My journey with kidney disease started when I was born when I had a bilateral reflux that damaged a little bit of both my kidneys. I had a surgery to fix that and everything went on well until I was 17 when I got diagnosed with CKD because of protien leak and after close monitoring confirmed that I had FSGS. I am 27 now, have moved to stage 4 with GFR ranging from 24-27. My doc has said he will transfer me to the transplant center if I hit 20. I know that soon enough I will be getting ready for a transplant. This has shook me to my core now. My girlfriend broke up with me when I confined my diagnosis with her as she also got scared which is understandable. Ever since, I have been scared and whether I will be to have a family and lead a normal life like others with the exception that I take medication. Has anyone had this feeling of scared to death about life? I have been constantly worrying lately and it would really helpful if you guys could suggest what you all have done in situations like this.
Sorry for the rant. Hoping to hear your inputs and just wanted to introduce myself to this great community.
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sujay1991
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Welcome to the forum! Going through CKD into ESRD is definitely a scary experience for all involved. Have you considered talking to a counselor? Managing your mental health is just as important as managing your physical health as well! Being on this forum is definitely a good start. I too struggled with wondering if I would lead a normal life once I progressed to stage 4 CKD in 2017 (I was born with CKD and went into kidney failure at 20, I'm 21 now); being chronically ill and getting worse as time went on was hard to swallow, but I personally tried to find little things that were considered normal that I did regularly, like going to the store, spending time with friends and family and finding hobbies that I could tweak as my CKD progressed. It really helped, especially when I had to stop working and going to school. I was also open about my struggles with loved ones. Having a support system is important, and they can't help you if you don't let them! Also, just taking a step back to breathe is important! It can be hard to do, but taking a breath, acknowledging your feelings and deciding if you wish to further pursue these feelings can give you a different perspective.
To give you peace of mind, just because you have CKD doesn't mean you can't lead a normal life! Many people with CKD work and have families. I'm so sorry that your girlfriend broke up with you in your time of need, but you will find someone who is willing and able to be your partner in battling CKD and ESRD. It's an unfortunate outcome that happened, but you deserve and will find someone better! If you are concerned about your ability to have a family, talking to a doctor about your concerns might also ease your mind.
I just opened up to my family and close friends and my brother has been really helpful in helping me deal with this. He also suggested I go see a counselor so that I can get my mental peace back. This might be the stupidest thing I have said but the reason I am holding back on meeting a counselor is that, how will my counselor understand ckd and the pain that comes with it. I dont want my counselor to give me generic advice. I like to be more practical and thats why this forum has been so useful where I can see the real situations people have been in and made me feel a little less different than others.
Again, this might sound silly but I guess this is the perfect place for me to vent out.It is the fear of the unknown's that even after a transplant what if something happens to me. I do not want to hurt my partner in anyway and I would be so distraught if in the future because of my conditions I am not able to take care of my kid or something.
Also, it looks like your path has been very similar to mine. Did you get a transplant or are you doing dialysis? Hope you are feeling better. Your comment was very encouraging. Lastly, Stay KidneyStrong.
I'm currently on Dialysis (doing Perotineal) and I'm having my transplant this week actually! I'll be doing an update on it after the surgery happens, so stay tuned lol.
I started seeing a counselor through my insurance when I was 17 and a senior in high school. I was skeptical at first, because like you, I wanted practical advice from someone who "got" me. It took me a while to realize that nobody will ever completely get what we go through. Our experiences are so individualized, and we proceed and process similar events in so many different ways it's insane. It doesn't even cover other potential health issues that could be in the mix. My counselor told me once that she will never completely understand what I've been through, and that's okay. It won't take away the validity of how I feel, or how I think about certain things. It doesn't make it any less real. I've personally been able to talk about things with my counselor that I have yet to talk to loved ones about, because she only tries to understand enough to help me through whatever I'm working on that day. It's nice to have someone who can take an outside perspective on things. Of course you'll have the usual advice, but a great counselor is one who tailors tools to you and works with you to tackle problems that you may not be able to talk to loved ones about.
Sorry it's super wordy! Of course, if you don't believe counseling is the best for you, it's totally okay! I hope my experience helps you figure it out. You only get what you put into it, and you might need to counselor hop until you find the right one, but it could be worth a shot.
This is why I love this community. Your reply was the best thing I have heard because I can “almost” clearly see what you went through. I think I am going to give it a shot. Thanks for all the help.
Also, getting a transplant this week ? That is amazing. Congratulations. I will wait for your post after transplant.
