Yesterday Saw My Nephrologist

[bbeba103]

Hi Everyone,

Yesterday I had an appointment with my nephrologist I was being seen every three months, but my labs in October of last were stable so they had me follow up in 5 months. To my surprise my regular nephrologist left her practice so now I'm under a new Dr's care. My blood pressure was a bit high, and I'm still having heart palpitations even while on Metoprolol Er, Succinct 25 mg, my doctors know/knew every visit for me is very upsetting, so it's kind of normal for my blood pressure to be a bit high, but asked why my heart palpitations are still happening if it's months. I was put on a new medication called Carvedilol 6.25 mg take one tablet twice a day. I noticed as well my hemoglobin was 9.8 in October now it's 8.1, my egfr was 44 its now 43. I got a call which I didn't answer to many telemarketers calling me that my potassium was high, and that I should take a total of four Soduim Bicarbonate twice a day. I'm even scared to taking four pills of Sodium Bicarbonate. I just feel so overwhelmed each Dr's visit is like waiting for a life sentence, and my heart is being ripped apart.

Just another day in the neighborhood as Mr. Rodgers would say hope everyone is well.

🌹

[Hidden]

Hello bbeba103. Carvedilol is a good BP med. I take it twice a day. It's odd that the doctor would have you on two beta blockers. It could make your heart rate too low. My other BP med is an ARB (Losartin). This combo works very well and my BP is generally around 120/70. I also take two 600 mg sodium bicarb tablets every day. My body's pH was kind of low (acidic) so my Neph gave me a script for the bicarb tabs and they work. I too see my Neph every 3 months and get labs done each time. He has told me that lab results have quite a large error margin so the variation could be normal if it's not that big of a difference.

[bbeba103 in reply to Hidden]

Hi.

My Dr tried taking me of all blood pressure medication, but seeing that my blood pressure would still be a bit high put me on Metoprolol also would help with my heart palpitations. I'm glad to hear that Carvedilol is a good blood pressure medication hopefully it helps control my blood pressure as well. I believe if I remember correctly I was at some point on Losartin, but made my made my blood pressure go to low. Yes my Dr was seeing me every 3 months with lap work later changed to 5 months I have to go back in April.

Thank you so much for responding to my message and sharing your experience. 🌹

[Bassetmommer NKF Ambassador]

It is easy to freak out with all that is going on, but it doesn't help you. Keeping you BP down is essential to kidney health. I too just was switched down on my Irbesartan and put on carvedilol. I also have high acid levels and so I take sodium citrate daily in my afternoon hibiscus tea with some honey. I could not tolerate the tablets. So, what you are doing is very common for CKD. Hang in there.

[bbeba103 in reply to Bassetmommer]

Hi,Yes your right I'm trying to keep by blood pressure down, from what I have read online, and here in our community as well. Very encouraging to hear that Carvedilol helps hoping it works for me as well. I believe my acid level still is at normal range, but my potassium is high why I was told to take a total of 4 Sodium Bicarbonate.

Thank you for your kind words hope all continues to go well for you God bless you 🌹

[Beachgirl32]

carvedilol is good doc gave it to me cause it also help the heart my ejection faction went really low that reall help it bring it up. too I’m on 12.5 twice a day and on another pill for blood pressure bidil . So I’m on two that are used for blood pressure even though we use one for heart care. With kidney disease a lot of time it will affect the heart so it a good one to be on .

[bbeba103]

Thank you for your input I see positive things about Carvedilol hope I also have encouraging results as well. Was a little nervous, so I'm starting it today.

🌹

[horsie63]

I take carvedilol 3.125 twice a day because when I had a thyroid storm my resting heart rate was hitting 150 now it’s 60 and no palpitations.

I’m surprised they haven’t addressed your anemia.

[bbeba103]

I'm on iron pills can't get an IV infusion because I almost went into cardiac arrest. In June I had a blood transfusion when I went back around October it was around 9.8 now it's 8.1 their more concerned that potassium is high, but stable. Also that blood pressure is high again, but I was told my blood pressure is more emotional so I'm having a hard time trying to control it.

Thank you for responding to my post 🌹

[JaneMiz in reply to bbeba103]

try Paced Breathing, a free app. It’s got research behind it. 🙏🏼🧘🏽‍♂️

[horsie63]

have you seen a hematologist? Perhaps you need EPO and not just iron? What is your potassium?

[bbeba103 in reply to horsie63]

Hi,

I was seen by an oncologist but he's main suggestion was an iron infusion which all my other Dr's have said no if anything I get a blood infusion. My potassium is 5.5 .

Not sure what's EPO ?

Thank you I appreciate your feedback

🌹

[bbeba103 in reply to horsie63]

Hi

I have been seen by a Oncologist is a hematologist different a Oncologist? I need to go on a Google search. EPO hasn't been mentioned to me yet my potassium is 5.6 was checked a week ago tomorrow.

