Stevens Health - Medication and Toe Test

When Steven was a baby he was always getting chesty colds and breathless during the winter months, and on a visit to the surgery, his heart wasn't making the right noise.
Then when he was 18mths he was diagnosed with a narrow mitral valve which restricted blood flow to the heart, Medical term Mitral Stenosis.
He was placed under Doctor Taylor of Great Ormond Street who monitored it.
In 1984 he was taken into Great Ormond Street for a repair, this failed and 4 weeks later when we attended an outpatient appointment he was kept in and he had the valve replaced.
The first time i saw him after the operation was awful, he was covered in dried blood and unconscious, he hadn't been cleaned up, he remained in intensive care for several days.
2 open heart surgeries in 4 weeks.
Steven also had 2 catheters, which is where they put a tube in his hip and spray dye into his heart muscle to take pictures of the heart, it is an all day procedure including recovery, and takes a few days to recover properly, the first time was before he had an operatiion, the second time was scheduled between operations, on his 7th Birthday, but i persuaded them to do it the next day, within a few days of this he had a second operation.
During Stevens second time in hospital, the Queen Mother was scheduled to visit the Outpatients, and someone left a package in the waiting room, so all of the ground floor was evacuated.
While in hospital Steven made friends with a boy called David and we went and stayed with them for the weekend, when we got home.   He also attended a Hospital Cub Scout Pack.
During Stevens stay in hospital we stayed in a house round the corner called Rainbow House, it was run by a charity for parents of patients at Great Ormond Street, it had not long opened and we were interviewed by The Nursing Times about the facilities it offers.
He took digoxin, to strengthen his heart beat for a few months, and was placed on Warfarin an anti coagulant for life, which meant he had to have regular blood tests, to check his blood clotting.
In 2009, Steven got a leaky heart valve and blood clot on another valve and was admitted to Queen Elizabeth Hospital in Kings Lynn, they decided to leave his leaky heart valve at least for the time being, they treated his blood clot with Clot Busting Drugs, this was successful, he was in hospital about 3 weeks, because they had to monitor his INR (Blood Clot), till they were happy with it.
To diagnose the problem properly Steven had to have a TOE

What is a transoesophaegal echo (TOE)?

A transoesophaegal echo (TOE) is a special type of heart ultrasound that involves taking pictures inside your oesophagus, which is the tube connecting your mouth to your stomach. As your oesophagus is close to the back of your heart this allows your doctor to see clear pictures of your heart.

What is a TOE Test?

Your aneasthetist will supervise your sedation during your TOE test. If you have had previous problems with an anaesthetic, or you have any severe allergies please inform the doctor as soon as possible.
During the test a small needle is inserted into the back of your hand so that intravenous medicine can be given to make you sleepy. Your throat will be sprayed with local anaesthetic to make it easier to swallow. A special mouthpiece will be put in your mouth to protect your teeth. The echo probe will be gently inserted into your oesophagus and pictures will be taken of your heart. The test will take between 15 to 30 minutes to complete.
Your pulse, blood pressure, rate and regularity of your heart beat and oxygen levels will be monitored during the test. If you doctor has any concerns, the test may be stopped. At the end of your test the probe will be removed.

Steven then had a Clot Busting Drug Claxane

Clexane injection contains the active ingredient enoxaparin, which is a type of medicine called a low molecular weight heparin. It is used to stop blood clots forming within the blood vessels.
Blood clots normally only form to stop bleeding that has occurred as a result of injury to the tissues. The clotting process is complicated and begins when blood cells called platelets clump together and produce chemicals that activate the clotting process. The final part of this process involves a substance called thrombin being activated to produce a protein called fibrin. Fibrin binds the platelets together, forming a blood clot. This is the body’s natural way of repairing itself.
Sometimes, however, a blood clot can form abnormally within the blood vessels. This is known as a thrombus. It can be dangerous because the clot may detach and travel in the bloodstream, where it becomes known as an embolus. The embolus may eventually get lodged in a blood vessel, thereby blocking the blood supply to a vital organ such as the heart, brain or lungs. This is known as a thromboembolism.

