends' and either cannot handle how I live, they disagree with my choice to live as I do because of my spouse' kidney transplant or something else. Each friendship that ends that I nurture "big time" since I have no family, and that did not matter. I've had 6 yrs post transplant to figure out how to feel different and remove the depression out of my life, but it's a constant shadow. THe transplant clinic we used in VT I feel did not give full disclosure on side effects of the anti rejection medications some people have. This alone has been the major problems for my spouse. He is in dark mood swings and depression, fatigue, tremors of the entire body and other negative side effects he never had before taking the meds. He says his emotions about everything are dull/numb. Meds for him over 6 yrs have been changed in type or doseage without changes to the negative side effects. He never was on dialysis and felt better at age 59 with GFR at 13% than he does with a functioning kidney. THat function took 14 long months of rejection, hemoglobin problems and CMV. THe meds have severely made his diabetes management much worse. Most people I've learned using since May 2019 "HealthUnlocked" similar to this but out of England and way more responsive to people in the same boat fast; most people have a positive experience after the first 6 to 18 months of problems most people have with kidney transplant is past them. For my husband, it's been a downward spiral of problems. He has not had one good day. He feels worse daily since transplant 11/18 than he did going through chemo treatments 9 months 2x a month for HOdgekins lymphoma cancer when he was age 30. WE saw his transplant dr in VT Nov 2024, a routine annual visit, and she had not one suggestion after our 10 min explanation of all that was wrong with my spouse' health being on these immunosuppressant meds plus 2 different insulin shots to improve his quality of life. THe QOL is zero. We are out of ideas on how to move forward and live outside the thick glass bubble we feel we live in. Even his local nephrologist he sees every 3 months, he has yet to contact us to see how my husband is doing with his first ever covid19! I called the dr to please contact us, spoke to his nurse, and still zero . I am just blown away. I know this is long, but I seldom get a listening ear. I wish you , truly, all the best in your transplant journey and hope it is opposite of my husband. Biggest hugs!

dotygl, first of all, I am so glad that you have not cancelled your account. Please don’t give up on Connect. I find this to be a very caring and supportive group. I am not sure why you did not receive a response to your last post sooner. I just saw it today and, perhaps others who could chime in and address your concerns have not seen your post yet. In any case, the situation you describe is so sad, and my heart goes out to you and your husband. You both have been enduring so much for so long, and it has taken quite a toll on both of you.

It’s unfortunate that your husband feels worse than he did before his transplant. Ideally, we should feel better after the transplant than before it. I know that everyone’s transplant journey is different, and each person responds to treatments and medications differently. I have had my own challenges and side effects from the meds, but nothing as severe as your husband has had. Clearly, you and your husband have been doing all you have needed to do and have reached out to healthcare professionals without seeing the results that you expect. The docs seem to have tried adjusting meds and doses, but to no avail. We would hope that they would continue trying different treatments and meds until they have totally exhausted all possibilities. But it’s disappointing that his nephrologist is not responding to you at this time. But please don’t give you. You must advocate for you and your husband. Are you able to get a second opinion from a different medical facility? A good teaching hospital like Mayo Clinic could give you some answers. Are you near any teaching hospitals?

Also, you need find emotional support. Family and friends often find it difficult to know how to respond to us when we are ill, especially when the illness ends up being prolonged. This is why I want you to continue here on Connect. There are many people here who are experiencing or have been through what you and your husband are experiencing, and they will understand. I am hoping that some members will chime in soon to respond to what you have shared here. They will be here for you and give you the support that you need.

My prayer for you is that things will turn around, both you and your husband will feel better (physically and emotionally); and, after all of this time that has elapsed and all of the sacrifices that you’ve made, your lives and your quality of life will return to some sense of normalcy. Please hang in there. I’m here for you. Please feel free to reach out to me at any time. Hugs.
🙏🏼💕

Please don’t leave I actually have been sick, being the caregiver of my son with two heart transplants and three strokes that caused vascular dementia I try to get on as much as I can but lately doing the bare minimum has been all I can do. I am sorry you have felt unseen and unheard. I understand your struggles I always said transplants was trading one set of issues for a set of new ones. Advocating for myself and others has helped my mental state and also doing the best I can to care for my son we are on year 13 with this heart last December. We know we won’t get another and going through the anticipated greif has really hit me lately with his heart Cath he had and another boy named Dax at stl childrens who is waiting for a heart he has a Berlin heart like my son had and it caused me to shut down. This I know clearly I need to address this in emdr but the struggle of balancing life and death every day and still struggling to be heard with neurology because no one has all his charts it’s horrible but again advocating for yourself and transplant patients is so huge. My heart is with you and I am here for you I’m just struggling myself right now. Light and love