Hello everyone, I was admitted to the hospital with severe hydrophrenosis and very bad rise in creatinine and drop in gfr. I need nephrostomy tube or pcnu because I have a ureteral stricture that they have tried many times to stent ,balloon etc and it must be exchanged out for new one every 4-6 weeks but I always get hydrophrenosis at the 3.5 week mark because my tubing gets clogged with debris,yeast etc.but with the hospitals so busy etc I have gone past the correct time frame everytime until they see the kidney numbers are bad or I tell them I need ultrasound and I believe I have hydrophrenosis.....This last time I went 13 weeks with no exchange and having hydrophrenosis which led to admission and negative changes in kidney function ..The moment my numbers were ok I was told I could be discharged...but with my tube clamped! This will obviously lead to hydrophrenosis AGAIN. So right before discharge I was given Evusheld shots,1 in each arm. I have severe allergies, all to medications, pages and pages full.I Also had a minor stroke at age 17 because of eclampsia and severe hypertension related to it.I Have never had any heart problems at all but being a 3rd time transplant patient, I am at risk of cardiac issues /vascular issues . I felt nothing when given shots and 20 min later given discharge papers where I read people w severe allergies should not receive. People who are at risk for cardiac problems or who have had cardiac problems or stroke should not take. And the worst reaction they've seen is heart failure, heart attack, A fibrillation and cardiomegaly . Over and over heart problems are brought up as the most severe reaction people have had to Evusheld. Evusheld is a prophylactic to protect from getting covid. Not FDA approved, only emergency use for transplant patients and other immunosuppressed etc.
Well the moment I got home,so excited to see my dogs and be at peace and HOME,I felt burning in my chest heart palpitations and had trouble breathing. My hubby took my blood pressure and my pulse and 02. He looked so scared.My bp was 200/101but worse my pulse would be 177 and in 1second go to 130 then jump to 169 then jump to 148 and jump to 179..every jump in a second. I now had chest squeezing crushing pain and it would get worse laying on my side.I was afraid to call 911 in case I died,I did not want to die in ambulance without family or in cold hospital vulnerable and scared without all my family. At home I was surrounded by them...but they called and I'm grateful they did.Paramedics said I was in severe A-fibrillation and they thought I was having heart attack or stroke. At the ER it ,was the same.They wanted a large line ,close to a central and they did ekg and checked cardiac enzymes often and I was given some med constantly through iv for heart.My transplant team was called and they told local ER that they wanted to get me there to them and admitted to cardiac unit but there would not be a bed available til morning or afternoon so I was to stay there where even with the iv heart meds my bp and pulse were high just not so much jumping around .The morningcameand the ER Dr told me my team said that it was probably caused from stress over that days procedure ( i had procedure/exchange days ago and have had so many by now I haveno stress or worry over procedure itself) They said for me to call pcp and get cardiologist referral but when I spoke to transplant nurse she said Do NOT call pcp and that they would take care of and they got appt for the IR cardiologist I saw pre-transplant. Now I am petrified this is a permanent problem. If it is,I would never get a 4th transplant if needed(I'm 48) and maybe not the major ,complicated surgery,retransplantation of ureter to kidney, cutting out the part with stricture and using a piece of my small intestines in its place to reattach and finally cure this problem . And hopefully after all that I'll return to my baseline I was at first month after transplant. Has anyone of you had Evusheld? Has anyone had a bad reaction? Has anyone been told they couldn't have because of reasons mentioned above.Has anyone experienced a cardiac problem, a-fib heart attack after given? I am reporting my side "effects" to the FDA so they have more information and can help others. I will not be getting the second set of shots and wish I had never had first and was TOLD the problems that can happen and why I was being given even though contradictory to what the FDA is saying.
🙏🙏I apologize for being so long and how it's written. I'm exhausted sick and worried for my family should something happen to me.I appreciate with all of my heart anyone who took the time to read through my whole post.Thank you.God bless and I wish you all good health and happiness! 🙂
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I am sorry that you have gone through a lot recently. Are you sure you received Evusheld? In the US the injection is not given in the arms.With lots of other medical issues and reaction to procedures you have had, there are many factors at play here for your heart issue. I hope you are under the care of a good medical team so they can help you get better soon.
Hello, thanks for your well wishes. Yes,the nurse said either the top of my buttocks or back of my upper arm as intramuscular injections "I said arms please" and the first arm injection I felt nothing went well. The second injection in the opposite arm was a little painful, nothing bad at all but felt. But I truly believe for me,with my ckd since age 5,having a previous stroke and multiple severe anaphylactic reactions to many many meds and the different changes in my electrolytes constantly recently, that the Evusheld pushed my body over the edge as far as the heart. I'll be seeing cardiologist very soon and will update.
