Hi it's been awhile hope everyone is well, I have been in and out of the hospital it just seems endless. Appointment after appointment still struggling with my amenia that it's being monitored a few weeks ago it was 6.8 than suddenly about a week or dropped to 6.5. I have no real symptoms yet on the 29th I had blood work it was 7.0 still low, but some improvement. I'm still on the iron pills, but also added a natural supplement which I think has helped to keep me stable. My efgr went up a few months ago it 38 now it went up to 48 which I was in total shock. I got my endoscopy and colonoscopy done Feb 2 because they still believe I'm in internally bleeding plus they removed some polyps. I was told I had 9 polyps 5 were removed back in August, and 4 were left behind because my blood pressure went down so they couldn't finish. I haven't get spoken to the doctors or recieved any results on MyChart which has me VERY scared. Back in August they said I had a hernia/nodule in my stomach on the day they performed my endoscopy, and colonoscopy I was told my nurse they removed 11 polyps I thought 11 I was told they couldn't remove 4. On the report I was send home with the summary and instructions it said they found subepithelial tumor lesion which I of course started to GOOGLE it up. I'm so numb and scared at the same time because what if this turns out to something worse. I think I'm still in total shock every time I go in for something here goes I knew discovery. The only thing keeps me, and in decent spirits is God or else I wouldn't be able to handle this.
Thank you and God bless everyone 🌹
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bbeba103
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HI BBeba, I cannot speak to the issues with the colon. However, why in heck are they not transfusing you with iron. The pills are not working, obviously. My doctor had me do a 3 hour infusion of iron last summer. I was only at 9.7. It's not anything major to have done and it brought my anemia up to a better number. Talk to your doctor about it.
Thank for your reply unfortunately around 2015 I was given an iron infusion and it nearly killed me. I'm allergic to it I didn't know til I started to get hives on my body my throat started to swell up, and my left side started to hurt. We have talked about it, but it's very risky so that's the reason I haven't gotten one.
wow, I have heard people have reactions to it. When I went, they wanted me to take a steroid before and I refused. That really complicates things for you.
Unfortunately yes it makes it pretty complicated because I can't risk it although my oncologist wanted to, my other doctors said it wasn't a risk I should take.
when you were an inpatient with an Hb of 6.8 and the doctors thought that you must be losing whole blood, they should have done the right thing and given you a unit of whole blood or even packed cells. We really need to all speak up and demand more care. It’s frightening how the medical profession is so blasé about CKD. Until they get it themselves!!!
I had close contact with one of my doctors she said all my other blood work were okay except for my hemoglobin and that we would go in for blood work every so often just to make sure. I'm hoping with the natural supplement I'm taking on top of the iron my hemoglobin continues to go up. Also my potassium has gotten better the last time they checked. Now I'm dealing with my stomach issues that went from acid reflex to gout/gerd/hernia/to possibly a tumor or some kind of mass.
Thank you kindly for replying to my post and everyone else, never heard of packed cells I'll do some searching on it. Depending what I learn on March 9th I'm looking to go to a different hospital.
Gosh you do have a lot going on. I hope you are able to have investigations done quickly so that you can get treatment and start to feel better. Packed cells are when they give you the blood cells but not the plasma which is given to people who have clotting problems. Hospitals often save most of their ‘whole blood’ units for people in accident and emergency
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new to all this
Went from Stage 3 to Stage 5 in 2 years - low protein diet?
My CKD journey 