Thank you for replying 🌹

[horsie63]

Erythropoietin helps maintain healthy red blood cells and people with anemia caused by CKD are prone to being low. So sometimes the synthetic version of EPO is given to treat the anemia,

That’s what is causing mine buts not as low as yours so I’m holding off for now. My iron, folate and B12 are all fine so iron won’t help me.

[bbeba103 in reply to horsie63]

First time I hear of Erythropoietin interesting thank you mine oncologist main focused was giving an iron infusion which literally killed me.

Some of my levels had changed from October yet my Dr said their okay my b12 is in normal range compared to last summer.

Do I need a prescription for Erythropoietin ? My iron has been all over the place.

Thank you 🌹

[horsie63 in reply to bbeba103]

yes I understand you do. Do you have cancer and that’s why the onocologist? Where do you live? There are several websites with good info

Kidneyschool.org

National kidney foundation

Davila.com

[bbeba103 in reply to horsie63]

No I don't have cancer but every since I have anemia that's who saw me in 2019. Now that I'm at a different hospital I'm being seen by onocologist he deals with blood related issues. At first before being diagnosed with CKD, my symptoms to me from reading online was leukemia I was torturing myself and he told me he was a million percent sure I didn't. I live in lillinios.

Thank you for the links 🌹

[RoxanneKidney]

44. Been there done that. Sorry but we are both a long way from tanking. My culprit right now is sugar. God help me on Valentines day. I just heard about a study regarding the ol baking soda and Niicine..sounded pretty good to me. Basically our blood is apparently acidic way longer rhan we can detect so I was going to try that out myself...or just avoid the sugar which is the less easier more healthful option.

[bbeba103 in reply to RoxanneKidney]

Hi Roxanne, What are your levels now if you don't mind me asking.

I have read people taking back soda and they have claimed to have helped, but I'm scared of futher hurting my kidneys.

My nephrologist never suggested me going on a diet only recommendation take my medications, and drunk lots of water.

When I spoke to one of my urologist I have suffered of kidney stones and bladder, still have a stone on my.left kidney.

I brought up my egfr he told me not to focus on that so much as long as my creatinine levels were a some what normal range then my kidneys weren't doing as bad. 🤔

Thank you for replying.

🌹

[RoxanneKidney in reply to bbeba103]

I do best on a vegan diet. Currently around 50 gfr and leaking a small amount of protein. I need to stop the sugar and probably drink less coffee to stop the protein. At one point it was 500 /600 but down after BP was lowered with Lisinopril. I jog about 30 min 4 days a week. I eat no meat or dairy and try to keep salt down.

[renegade70]

i totally relate. there is so much anxiety attached to chronic disease. i think the anxiety plays a larger part than the ckd itself.

[bbeba103]

I agree every appointment in my case my anxiety gets the best of me, I was use to going every three months, because in my mind I thought my kidneys wouldn't change for the worse. When I think I got a hold of my situation I take four steps back, because my fears and uncertainty of what my life will be. My entire I have spend my life in, and out of hospitals as a child I dealt with childhood cancer "neuroblastoma" I over came that, and never thought in my mid 40's I would find myself dealing with this. The worse thing is their isnt much options, but dieting and a transplant, which isn't really as simple as some may think trying to be optimistic 😕

Thank you 🌹

[Txdragonfly in reply to bbeba103]

hello there,

I have stage 4 CKD. My nephrologist prescribed Sodium Bicarb once a day to try and raise my carbon dioxide levels, which was 19 at last check. I also take Carvedilol twice a day for BP control. What really intrigued me in your post was that you had neuroblastoma. I also had that childhood cancer in the early 50's! I am now age 69. Good luck to you with treating the CKD.

[bbeba103 in reply to Txdragonfly]

Hello, Oh wow so sorry you also dealt with neuroblastoma as child so sorry to hear. I wonder if there's a connection since we both had the time of cancer, and now as adult chronic kidney disease. It's been a roller coaster since being diagnosed with kidney disease they believe it's from having constant urine infection over the years. I'm taking sodium bicarbonate 2 tablets 3 times a day, Carvedilol twice, right now my major issue is why my hemoglobin are always so low. Thank you for the well wishes you as well may all go well for you.

Stay blessed 🌹

[Blackknight1989]

Since age 29 I have spent much of my time in the hospital as well. I also have anxiety with every doctor’s appointment. Fortunately my GP takes about an hour each appointment to sit and talk with me. We have a great relationship although the new nurse has a 130 mile commute and hates my appointment dates but I digress…with an eGFR averaging about 17 I appreciate his attentiveness. If you are UK patients here is a resource that may

kidneycareuk.org/get-suppor...

if in the US NKF has the same resources:

kidney.org/nkfcares