Steven was then put on Perindopril

About perindopril

Type of medicine	ACE (angiotensin converting enzyme) inhibitor
Used for	Hypertension (high blood pressure) Heart failure (where the heart is unable to pump blood efficiently) To help prevent problems after heart attacks and procedures to help increase blood flow through the heart
Also called	Perindopril arginine, perindopril erbumine, perindopril tert-butylamine Coversyl Arginine®
Available as	Tablets

Perindopril works by causing blood vessels to relax, lowering blood pressure and increasing the supply of blood and oxygen to the heart.

Steven is on Furosemide, to aid the treatment of his leaky valve.

Furosemide

<big>About Furosemide</big>
This belongs to the group of medicines known as Loop diuretics. Diuretics are often referred to as water tablets.
Furosemide is used to treat oedema (water retention) due to heart failure.

If the heart becomes less efficient at pumping blood around the body, fluid leaks out of the blood vessels causing swelling in the tissues of the lungs, feet or ankles. Furosemide prevents the build up of fluid by increasing the amount of urine produced by the kidneys.

INR

The prothrombin time (PT) and its derived measures of prothrombin ratio (PR) and international normalized ratio (INR) are measures of the extrinsic pathway of coagulation. They are used to determine the clotting tendency of blood, in the measure of warfarin dosage, liver damage, and vitamin K status. The reference range for prothrombin time is usually around 12–15 seconds; the normal range for the INR is 0.8–1.2. PT measures factors I, II, V, VII, and X. It is used in conjunction with the activated partial thromboplastin time (aPTT) which measures the intrinsic pathway.

International normalized ratio

The result (in seconds) for a prothrombin time performed on a normal individual will vary depending on what type of analytical system it is performed. This is due to the differences between different batches of manufacturer's tissue factor used in the reagent to perform the test. The INR was devised to standardize the results.
Each manufacturer assigns an ISI value (International Sensitivity Index) for any tissue factor they manufacture. The ISI value indicates how a particular batch of tissue factor compares to an internationally standardized sample. The ISI is usually between 1.0 and 2.0.
The INR is the ratio of a patient's prothrombin time to a normal (control) sample, raised to the power of the ISI value for the analytical system used.
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Leaky Heartvalve that Steven has is as below

Aortic insufficiency (AI), also known as aortic regurgitation (AR), is the leaking of the aortic valve of the heart that causes blood to flow in the reverse direction during ventricular diastole, from the aorta into the left ventricle.^[1]
Aortic insufficiency can be due to abnormalities of either the aortic valve or the aortic root (the beginning of the aorta).

Jenny's Health

During Jenny's pre/early teen years, she started developing problems where she lost the strength in her legs and arms with her speech being affected occasionally, after a lot of tests the powers that be against my better judgement decided she had Epilepsy, she was put on very strong medication Tegretol which resulted in hair loss (she woke up with clumps of hair on her pillow), moodiness, aggression and weight gain (since then she has always struggled with her weight), she remained on this medication for about 3 years, when it was proved ineffective she went to Addenbrookes for brain tests which conclusively revealed that she did not have Epilepsy, she was then gradually weaned off of her medication.
I have felt, that panic attacks could be a possible solution, she still has the attacks but not as frequently.

