Medical Report
I try to avoid talking about illness. Heaven knows very few of us get through our lives without being touched by it because our family or loved ones are affected or ourselves. I would not presume to say that one person's illness is worse than someone else. To them it is the cross that they have to bare. If someone is in pain, physically or mentally only that person can feel it individually. For them that pain may be unbearable and their threshold has been reached, for someone else that same amount of pain may be tolerated or lived with. Some conditions are not painful just a nuisance as they get in the way of you having a normal life.
I have someone who has a list of medical problems that even one would be enough for me. Yet she still does all that she can to "Get On With Life!" and is thinking of others and gets pleasure from the simplest of things such as the birds that visit her garden, her pets and so on.
The reason for this post is to I hope make some of you take greater care of yourselves. I don't feel anxious(perhaps I should)then again being calm is perhaps a way of coping with something that could become something but hopefully will not or at least not for a few more years to come.
If you do not wish to read about illness, please wait for another subject that I will blog in a few days time. If any of you have read some of this before, please do not read and become bored :-) Some friends already know the situation.
For some of you, it could be a warning and just may stop you getting something that can be avoided or treated so the condition is controlled and becomes no worse or with luck reversed.
I have always eaten reasonably healthy, been reasonably fit and could count how often I saw a Dr on one hand. Then in 1997 for some reason but not enough to cause me concern I noticed that when I put my shoes on in the morning after getting out of bed, they felt a little tight. But so what!
I cannot say that I particularly noticed my weight was increasing or that maybe I was falling asleep too easily when sitting in the armchair. But hey, I'm getting older and well aren't you supposed to fall asleep when watching the television?
And then(and some guys would love this)I found that my penis was larger than normal. This was late at night as I was getting ready for bed. Nothing more exciting than a bit of oedema(A fancy name for water retention)I rushed to the local hospital's emergency dept and was given some tablets and told I probably had an allergy and to see a Dr at my surgery. Things were still not right the next morning and being the weekend they only did an hour on a Saturday morning. That doesn't happen these days. The Dr on duty found it amusing.
Anyhow, I managed to see my own Dr later in the week and the symptoms were taken away by water tablets. The condition would keep coming back. I was due to go on holiday but the thought of taking ill whilst away and worry about it anyhow, the holiday was cancelled and I stayed.
My Dr decided to find out why things were getting no better as he called to see me and my legs were solid and like tree trunks and had a hospital consultant call at my home and that same day I was rushed into hospital. Due to a lack of beds I stayed in the local hospital until there was a bed made available for me at a larger hospital that dealt with...Kidney Complaints.
To cut the story short...for some reason, my blood had gone thick and sticky, blood pressure was raised and my kidneys were inflamed. Was it caused by a virus or bad luck...who knows. I was not off my food, my colouring looked fine and anyone seeing me would not have any idea just how ill I was. I had lots of blood tests every day, was put on a course of aspirin to thin the blood, water tablets to try and get rid of the excess water being retained.
Once in the larger hospital a biopsy was taken and during that time I was so frightened. Some of the water was disappearing from between the tissues and muscles in my body and what was left just felt like strange lumps.
Well, I was sent home and then called back to see the consultant with the results and diagnosis. I had Nyphrotic Syndrome. But I now believe it to be Membranous nephropathy(inflammation of the kidney)
All being well, it could improve and correct itself. But I was to be monitored over the months and tested regularly.
All was well for perhaps a year or so and then one consultation the chairs were placed differently when I entered the room and the Consultant was not sitting behind his desk, some bad news was coming. My consultant told me that my condition was deteriorating. He could sit back and see what happens or take action but what?
1. Do nothing.
2. There was a study being done and I could take part but I would be offered either no treatment, a placebo and/or some type of medicine.
3. Take the treatment my own Consultant had tried with patients and had success with. Obviously, there would be side effects and I had to sign a waiver.
