Update on my condition : Im still very sick... - Kidney Disease

Kidney Disease

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Update on my condition

drmind
drmind

Im still very sick and had to go to the ER over the holiday when i got sicker and could not get any help from on call at my nephrologists group. Bottom line, they did not keep me but i got their lab results and summary. It looks as if i developed a bad infection from urine retention caused by a medication (Hydrazaline) thst i was taking. They sent me home with an antibiotic and it has only been 15%;effective. Still very sick

The medical help is dismal at this time. I have a new primary (seen once) and hes busy until 10/9. When his nurse heard my problem. she was abke to get me a telehealth appt on 9,/23. I cant blame this doctor as he doesnt even know me. And. Before all this happened i was setting up an appt with a cardiologist , but have neen too sick to do even telehealth. So. The only doctor i have now is the nephrologist . I need to get this infection under control. I only one day left of the ER antibiotics. Im on my old BP meds thst I took for years. BP is running 125/70 and tonight it was 134,/70. I need an antibiotic to get rid of this infection. My GFR went down to 20.from the 28 i worked so hard to bring up. I know i can do it again once this infection is gone. Thanks for listening. Ive been so sick i couldn't write before

B

30 Replies
oldestnewest

Sending you prayers🙏🙏Hope this gets resolved soon and you find the right help. Stay strong🙏

drmind
drmind in reply to SN23

Thank you. Its so good to have the prayers and the support ❤

Bet117
Bet117NKF Ambassador

Hi drmind,

I am so sorry that you have had to endure such a nightmare. Just know that you are not alone; we are all here for you.

Keep all of your records from the ER and don't give up.

Call your cardiologist and see if you can be seen there; this is an emergency. I would also call the urologist that you spoke about as this is inexcusable.

If you are still waiting until the 23rd and no cancellations, if there is an urgent care / walk- in center near your home; go in. They can see you and perhaps recommend a good PCP.

Please reach out and let us know how you are doing.

Sending you healing thoughts and prayers.

Bet🙏

drmind
drmind in reply to Bet117

Thanks

Are you planning to go back to the ER when the antibiotic runs out? Also, is it possible for the ER doctor to contact either your nephrologist’s office or primary care? Maybe a call from the ER doctor would get the attention of your nephrologist’s office.

Jayhawker

drmind
drmind in reply to Jayhawker

I dont think tnis will hsppen. Have a call intp nephrologist. Waiting to hear

Jayhawker
Jayhawker in reply to drmind

Good! Keeping my fingers crossed hoping you’ll hear back from your nephrologist ASAP.

Jayhawker

Bet117
Bet117NKF Ambassador in reply to Jayhawker

My thoughts as well. If there is an urgent care that she can be seen asap - would be great!

Bassetmommer
BassetmommerNKF Ambassador

HI,

Is there anyone who can call for you to get your doctors to listen? An UTI is not a good thing for a CKD patient and I am sure you know that. The antibiotic is probably a low dose because antibiotics can be harmful for the kidney as well. But there are some that you can take but it will take time to clear up. Keep hammering at your doctors. I know this doesn't help but the medical world also got turned upside down with COVID and they are still not functioning well. They are working in parameters that have drastically changed. And the patient backlog is terrible. So sorry you are experiencing what you are. You are in our thoughts.

drmind
drmind in reply to Bassetmommer

They don't think its a Uti but more likely a bladder infection

Bet117
Bet117NKF Ambassador in reply to drmind

Call the urologist and see if you can get in there. Let him/ her know all of the steps that you have taken to remedy this, the medications that you are on and what you have been given in the ER.

I agree with Bassetmommer, you need to be heard.

drmind
drmind in reply to Bet117

You're joking right? All the nephrologist (not urologist)wants to do is change my HP meds back to the one that caused me to have my feet to get swollen

Hes going over my hospital record to see if hes can prescribe antibiotics.??? Im waiting

You know i workef as a professional for 40 years . For 25 years i worked as a PhD psychologist at the teaching hospital at Shands and the VA in Gainesville where i did research and taught my psych students and their medical students . This doctor has crossed a lot of lines. There is something called the standard practice of care which he has not engaged in.

Plan B is on hold. My daughter will take me to CentreCare that's about 3 miles from here if this doctor doesn't come thru for me

Its so nice to have all of you offering me support and sound advice. Thank you from the bottom of my heart. Pls dont stop caring.

Bet117
Bet117NKF Ambassador in reply to drmind

Hi drmind,

Gosh you are not alone! Of course this is wrong!

The reason that I suggested getting a hold of your urologist is if this is a UTI or bladder infection, it is their area of expertise.

As far as your nephrologist is concerned, if he/ she is not listening and communicating with you, forget following up in their area, then may be its time for a second opinion. These people are paid very well for their services and if not providing what you need; consider getting someone who will.

