I'm new. 1st post. Stage 5 and feeling it.. this is my 2nd rodeo but 30 years later

[NoskieAJ]

I've been stage 5 for about 6 months now but even though my nephrologist originally said I could get down to a 5 GFR before dialysis and possibly go another year or two, I really don't see that happening. Last check my numbers were GFR 13, BUN 45, Creatinine 4.7. My RBC and Hemoglobin were only slightly (~ 10%) lower than normal... but I AM WIPED OUT. My other symptoms are I fall asleep during the day and today I fell asleep 3 times at work - bad thing is I don't even remember putting my head down or starting to doze off, I just wake up. I see stars occasionally when sitting, standing and when I walk around (blood pressure is OK) Doc thinks it's due to me getting near the end of my kidney's life. Thank goodness I work from home and don't have to commute. All food has a funny taste to it.. drinks all taste the same - blah. I just feel crummy all the time. At least I don't itch like I did during the 1st transplant.. or I don't itch "yet"... I'm grouchy more often than not - I can't stand to be on conference/video calls that drag on and on - I just don't have the patience for people any more who just blah blah blah and ramble on calls about NOTHING - I used to enjoy the small talk because small talk is what us humans do but I'm so hoping and praying I don't lose my cool. I need to buy my wife flowers for putting up with me.. this is NOT me and I want to be myself again so I am actually looking forward to dialysis.

I've been blessed to have this wonderful kidney that my mom gave me nearly 30 years ago when my original kidney failed due to reflux. I'm going next week for a consultation to have a shunt put in. I've also had 3 pulmonary embolisms the past few years so I'm on blood thinners for life - not sure how that's going to play into this I was on PD for 9 months over 30 years ago and I couldn't stand it because of 1) the infections - oh so painful. I'm sure things have changed but 2) EVERY DAY and I don't want to do PD ever day if I'm travelling. I'm probably 1-2 years away from a TRANSPLANT and I must be able to travel and have totally free days. I decided to do at home hemo. I am a little nervous about having to go back on dialysis after being off it for so long but I feel SO SICK that I'm just about willing to try anything to feel better. I am not myself. I miss the old me. Off to Amazon to pick out some flowers.

[Bassetmommer NKF Ambassador]

Hi NoskieAj,

You sound like you know what is going on. We understand. When you feel crappy, it is really hard to be nice. I get it. I have an issue right now that I am in constant pain. I know they are working on it to fix it and soon, it will be better, but for now.... don't mess with me.

I just listened to a podcast about human suffering. We are conditioned from birth to endure suffering like a badge. And unfortunately, it is human nature to pass suffering on by being mean and nasty when we suffer. It takes awareness to help yourself from being like that and you seem aware of this issue. You're being human.

Sometimes we think the people closest to us should know what we are going through. But they can't because they are not us. The best thing to do is talk to your friends and family. Let them know how frustrated and tired you are. Ask for help. Don't try to be silly by trying to do all that you could before because all it will do is make you more tired.

This is the most important piece: Carve some time out for yourself. If you know you have a big day coming up, go to bed early. Nap when you can. Eat well and rest. Take time to just take care of you which could be just sitting and doing nothing.

At lastly, take it one day at a time. Get on a transplant list ASAP. Go to the local dialysis center and become familiar with the different methods of dialysis now out there. Things I am sure have improved and changed in thirty years. They make smaller machines now for home dialysis that you can take on trips.

Come back here when ever you need to blow off steam. And go buy your wife those flowers.

[RhenDutchess123 in reply to Bassetmommer]

bassetmommer.....you are so good at calming people....wow....lots of common sense and compassion...we are all fortunate to hear your Words of Wisdom

[Bassetmommer NKF Ambassador in reply to RhenDutchess123]

Thank you so much. This made my day.

[RhenDutchess123 in reply to Bassetmommer]

you deserve to have a great day..thank you for all the time you spend helping others and also us watching you help them

[Rene70]

I pray for you and please pray for me... Blessings! I am going to believe God to bring me through this season....

[NoskieAJ in reply to Rene70]

Will do! I've got an army of prayer warriors and I've found peace when dealing with certain things. Prayer works. I've calmed down and now just anxious. :/

[KyMom7]

Hi NoskieAJ, Sounds like you have a good handle on most things. Treatments have come a long way in 30 years. With your itching, I would suggest having your phosphate level drawn. Itching is an indicator that it maybe too high. Wishing you well!

[Carosuz2016]

I’m so sorry , I wish it could be better for you! I’ll keep you in my thoughts and prayers! Keep on with the fight, don’t give up!!

[RhenDutchess123]

hang in there buddy....you are not alone...we are all pissed at being sick too..keep us posted !!..and like bassetmommer said..."go order your wife flowers "

[NoskieAJ]

I got my wife the flowers, she was really surprised (I didn't know you could Archive Amazon orders) I go Thursday to get my fistula put in. Doc said I have good veins and a lot of options so they'll put it low in my arm. I'm ready for this. Thank you all for the kind words and encouragement. It means a lot. Praying for the best for you all as well... AJ