So I was put on three weeks worth of steroids by drip feed in three days! And then had to take 10 x 5mg
of Prednisolone steroids daily plus 2 x 50mg immune suppressant tablets(usually given for people who have had transplants)normally given to stop the body rejecting organs.
The steroids had two noticeable effects, my head looked like a massive football or one of those helium filled balloons you see at the fairground and my lovely little tummy(no middle age spread)became large and caused stretch marks.
Since 1998 or thereabouts I was on this treatment and the condition has been controlled. In the last 2-3 years the medication has been reduced and for perhaps the last year all I am taking is one blood pressure tablet.
During the worst of this illness I was forced to attend a medical assessment(even though I had filled in long detailed forms and had the support and additional information from my Dr and Consultant) as to whether you are fit for work and passed fit even though my energy was easily sapped and dialysis/transplant was a distinct possibility. Much later if it had not been for help from an organisation that advises the public how to proceed and attending a second test that was in my favour, I am not sure where I would be.
So the condition is controlled but either the condition or the treatment has impaired my mobility and I now require a cane to walk with and try and get in and out of chairs and I cannot walk very far, if I try to do something a bit strenuous I'll pay for it later.
Now what are the symptoms? Well, very little at all so can I tell you how important it is to get your blood pressure taken reasonably regularly otherwise by the time you know something is up, the damage may be done. Water retention certainly a sign of danger. And here's a little clue that may mean trouble...a little froth when you pass urine but as I said at the time...who goes around comparing urine and who would think such a symptom unusual?
Does diet affect matters? Well, I was told by the Consultant and Hospital Dietician...no! But then again, if the kidneys are damaged and/or susceptible to failure eating lots of meat is not advisable because there is too much protein to cope with so small amounts rather than a big juicy stake is advisable. Having said that diet does not play a part, this can be contradictory advice because this condition is particularly rare in the Mediterranean where they eat lots of Vegetables, Olives, Seafood, Tomatoes etc...so perhaps diet does play a part.
So why am I going on about this now...I had my regular check up about a month ago and was told that all was well. And that I do not need to be seen until middle September. If there had been any problems spotted via the blood test, urine sample etc...I would be called back in and treatment would be started(I understand...)and hope that if treatment is commenced the condition can be slowed down again or controlled and the suggestion is that I would be on the drugs for a less period of time.
It was arranged that I get a blood sample taken in July(at my Dr's)and then another when I see the Consultant in September. But out of the blue this week the surgery rang to say that I was expected for a blood test. What? I thought it a computer error. So I cancelled it but saw my own Dr today.
Now here's something I did not know(In one way its good that I do...in another way perhaps not)My last blood test was not as good as it could have been and for the first time I was told that its been creeping towards unacceptable levels of createnine for some time. The graph looked alarming but I was assured otherwise but they are watching things...just in case. The reading was 120 micromoles per litre of blood.
Thanks to a genuine site on the internet I do not feel quite as apprehensive because with or without treatment I have found out that someone with good kidney function is roughly given a reading of between 60-120. And its only when you have a reading of 350-600 that you are approaching dialysis. And though a rough guide this suggests that I have approx 75% kidney function.
Ethnicity can affect results, People of Black African Origin can on average have a higher level of createnine but the biology of that race would mean though giving a higher reading they would actually have completely normal kidney function. Also the USA uses a different form of measurement with different readings.
If it continues its back on the treatment but hopefully not for as long. And please God it works.
So I was told by my Dr...Blood tests cost "Pennies" and he is happy for me to have them as often as I wish to monitor the situation and take any action necessary sooner rather than later. You could say its a pity that I have not been told the results were slowly getting worse but maybe that would've perhaps worried me more. So maybe ignorance is bliss.
When you read what a kidney does and all its functions, my goodness what a miracle of biology it is.
So though this is a posting explaining my condition...I am also giving you the chance to be checked out and avoid similar problems happening to you so watch for the symptoms but best of all please have your blood pressure checked. Its amazing how much damage high blood pressure can cause.
