Kidney disease

[apollo42838]

Hi there. Just read your story and sounded slightly similar to my own. I am 27 years old and my GFR is at about 26%. Putting me at stage 4 kidney disease. I feel like we are at such a transitional time in our lives that this news is devasting. I can feel your pain. I’m living with my boyfriend who we’ve been talking about settling down, having kids one day ect. Now hearing there won’t be a way for me to have kids safely without a new kidney. Not only that but insurance won’t cover a transplant unless you are below 20%… it’s like I have to wait to get more sick. I found out I had this because of my severe migraines and high blood pressure. I would also consume alcohol and the next day I’d feel as if I were dying. I’m really struggling to cope with my life having to change… how are you doing with that? It sounds so minimal but going to social events and not being able to drink alcohol… is awful. My boyfriend has been very supportive but he drinks quite often and I was kind of hoping he would slow down for me… but didn’t want to ask also? Not sure he knows how much it bothers me. Alcohol shouldn’t be an issue but I was a bartender prior to this… and I know it’s not great to say but alcohol was a huge part of my life. Now even if I have a glass of wine I get a headache. I just want a new kidney and a normal life but here I am having to wait to get worse… is that what the doctors told you too? Please reach out if you need to talk…. I can be here as a support system if you need.

[apollo42838]

Meant to write this to someone…. Oops can you tell I’m new at this?

[Sammi_n_Munk in reply to apollo42838]

Lol! 😂 Don’t worry about that. I’ve been there and done that many times myself. Believe me! Lol! 😊👍

[Michael__S]

I am at a much earlier stage, never been a social bee nor a big drinker except few times a year and not being able to drink as before still rank in 2nd or 3rd position on how it affected my quality of life. 1st is the lower endurance and energy level, it's slowly improving as I am putting lots of effort on it but it still rank 1st.

It shocked my life too, again despite everything happening at a much earlier stage. The thing that helped me the most was to hit the reset button and accepting that this is where I am right now and set myself some goals and look at things I can control to improve my situation. It might sound all shiny and perfect but trust me, it's not. But the effort adds up and I was able to improve my quality of life. Some of it took 3-4 months to show concrete positive result, it takes time to relearn how to live my life.

I've been shocked too to discover that not everyone in my surrounding was equally helpful or supportive. One was a close family member and I prefer not to say which one. One thing that Covid taught me was the influence that my environment can have on me; lets just say that I am not looking to see or talk to that person as often as I used to. Some coworker are just a lost cause while others were surprisingly receptive. Glad to hear that your boyfriend have been very supportive!

I don't know if it could work for you but did you tried kombucha or kefir? While I have never gotten drunk on any of these and it's probably not advisable to let them ferment to 3% (i.e. way too long). It might be something that you can digest and either of them can be done inexpensively at home, it might become a fun project too. Have a look on youtube or blogs, combination are nearly limitless. Just do your research before using certain herbs or berry that might not be recommended. Like rose hips for example. A few more here kidney.org/atoz/content/her...

Cheers.

[apollo42838 in reply to Michael__S]

Kombucha is a great recommendation. I actually forgot about it completely and do enjoy it. Reading these makes me realize I need to be more positive and like you have said.. accept the reality for the situation. I’ve read different articles about improving your GFR with diet changes. I’ve cut out a majority of my protein and am trying to consume a lot of fruits and veggies. I’ve got my butt back to the gym to try and help with my energy levels. I don’t want to believe it have a disease… but I do. And I need to come to terms with that. So thank you! If you need anything reach out.

[Calen179]

Thank you for your message. I actually skipped all the percentage tracking and went straight to "another few days and you would have died!"I told work I might be a little late one day, then ended up admitted to the hospital and had to quit my job...

My wife just lost her mom and was never very good with medical stuff. I'm living with my parents now and she has made it clear I can't come home until I get a transplant, which makes me feel very alone through the whole process.

I'm new to this group but I think it will help all of us with somewhere to talk and have people understand.

As for drinking, I never was a huge drinker, but certainly going to zero (and no dark sodas either) was jarring. It's funny, my wife never drank until recently, and my two daughters just turned 21, so I am the stick in the mud.

