GFR drop

Good luck!

I've had a different test every day for the last 3 days, and now tomorrow I'm seeing a urologist for what I hope will be the last test. I don't have a kidney stone but I do have something called hydronephrosis caused by a blocked ureter. I hope the test tomorrow will show what is causing the blockage. I am really happy with my PCP and how quickly he is moving this testing along.

Kathy, I feel for you and know more than anyone how you are feeling right now - I have a suspected bladder tumour. The consultant I saw last week seemed so confident that the grey area showing on the ultrasound of my bladder is a tumour that he has recommended bypassing the usual initial cystoscopy and going straight in under a general anaesthetic and dealing there and then with whatever is found. Really unnerving as I don't know what to expect when I come round. I have only a sole kidney with just 38 eGFR. Today I've received the appointment for the pre-op on 5th June. It's all so long-winded and I just so wish I could get it over and done with so that I can know what I'm dealing with and get my head around it. No doubt you feel the same. If I had more time I would get a private appointment for a second opinion at a London hospital. I asked a GP on Thursday if she could recommend someone, she said she would ask around her colleagues as she is new to the area. Said she would contact me later but she hasn't and it's Bank Holiday weekend! Aargh! Hope all goes well for you Kathy.

Thank you, MrsO. My husband had bladder cancer over 15 years ago, had surgery to remove the tumors and that was the end of it. He's never needed chemo or had a recurrence. It has to be especially scary when you only have one kidney. The urologist is hopeful they can just cut out the growth and sew the ureter back together, but said if not they will have to remove the ureter and the kidney. Fortunately my other kidney is fine. I too wish they would just get it done. Waiting is the hardest part for me.

I so agree, Kathy, this waiting hs to be the worst part surely.  Thank you so much for your reassurance following your hubby's experience with bladder cancer - I'm so please to hear that he is doing well so many years later and I do wish you continued good health.  Now perhaps I can reassure you if, in fact, it should become necessary to remove your kidney - I had my right kidney removed over 60 years ago and it proved a lifesaver for me as I was restored to perfect health after a childhood of sickness.  Remember, too, that surgery has come such a long way since then, especially with kidney removal - no longer left with the huge scar as years ago.  I was just recently speaking to someone who had her kidney removed with keyhole surgery.  Lots of good luck wishes, Kathy - we'll have to come back and compare notes!!      

So sorry to hear about your problems Mrs O and Kathy.  I agree that the hardest part is the waiting.  I hope that you will both manage to keep strong and that there is a happy outcome for both of you.  There is a psychological theory concerning monitors and blunters.  Blunters do not want to know too much about their illnesses, don't go to the doctor very quickly, don't carry out their advice and don't worry too much about their health. As a result, they are likely to do less well than monitors but are less anxious.  Monitors on the other hand, want to know as much as possible about their illness, go promptly to the doctor when they have symptoms and comply with their treatment.  They do much better than blunters but pay a price of anxiety.  Good luck to both you monitors! (I am one too!)

Bless you and thank you, Lyn - I'm blaming my BP pill, Losartan, but that's the "monitor" in me I expect!

I'm absolutely an anxious monitor and my husband is an "it is what it is" blunter. I have a biopsy scheduled in two weeks and should find out the results later that week. I'm just glad something is scheduled.

I hope it goes well and you and that thegrowth is not malignant or can be completely removed. Good wishes.

Kathy, I'm sure not what you wanted to hear but, if you're anything like me, you will be relieved to at least finally have a definitive diagnosis and a treatment plan so that you can come to terms with what you are facing rather than worrying about the unknown.  Have they given you a date for the op?  Reassuring to hear that the doctor is "hopeful" of a successful outcome with no further treatment, so hang on to that fact.   Also, I remember you telling me that your hubby had bladder cancer years ago and he recovered without further treatment - so another positive to hang on to for you.

I had my op 12 days ago during which they said they removed a "small polyp" from my bladder, adding that if it was cancer they were hopeful of it being a treatable one.  They also mentioned that my bladder entrance is narrow, adding that that also could be a reason for the non-stop UTIs over the last 5 months.  I have just received an appointment for follow-up on 4th July when the biopsy result will be in and any treatment plan will be discussed - trying to keep my fingernails intact with all this waiting!   Have had two emergency appointments with kidney consultant through all this, firstly because it was discovered at pre-op that my sole kidney function eGFR had suddenly plummeted from 38% to 28%.  Consultant reassured me that it was due to the course of Trimethoprim I had just completed and that the function was starting to turn around again.  However, since then the Urologist had to put me on another AB following surgery and because of my terrible side effects to so many medications, it has to be Trimethoprim.  I dread to think what my kidney function is at present but the kidney consultant told me not to let anyone do a blood test for at least 2 weeks after stopping the Trimethoprim as it would send everyone into panic as it did at my pre-op.  I did start to feel very nauseous for a few days so I guess that was due to kidney function plummeting further downwards, but the Trimethoprim course finished a week ago, and nausea cleared 3 days ago so I am crossing fingers that my kidney is slowly on the way back up towards its stable 38%.  Don't know which to be more worried about, the kidney function or the bladder biopsy result - you will know the feeling!

