hello all, this is all new to me, I hope everyone is well !
I was on dialysis for 7 years before getting me transplant on 8/8/21
It’s been a journey!!!! Have been in hospital with long stay quite a few times with sepsis and well I’m just wondering if anyone else can relate or some advice as I feel really down and depressed now and it’s affecting me just generally and my whole life. I also feel no one understand what I have to go through all the time with hospital admissions and being unwell all the time .
Sorry to be a downer on a Sunday evening guys
stay well and thanks for reading it means a lot
x
Written by
Doglover121
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NO one unless they go through it will get this. CKD is a battle no matter where you are in the disease course. Just remember a couple of things. You have fought and won several times. You know how hard that is? You have saved yourself and are thriving, even if it is not perfect. You are a Warrior, and no one can take that strength away from you. It is a powerful force and an amazing force. Do something with that strength. Share your story. Inspired others. Be proud of your accomplishments. Know that although your body goes through some real trials, and challenges, you seem to come out successful and alive. Be proud of that.
Thank you. This bought tears to my eyes. I have been through a lot but it feels like no one understands the battles. Your kind words mean so much and thank you for prompt response. I literally just tucked my head in my blanket and I saw this notification. You’re right boo one will get it. I think I’m depressed, I’ve asked my transplant consultant to advice about some support but I get thrown to the GP who doesn’t care really. Just finding everything like everything so so hard and I feel like a complete loser. I should be happy right I’m 36 but something is wrong in my head.
Thank you again and thank you for being a real person
WOW! You are so young to be going through all this now. I'm 78 and just had my kidney transplant 2 years ago. It's not easy, but at least I can see that a lot of folks my age are not even alive so I can figure that it isn't perfect but I'm staying alive. I can only imagine how I would have felt to be going through this 40 years ago. When I was your ago I still thought that I was invincible and never even bothered to go to doctors for anything. Courage! You've had to go through a lot already and are still here to talk about it. I think you can feel good about yourself.
Wow 78!!!!!! And you’ve only had a transplant two years ago, I wish you longevity! I pray your kidney last you years and years !!! Thank you for sharing
This has to be Devine intervention. I am 52. In 2017 I had septic shock. My kidneys and liver had already shut down before the ER. They just said Nothing. I then saw a kidney specialist, and a liver specialist, through 2018.
I was released hv great 👍 day....ugh
Last 3 years I have been worse and worse. Why?
Well all the doctors, said I was fine. I knew I wasn't fine. However, after seeing 8 drs, I gave up. I have been om my own since 24, and have that success or death mentality. I took over 2 salons in Denver. I was working 60 to 80 hours a week. I would cry all the way home. However, why tell anyone? Well I started falling asleep sitting up. I hv chronic insomnia. Now I am ckd 3b, nonalcoholic cirrhosis atrophied right kidney. Yet can't get disability. Apologies I am just Over it 🙃 🙂
Oh wow this sounds like a lot you’ve been through too, I also have insomnia . Dcotrs really don’t care about patients anymore which is real sad.. and really disheartening as soo many people rely on them . I feel like I’m also over it but I just feel so alone you know. I’ve spent soo much time in hospital it’s so overwhelming
It is par for the course.I gad my transplant july2022, august hospitalized for 3 days with covid, october hospitalized 2 weeks, cmv,covid, cpo, then march 2023 hospitalized 2 weejs cmv rekapse ,covid very bad ,almost died then nov 2023 sspsis, cmv raging 2 week hospitalization,three months at home forscarnet infusions, really sick agIn almist died during that time.So yeah been a long haul. Every 6 months had something. Had ptsd after last bout thought new kidney problems over but no.Last bout damaged kidney.Was very depressed but meds do that too but you just keep dusting off and moving on one step at a time.Finally had almost a year with no issues,touh wood, but always always mask in public.
Wow you’ve also been through soo much. I feel like we are all just having to “carry on” and it’s so unfair. Did you seek and support ? I’ve tried but not much luck
Well, we have to be our own support system and even though you feel depressed, you are supporting yourself. You're a warrior in this medical world. Sorry about the denial of disability claims. Have you tried getting help from an attorney? There are some who deal only with disability claims. Also is there any chance you get involved in counseling? Finding a good therapist would help so much. Hopefully, someone on this site can help you get in touch with what's available here. Good luck and hope this new year brings you the relief you seek.