I wish you luck with your journey. Keep me posted as you hear news.

[sbrenn01]

I absolutely understand the notion that "I'm sick, but not sick enough for treatment". It makes no sense to me. I'm 63, and I've been dealing also with Crohn's disease for 40 years. They tried different medications as soon as I started to show symptoms. It is baffling. I think transplants are for the sickest; you might have to be on dialysis first. If your abdomen is in good shape, ie no surgeries, you could do peritoneal dialysis. But you're a long way from any treatment until your gfr is 15 or below. Now I don't mean to be a downer, but I don't drink. Aside from not liking it, I'm aware that it is essentially poison:

time.com/5376552/how-much-a...

I understand there is a compelling social force to drink. Perhaps you could substitute ginger ale or juice when you're in a social situation? You can be candid too: "I can't drink anymore because I have kidney disease". I'm not trying to tell you what to do. But it's hard on your body's organs. Your body functions might improve if you stop drinking. It can't hurt to stop for a few weeks and get more labwork. Again, I'm not trying to preach, just thinking of ways to improve your health. Hang in there, you're young and strong! 💪💪

[apollo42838 in reply to sbrenn01]

I’ve been doing sparkling water and it definitely helps. I just need to come to terms with I may not be able to live the average life of a 27 year old. But I’m feeling more positive today. These life changes I have made would benefit anyone. It doesn’t hurt to just be more healthy right? Thank you for your response. I wish you happiness and health. I’m not sure what Crohn’s disease entails but you sound strong! If you need someone to chat to I am here.

[Sophiebun11]

Has your Dr. checked your migraine meds? My migraine meds were toxic to my kidneys. I was Stage 4. Now that my Dr. switched a few migraine meds I am up to 3B.

I quit drinking when I was 25 because alcohol triggers my migraines, even smelling alcohol on someone else gives me a migraine.

Many migraine preventatives are bad for the kidneys. Ask your Neph and Neuro about your migraine meds to improve your kidney function rather than seeing this as waiting for things to get worse so you can have a transplant.

Best of luck

[tas1kubra]

Hello apollo42838

I am really sorry to hear that what you have been going through. I am 29 years old, and currently in 3B. I don’t have migraine, but married for 9 months and the hardest part for me was the truth about not being able to have a child. So believe me, I understand what you are feeling.

I would like to ask that do you have a diagnosis? As far as I know, if the high blood pressure is the reason of your kidney disease, you have some damages on your eyes as well (does not mean that you can’t see, just means that high blood pressure affected blood vessels on your eyes, ans it is beneficial for diagnosis on your kidney disease). So I think the key here is the diagnosis. So that you and your doctor can work on a treatment plan.

I was in the same thoughts as you have couple of weeks ago. I just wanted to have a transplant and move on with my life (I also enjoy alcohol as well, and its hard for me not being able to enjoy a glass of wine). But you should also keep on mind that after transplantation it is a different life, too. You will be using medications again, and there might be a chance of organ rejection, too. So I have been told that, its the best to keep your kidney as long as possible. You can see a lot of people in this platform, having eGFR lower than 20, but still hanging without dialysis or transplantation. Its hard. Definitely hard. But I think human nature always focuses on surviving.

To sum up... give yourself time to adjust this news. It will take some time, I spend some nights crying in my husband’s shoulder, telling him I don’t want to die. There will be ups and downs. But afterwards there comes a point that you focus on the possibilities. Just please know that it takes time. Everyone’s journey is unique. Your disease, symptoms, medications and your body’s response might be different than others. You just take a deep breath, talk with other CKD patients. Also you can look at my posts and wonderful responses from many different patients.

I am here whenever you want to talk, or ask a question. Just send me a message.

[apollo42838 in reply to tas1kubra]

Thank you for your response. My specialist knows I have kidney disease but they are unsure on the cause. I was told we cannot do a biopsy because my kidneys are too small and it would be dangerous. My specialist seems to be leaning towards the cause being because I was born premature. I haven't had an issue with my eyes and ive gotten my blood pressure under control once I changed up my diet and stopped taking my migraine / pain meds. I feel your pain with not being able to have a child. I was finally getting to a point in my life where I thought I was ready. Even looking up adoption options they make it pretty difficult for you, espiecially if you have kidney disease. So that worries me too. How long have you known you have had kidney disease? And how are youControlling your systems? Or do you not have any at the moment? Thank you for reaching out. It does help to talk to people who have been through similar situations.