Thank you again for wishing good care and good health to me. I hope the same for you.
I just wanted to say I am so sorry to read all you are going through. My heart aches reading your well written urgent message. My spouse was not given Evushield or ever offered it and last week at his nephrology appt was told he should not get it, and I cannot remember the exact reason why. The omicron covid19 variant in a study I read showed this medication did not help most kidney transplant recepients who received it. I sincerely hope your medical heart issues are resolved very soon and your kidney is doing alright. Sending you positive thoughts.
Thank you so much. It means alot to be heard and hear some kind compassionate words. There are days it can make ALL the difference. I hope your spouse is doing well and his kidney is functioning wonderfully! My point in sharing was to also help others to be aware and to make sure to ask questions and look up who should take,who should not ,and why. And of course I felt the need to share in in a safe space with others who understand life with CKD ,dialysis and transplant. Sending positive thoughts filled with strength peace and healing for you and your spouse. :)Thank you again, Best to you and yours.
I Hope your health improves quickly. YOu have gone through so so much. I wonder if anyone after 3 yrs with their transplant and never had any kind of heart problem prior to this surgery if NOW they are having any type of heart issues. I hope people write if they are. REcent dr appt shows my spouse transplant is doing well, but his heart is skipping a beat often and ekg done in office and waiting for cardio referral. TAke care,
Hi! My hubby, with a transplant, received Evusheld and no side effects. A few weeks ago, I contacted Covid (undoubtedly Omicron), but he escaped it. No reason officially given; we're simply glad he didn't get it. However, earlier, my hubby did get a-fib immediately after his transplant. It was treated medically with Eliquis, a blood thinner. He was too weak at the time to have his heart shocked into rhythm. Later, he was taken off Eliquis after falling and getting a severe brain bleed. He's taking nothing now for the a-fib (the neurologist prevailed) and his cardiac function and rhythm is fine. With a transplant, I do think reactions to most everything is more likely. Glad you reported your outcome. I hope your a-fib also disappears and that nothing stands in your way if you need another transplant down the road.
Hi Darlenia, You mentioned you got covid19 and your husband has a kidney transplant. Did you live in the same house as him as you recovered? If so, how could you isolate from him unless you have a large home and 2 bathrooms? Please explain for this is a concern that I have since my spouse has the transplant and we live so isolated since his transplant problems started in FEb 2019 to now that if I got covid19, I'd have to stay in a motel due to our small home with one bathroom. I have yet to have a doctor tell me this idea is silly. Please write back with details. thanks . Glad you are well now and that your husband stayed negative.
I'm happy to answer your questions. My daughter and spouse really wanted us to see us to see their children (our grandchildren). So we finally acquiesced, made flight plans, and arranged for a hotel room in case the kids caught a cold, etc. We only stayed in Colorado for five days and we were scrupulous about wearing masks, eating outdoors, etc. Immediately after we returned home in Virginia, I thought my allergies were acting up (no sore throat). To be on the safe side, I tested myself and discovered I was Covid positive - this was verified by an Urgent Care Center where I immediately went to get authorization for Paxlovid. (The PA there said people seemed to getting Covid at the airports.) From that point on, I wore a mask night and day even though my hubby and I slept in separate bedrooms, used different showers, and tried to stay separated by around 10 feet during the day. I washed my hands constantly. My symptoms only lasted a week. I wondered why my hubby didn't get sick. Did he did get it too but was asymptomatic? (He didn't want to test himself.) Maybe the Evusheld antibody injections he received only a couple months earlier blocked it. Maybe the Covid boosters helped him avoid it although I'm reasonably sure my variant was Omicron, not Delta. I do know my husband had ample time (2 days or so) to catch it from me when I was most contagious (and unaware of that fact) while we were squished together in a tiny hotel room and then a plane. I'm still amazed that Covid hopped and skipped right over him. In your situation, if you should contract Covid and if you chose to remain in your home, I would definitely shower at different times, spritz a bleach solution on fixtures that are touched, keep towels separated, sleep apart in an easy chair or something similar, wear a mask all the time, etc. If your situation or intuition says this won't work for you, then by all means make your way to a hotel or elsewhere. There are no right or wrong answers - we all have to trust our instincts. Meanwhile, my husband intends to keep up with the Evusheld antibody treatment, the new Covid booster, the flu vaccine and anything else because, as far as he knows, he's still at risk for literally everything. Luckily, he has had no unusual reactions to any of them thus far. And I, of course, will be supporting him by also getting the next Covid booster along with the flu vaccine. In the meantime, I'd like to add that Paxlovid is truly very quick and effective in reducing Covid symptoms (although not transmission) so anyone who catches it will likely feel good reasonably fast. And, thankfully, there are also many transplanted folks who have contracted Covid and who have received great treatment from their centers. Life is meant to be lived - we just gotta be strategic and practical to make things turn out well for us. Blessings!
