Dr's visited didn't go as I: Hi everyone... - Kidney Disease

Kidney Disease

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Dr's visited didn't go as I

bbeba103 profile image
33 Replies

Hi everyone,

Yesterday was my 3 month visit with the Neurologist didn't go as I hoped, we talked about my potassium being quite high, and what were my only two options. One would be giving a blocker or another option was to poop it out. "Sorry" for that detail, but said we wouldn't discuss this until he see my new lab work. I went in they took out blood , and I had to give urine. Let's me say this ime I had no real symptoms when I visited my Dr. I get a call from my kidney clinic to go back to the emergency room, because I was in need of a blood transfusion. In April my Hemoglobin was 8.1 I believe yesterday's visit was 5.4 also efgr level last April was 44 yesterday's levels was at 31, I'm not sure if it was due to the fact of how anemic I was. During every blood transfusion I remind them I need to take Benadryl, because I break up in hives which they done at the hospital I'm now. I don't know if it the high dosage of Benadryl they gave me , but blood pressure went out of control at some point I thought I was to go into Cardiac arrest. Luckily it started to normalize itself after sometime. I got two units of blood yesterday and through the night my hemoglobin is up to 9.

🌹

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bbeba103
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33 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

I do not know where you live but it was negligence that the infusion place let you leave before at least an 1/2 hour after you were all done to see if there was a reaction. I would have a conversation with the center. My iron infusion, they make you take medication like Benadryl or a steroid because the reaction you had is not uncommon. I had to stick around for an hour after I was done for that reason.

bbeba103 profile image
bbeba103 in reply to Bassetmommer

HiNo I had a blood transfusion I'm not allowed to get iron infusion because it nearly killed me a few years.

I'm in the hospital now being monitored

🌹

CuriousCKD profile image
CuriousCKD in reply to bbeba103

Hope you feel better soon!

whats profile image
whats

I've been through a similar experience, where I was feeling quite weak and was discovered to have a dangerously low blood count, received multiple blood transfusions, EPO, etc. I had good doctors who brought me through it in about 6 weeks, though I still have anemic blood counts. Guess its common in CKD. Anyway, sympathies, rest well, trust your doctors. I was always impatient to leave after a transfusion or infusion and did want to wait the recommended time.

Beachgirl32 profile image
Beachgirl32

Wow sorry you had to go through all that . Are you ok now?

bbeba103 profile image
bbeba103

Hi Beachgirl,

I'm ok after all that I have been through I'm still at the hospital, and will be throughout the weekend. They will be performing an colonoscopy on Monday if all goes as planned, because they don't understand why I'm so anemic, if it's not due to my CKD causing it then they wonder what is. It's odd I will be on two day perpe for my colonoscopy oneday is bad enough, but two hopefully it won't be as bad as it sounds.

Thank you for replying to my post 🌹

Pisces101 profile image
Pisces101

Hope you'll be home again soon - sending 🌼🌷🌹

bbeba103 profile image
bbeba103

Thank you Pisces101 for the well wishes 🌹

Bunkin profile image
Bunkin

wow so sorry you had to go through that. I always seem to have strange things happen too. Hope you’re feeling better!!

bbeba103 profile image
bbeba103

Bunkin, yes that seems to happen to me often as well I'm feeling okay a little nervous about the colonoscopy that they will be doing on Monday. Plus not looking forward for all the perpetuation for the colonoscopy. 😣

Stay blessed 🌹

honeybug profile image
honeybug

Hi bbeba103 🤗

I’m sorry for your suffering and hospitalization. I just said a special prayer for you and send you my support and healing thoughts.

Please take care and I hope and pray you’re better soon.

Love and prayers

EJ 🤗♥️🥰🙏🕊🌿🌸🦋🌿🌹

bbeba103 profile image
bbeba103 in reply to honeybug

Thank you so much reading your comment and you saying a prayer for me really touched my heart. You have no idea how your gesture made me feel at this moment ❤️

Hope you are well God bless you.

honeybug profile image
honeybug in reply to bbeba103

Awww how sweet of you to say this. You are most welcome sweetie.

Thank you …I’m hanging in there hun.

I pray that you will do well and know that I care about and love you. Keeping you in my well wishes and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

Jayhawker profile image
Jayhawker

Well, it’s good you’re still with us! Glad you’re in the hospital recieving appropriate care.

