ANGRY!!!!!! Does not cut it tonight!'
Posted , 3 users are following.
Okay long story short....you will know from previous posts I've made here I was diagnosed stage 3b in November following bloods and scan. I've had three UTIs since then and GFR has gone down several times but recently back to 40 this week. Referred to renal consultant and when I did not receive an appointment I called to be told my referral had been rejected and a letter sent to my GP. After several hrs I managed to have a telephone discussion with my GP. He told me that the consultant had accessed my full medical records when considering my referral and concluded my levels did not evidence fast deterioration in line with previous levels over the years. He stated these levels were based on records from 1992, 2002, 2007 and 2011 when I was an inpatient with UTIs, renal colic and renal stones. He further stated the last baseline was in 2011 when my GFR was 52 previously 59 in 2007, which demonstrated my deterioration was slow and CKD probably likely caused by infection over the years. he took into consideration that my mum who died in 1999 at 55yrs with no understood reason for her failure may or may not be a genetic condition but did not feel this warrants biopsy at this stage on its own. What I would like to note is that my maternal grandfather and aunt had kidney disease, I would think that heightens the risk of a genetic condition.
so good news is that I now know that I've got slow deteriorating kidney function opposed to rapid that I first feared and that this will likely mean longer in this stage than I first thought I might be. However, the downside is that my medical records evidence I've suffered from CKD for at least 25 yrs with an average decline in my GFR of 2 per year. Good news I know but surely I had the right to have been told this at the time and definitely at the various intervals when I was hospitalised due to infection. This would have at least allowed me to take all preventative measures in preserving my limited function I had left. It would have prevented me from spending every night of the last two months fearing imminent failure and treatment as I believed I was in rapid decline. It would also have prevented the roller coaster of re grieving for my mum and MY HUSBAND who both died at 55 and I am currently 54 so you can imagine my head space in the wee hrs of the night. I would welcome your views of my situation and in particularly anyone who has similar deterioration levels and what it might mean for my future prognosis and stability. I should note I was also diagnosed recently with under active thyroid, will that escalate the deterioration? Janice
0 likes, 8 replies
helen54849 jan18127
Posted
Oh Janice,
This sounds terrible. I don't understand why they are not monitoring you, you know my story about have I was monitored every 6 months since the age of 13 then once my GFR dropped every 3 months (at your level) there more when required. I would ask your GP to insist you go and are monitored even if it is 6 months you are on their radar then. They should really take notice of any GFR that is dropping especially due to your family history. Your inefctions will damage your kidneys as I have explained before. I feel for you at the moment, and here is me thing that my team have been on my case all of my lfe, turns out I have been and continue to be very lucky. If they won't see you in the hospital it is time to put in a formal written complaint. You wan't reasons in writing why they are not going to see you, at least then you have their refusal in writing and if anything happens you can take further action. Please do keep on as you are obvioulsy quite rightly worried about this which will effect your blood preasure and your menatl well being. Big hugs xx
jan18127 helen54849
Posted
Thank you helen
i had a lengthy discussion with gp yesterday. In his referral to hospital he advised the consultant I was worried I had poly cystic as my daughter has the condition but omitted to state she inherited this from her late dad who died of the condition (I never believed that's what I had) incidentally he was and is my daughters consultant. So his reply is that from my scan I do not have the condition and as my mum never knew the reason for her failure there was no value in biopsy at this stage.,he asserts that it is more likely that my condition was caused by years of infections opposed to genetic condition. I've challenged them on two counts 1) I've been denied the right to know I've had Ckd all these years and the choice to make necessary life changes along the way to preserve the function I had left and 2) a biopsy is necessary in line with uk NHS guidelines for my levels.
My head is all over the place one minute I think it's good news that it has been slow decline and that indicates that I might have years opposed to months.....then I think there is no assurance of this with the frequency of my Utis and new diagnosis of under active thyroid that may impact also . Then there is the angry of being denied my human right to know I had a chronic illness all those years on top of being denied specialist assessment face to face.