[tas1kubra in reply to apollo42838]

Hello again.

I know that I have CKD for a month now. 5 years ago a doctor had diagnosed that I had proteinuria, but did not make any analysis and probably I was in the stage 1 or 2 back than. Since proteinuria did not treated, it brought me level 3B.

I do not have a symptom so far. I visited the hospital only for a check up, since I was about to move to Denmark. That day we found out that I am in a critical level, and got hospitalized immediately.

Doctors ran a lot of tests in order to understand the cause of the disease. Of course nothing specific came out, and they asked me to have a biopsy for the root cause. All of these was 1 month ago, I stayed at the hospital 4 days back then. They gave me a date for biopsy and send me home.

Last week on Monday, again they hospitalized me for the biopsy. But some tests showed that I might have infection, which prevents the biopsy. Until Thursday they made sure that I had no infection and performed biopsy. And the nightmare started

Doctors told me that it would be dangerous for me, since the disease has damaged my kidney. But to understand the root cause and discuss any kind of treatment, they told me that this is necessary. Of course one of the few side effects came through and I had bleeding. I am doing nothing but lying down since Thursday. Thank god bleeding did not continue, and they chose to wait instead of operating me. I think I will be in the hospital for this week, too. Because internal bleedings do not recover fast.

Anyways. This is my journey. What is your level if proteinuria? Also creatinine, and BUN levels? These are also important in this disease.

For the child issue... I guess there is nothing but leaving it up to the fate. I know there are people who gave birth to a child with CKD. But again, everyone’s journey is unique

[fartikins]

Hello - How true this is - I am at the other end of the spectrum having just retired and was looking forward to some quality time with my husband. Now its a completely different mind set.

[fartikins]

Oh gosh - that is very young to. have ckf. .

[Irelandy]

Hi Apollo , I'm at stage 5 and waiting for a transplant. The decline is inevitable but isn't so bad you will experience extreme tiredness but that can be managed. Just don't panic accept it and be positive about the future.You will be OK.

[tonyng42]

I am on stage 3a, but what is it about alcohol/wine that affects you? I guess it will eventually affect me too...

[Sammi_n_Munk]

Hi apollo42838! I’m sorry you’re going through so much distress. Has your medical team / renal dieticians made any changes to your diet? Have they reviewed any medications you may be taking (including over-the-counter pain meds such as Advil, Motrin, Aleve, and Aspirin)? These anti-inflammatory types are very damaging to the kidneys and if you’re taking any of these, switch to Tylenol for pain relief (unless you’re allergic to it, or have any liver issues).

Also, going to the gym is always a great idea, but try to stick with cardio rather than any type of heavy weight-lifting. That type of exercise can raise creatinine levels. You may already be aware of all this, so I apologize to you if I’m just reiterating here. Lol!

Fruits and veggies are awesome for us. In fact, it should make up most of our daily diet. We just need to be careful of the ones that tend to be high in potassium (speak to your renal dietician about this. It can differ with everyone depending on your levels - mine are high - what else is new, huh?! Lol).

Also speak to your doctor about your daily water consumption. I’ve heard time and again in this forum that it’s very important to be taking in a proper amount of water daily as it aids in improving our eGFR levels.

I hope you will find some of this helpful. My CKD happened as a result of type 2 diabetes, uncontrolled high blood pressure and advanced sleep apnea. These also damaged my heart and lungs as well, but I’m 52 years old (was 38 when I was diagnosed). You are such a young woman with your whole life ahead of you. With a few dietary and life adjustments, you have many, many years of good health to enjoy, and to have the family you dream of.

I wish you all the best. If you ever need support, you have certainly found the best place to get it. This community is full of knowledgeable, wise and compassionate people who are always here for you as well! God bless. 😊👍🙏

PS: Sorry for the miles-long post! 😂😂