You know what? This looks worse when its written down than living through it but remember there is almost 9 years squeezed down here into a page of text.
I have someone who has a list of medical problems that even one would be enough for me. Yet she still does all that she can to "Get On With Life!" and is thinking of others and gets pleasure from the simplest of things such as the birds that visit her garden, her pets and so on.
The reason for this post is to I hope make some of you take greater care of yourselves. I don't feel anxious(perhaps I should)then again being calm is perhaps a way of coping with something that could become something but hopefully will not or at least not for a few more years to come.
If you do not wish to read about illness, please wait for another subject that I will blog in a few days time. If any of you have read some of this before, please do not read and become bored :-) Some friends already know the situation.
For some of you, it could be a warning and just may stop you getting something that can be avoided or treated so the condition is controlled and becomes no worse or with luck reversed.
I have always eaten reasonably healthy, been reasonably fit and could count how often I saw a Dr on one hand. Then in 1997 for some reason but not enough to cause me concern I noticed that when I put my shoes on in the morning after getting out of bed, they felt a little tight. But so what!
I cannot say that I particularly noticed my weight was increasing or that maybe I was falling asleep too easily when sitting in the armchair. But hey, I'm getting older and well aren't you supposed to fall asleep when watching the television?
And then(and some guys would love this)I found that my penis was larger than normal. This was late at night as I was getting ready for bed. Nothing more exciting than a bit of oedema(A fancy name for water retention)I rushed to the local hospital's emergency dept and was given some tablets and told I probably had an allergy and to see a Dr at my surgery. Things were still not right the next morning and being the weekend they only did an hour on a Saturday morning. That doesn't happen these days. The Dr on duty found it amusing.
Anyhow, I managed to see my own Dr later in the week and the symptoms were taken away by water tablets. The condition would keep coming back. I was due to go on holiday but the thought of taking ill whilst away and worry about it anyhow, the holiday was cancelled and I stayed.
My Dr decided to find out why things were getting no better as he called to see me and my legs were solid and like tree trunks and had a hospital consultant call at my home and that same day I was rushed into hospital. Due to a lack of beds I stayed in the local hospital until there was a bed made available for me at a larger hospital that dealt with...Kidney Complaints.
To cut the story short...for some reason, my blood had gone thick and sticky, blood pressure was raised and my kidneys were inflamed. Was it caused by a virus or bad luck...who knows. I was not off my food, my colouring looked fine and anyone seeing me would not have any idea just how ill I was. I had lots of blood tests every day, was put on a course of aspirin to thin the blood, water tablets to try and get rid of the excess water being retained.
Once in the larger hospital a biopsy was taken and during that time I was so frightened. Some of the water was disappearing from between the tissues and muscles in my body and what was left just felt like strange lumps.
Well, I was sent home and then called back to see the consultant with the results and diagnosis. I had Nyphrotic Syndrome. But I now believe it to be Membranous nephropathy(inflammation of the kidney)
All being well, it could improve and correct itself. But I was to be monitored over the months and tested regularly.
All was well for perhaps a year or so and then one consultation the chairs were placed differently when I entered the room and the Consultant was not sitting behind his desk, some bad news was coming. My consultant told me that my condition was deteriorating. He could sit back and see what happens or take action but what?
1. Do nothing.
2. There was a study being done and I could take part but I would be offered either no treatment, a placebo and/or some type of medicine.
3. Take the treatment my own Consultant had tried with patients and had success with. Obviously, there would be side effects and I had to sign a waiver.
So I was put on three weeks worth of steroids by drip feed in three days! And then had to take 10 x 5mg
of Prednisolone steroids daily plus 2 x 50mg immune suppressant tablets(usually given for people who have had transplants)normally given to stop the body rejecting organs.
