Hi, I just found out yesterday that I have to get a kidney transplant and I've been really depressed and have cried a few times. My question is...am I overreacting? I feel like I am but I can't help it. Is it just that I'm in shock maybe? Were any of you depressed when you found out? I guess I'm just scared and can't believe this is happening.
Is depression normal for kidney transpla... - Kidney Transplant
No I don't think you are overreacting at all. This is completely normal. When I was diagnosed with stage 4 CKD three years ago I became very depressed. It is constantly on my mind and as each subsequent blood test shows my kidney function falling all the time this has just increased my depression. I tried to bottle it all up and then 18 months after diagnosis I just burst into tears while at work. I am currently at 12% eGFR and I cant imagine myself on dialysis so like you I am scared of the unknown. If you google the "grief curve diagram" I bet you will relate to it. I certainly do. For me its like snakes and ladders. I have good days and I move up a bit then every time I lose another bit of my kidney function it is like starting all over again. But help is at hand. One of the things that I find has been the best support for me is this forum. It is full of people like us and they are all good people who have provided support and advice when I needed it most and they will do the same for you. So stay in touch, you are not alone.
Sorry to hear about your low GFR, mine is at 17. I dread dialysis as well so I feel for you. I will definitely take a look at that grief curve diagram and I'll keep coming back to this forum too. Thanks for taking the time to answer me back, I appreciate it. Good luck!
I too was shocked when I found out about my stage 4 kidney condition in March 2017. My function at the time was 17%. I worked with my regular Dr, my nephrologist and my dietician. You do go through a lot of emotions. I think the best advice I got was from my nephrologist who said this is just another chapter in your story. I was lucky as I got on to The Transplant team at Banner Hospital. You do go through a lot of hoops with testing but I just had faith and stayed positive. I knew I did not want to get on dialysis. I know it has helped a lot of people but I wasn’t ready to give up to live my life that way. My plant based diet is what helped me. I think the worst is the tired feeling! Being a couch potato was ok but I knew I had to stay active! I even gave up a kidney because I was going on a cruise with the Property Brothers from HGTV and couldn’t get my money back! I knew it was a risk but I never ate, slept and exercised better which improved my kidney function. Two months later I got the call. I never had any pain after the surgery but when I got to my room I saw a double rainbow in my view with the mountains! I knew I was going to be ok. I was no longer on a lot of medications to which I was stunned! When I found this forum I was so happy. I even met another transplant while getting my bloodwork done. My function was at 12%, hers was 6% and she did not go on dialysis. Just stay positive...
My nephrologist has never mentioned anything about me seeing a dietician but I've seen a lot of people with kidney disease say they see one so I wonder why he hasn't suggested it. Do you think I should be seeing one? I Iike the thought of this being just another chapter of my story. That's really cool that you got to go on a cruise with the Property Brothers and got to see a double rainbow! Awesome!! This forum is great and I'm really happy I found it too!
My nephrologist is hopeless and has never suggested seeing a dietician or anything to slow down the progression. I too have read on here about good support from health professionals and people being treated with steroids and other medication to slow down the progression but that has not been my experience. I have learned more from this forum than I have ever been told by my doctor which is a sad state of affairs.
I actually really like my nephrologist and he has me on prednisone and losartan but I do wish he would have me see a dietician so my insurance would pay for it. I'm surprised your doctor doesn't have you on steroids though. Can you switch to another nephrologist?
I have changed docs once already and all the new one wanted was to put me on dialysis straight away (I am at about 10% eGFR) and said it was too late for steroids to help but why they didn't put me on them when I had 21% I do not know. I am in the UK and I have to say (and yes I know some people are going to disagree with me) that the standard of medical care in my experience is low. I have never been given anything and have now had to give up working as I feel so rough. Nobody cares. It's a free service so they treat you like a number. There is no accountability.
I'm really sorry to hear that. I'm not sure if that's true or not about it being too late. I hate that they are not more compassionate and helpful and that you have had such a bad experience. I wish you the best.
Like rabbit01 says we all have are highs and lows and your still in shock. Have they told you what your egfr is. Is this the first time you've know you have kidney problems.
