Today I have been to see Dr Barton at Orsett Hospital, I have also met "Nurse Sue" and the dietician.
We talked about the symptoms I have been experiencing. One unusual symptom in particular, pins and needles! On Sunday, I had a terrible onset of pins and needles, it started in my tongue and around my mouth, then progressed across my face, down my neck and then my left arm. It was a horrible feeling, but apparently it was set off by anxiety!
The itching and tiredness are a direct result of my kidneys. I have been prescribed some cream to help with the itching and some tablets if the cream does not work, as for the tiredness... well, nothing to be done, but hopefully the cream to help the itching will stop me waking at night, meaning I am getting proper sleep so hopefully, feeling less tired.
We briefly spoke about dialysis and the differences between Peritoneal Dialysis and Hemodialysis. Dr Barton said, if he was a kidney patient, he would go for Peritoneal Dialysis (PD) first then on to Hemodialysis (HD) afterwards. He did explain why, but my mind is a bit of a blur at that point!
After talking about dialysis, we touched upon transplantation. It was discussed that someone with a different blood group could still be a living donor, as they would do something with my antibodies, again, can't remember all the jargon, by this point I was just nodding and smiling like the Churchill dog! "Oh yes!" If I was to get a living donor, they would look at starting the process now, as it is a very long drawn out affair. My next clinic appointment is in 6 week and he said he would do the referral then, I am not entirely sure of the process, but I will soon find out!
During the appointment nurse Sue came in for a chat, she was lovely. I now have to wait to get an appointment to see her to discuss all my options about dialysis and such like. It is all a bit overwhelming!
After speaking to the doctor and the nurse it was then on to meet the Dietician! I have been advised that I can have 55g from protien and have to limit my potassium intake (although my bloods were OK, prevention is better than cure and better to be on top of it from the start!) I am also now limited on how much dairy and eggs I can have, and I have to make sure I eat 1600 calories a day!
So there we have it! Next stop, seeing nurse Sue!
Monday 29 April 2013
Thursday 18 April 2013
The Harsh Reality
My previous two posts have now brought us right up to now! Thursday 18th April.
This week has been a massive wake up call to a harsh reality!
So my appointment on Wednesday did not go how I expected it to. On the Monday evening I had another blood test done so it could be compared with the one done on Thursday the previous week. I was really hoping that the Thursday's results were wrong, a fluke, a mistake, a rouge number just messing with my head! But that was not the case!
I was so pleased to be seen by a doctor that has followed my care from since I was pregnant the first time, he knows me, my situation and what I am like at receiving news. Not that stupid doctor from December.
We discussed my results and he just looked at me and said "You know we are looking at progressive kidney disease don't you?" I just smiled and choked back the tears. He asked if anyone had ever done a graph of my results, which they had not. So be began to look through my blood tests from 2007 and dotted them down on a chart. It did not look good, you could very clearly see the downward path my results were taking.
He has said that based on the trend he was looking at, he estimated I could end up with End Stage Renal Failure within the next 4 - 5 years or so. He did stress though that was based on historical readings and there is a slight chance with extra close monitoring that could be prolonged and it is not set in stone. But also that it could go one way or the other.
So there it is... the 10+ years I was originally told, has literally been halved! We started discussing living donors as my husband has been very keen to know whether he is a match or not. It was discussed that if my husband was a match, or I was able to get another living donor they would look at a preemptive kidney transplant in the next couple of years. I am not really sure how I feel about a living donor, it is such a huge thing and so many risks. This is something that will need a lot of thought.
My care has now also been transferred to a more specialist clinic, known as a Low Clearance Clinic (please note the link it not for the clinic I am attending, but some general information on what a low clearance clinic actually involves) My next appointment is Monday 29th April, I have to have another blood test before and I also have to monitor my blood pressure.
I have been so up and down the past two days, feeling it is not fair, why me. I am eating healthy, I exercise, I am trying to do everything right, but it all seems like it has backfired!
I know I have a long and bumpy road ahead, so... Buckle me in and let the journey begin!
This week has been a massive wake up call to a harsh reality!