All the very best in the world to you, Kathy - good luck with the op and do come back and let us know how you get on.x  

Kathy, again, this is obviously what you didn't wish to hear but it sounds as though they are doing belt & braces stuff to be sure of getting the cancer all away. Now, you wouldn't be human if you didn't feel scared - I would feel exactly the same, but, as I said before, please try not to worry about having to have the kidney removed - if it means stopping any cancer spread then it is good that it is in an area where it is confined and where it can all be taken away. You can live well with just one kidney - I am testament to that after more than 60 years of doing so.  The other kidney will adjust and take over the work of the two. Have they said if they can do the whole surgery with keyhole?  If so, then it should mean a faster recovery time.  I don't know whereabouts you are but, if in the UK, you might like to get in touch with the National Kidney Organisation who will be able to reassure you further and may even have a forum where you can speak with others in a similar position - a problem shared is a problem halved, as they say.  Apart from that, if it was me, I would try and ensure that I was under the care of the best person possible. 

Thank you for asking about my latest position.  I had my latest kidney function blood test yesterday.  I now have to ring the renal consultant's secretary this morning who has promised to get someone to call me back with the latest news about whether the function is starting to pick back up to some sort of stability after the latest course of antibiotics.

Thinking of you Kathy and sending a virtual hug.  I hope you get the op over and done with soon - the waiting is the worst.    

Very sorry to hear your news but glad that the uncertainty is over. Do letus know how you get on.  I will be thinking of both you and Mrs O but I cansee from your emails that you both have fighting spirit and hope that you will get through this safely.  All good wishes.

I have been away but hope that you got better news regarding your kidney function. What you and Kathy are presently going through is very frightening but uncertainty is worse. I know that you are a very strong person and have seen many of the helpful replies you send to others.  I hope that knowing that a lot of us are thinking of you will help.

Hi Lyn and bless you for your support.  I'll let you know more after my operation follow-up appointment tomorrow, but things are looking BETTER!  I do so hope Kathy is ok and that things are moving fast for her so that she can get on the road to recovery. 

Hi Lyn

?I promised to update you after you kindly posted asking for news. The"grey area" on my bladder turned out to be a benign polyp.  Phewee!  That was the longest 8 weeks of my life.  I'm blessed to be one of the lucky ones and I wish that could apply to everyone going through anything similar.  At my operation follow-up appointment with a member of the urology team, he decided to speak to the lead consultant overseeing my op to decide whether to have me back in for a further check at some time.  He has now telephoned to say that they will do a cystoscopy under local anaesthetic in 6 months time just to check nothing has grown back and that the area has completely healed.  They found that the entrance to my bladder was narrowed so dilated it saying that the tightness may have been the reason for all the UTIs over the last 6 months.  They gave me a further course of Trimethoprim immediately following the op and I'm pleased to say that although that caused an alarming reduction in my kidney function with the subsequent increase in creatinine, the eGFR has now increased back up as far as 37% (it was 38%) and the creatinine has decreased from 160 back down to its previous level of 122 - somewhat above normal due to Losartan.  The latter appears to be causing me problems as I now have a return of all-over body itch and rash that I had within 6 months of Doxazosin being added to the Losartan last year.  A skin biopsy pointed to the Doxazosin which was stopped and the itch disappeared, but the Losartan was then doubled from 50mg to 100mg (split twice daily).  Now 6 months down the line, I fear the doubled up dose of Losartan is joining the line of a whole host of blood pressure medications that my body is unable to tolerate.  With GP's agreement, I reduced the Losartan back down to 50mg 3 days ago but so far no relief in the itch.  If it doesn't improve and I can cope with it until 4th August, I then have an appointment with my renal consultant who is the person involved in treating (or trying to treat!) my blood pressure.  What a challenge I must be to him.  The GP has prescribed some Fexafenadine to keep alongside in case the itch becomes unbearable but I'm also taking antibiotics for a very nasty swollen and red index finger which is believed to be the result of an insect bite so I don't wish to add in the Fexafenadine as well if I can help it.   Apart from that, I'm fine!  I do so hope that Kathy is alright - hopefully, she will post and let us know.  Meanwhile, Lyn, we'll all battle on on here and hope we all have guardian angels on our shoulders.