I was first diagnosed 18hears ago although I was born with it and was told I would need a transplant in 2009 or dialysis. This still hasn't happened a d like you I was shocked and couldn't believe it was happening but I decided I was going to stay strong and not let this disease take over my life as I was only 20 at the time and had so much i want to do. If you've been newly diagnosed ask to see a kidney dietican as diet, exercise, the right medication and positive attitude I turkey believe you can delay things.
At the moment known of this seems possible and you have to let your self get upset and grief and be angry and think why me it natural.
There are always high and lows with the disease and for each milestone (this is what I call them-not good ones either) yu have to let your self get upset but everyone on this forum are here for you to help and to be a shoulder to cry on so to speak.
Everyone on here is always will to help and I've made so great friends which have supported me throughout times and don't know what I would have done with out them. This forum allows you to message people privately too. So you have that option when you think you've found someone that to want to start a friendship with as you like the support they other.
Don't ever go through the unknown alone as there is bound to be some one going or has gone through the same.
Maybe the doctor said about a transplant because he is hoping you could have a live transplant from a family member or friend and the work up takes about 12 to months 18months so was trying to be proactive bit all it's done is scare and cause your low mood which is only natural.
Take care and don't walk this journey alone.
My GFR is 17 and I'm 45 and just found out my kidneys are failing about 6 months ago. My GFR started out at 20. I'm glad to hear it takes so long to get it done, that'll help give me time to get used to the idea. I can't imagine having to go through this at a young age like you had to and to have to deal with it for so long, I really hate to hear that. I wish you the best.
I am still not had a transplant as my love donors didn't work out and still not on dialysis but that might change as of tomorrow. My renal function was stable at gfr7.5% but in the last 3 weeks it's dropped all of a sudden to 4% so unless things have really improved I will be starting dialsys.
I think your doctor was probably just try to prepare you that a transplant will be required bit you are still in stage 4 so plenty of time. I have always listen to my doctor and renal dietican and I have to say I follow what they say to the letter and truly believe that is what has got me this far. The joke is I'm the come back queen in my unit and a friend from the forum also said a similar thing recently.
Stay strong. The unknown is the scary part of the disease so try and learn as much as you can. I hope you have a good renal unit. Never be scared to ask them questions and of you don't feel comfortable to do that ask the people on the forum. Of course we are not doctors but we might be able to offer some advice which you can the ask your doctor. Everyone's restrictions are very different so never follow someone else's before speaking to your doctor. Sorry if that sounds obvious but you would be surprised how many think one size fits all.
Thanks for your kind words but I won't let this disease beat me it's going to take me kicking and screaming. I'm stubborn like that.
Take care mindy73
Hi, sorry I just now saw your response. Do you mind me asking how your doctor appointment went? Are you going on dialysis?
Thank you for asking. The appointment went well thank you. I had my ferritin injection and re-started my epo injections and because I had lost 2.5kilos over the weekend and they re-xrayed my chest they could see my lungs have no longer have fluid on them but still very much on my legs he's goes my diuretic to 590mg spilt into two doses (huge amount I know) fluid restriction cut to 550mls and we are doing this to next Wednesday. If this doesn't help then I will be starting dialysis. I saw the anaesthetic doctor and he has explained I will probably end up in intensive care once I get my transplant die to my low blood pressure.
How are you feeling now? I hope people responses have helped a little so you know your not alone in what your going through.
When I found out my GFR was 17 I too was shocked. Seemed my high BP was the cause of my kidney condition . Two years later I had my kidney transplant! I stopped eating meat and dairy and read tons of books. Stay positive and drink water. I try to drink 2-3 liters a day. The emotions we go through are up and down. I try to stay active....I wish the best for you!
I try to drink a lot of water as well and I've been working on being more active but I don't think I can give up meat and dairy. They actually put my transplant evaluation on hold because I have depression and anxiety issues and they wanted me to start seeing a therapist and get on medication first which I have done. So, I will start the process again in a month or two. I was really surprised how much was entailled in the transplant process. I had to talk to several people including a pharmacist and a social worker. I have 2 pet birds which the social worker told me I have to get rid of before they will even consider me, which surprised me. They told me I couldn't have more than 3 cats, which is fine cause I wouldn't want more than 3 anyway and I can't clean the litter box, which is more than fine with me. Just a lot of things I had no idea about when it comes to transplants. Was the place you went to like that?
