Disappointed 😞

[bbeba103]

Hi everyone, it's been a minute since I posted anything, hope everyone is doing well. I went in for blood work which they have me do every two weeks.

Last visit was almost three weeks my hemoglobin was 7.6 today it was 7.3 which they said has been stable.

The most disheartening information were seeing my kidney efgr because this visit was 47 today it was 30.

I can't even cry at the moment I'm just taken back also my creatinine is 2.1 the highest it's every been since being diagnosed with ckd stage 3.

My sodium is okay, but my potassium is 5.7 my potassium for awhile has been high, and I'm taking a medication for my protein since I'm urinating protein that makes your potassium go high.

I don't know what to think it's like my heart gets ripped out every appointment I go to. Just when things look to seem a little okay I take four steps backwards.

😞

God bless everyone.

[Beachgirl32]

sorry that your labs are going down and can be disheartening but I found not to be to hard on yourself if you know you are doing everything you can . My last nephrologist visit I cried because I was so tired of doing everything I could possibly do and then when you hear the news well things aren’t going like you thought . I really had to reflect no. That my nephrologist knew his bust I was and told me I’m doing everything no could possibly do my body is handling it this way nothing I did wrong it took me a day or so to reslize there was nothing more I could do . Don’t you see eating right exercising right not abusing your body doing what the doctor told you font be do hard in yourself you have a kidney disease and you can be in so much control of it just do the best you can took me awhile to accept that I’m doing all I can I’m going to have up and down in my kidney sometimes I may feel better than other time sometime. I may feel worse I tried each day to thank god something in my life in greatful for not to be focusing on my bad labs

[orangecity41 NKF Ambassador in reply to Beachgirl32]

Thanks for sharing. I am 82 and on CKD prescribed diet. I was diagnosed at 3b, 6+ years ago. I am grateful for the good health I do have. I also do appropriate exercise.

[bbeba103 in reply to Beachgirl32]

Thank you yes their are some days were I'm hopeful every doctor's visit freaks me out. I need to better control my emotions just been such a struggle. Especially when you get your lab results you see a little improvement, and your next visit your numbers again change.

I try to put my trust in God to help me in this journey.

Thank you 🌹

[Tolmezzo]

Don't be so sad, 2.1 is not a drama. You still have chance to fight. On the other hand HB is really too low. Are you on EPO injection? rgs

[bbeba103 in reply to Tolmezzo]

Hi,I seen the nurse who works with my oncologist about my hemoglobin she said it seems that my levels being in the 7's is the normal range for me. I go to see my primary doctor on May 19th for a three month check, and more blood work they have me go in every two weeks no EPO injections it's never even been mentioned to me.

Thank you for replying to my post 🌹

[Bassetmommer NKF Ambassador]

Everyone gets sad when they hear the numbers and they are not what we want. Do not ever blame yourself. It is just the CKD journey. As look as you are doing what you can with diets, meds and getting some exercise, it is all you can do. Your potassium is very high. Did he/she look at your meds to see if there is something causing that? It is often BP meds. Also, your hemoglobin..... is that an A1C at 7? Because that is extremely low for a blood count. They want at least 10. There too are meds to help with that. I do not understand why your doctor thinks those levels are ok. If your doctor is not talking to you about preventive medications, then you need a new doctor.

[bbeba103 in reply to Bassetmommer]

Hi,They explained that one of the medications I was taking could be contributing to potassium being high so as of two days they told me to stop taking it.

She explained they are other medications they could try but would make potassium go even higher. The medication I was on helped with protein in the urine, high blood pressure also heart palpitations.

Had to wait two days for my local pharmacy to see if my insurance would cover it.

As of right now they said 7.3

in hemoglobin is the normal number for me so they are monitoring me every two weeks I go for blood work.

Hopefully the new medication will work.

🌹

Stay blessed

[viviselphie]

I am sorry that you are this journey. Each step down, takes it out of us, you are not alone in this. I wish i could say more to make you feel better. But know that I see you and that I understand.

[bbeba103 in reply to viviselphie]

Thank you for your kind words hope you are well.

🌹

[Blackknight1989]

nothing to be sad about you are stable and stable= Great news! I am sure you’d have liked to have some improvements but labs can vary by as much as 30% lab to lab and occasionally can vary by a larger percentage. As an example I have been sun 20 eGFR for 10 plus years, yet my last eGFR measurement was 23…in my opinion that way due to being well hydrated and having just eaten my supper. Regardless stability is what matters and ultimately what will help you “outlive” the need for extreme treatments like dialysis or transplant…as a CKD 4 patient since my CKD diagnosis in 1996 (followed swiftly by AKI 8 days later) I believe that we as sufferers are better off if we can keep our “born with” kidneys working at any “functional” level as opposed to a transplant…I have no medical basis for that opinion it’s just my general observation after nearly 30 years as a stage 4 patient…so celebrate as opposed to being sad as I always say “it could be worse” (and sometimes MUCH worse…lol!

[bbeba103 in reply to Blackknight1989]

Thank you

Reading your reply gives me some hope that maybe I can be as lucky and stay at stage 3 for many years.

Thank you again

🌹