Still here.

[fartikins]

I have been to my appointment this afternoon and I am still a bit shellshocked. My ultrasound showed as clear but the biopsy showed really bad damage to my left kidney. He wasn't sure what was causing it but it wasn't diabetes - it is either kidney infections or high blood pressure. My water sample showed yet another infection so now I am on another course of antibiotics. My gfr is holding at 17 - we spoke about dialysis but in the meantime I must keep my blood pressure stable at around 130/80. I realise that if I can't hold these two things that is the route I will have to take. Gosh when I went in to see him my bp was 180/100 but I just get so anxious about this. So I will be having 8 week clinics with a blood test beforehand to see what is happening. But here in the UK I cannot get a blood test - he wants one done straight away - no spaces until the end of April - GP appointment means a place in the Q for 8.00am to grab a spot - why does it have to be so difficult. I have the more and father of all headaches now - hopefully will be better tomorrow - thanks for reading

[Bassetmommer NKF Ambassador]

Oh dear, let's take this slow... first just breathe. We got this. So the test show previous damage. Not much to do about that. There is some evidence research saying that the kidney can regenerate, but not so sure about that. The BP is a big deal. Your current headache is the result of your BP being very high and then coming down. A raise in BP is terrible for kidneys so we need to keep you calm. My BP goes up when I am at the doctors as well. Very common. Its called White Coat syndrome. So do all you can to keep you BP low. Ask about the medications you are on because some are really good for CKD and others are not. Having things checked will verify if the GFR is stable and not dropping. The good news is that you can do well with a GFR of 17. There are tons of us with low GFRs who are doing quite well in fact. I am in no rush to get on dialysis, so I work to stay with what I have and try to not have declines. We can help you with ideas and suggestions. Next time you see you GP, have him/her review your medications. Make sure that the antibiotic is not nephrotoxic...which means it can cause harm to the kidney.

[lowraind in reply to Bassetmommer]

I have found that if they wait to take my blood pressure until they have done all the other procedures, my bp is lower than if the take it after they rush me to the scale and then rush me to the room. Also, some assistants do not have the arm at the correct level (Your arm should be at the same level as your heart.).

[Bassetmommer NKF Ambassador in reply to lowraind]

I do the same thing. I have them also do it manually and not with the machine which always comes up with a higher reading.

[nellie237]

" But here in the UK I cannot get a blood test - he wants one done straight away - no spaces until the end of April" That is just dreadful, you shouldn't have to wait that long.

I'm in Hertfordshire and don't get blood tests at the GP surgery. My GP sends me the blood form by text, I print it, and then just walk in at the local hospital path lab anytime before 4:30pm. The queue can be a bit long early in the mornings, but they have more phlebotomists then. At 4pm I can be in and out in 5 mins. Maybe you should make enquiries to see if this is available in your area.

[drmind]

Just as Bassetmommer said "we got this" and "breathe." You also got very good advice from nellie237 about getting quick lab results as well as finding out if your antibiotic is safe. As difficult as it may sound, the #1 thing you have to do is not get overly stressed as that will effect your BP. Keeping busy will help keep your stress in check. And, I'll add watch your diet and keep drinking your water.

Glad you feel comfortable sharing with us. Keep it up. Theres a lot of people here who are in the same boat and understand.

[fartikins in reply to drmind]

Thanks for your kind reply

[drmind in reply to drmind]

You're always welcomed. BTW you seem alot less stress these days. Talking seems to help, doesn't it? Stay as calm as you can and keep busy. Keep us posted. Best always and remember...you got this.

[fartikins in reply to drmind]

Thank you for your kind thoughts

[PecanSandie]

I have something to say about "white coat syndrome". My blood pressure was always high at the doctors office and I (and some doctors) attributed it to fear of being at the doctors office and for the flurry of activity that takes place between the waiting room and getting the blood pressure cuff put on. However, my PCP was always skeptical. but I was in denial because I did not want to believe I needed more BP medication. I'd show her my blood pressure logs, which showed good blood pressure, but of course I took my blood pressure, sitting on the couch watching TV, and so it would be difficult for it not to be normal.

One day I had to go in for a thyroid biopsy and my blood pressure was so high that they couldn't do the test and sent me home. Mind you I was on two blood pressure medications at the time and it was still high. Clearly what I was taking was not enough. I called my PCP and said that she needed to prescribe enough medication that my blood pressure would be normal under all circumstances. So she doubled my dose of amlodopine, and half-doubled the metoprolol.

And finally, after all these years, I could go into the doctors office and NOT have high blood pressure (last time I was at the doctor I was nervous and my reading was 120/80 !) And my eGFR started rising after my blood pressure was finally under control (I went from 37 to 41 at the last test). I can now take my blood pressure after physical activity and have it be normal.

I will be honest. I HATE the fact that I have to take so much BP medication but I feel it's a small price to pay for seeing that 120/80 at the doctors office.

[fartikins in reply to PecanSandie]

Hello - thanks for that - I may have to have either a change of medication or another one added. Its something I can't seem to control.

[horsie63 in reply to PecanSandie]

I'm on three different BP meds and mine is typically 112/85 it's the bottom number I can't get lower. I'm a small person (about 92 lbs) so am on the lowest dose possible. The one Losartin at any higher dose causes my potassium to be too high. I used to do ultramarathons but for the last 2 years I've been too tired to do much of anything but go to work and then come home. My eGFR is 22 as of Mar, my next appt is in Jun and if it's below 20 then I can get evaluated for a transplant. I'd like to avoid dialysis but may have no choice if the wait is too long.

[PecanSandie in reply to horsie63]

I was on Losartan/HCTZ and when my eGFR got to 33, my doctor changed my BP medication to Metoprolol. I don't know whether it was the Losartan or the HCTZ was causing my plunge in eGFR (or maybe neither) but since I stopped the Losartan/HCTZ, my eGFR is up in the low 40s now.

Your bottom number appears to be within guidelines. Why do you want it lower?

[horsie63 in reply to PecanSandie]

I know my nephrologist has said as long as it's 140/90 it's okay but the biopsy seems to have indicated HBP was the cause of my kidney damage and I'm trying to get it under 120/80 so there's no heart problems in addition to the kidney. I know kidney damage can also cause HBP so it's just a vicious circle.

[fartikins in reply to PecanSandie]

Hello - I have been taking 75mg Losartan for 15 years now and indeed my recent biopsy indicated that HBP may be the cause of the kidney damage. I am not sure whether a change would be beneficial but sometimes I struggle to keep BP within the 140/90 range. It is up and down like a yoyo and I can't seem to keep it stable.

[Serlo92]

Hang in there 🙏🏻 My prayers to you and every patient out there. You can do it

[fartikins in reply to Serlo92]

Thank you for your kind reply.