I appreciate your reply so much Darlenia. I hope you are fully recovered and glad your husband did not get covid19. Our nephrologist said that that Evushield is not a medication my husband who has the transplant can receive. I read a study that showed the majority of kidney transplant recepients who got Evushield , it did not protect them as hoped against this Omicron variant. Odd how things skip people (glad it does) and no rhyme or reason for it. My spouse got his transplant late Nov2018 and early FEb2019 started to have assorted kidney problems like a rejection (he recovered) and then assorted blood chemistry problems leaving him with no energy to do much at all and then CMV virus arrived. This all happened for a year then covid19 arrived in 2020. So for us, we've been living very isolated all of 2019 and then with covid19 more isolated. WE have not allowed anyone in our home nor we go into theirs, no museums, no movie theatre, no restaurants, no vacations out , no to just about everything except outside visits with people. Where we live 7 months of the year is cold or very cold, so we have been living very isolated for a long time and its affecting our mental health , mine especially since I"m an extrovert. Nothing helps long term with this issue. My spouse had chemo for cancer 30 yrs ago and in remission and this transplant journey has been the hardest in our lives of 45 yrs married. He still feeled fatigue and lousey often like he's on chemo he explains to me. He felt better before the transplant almost 4 yrs ago than he does now. Medications are the big issue and 'now' on 4 insulin shots a day instead of one. Its been a very rocky road for him and I. we have no family support due to too far away and glad I can physically pick up the pieces when needed. I wish you both all the best.
So sorry to hear about your rough road you're on with your husband. Your husband certainly is in a delicate medical situation. My hubby's transplant were resolved early on, so it's sad to hear that yours continues on. We, too, are struggling with diabetes and insulin, but we've recently managed to bring my hubby's insulin requirements down - inflammation from his utis, now fixed, seemed to be the culprit there. (Inflammation often causes glucose to spike.) And his ureter leak from the transplant is completely gone. Amazingly, my hubby handles vaccines and other injections (always has) with little to no side effects - and he's almost 73 years old. With regard to Evusheld, our center strongly promotes it, whereas others may not. Research is mixed on it and I think each person's ability to handle it must be evaluated. I do know they made him wait for an extended time before releasing him. Gosh, I wish that your hubby's experiences were more like ours - after a very rough start, we're sailing ahead quite smoothly now. As a matter of fact, he just left to have lunch with a few of his friends a full hour away. So here I sit at home alone! Lol. I have noticed that R&D to keep us safe continues to advance on all fronts. And I sense there will be some positive outcomes in that for you and all of us. You and your hubby definitely have paid your dues and need to see brighter days ahead. Sending hugs your way!
Thank you so much for taking the time to read my post and for sharing your husbands experience with Evusheld ,his transplant and A fib. ..and of course for your kind words of support and well wishes for the future. I am so happy to hear your husband did not get covid, no longer has A fib and his cardiac function is good. I hope he has fully recovered from his fall and brain bleed 🙏 and he remains as healthy as possible and strong. Being a caregiver/spouse of someone with chronic illness is very difficult at times for many different reasons. I hope you are doing well yourself ,that you are healthy and that you know just how much your support and love means to your spouse .
oh my goodness! You have been through so much. I am glad for this forum giving us all a place to share and be heard. It can be so scary to go through any of this. We are cheering for you!
I got Evushield before being discharged after transplant. Was given the option of 4 shots in arms or 2 in butt. I chose the backside - they were really painful injections (and I don’t usually mind much). I had no reaction and am hoping for some protection from covid, especially since I have a school aged child and will eventually go back to work as a teacher. Even with masks and good ventilation there is no way to avoid exposures.
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went well. The second injection in the opposite arm was a little painful, nothing bad at all but felt. But I truly believe for me,with my ckd since age 5,having a previous stroke and multiple severe anaphylactic reactions to many many meds and the different changes in my electrolytes constantly recently, that the Evusheld pushed my body over the edge as far as the heart. I'll be seeing cardiologist very soon and will update.
when it rain it pours 
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