Yes I missed that big one ! It is one of the biggest strains in my life too. When I was having dialysis I still worked a 8 hour shift then did dialysis in the evenings every other day just to pay bills etc I still worked full time now and I tell you what i am exhausted
The 5 years on dialysis, I functioned quite well. I did pd at home at night and never felt tired. When I had to transfer to hemo at times, it was totally different. Hemo was much more laborious and tiring at times. When I got my transplant in Feb. 2020, just when covid hit, I stopped working and lived on social security and savings. Like many, it was work and possible death since I was now immune suppressed or loss of income for bills. Trying to find a job after 5 years not working has been difficult. Let alone a job that allows for constant medical appointments due to ailments that occur because of you are now immune suppresses, and the drugs that allowed that to happen have serious complications. Do I regret my choice? I really could not say. Yes, I felt better on dialysis, but for how long. Living each day as it comes is my motto now. Some good and some bad, but I'm hoping for more good ones to outlay the bad. Bit what I have discovered that doctors do not communicate with each other and there are some good ones who make you better and some bad ones that do just the opposite and definitely do not follow the motto First Do No Harm. And if you want to bring those bad doctors to account, you have to have another doctor willing to speak out. It's not going to happen.
Exactly as far as the doctors go! You also clearly articulate why we need to remember that transplants are not cures, they are treatments for CKD. The medical appointments are unending. I’ve become very proactive regarding who will be on my medical team long term at this point specifically to assure they will both listen to me and work with each other. It is beginning to calm down with the logistics of all of this. I’m 24 months post transplant at this point.
Yes I was on pd for two years then 4 on Haemo and you are not wrong ! Haemo is exhausting thanks for sharing. Some Doctors are a job worth honestly I’ve told them so many times about medication interactions when they should be advising me!! I’m tired of it though honestly mentally exhausted.
I am so so sorry to hear you’re going through this. You are not alone. And unfortunately the rate of depression/anxiety in folks like us IS higher. I’m 38 and after 33 successful years I’m facing another transplant…despite all the infusions and medication changes and allergic reactions and trips to the ER from said infusions and the steroids the anemia and the tiredness… we. go. on. Day by day. If you ever want to talk off this please feel free to reach out (dm). You will get through this even if it may not feel like it right now.
Oh no.. another transplant ? Did it fail? I’m sorry but wow you’re a warrior look at what you’ve been through already ! I hope you do not have to wait long. And thank you maybe I will dm you if that’s ok
Same here dialysis for 8 years, transplanted in 2020. I have steroid induced diabetes now and ulcerative colitis. I had sepsis twice from uti’s. Then after all of that I found out that after transplant the ones who are sexually active should take a preventative antibiotic, just one tablet after every time . No sepsis or uti’s since starting to do this. I don’t know how many people no this. But apart from that I have constant fatigue, it’s not a walk in the park for many but a lot of people presume you got a kidney so you must be cured which is not the case . Keep going and just do your best but I completely understand.
What’s the antibiotic called… surely they’d share this kind of information! I’m really happy that you aren’t getting anymore infections so so happy for you ! Dialysis gave me diabetes I believe such a shit my poor body our poor bodies ! Yes I get that a lot “ oh you’re normal now” but well done you
I know , I wasn’t told this at the beginning either. I found out by accident in my consultants office . I think it can be any antibiotic. I have Clavmel (amoxicillin) . I always have a box in the house. Take one tablet straight after and the usual things and the infections have stayed away 🤞yep my body’s been through the mill ! It surprises me that it’s still going. I’ve said il excercise more this year and see if it helps my body and mind .
Yep just adding that after 6 UTIs in one year I’m on prophylactic antibiotics as needed. I take macrobid. But was never told this until that year where I ran into problems
It’s crazy isn’t it , they wait until something happens then say oh yeah you should be doing this or that. I’ll never understand it. I know they don’t want to overwhelm you when leaving the hospital with your new kidney but heads up on some things are essential.
Thank you for start bringing sex into the conversation. Since I never had mono in my early years and have only been with one person for many years, I have had fears about starting a relationship with someone new. Which is odd you would think such a simple infection is so terrifyingly. Am I the only one?
You’re right it’s not talked about enough. Yes that little infection can kill you so it is terrifying. Since I got sepsis twice I have a whole ritual after sex, it’s not very romantic 😂but it’s working so far. Don’t be afraid to meet someone new , life is for living . The right one will understand .
it is very understandable. This is a very very hard life we lead. Please seek professional help. There’s nothing wrong with admitting you need it because if it’s affecting your whole life, you do.
Since your name includes dog lover, do you have one? If so tells us about that dog. The reason I ask is that as others have demonstrated there is so much more about than our illness. On this forum we fail to really learn who others really are. We do not need names or addresses we needed that which makes us happy or special. If you can share, thank you.
you are very right !! We are much more than an illness. Indeed I have a dog! I have an American Akita. Funnily it’s his birthday today he turned 13 years old! He is my pride and joy and oh my goodness does he make me happy my heart fills with joy and a homely feeling when I see and hear him running towards me!. How about you guys ? Any pets ? X
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Fairly new to all this...
Nausea/Stomach Post-transplant 
New to this group 
Overwhelmed 
8 months strong😛