I don’t know if you enjoy music, but I’ll try to link into some of the music I often listen to to relax in a few more reply posts.

Jayhawker

bbeba103 profile image
bbeba103 in reply to Jayhawker

Thank you Jayhawer for taking the time to comment on my post, yes I'm still here trying to be strong. Been dealing with so much since the age 5/6 but I'm still fighting it's hard can't lie.

Sure you can share the music you enjoy maybe it help me get relaxed.

Betsy 🌹

Jayhawker profile image
Jayhawker

youtu.be/5pBjopDymts

bbeba103 profile image
bbeba103 in reply to Jayhawker

"That's how I feel like the walls are going to fall through "

Surely can relate, and with everything I have been I seem to come through " okay"

🌹

Jayhawker profile image
Jayhawker

this little girl received a kidney from her mother.

youtu.be/jEFxi_fOe_A

bbeba103 profile image
bbeba103 in reply to Jayhawker

I remember her performance amazing little girl on so many levels.

Thank you 😊

Jayhawker profile image
Jayhawker in reply to bbeba103

she’s since sung at several CKD events. She’s sung a lit st other events too.

Jayhawker

Jayhawker profile image
Jayhawker

I LOVE the scenery in this version of Fight Song!

youtu.be/mOO5qRjVFLw?list=R...

bbeba103 profile image
bbeba103 in reply to Jayhawker

That's how I have pictured heaven to be a beautiful peaceful place where there's no pain or sickness.

Thank you for sharing with me 🌹

CatOnACloud profile image
CatOnACloud in reply to Jayhawker

i enjoyed this. Thanks :-)

Jayhawker profile image
Jayhawker

we’ll, those are a few of my favorites. I hope they help you pass the time while in the hospital. Sending you nothing but good thoughts!

Jayhawker

CuriousCKD profile image
CuriousCKD

One of God’s promises. In Heaven, no more pain, no more suffering, no more sadness. Just joy and happiness! 🙏✝️💯

bbeba103 profile image
bbeba103 in reply to CuriousCKD

Amen

Miss-guineapig profile image
Miss-guineapig

awe bbeba , you have been through the mill, wishing you well and sending you a big hug xx

bbeba103 profile image
bbeba103 in reply to Miss-guineapig

Thank you for your kind words and wishes.

🌹 xx

bbeba103 profile image
bbeba103

I'm still in the hospital they are preparing me colonoscopy tomorrow to make sure I'm not bleeding out somewhere. I asked if my anemia could to my CKD I was told could be, but at the stage I'm at they don't think so. Which confused me, because from things I have read online people suffering from CKD are known to suffer from anemia. They are having drunk two of Golytely I started one last night around 10 pm and stopped at around 4 am, my body couldn't take it. I started to feel nauseous, and started to develop chills, Golytely isn't as bad, but towards the end it starts to become default 😅 I pretty much stated in the bathroom 😶‍🌫️ hopefully test results come back negative this journey is a very Bumpy one literally.

Stay blessed 🌹

bumblebee_tuna profile image
bumblebee_tuna in reply to bbeba103

The kidneys produce a hormone called Erythropoietin that is needed for bone marrow to produce new blood cells. As kidneys start to fail they produce less of the hormone and that causes anemia. I think what they told you, is that at your level of kidney failure you shouldn't see enough of a drop in the hormone levels to trigger such sever enemia.

bbeba103 profile image
bbeba103

They never explained to me about Erythropoietin, he just explained that he didn't believe at the stage I'm at with CKD that it should be the cause of my anemia. That's interesting to know about Erythropietin will be looking into that thank you. 🌹

CatOnACloud profile image
CatOnACloud

Hope it goes ok tomorrow. I was scared i had my first and they were so kin to give me propofol so i don’t remember a thing far ss im concerned i just slept thru it. They had to remove 10 polyps, some large and pre cancerous, so definitely sthg to get done anemia or no.

bbeba103 profile image
bbeba103 in reply to CatOnACloud

Thank you so much on there first attempt to do a colonoscopy it was a failed almost a yr and half ago. I couldn't finish the entire bottle of the perp liquid as they started nearly at 10 pm stopped at 4 am, I developed a fever. They did find polyp/polyps, but never said exactly how many they saw, so tomorrow they should be able to remove them.

Glad all went well and thank you for commenting on my post.

🌹

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