Well first off, I want to thank you all for your kind thoughts and for keeping me in your prayers. I was really touched by the number of messages that I have received both at Multiply and at Yahoo. It would seem that all those kind thoughts and prayers have worked some magic. I will explain.
I had a very traumatic day. I spent the time before we left basically worrying myself into a real state. By the time we finally arrived I was petrified. The lady on the reception remembered that she had spoken to Coralie and knew I was nervous and she was very kind. she directed us to the ward.
When we got to the ward there were about 6 nurses all standing around, so we asked one of them if we could see the nurse in charge, Avril, who I had been told to ask for, as she is the one that spoke to me on the phone. One of the nurses went to fetch her but as it turned out, we never did see her.
The same nurse came back and took us into an office to go through the paperwork. We explained to her how nervous I was and she said what I had been told over the phone, that I should just have the ultra sound scan and X-rays done and then talk to the Consultant and he would probably say they would do a general anaesthetic. She explained that obviously that would mean coming back another day. She was pleasant and tried to be reassuring but I got the distinct impression that she was just doing her job, if you know what I mean. She said Simon could stay with me as I was in such a state.
We went first to the scan room. The lady there was lovely and she showed me my kidneys on the screen. From there we went to X-ray and the man there wasn't lovely as he wouldn't let Simon come in. Now this was just a matter of principal as far as I was concerned. I have had X-rays before so I am not scared, but they had said that Simon could stay and then he can't. He told us all the stuff about it being a radiation area, but they had lead aprons hanging on the wall, which is what I have been given to wear when I have had to take the children for X-rays. I think he was just being difficult. I was being "stroppy", but when I am scared and feeling vulnerable then I can get stroppy. It's a defence mechanism.
We then went back to the ward where we were shown into a waiting room until the Consultant was ready to see us. We waited and waited. During which time I worked myself up more and more until eventually, I think I was having some sort of panic attack. I felt like I couldn't breath, I was hot and felt sick, my heart was hammering. Several times I told Simon that I wanted to go and didn't want to wait to hear what the Consultant said. (I had already been told that everything seemed normal)
Just when I was on the point of running out the nurse came to fetch us. We had waited about an hour. Not good for a very nervous patient. If I had of decided that I could let them do it, the wait would have changed my mind. I was in a right state by now, hyperventilating with tears rolling down my face.
The Consultant turned out to be a very condescending, patronising and arrogant man. He gave us about 5 minutes of his time, during which he didn't even look at me and addressed all his comment to Simon. I may have been very distressed, but I do not see that as a reason to ignore me. He obviously thought I was a real nuisance.
He agreed that they couldn't do it without my permission and as I was so "upset" they would do it at a future date under general anaesthetic. Simon asked about intravenous sedation but they don't do that. He said it will be done at the Edith Cavell hospital, which is much better as it's only about a mile from our house. He also said that under general anaesthetic they use a rigid cystoscope rather than a flexible one and this will mean much more discomfort afterwards, with a longer recovery time and higher risk of infection. He then said we would get a letter. The impression given was that I will be bottom of the list!
Then he told us the results of the scan and X-ray which we had already been told. This is where it gets really bizarre.................. the results were NORMAL. No kidney damage. He also told us, before he ran off out the door, that the blood tests that I had done last week were normal too. Simon tried to ask him about this but he was just not interested, they were normal end of story, wait for your letter Re. the cystoscopy.
At that point he left. We were about to leave too, but the nurse said we had to wait for a copy of the letter that gets sent to my own Doctor. Simon asked how long it would be, as he wanted to get me home. The nurse said a couple of minutes. We waited. After a couple of minutes I could stand it no longer and left Simon there. I had to get out of that place. Of course when I got to the car, I couldn't get in as Simon had the keys! I ended up sitting on the kerb, balling my eyes out. I had 4 people come to see if I was OK! I felt bad about that. At least it proved that there are people who will try to help and not just walk by.
As we drove home and last night when I felt calmer, Simon and I talked about what happened as it seems very strange. They said my kidneys are normal. That is obviously fantastic news, but it opens up all kinds of questions. The original blood tests that I had done were the ones where they picked up the kidney disease. The test showed a filtration rate of 58%. My doctor had explained to me that chronic kidney disease is neither curable or reversible........and yet..............9 days later my blood test results are normal and other tests show my kidneys are normal. Now I know I have no medical training, but that doesn't seem to add up to me.
I am also questioning the necessity to do the cystoscopy at all. They say I need to have it done so they can make sure my bladder is OK. I have never had bladder problems. They say it's because your kidneys are linked to your bladder. Yes, I do know that! If you think bout it everything in your body is linked. The thing is, they thought I had a problem with my kidneys, they have now said I don't. I don't have bladder problems so why do they still need to look at that, especially when it is looking possible that my blood tests were wrong in the first place and maybe there never ever was a problem?
SO.............This is a saga isn't it! I wonder if any of you are still reading. I have to make an appointment next week with my own Doctor about what happens next and my blood pressure. I shall ask him about those test results and if I really need to have this thing done. I shall also ask how long the waiting list is as I have no idea if it is weeks or months. Up till now everything has been rushed through. The fact that I am now bottom of the list suggests to me, that they can't really think there is much cause for concern.
Once the appointment comes through I will decide for myself if I think it is necessary. I am not worried about it, as I will be out of it with a general anaesthetic, but if it's not really needed why should I go through all the discomfort and risk of infection afterwards?
The other issue is my blood pressure. When it was taken at the hospital yesterday it was sky high. They said that was due to my level of distress. When Coralie came round today she took it twice on her machine (she's a midwife remember, she knows what she is doing and has a proper machine) She took them 4 hours apart. The first was 152 over 100 and the second time it was 138 over 92. I know they are not totally normal, but they are not astronomically high like they are when the Doctor or hospital does it. That second one would just about be acceptable. They wouldn't give you medication for that.
I am still not convinced that there is a problem there either. I think I get so anxious around medical people that it raises my blood pressure. I think it is a different story when I am at home and not stressed. If you had seen the state I was in at that hospital, it would be easy t o see why my blood pressure was so high. So, Coralie is going to check it when she comes round and I am probably going to purchase a small model for myself so that we can take a daily reading when I am at home. It will be interesting to do that over a few weeks , to see what happens; then I could show my Doctor.
I feel like I have been typing up this saga all evening! Anyway, to recap, the good news is that it would seem my kidneys are fine. I just need to try and get to the bottom of what exactly is going on and sort out my blood pressure. Once again thank you to everyone who was thinking of me. Apologies this was so long!
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