I just wrote a great long reply but suddenly lost it so I will try my best to remember. If you have been on this forum you may know me but in general I have had 2 kidney transplants both were from 2 young men and both of them were about 19. My first transplant was in 1978. A transplant was still in its experimental stages. I was 14 and very sick. I got back to back rejections and they treated me first with radiation and second with an IV called OKT3. My surgeon did not think the kidney would last and I begged my dad to not let them take it or even do a biopsy. Needles scared the heck out of me! In summary, the kidney lasted me 23 years!! I had 4 children and 2 of them were twins. I got real sick and lost the kidney in 2001 went back on dialysis and on Thanksgiving weekend got my second transplant.
I understand your hopelessness at the time of my second transplant I had twins and I was single and they were only 5.
What saved me from my fear were my past experiences. I was really sick before my second transplant. I wanted to die despite my young babies. I was at bottom and it was Thanksgiving weekend. I cried and cried and then remembered I needed to get a pen and piece of paper and start a gratitude list which I wasn't really feeling but I was so upset and mostly scared to death. I didn't know if I could but my first thing was I was grateful to have a fork to eat with...that's how it started and then a wave took over me and I wrote like 30 things down and finally felt some peace and went to bed. The next morning at about 4am I got a call and that is right there was a kidney for me and not only that it was a perfect match (non-living donor)
Do not lose hope! Write a gratitude list even if you don't feel like it. I didn't I started my list being grateful I had a damn spoon and then a fork and then I don't know what happened but my hand just started writing and writing with gratitude and things I had that others somewhere did not. I swear to you the next morning 1 day before Thanksgiving I got the call at 9am A MATCH, no a perfect MATCH!!! That was 17 years ago. Please don't lose hope. Sometimes we need to just take this one minute at a time and have FAITH!! Good luck and keep us informed!
That is so amazing. I have been seeing your posts and you are truly an inspiration for people like me. Hopefully I will turn out like you and nothing will happen. Thank you so much for those kind words and ideas. It really helps seeing stuff like this. Again thank you so much. Cheers to many more years of healthy kidneys. 😀
Hi Sujay! Your situation seems very similar to mine. I was diagnosed with FSGS when I was 18. I am now 32 and hit the GFR 20 two months ago. My first appointment with the transplant program is 1/25! It is very scary, and I think it is healthy to acknowledge that. And it stinks! What has helped is allowing myself to feel the emotions. Only after I have felt them am I able to move forward.
Don't give up hope that you will still have a wonderful and fulfilling life. My husband and I are also in the middle of the adoption process right now! Our mindset is that we are going to do everything the same way we would have, regardless of the the kidney disease. Now, if we don't have a placement when it comes time to schedule the transplant we will push pause on the adoption. But until then, we are taking it one day at a time. We are blessed to have a wonderful support system in our family and friends. I hope that you will find that as well. I did worry that I would ever find someone to share my life with given the health challenges. The right person will come along and not even blink an eye.
Have you looked into the NKF Peers Support Program?
Wow. Your story is exactly similar to mine. I am trying to hold onto all the hope that I can muster up. I am just hoping that there will be light at the end of the tunnel. Coz all I have is hope . And yes I have connected with a peer mentor. He has been really helpful as well. Thanks for the kind words.
And you have your first transplant meeting coming up ? That’s amazing. All the best for the process. All the very best with the transplant. Let us all know how it goes.
My story is different. I have PKD. It never got bad for mom or grandma. But, my nephrologist has been tracking my kidney function, and told me last July to start the transplant process. It begins with getting checked out at the transplant center. The people there are supportive and can give you the updated medical information. I got onto the list quickly, as lots of my tests were up to date and my kidneys are the main culprit in my health issues.
All the doctors say a living donor is the best way to go, but you have to find a willing volunteer. The transplant center can arrange a donor with a genetic match, as long your donor is willing and cleared to donate. They really test the donors to make sure they are good to go on one kidney.
This is a big thing to ask for, but it really makes a difference in the long-term outcome, so grit your teeth and ask. I asked at my church, and I have been blessed with a donor. He is even a genetic match. We are looking at early next month for the transplant.
There's a lot to do and a lot to learn about all this. The transplant center can help and the info from the NKF website can help too.
Yea I have also been following up on my medical information and all my labs are up to date. My nephrologist hasn’t asked me to get ready yet but I just wanted to prepare myself for when the time comes . Seeing all your comments really motivates me. I used to think that everything was my fault and used to feel so different but seeing your replies all I can see is I am not alone. Thank you dexterlab and congrats on the match. I will keep you in my thoughts for the transplant. Cheers to speedy recovery.
Hi my name is Dave 56-year-old male I was diagnosed with CKD8 years ago my girlfriend broke up with me and I pretty well was scared to death pardon the pun 😛 but I stuck it out was on dialysis for seven years and I got my kidney transplant eight months ago I’m still scared to death but take it one day at a time and never give up if you have any questions don’t hesitate to ask 😛
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