Just Joined, feeling alone...

[Dustypye]

Hello. I just joined this forum. I'm 45 years old and Stage 4. I was born with only one kidney (not in the right place either) and it's down to 18%. I've been on the transplant list for 7 months. My wife is wanting to donate to me as well. I've been dealing with this for two years now. I honestly can't remember a time when I wasn't completely exhausted. I'm always tired, always sore and achy. And now my memory is starting to go. By Wed. my mind is worn out and I forget things and make mistakes. I'm also cold all the time.

I've dealt with a tremendous amount of anxiety, fear and sadness because of this. What sucks the most is that people can't just look at us and tell how sick we are. Save for weight loss, I look the same, but I feel horrible. My wife and father have been great. My best friend and brother are trying to understand. My employer and co-workers however have been incredibly cold and unsympathetic to me. They've made no effort to understand or even inquire how I feel. I actually feel like I'm being targeting by my boss who has tried his best to create a hostile environment. It's frustrating because I'm not myself and I'm being kicked when I'm down.

Early on in my diagnosis I reached out to other CKD folks through social media, but it scared me and I stopped. However, reading some of these posts has literally made me cry. Just seeing that there are others out there who are dealing with the same challenges and symptoms that I am...it's made me feel less alone. I literally stayed up last night reading stuff until I couldn't keep my eyes open any more.

Besides the unknown and the waiting, the hardest part of all of this has been the feeling of loneliness and isolation. For one day, I wish I could look as bad as I feel so maybe people would understand what I'm going through. How hard it is for me to even stand for long periods of time. I work in nonprofit development, so I have some long days and it's tough. My employer has made no adjustments or concessions for me at all.

It may sound strange, but, I keep thinking I just have to wait for the "other guy." I'm not myself any more. But, I know on the other side of the transplant, there's another me waiting. One that has energy and is sharper and stronger. I just have to hold on until he gets here.

[Nutbrownhare]

Hi

Firstly you are not alone, I totally understand that you can feel like that at times, because you don't tend to meet other people day to day in the same position.

I have double duplex of the kidneys and am down to 41%, which I know is somewhat different to yourself. However because of the duplex I get renal infections all the time. Before I went on permanent antibiotics, like you I felt clumsy and too tired to think. Even with the antibiotics I still get really cold and always wear a layer of some kind to keep warm.

I have just lost my job, but hid from my employers my kidney problems for fear of my job. I have found that since I've been at home I have so much more energy to devote to living rather than working. But of course we all still need money.

Could you talk to your employer, reduce hours or adjust your work load?

Try to focus on something that you have successfully done that day, no matter how small. Try using notes or a reminder on your phone to help you remember things. I too can get forgetful if I'm tired or having an infection breakthrough. A whiteboard in the kitchen for important things can help too, such as paying this or that bill.

When not working try to get some good rest and come on here to talk whenever you feel lonely. There are lots of understanding people here.

Best wishes

[Dustypye]

I'm in the U.S. They said that the wait for a deceased kidney could be up to two years. My wife hasn't been tested fully yet, thus my reason for switching hospitals.

[shaz53 in reply to Dustypye]

Hello Dustypye I'm 53 years old and Stage 4 CKD. I was born with only one kidney which I did not know until 9 years ago when I got a Bug and my kidney went down to 11% , that is when they found out I had a horseshoe kidney which was caused by Rubella syndrome before I was born

now my level is 22% and stable but they say it will get worse

I'm always tired, always sore and achy,me too

[Dixidude39]

Dustype, so sorry to read your story. I was 76 when my right kidney was removed due to TCC (transitional cell carcinoma). I'm in a cohort of about 5% of bladder cancer patients who develop this form of kidney cancer. My bladder was removed when I was 75. My eGFR is 27. As for a transplant, I have two friends involved in a "kidney chain." Bill G, age 50, donated one of his kidneys so that Bill W, age 72 could receive a kidney from a live donor. On "exchange day," 12 separate individuals (throughout the USA) participated in the exchange. I'm NOT an expert, but I'm guessing that at age 45, you would be best served by getting a kidney from a live donor. Perhaps your wife would be willing to participate in this type of exchange. If you live near a DaVita dialysis center, consider taking their 90 minute FREE "Kidney Smart" seminar. DaVita also provides a lot of FREE educational materials. Finally, check to see if you have a local kidney support group. I belong to one in Richmond, VA (where I live). They meet once a month, and usually have an expert present a 20-30 minute program. Best wishes!

[Frankie24]

I just recently joined the forum also, 57 yro female stage 4, gfr 21 with hereditary PKD, I hear your frustration, I am exhausted all the time and feel terrible over the past several months it seems. Like you said, no one can see how bad we feel. I tried talking to my shrink about it, she laughed and made me feel like I was being a drama queen ! That was the end of her ! Like you I feel alone, frustrated, and I am trying to figure everything out. I go to a great hospital in Boston, MA. and have a wonderful Doc. who is young and specializes in PKD and also does much research, yet I still feel like I am alone and so much to know and learn. I was in denial until about a year ago, though I have known about the illness for years, I am sorry that I went about my business pretending it wasn't there because I could have been working at preserving my kidney function. Anyhow good to hear from you. Glad to be here. Wish you the best.

[rabbit01]

You are not alone. This forum is very supportive.

I have late stage 4 CKD and was diagnosed at 18% eGFR about 2.5 years ago. The doctors cant find any reason for my CKD as I don't have high blood pressure, am not diabetic, have no history of kidney problems in my family and I am only 50. I had a chest infection which started in October 2014. I took prescription antibiotics and whilst the chest got better I began to feel quite sick and lost my appetite so I packed them up after about 6 days. I then got a metallic taste in my mouth and my legs were itchy at night and I generally felt run down. Things slowly returned to normal (or so I thought) but then a routine cholesterol check in April 2015 showed that I had stage 4 kidney disease. Since then I see the nephrologist every 4 months and have blood tests every two. My kidney function is gradually dropping.

[Hidden]

I understand. When I found out I was Stage 4, I about went out of mind. I NEVER felt that alone in my whole life!!! And I am shocked how doctors and most people act like I have Leprosy! After several months of mental torture, I now count on God for strength, joy, to get well (or at least well enough) to make life pleasant. The more I read, the more I find CKD viewed as a death sentence aka Dialysis until too weak to keep it up. YET, the more I read, the more I am finding hope and healing. I am now at Stage 3b, rather than Stage 4. ALSO, have they tested you for anemia??? After MONTHS, and me almost begging them for help, they FINALLY tested and found that I am anemic AND now I am actually starting to think much clearer! Also, I am checking out something important at:

getpurechiro.com/single-pos...

Kidney

"All 17 cases with kidney disease were out of alignment in the lower thoracic area (T10-T12)." I find this VERY interesting because my T discs are a mess!

[sharonlyn]

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...now this is my experience with this way of eating...everyone is different but i found out i ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...