So my appointment on Wednesday did not go how I expected it to. On the Monday evening I had another blood test done so it could be compared with the one done on Thursday the previous week. I was really hoping that the Thursday's results were wrong, a fluke, a mistake, a rouge number just messing with my head! But that was not the case!
I was so pleased to be seen by a doctor that has followed my care from since I was pregnant the first time, he knows me, my situation and what I am like at receiving news. Not that stupid doctor from December.
We discussed my results and he just looked at me and said "You know we are looking at progressive kidney disease don't you?" I just smiled and choked back the tears. He asked if anyone had ever done a graph of my results, which they had not. So be began to look through my blood tests from 2007 and dotted them down on a chart. It did not look good, you could very clearly see the downward path my results were taking.
He has said that based on the trend he was looking at, he estimated I could end up with End Stage Renal Failure within the next 4 - 5 years or so. He did stress though that was based on historical readings and there is a slight chance with extra close monitoring that could be prolonged and it is not set in stone. But also that it could go one way or the other.
So there it is... the 10+ years I was originally told, has literally been halved! We started discussing living donors as my husband has been very keen to know whether he is a match or not. It was discussed that if my husband was a match, or I was able to get another living donor they would look at a preemptive kidney transplant in the next couple of years. I am not really sure how I feel about a living donor, it is such a huge thing and so many risks. This is something that will need a lot of thought.
My care has now also been transferred to a more specialist clinic, known as a Low Clearance Clinic (please note the link it not for the clinic I am attending, but some general information on what a low clearance clinic actually involves) My next appointment is Monday 29th April, I have to have another blood test before and I also have to monitor my blood pressure.
I have been so up and down the past two days, feeling it is not fair, why me. I am eating healthy, I exercise, I am trying to do everything right, but it all seems like it has backfired!
I know I have a long and bumpy road ahead, so... Buckle me in and let the journey begin!
The build up
On the 5th December 2012 I had a routine appointment with my renal doctor. My GFR was 32 Stage 3, which is has been around that number for a while. Nothing was unusual about this appointment, just a bog standard, go in check my blood and urine test, quick chat and then home. However, I did actually ask at what stage do they start to discuss the future, ie transplants etc. To which he said "Oh not until you reach stage 4, but you are a long while off that yet, so don't worry about it!" Happy with that I left and carried on with my day.
I had my next routine appointment booked for the 13th March 2013 but the clinic was cancelled due to holidays and a shortage of doctors, they rescheduled my appointment for the 3rd April, which being a childminder, during the school holidays and having 4 children was most definitely not convenient. I called back to rearrange the appointment but could only get 22nd May!
I woke up on Tuesday 8th April and did not feel right, my legs were so itchy, I was so exhausted and something just felt so wrong. On Thursday 11th I was watching Daybreak and they were talking about the donor register. A man came on to talk about his Kidney Disease, getting a donor and how he was told he had 10 years, but in actual fact his Kidneys failed within 3 years. With that I called up my GP and asked if I could have a blood test to check my kidneys as my routine appointment was so far away. Given my condition and symptoms they were very happy to oblige. I collected the blood form on Thursday evening and then went straight to the hospital to have my blood test done.
I knew full well they would not have the results until after the weekend, so had in my head I would call them Monday, late afternoon or Tuesday morning. At 8am on Monday 15th, the phone rang. "Hello, Mrs Reed. This is Dr S. I am calling about your results!" I remember thinking, this cannot be good!!
My GFR reading had taken a huge dive from 32 in December to 25! STAGE 4!! The stage at which the doctor in December said I was a long way off! This could not be right, it had to be a wrong reading! I called the renal team at about 9.30am and explained about my symptoms and the blood test results. By lunchtime I had a call back, they had made an urgent appointment for Wednesday 17th.
The History!
Hello, my name is Emma. I am 28 years old, married with 2 children. I have Chronic Kidney Disease (CKD)
It all started when I was very young, I kept getting Urinary Tract Infections and my Mum was constantly told I had cystitis. One day a doctor said that a child of my age should not be getting reoccurring cystitis and sent me to have a scan of my kidneys. The scan showed I had severe scarring on my kidneys due to reflux and at the age of 5, I had an operation to correct it.