Once this is set and you are feeling better, put together a health care team who listens to and communicates with you in basic language and also communicates/ consults with the other members of your team after each visit, so no conflicts and eases your stress.

Please take care of yourself and jump the nephrologist to a urologist.

Let us know the outcome!

B...

drmind
drmind in reply to Bet117

Thanks

Bet117
Bet117NKF Ambassador in reply to drmind

None ever needed! 🤗

Drmind, I am so sorry this is happening to you. Three visits to my useless neph. and she's struck out...no help, no instructions, nada. Please ff above suggestions and change docs. We are entitled to be seen and our conditions taken seriously. This isn't yet happening for you. Wishing you the very best and soonest of getting the infection under control.

Thanks

Jayhawker
Jayhawker in reply to drmind

drmind,

I’m a university professor too. I’m still working at this point. I’ve conducted my share of research in my field which has been highlighted both nationally and internationally. I have received numerous larger federal grants from the Department of Education in DC. So most would consider me to be a credible professor in my field of study.

And yet, I find myself challenged, more often than I like to admit, to work with the medical community. I’ve committed myself to effective self-advocacy setting a “pleasantly firm” tone during appointments when warranted. I’m sensitive to the chaos the medical community is experiencing now due to COVID. I’m also mindful of the financial distress COVID is placing on our medical system.

So when I’ve got something like an infection going on, I definitely contact my nephrologist’s office. When I talk with the nurse I ask whether my nephrologist has time to see me quickly. If not, I get commitment from them for them to consult with my primary care physician. My PCP’s office has walk-in appoint times every day of the week. My PCP is good about working with my other specialists.

This system has been working fairly well since my vitamin D toxicity episode earlier this past summer. It has lessened the burden for my nephrologist’s office while still providing me appropriate care. Of course I’m fortunate that my PCP has daily walk-in appointments. That won’t be the case for everyone. But there should be a way to set a backup system of some sort in place while we are each dealing with COVID.

Jayhawker

drmind
drmind in reply to Jayhawker

Thanks for the good advice. I had a primary for 7 or 8 years but sadly he relocated to another city about 200 miles away

But, I've got a 9/23 appt with a new one and hoping to establish a good relationship with him .

I dont see medical doctors with offices in town going thru major covid stresses

Besides it doesn't cost anything to be kind, compassionate, and respectful .

Good for you for continuing to work. Dont stop

Jayhawker
Jayhawker in reply to drmind

I agree that this is not all COVID related. COVID has just exposed problems that were already prevalent in the medical profession. It amazes me how inept so many physicians actually are after literally years and years of training.

I haven’t yet fired my nephrologist; the one who with the nurse practitioners created the extreme vitamin D toxicity for me. But I’ve definitely gotten really involved in the medical care he is supposed to be providing. I’m literally helping him and the nurse practitioner organize themselves. I told him that I’d give them another 6 months and see how things are going at that point. Of course I said that I reserved the right to change my mind if I have more difficulties like the toxicity which can be traced solely to them.

Fortunately the other members of my medical team are good. Nevertheless, just one problem in the team can cause real issues. I’m hoping that you’re going to find your new PCP is good. That can make all the difference.

Jayhawker

drmind
drmind in reply to Jayhawker

Thanks. Glad you're doing well with your team

Sometimes you have to be an advocate for yourself. What I mean by that is to insist your Nephrologist treat this infection and do it now, if it is a kidney infection. That is basically his job and maybe he just needs a little reminder. Feel better soon.

Thanks

Oooh Drmind. So sorry to hear. I'm simply here to tell you we all care about you. Stay strong (as possible) and assemble a new care team, as mentioned by others, as time permits. You're a smart, focused lady. I have no doubt you will see this through to your benefit and satisfaction. And please reach out as needed. In the meantime, sending prayers your way! Please let us know your outcome.

drmind
drmind in reply to Darlenia

Akways wonderful to have everyone's support. I feel the love .

If you lnear a city with a medical school, go to their ER. I get frequent bladder infections and was at an ER in July where they did extensive labs and found that my GFR had dropped 4 points to 30, and my endocrinologist had to reduce my Metformin to avoid diabetic keto acidosis.

The only antibiotic that works for me is Levofloxacin which can have some bad side effects. I am now on 250 mg, twice daily, half the usual dose.

Bring current medical records and your own history. A hospital with a medical school will have a good web portal for communication if you can begin to see doctors there.

Some clearly differentiate between bladder and kidney infections, but the effects seem the same.

My university nephrologist orders loads of lab tests, but sometimes the urologist and and nephrologist disagree on who is responsible for me.

Thanks.....

Sending Prayers. Hang in there! keep doing ehat you were doing to bring your egfr up. Once infection clears, hopefully numbers will go right back up. GOD BLESS

drmind
drmind in reply to apopnj01

Thanks

Sending prayers....hope you feel better soon 🙏🏽🙏🏽🙏🏽

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