When I was going to my kidney education classes, they really emphasized sterile conditions. Pet dander, cat hair, etc was ok as long as the pet did not enter the room. I remember a woman commenting on how her cat sleeps with her. Some habits are hard to break ...you do realize that when kidneys are damaged it is very hard on them which is why no meat, no dairy. A dietitian will help you with your labs and explain the results...you also have to watch phosphorus,protein, sodium, and potassium. I found a meal company that has prepared meals which are plant based called Veestro. The pad Thai was great! Have you ever eaten vegetable lasagna or a veggie burger? I remember when I talked to the transplant team I too talked with a nurse, social worker, dietician, the DR,etc...I did everything they asked and my prayers were answered. Try not to worry... God has a plan...we are all here for you!
I didn't know that diet was that important. Maybe I'll talk to my doctor on my next appointment and see what he says. Thanks for the advice! It's greatly appreciated!!
It must be a UK thing to limit cats to three! ,I can't imagine having to rehome my fur babies!
Oh no you’re not over reacting at all. This diagnosis changes your life and can be very scary until you know all the facts and even then it can be tough. I was on dialysis for ten years before I got my transplant as I had no family or friends eligible. Dialysis can be difficult to get used to, but you have to think positively and not let it take over your life. With some adjustments you can continue to live your life pretty much the same, I always did, and there are several options for dialysis and you can decide which works best for you. You just hang in there, you’ll make it!!
Mindy 73, it made me sad and somewhat depressed when I found out the same. However, getting thevtransplant certainly beats the alternative; dialysis or illness resulting in death. I am 3 yrs post transplant and basically doing everything I did before the surgery. I really didn’t get too I’ll before the transplant and I think that has helped me to recover as great as I did. Go for it, the sooner the better and start enjoying your life. Best of luck and prayers to you.
Thank you. I agree that it would be better to get it done before I get sick and it is definitely better than the alternatives for sure.
Hearing that you will need a transplant is scary to hear. It’s okay to feel sad. Not knowing what to expect, how soon you will need it and so many other unanswered questions take a toll on your emotions. Have faith that all will turn out well. We are here to help you through your journey.
hey there! Here's a little about my background and being diagnosed and having being transplanted. I was first diagnosed at 13 with total kidney failure, with that news being heard at 13 i was very upset. I remember being put on Prozac for the depression, but thankfully my mom had me taken off it shortly after she could see i had no reaction to anything!! Having a good support system helped me a lot. I had gotten my transplant when I was 16, but it failed shortly after when I was 21. I'm now 29, and just had my second and probably last transplant 2 years ago in august. I think about the life expectancy of a deceased kidney, ( the kind I received) and it gets me down knowing that Ill probably end up on dialysis again when I'm older but I just take each day at a time. Having health issues is probably the hardest thing about life, its unavoidable. but how you react to certain situations will determine how your happiness will play out. and I'm sorry that you have to go through this also, no should ever have to have a kidney transplant. But we do not live in a perfect world, and we do. luckily we have the technology and dr's to perform these surgeries. Prayers for you, and hoping you stay positive. oh and cry!!! cry! cry! LOL its good for you, just don't dwell. and have HOPE!! <3
Thank you so much. I agree, crying usually makes me feel better. I cannot even imagine going through this at 13 and 16 yrs old, I feel very fortunate that it happened to me as an adult, I'm sorry you had to go through that. Good luck with your kidneys and hopefully you will go a long time without dialysis.
My Dr told me it’s just another chapter in our life. You do go through many adjustments but I can tell you you will feel so much better after the transplant. When I got admitted to my room I saw a double rainbow! I knew I was in good hands!
Of course you’re going to be upset and depressed about it. I was only 8 when I found out and had my transplant at the age of 10 so I can’t exactly remember how I felt but I know in the future I will need another transplant and the older I get the more I worry and become down about it but the doctors and nurses are amazing and offer so much support. I just see it as a chapter in my life that made me into the person I am today and a story to tell. You’ll come out 10 times stronger than you ever were, keep your head high
How are you doing now?
Just reading your post.....
I'm doing great. I didn't care for the first place I went to so I'm trying another one out but I'm still waiting to hear from them. I'm not depressed about it anymore, I think it was just the initial shock of it but it's still a little scary. Thanks for asking.