I do not remember much about that time, just little snippets here and there. After the op everything seemed to be fine and I got on with growing up healthily and happily.
Then in early 2004 I went to the GP to have my contraceptive pill check-up. My blood pressure (BP) was high so the doctor arranged for me to go back the following week so it could be checked again. It was still high (I cannot remember the numbers, but it was high enough for concern) I was then sent for some blood tests.
I was referred to the renal team and Scunthorpe General Hospital for them to investigate. However, I moved to Essex in August 2004 so had to get everything transferred down to The Hassengate Medical Centre here in Stanford-Le-Hope. I made an appointment and saw the GP to explain my situation and my raised BP. He asked me if I smoked, which I did at the time, he snorted back "There is nothing wrong with you, stop smoking!!" I was gobsmacked! He was not interested in hearing about my kidneys whatsoever.
In May 2005 I fell pregnant and explained my previous kidney operation with the midwife, I was classed as high risk and was monitored very closely during my pregnancy. I was put on BP medication but unfortunately at 37 weeks I developed pre-eclampsia and was induced.
I was seen by the renal team after my pregnancy and monitored. In 2008 I fell pregnant with my 2nd child. Thankfully that pregnancy was a lot smoother kidney wise. After my son was born I missed two appointments with the renal team so they cancelled my care with them. It was very stupid of me, but life sort of got in the way, my youngest son needed an operation so my health took a backseat.
In August 2010 I was starting to feel a bit poorly so went back to the GP, had some blood tests and was referred back to the renal clinic. In my stupidity and not keeping up with appointments and medication I ended up with stage 3 kidney disease. My eGFR was 42.
Since then I have been really good, I have made every single appointment and kept on top of my medication. However, things have slowly been declining. I was told that I would be looking at, at least 10-20 years before reaching End Stage Renal Disease. Unfortunately that does not seem to be the case now!!!
It all started when I was very young, I kept getting Urinary Tract Infections and my Mum was constantly told I had cystitis. One day a doctor said that a child of my age should not be getting reoccurring cystitis and sent me to have a scan of my kidneys. The scan showed I had severe scarring on my kidneys due to reflux and at the age of 5, I had an operation to correct it.
I do not remember much about that time, just little snippets here and there. After the op everything seemed to be fine and I got on with growing up healthily and happily.
Then in early 2004 I went to the GP to have my contraceptive pill check-up. My blood pressure (BP) was high so the doctor arranged for me to go back the following week so it could be checked again. It was still high (I cannot remember the numbers, but it was high enough for concern) I was then sent for some blood tests.
I was referred to the renal team and Scunthorpe General Hospital for them to investigate. However, I moved to Essex in August 2004 so had to get everything transferred down to The Hassengate Medical Centre here in Stanford-Le-Hope. I made an appointment and saw the GP to explain my situation and my raised BP. He asked me if I smoked, which I did at the time, he snorted back "There is nothing wrong with you, stop smoking!!" I was gobsmacked! He was not interested in hearing about my kidneys whatsoever.
In May 2005 I fell pregnant and explained my previous kidney operation with the midwife, I was classed as high risk and was monitored very closely during my pregnancy. I was put on BP medication but unfortunately at 37 weeks I developed pre-eclampsia and was induced.
I was seen by the renal team after my pregnancy and monitored. In 2008 I fell pregnant with my 2nd child. Thankfully that pregnancy was a lot smoother kidney wise. After my son was born I missed two appointments with the renal team so they cancelled my care with them. It was very stupid of me, but life sort of got in the way, my youngest son needed an operation so my health took a backseat.
In August 2010 I was starting to feel a bit poorly so went back to the GP, had some blood tests and was referred back to the renal clinic. In my stupidity and not keeping up with appointments and medication I ended up with stage 3 kidney disease. My eGFR was 42.
Since then I have been really good, I have made every single appointment and kept on top of my medication. However, things have slowly been declining. I was told that I would be looking at, at least 10-20 years before reaching End Stage Renal Disease. Unfortunately that does not seem to be the case now!!!
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