The steroids had two noticeable effects, my head looked like a massive football or one of those helium filled balloons you see at the fairground and my lovely little tummy(no middle age spread)became large and caused stretch marks.
Since 1998 or thereabouts I was on this treatment and the condition has been controlled. In the last 2-3 years the medication has been reduced and for perhaps the last year all I am taking is one blood pressure tablet.
During the worst of this illness I was forced to attend a medical assessment(even though I had filled in long detailed forms and had the support and additional information from my Dr and Consultant) as to whether you are fit for work and passed fit even though my energy was easily sapped and dialysis/transplant was a distinct possibility. Much later if it had not been for help from an organisation that advises the public how to proceed and attending a second test that was in my favour, I am not sure where I would be.
So the condition is controlled but either the condition or the treatment has impaired my mobility and I now require a cane to walk with and try and get in and out of chairs and I cannot walk very far, if I try to do something a bit strenuous I'll pay for it later.
Now what are the symptoms? Well, very little at all so can I tell you how important it is to get your blood pressure taken reasonably regularly otherwise by the time you know something is up, the damage may be done. Water retention certainly a sign of danger. And here's a little clue that may mean trouble...a little froth when you pass urine but as I said at the time...who goes around comparing urine and who would think such a symptom unusual?
Does diet affect matters? Well, I was told by the Consultant and Hospital Dietician...no! But then again, if the kidneys are damaged and/or susceptible to failure eating lots of meat is not advisable because there is too much protein to cope with so small amounts rather than a big juicy stake is advisable. Having said that diet does not play a part, this can be contradictory advice because this condition is particularly rare in the Mediterranean where they eat lots of Vegetables, Olives, Seafood, Tomatoes etc...so perhaps diet does play a part.
So why am I going on about this now...I had my regular check up about a month ago and was told that all was well. And that I do not need to be seen until middle September. If there had been any problems spotted via the blood test, urine sample etc...I would be called back in and treatment would be started(I understand...)and hope that if treatment is commenced the condition can be slowed down again or controlled and the suggestion is that I would be on the drugs for a less period of time.
It was arranged that I get a blood sample taken in July(at my Dr's)and then another when I see the Consultant in September. But out of the blue this week the surgery rang to say that I was expected for a blood test. What? I thought it a computer error. So I cancelled it but saw my own Dr today.
Now here's something I did not know(In one way its good that I do...in another way perhaps not)My last blood test was not as good as it could have been and for the first time I was told that its been creeping towards unacceptable levels of createnine for some time. The graph looked alarming but I was assured otherwise but they are watching things...just in case. The reading was 120 micromoles per litre of blood.
Thanks to a genuine site on the internet I do not feel quite as apprehensive because with or without treatment I have found out that someone with good kidney function is roughly given a reading of between 60-120. And its only when you have a reading of 350-600 that you are approaching dialysis. And though a rough guide this suggests that I have approx 75% kidney function.
Ethnicity can affect results, People of Black African Origin can on average have a higher level of createnine but the biology of that race would mean though giving a higher reading they would actually have completely normal kidney function. Also the USA uses a different form of measurement with different readings.
If it continues its back on the treatment but hopefully not for as long. And please God it works.
So I was told by my Dr...Blood tests cost "Pennies" and he is happy for me to have them as often as I wish to monitor the situation and take any action necessary sooner rather than later. You could say its a pity that I have not been told the results were slowly getting worse but maybe that would've perhaps worried me more. So maybe ignorance is bliss.
When you read what a kidney does and all its functions, my goodness what a miracle of biology it is.
So though this is a posting explaining my condition...I am also giving you the chance to be checked out and avoid similar problems happening to you so watch for the symptoms but best of all please have your blood pressure checked. Its amazing how much damage high blood pressure can cause.
You know what? This looks worse when its written down than living through it but remember there is almost 9 years squeezed down here into a page of text.
posted by The Great Gildersleeve | 4:23 pm
|
19 comments