My Right Knee

In 2008 I started getting aching stiff  right knee joint, then in October 2008, the pain came upon me very fast and strong, making me in agony and completely immobile.
The symptoms take the form of immobile right knee, Difficulty walking, Severe pain over knee joint, Burning pain in inner knee, feel like knee is going to give way, referred pain on left knee through incorrect walking, Swollen Feet and ankles, inability to get comfortable in bed, I have spent 3 weeks sitting downstairs all night.
Later Bob told me I fell downstairs but I have no recollection of that whatsoever.
The pain grew and grew until work became a struggle, I am struggling taking the dog for its twice daily walk, I have to cut back on our family Sunday afternoon walks, also cut down on my guiding, eventually I had to give up my beloved yoga, I am left with virtually no quality of life everything that I enjoy I have had to give up or cut back on, my weight has gradually increased because of lack of exercise, I have difficulty going up and down stairs it is an accident waiting to happen, I also have difficulty getting in and out of the bath, I cannot have a bath because I couldn’t sit down in the bath.
I have also been having tingling in my fingertips.
Then after months of suffering I finally realised it was not going to go away by itself and went to the GP and saw Dr Ghag on the 12^th February 2009, who referred me to the hospital for an X Ray and to see orthopaedic consultant, and tests on my finger nerve endings.
On the 26^th Feb I had a series of blood tests which were clear, and on the 26^th Feb I had an X Ray.
On Tuesday 10^th March I was prescribed Co-codemol to which I reacted badly, on the 11^th March I returned to the Doctor and was prescribed Diclofenic, to which I had some improvement.  On the 14^th April I ran out and decided not to immediately get a repeat prescription, so I could see the true state of the pain, to which I suffered quite badly.
On the 11^th March the results of the X-Ray came back, I was diagnosed with early stage of Osteo-Arthritis, although I do not dispute this, I am not convinced this is the whole story, because:- the rapidity of the onset of pain, osteo arthritis is degenerative, and the onset of the pain is gradual,  Weather and cold has no effect,          morning is my best time the more I do the worse the pain gets.
On the 5^th May I went to the hospital for tests on my finger nerve endings, and was told I had trapped nerves on my right hand and early stage on my left hand, this can be treated through my GP.
On the 11^th May 2009 I saw the orthopaedic consultant Dr Colman, to which I attended a most unsatisfactory interview, yes I had osteo arthritis, but he wouldn’t do anything because of my weight, if I lost a considerable amount of weight he might be prepared to do a knee replacement when I am 70, he would refer me to have an MRI, at this stage the nurse butted in and said she had difficulty getting in the MRI when she had one and I am bigger than she is, he then said there is a possibility of torn cartiledge and the MRI would reveal this, in this case he might be able to do keyhole surgery, if he felt like doing it because of the fat.  I asked him what I could do in the meantime, he shrugged and said Struggle On. I was embarrassed and humiliated, he was quite nasty in his attitude, never even invited me to sit down.
I am very upset and depressed about this appointment, I have tried hard, seriously and unsuccessfully to lose weight for many years, I lose quite easily 1 stone then I stop and nothing seems to work from then on. It is now Thurs am I have not had a meal since Monday lunchtime before my hospital appt, but I am at a loss as to what to do, radical steps are needed.  I have cried a lot everything feels so helpless, to live like this for the rest of my life, is there.
When the MRI scan comes I felt disinclined to keep the appointment for several reasons, it appears unlikely that the Doctor would do anything whatever the results, I am claustrophobic and the thought of going in the machine makes me panic, what the nurse said about me struggling to get in the machine, and the likely pain of trying to get into position.

I eventually had an MRI scan on 31st May 2009 it was excrutiatingly painful, how my knee was forced to straighten up, but i survived, the consultant never gave me results after weeks of waiting the GP chased it up and it was confirmed i had Osteo Arthritis and torn cartiledge, he never asked to see me, offered treatment, or pain management.

My GP did put me on anti inflammatory Diclofenic and weightloss aid, xenical, but i cannot say i felt xenical really helped, but i never got the nasty side effects i was advised i would get.
Although my knee is at times still painful it has been much improved during the past few months, i can't walk as far, i cannot stand for long stretches, but i struggle on, as advised!!
Knee pain is a problem in the family, my paternal grandmother, Granny, always suffered from a bad knee and so does my paternal aunt, Auntie Marge, and now my Dad does as well.

Yoga

I am so confused, my yoga has been an integral part of my life now for 20 years, but there is an attitude that Yoga goes against  Christian beliefs, and my Christian faith is important to me.  I know the roots of Yoga are Hindu, however, as far as i am concerned it is just a gently form of breathing and stretching exercises, in my class there is no led meditation or nothing to suggest religion.
I purchased a book and DVD entitled Praise Moves The Christian alternative to Yoga http://praisemoves.com/, but a lot of the exercises are the same with different names, and i would not gain the support and benefit as well as regular weekly commitment that i get from attending a class.
I wish i knew the answer this is causing me stress.