Do do you think I could remain in this stage for a while in light of the above?
helen54849 jan18127
Posted
Hi,
I would employe the services of your local MP get them to deal with it on your behalf then you can give your poor brain a rest.
Regarding how long you stay at a stage for as much as I would love to be able to answer that question for you, I can't. Neither can the doctors or consultants, UTI;s don't do kidneys any good at all this I do know this. Do you know the cause of the infections?
jan18127 helen54849
Posted
Not sure of cause but yesterday GP dip tested urine said protein and blood in it indicating infection but result from lab today says no infection....I'm confused now!!!
Idive4fsh jan18127
Posted
Hello
I'm little confused with all the wait an the "acronym" "GP"
Is it something like a "PCP"?.
Here in Hawaii (U.S.A) stands for Primary Care Physician which means That, HE is your Dr the one you make all your appointments first (and have a long standing relationship Dr./Patient) I have been seeing my Dr. (the same one) for the last 12 years, His office does all the referrals (to see other specialist), test (X rays, ultrasound, blood) prescribes and refills all my medications etc..
I don't understand "THE WAIT" how come there is a "WAIT"? For appointments for so long? Here when my Gallbladder was acting up, I made an appointment on a Monday for that Wednesday, I was asked to get and ultrasound and a blood test the next day and was referred to the specialist next Tuesday. He recommended to have it removed (gallbladder) made all the appointmentsnecessary (for Pre-op clearance) while I waited in his office. When I left, I had everything schedule to include the surgery this upcoming Wednesday the 18th.
Keep in mind this is not private practice (P.C.P.) is State run at almost no cost.
Doctors should trust their patients to known their own body better. Make them listen to your concerns. Prevention is the best medicine. Act don't Re-Act, don't wait until is too late.
Remind them of their Oath:
"FIRST DO NO HARM"
jan18127 Idive4fsh
Posted
Thank you, I think the issue is the consultant wants the Gp (General practioner) to monitor me until I'm in next stage. I have challenged it.
helen54849 Idive4fsh
Posted
Hi,
Our GP is like your Dr, and there is a wait here as you pay for all of your medical care either by insurance or another way. We don't pay for our health care in that way. The people who work contribute to the system via something called national insurance contributions. As we have aquired a few extra people to our shores the system is a tad overloaded and therefore we have to wait our turn, the most urgent getting priority. That is the most politically correct and most pollite way to explain. However this seems to differ depending on where you live in the counrty also. We have different NHS's England, Wales and Scotland. I am in the Welsh NHS catchment group and I have been looked after and very well I have to add since I was 13 (I am 39 now) I was first diagnosed as I say at 13 and was monitored every 6 months without fail. More as my condition worsened recently. However I had a live kidney doner work up that took over two years where by my friend in England took 3 months so it is just the luck of the draw at the time. I had to have my transplant in England (I am native to there by birth) and I have to say the care I received there was more than questionable, it was a joke. I was glad to be transferred back to my own hospital as I have a say in my care, the options where possible are given to me and I get to decide in the end. My opinion is listened to and where possible acted upon (there are times when its not possible) but the fact I am involved means more. After reading posts on here I know everyone is not so lucky so for that I am very thankful. I hope this explains a bit more.
katejo11 jan18127
Posted
You have my sympathy. My situation is different but your experience struck a chord with me. I recently had a set of tests (nothing to do with kidneys) but the results printout claimed that I had CKD stage 2. This was complete news to me and I immediately raised it with my GP. On their records I don't but a routine blood test in a different hospital had labelled me as having the condition just because of the way they code routine blood test results. Last week I did see a nephrologist (separate referral to check reasons for haematuria after a UTI) and she has assured me that I don't have CKD. My readings were normal. I am puzzled as to why you can't see a nephrologist. If doctors don't tell patients about diagnoses, how are they supposed to modify their diets/behaviour. Also there is a problem if you buy insurance and don't declare a condition because you don't know that you have it?