Tomorrow I'm heading into one of the local hospitals as a volunteer test patient for the FRACP Clinical Exams.
The exams are for Doctors who have completed their basic training and are now moving on to advanced training.
I've been a volunteer every year since 2004, as I think it's really important to assist with the education of our future Medical Specialists. Even moreso, I think it's beneficial to the wider community, and to those Doctors, for them to be able to have a test case such as mine with more than one unusual medical condition.
In ten years time, a patient may walk into their consulting rooms with vague symptoms, and unlike my case where it took over a year of tests before a diagnosis, they may remember that exam test patient.
Now I just have to pack a few things.... x-rays, lung function test results, and of course the most important thing - my craft bag!
Wednesday, July 27, 2011
Thursday, July 21, 2011
Some info about the testing - Scans
There were lots of scans over the three days of pre-assessment testing so I thought I'd try to explain them all.
Dexa Scan (Bone Density)
I usually have one of these every two years at RMH as I have osteopenia.
It normally just involves laying on the bed while they take a quick scan of the hip and the neck to check for changes in the bone density.
This one was slightly different as they needed to do a full body scan. Unfortunately for me, that meant that I had to get undressed and put on a lovely pair of blue scrubs pants and a white gown.
The result showed that the bone density in my lower body is worse than the bone density in my upper body. Strange...... but, I've been given some ideas for exercises that will target the appropriate muscles to help with this, and I already take lots of tablets for it anyway!
OPG (Dental X-Ray)
I've never had one of these before, and it was quite strange!
You have to stand upright, and sort of walk into the scanner and bite down on a probe that sticks out in the middle. They adjust your head and lock it into place with a clamp, and then the scanner turns around your head to take x-rays of your jaw and teeth.
CXR (PA & Lat) - (Chest X-Ray)
This one was a little more familiar. Over the past 25 years, I've had at least 50 chest x-rays. I have a huge pile of them in my walk-in-robe.
Normal procedure - take everything off from the waist up and put on a lovely hospital gown. Stand against the plate - Breathe in and hold your breath - take a front x-ray. Turn and put your side up against the plate with your hands on your head, breathe in - hold your breath, take the side x-ray.
VQ Scan (Checks air and blood circulation in the lungs)
The best way to explain this one is that it's sort of similar to a CT scan.
You lie down on the bed, and you have to breathe in some radioactive gas, and be injected with a radioactive dye. The scanner moves and sort of hovers over your chest on each side.
CT Thorax (High Resolution and full 10/10 slices)
The CT is another where you have to take everything off from the waist up and dress up in a lovely white gown.
For a high-res CT, they inject a radioactive dye. The dye gives you a funny metallic taste in your mouth, and you get this really strange sensation of warmness that moves through your body. You feel like you're wetting yourself (but you're not).
The bed moves into the scanner, and a lovely robotic voice tells you to breathe and hold your breath while the scan take place.
Echocardiogram & ECG
This one is always the most embarrassing of the lot.
The ECG is quick and easy - they just attach the electrodes all over your chest and print out a report.
But, the echo is not nice. It's an ultrasound of the heart and it's uncomfortable and embarrassing (for a female) and takes a long time. There's lot's of pushing of the scanner against the chest and at the side. The area of my chest where my heart is, is always quite sore anyway as it feels like my heart is protruding out of my chest from working so hard everyday.
I have mild pulmonary hypertension and a slightly enlarged heart, so I'm hoping that the result doesn't show that these are getting any worse.
Phew! It's a wonder I wasn't glowing green after all that!
Dexa Scan (Bone Density)
I usually have one of these every two years at RMH as I have osteopenia.
It normally just involves laying on the bed while they take a quick scan of the hip and the neck to check for changes in the bone density.
This one was slightly different as they needed to do a full body scan. Unfortunately for me, that meant that I had to get undressed and put on a lovely pair of blue scrubs pants and a white gown.
The result showed that the bone density in my lower body is worse than the bone density in my upper body. Strange...... but, I've been given some ideas for exercises that will target the appropriate muscles to help with this, and I already take lots of tablets for it anyway!
OPG (Dental X-Ray)
I've never had one of these before, and it was quite strange!
You have to stand upright, and sort of walk into the scanner and bite down on a probe that sticks out in the middle. They adjust your head and lock it into place with a clamp, and then the scanner turns around your head to take x-rays of your jaw and teeth.
CXR (PA & Lat) - (Chest X-Ray)
This one was a little more familiar. Over the past 25 years, I've had at least 50 chest x-rays. I have a huge pile of them in my walk-in-robe.
Normal procedure - take everything off from the waist up and put on a lovely hospital gown. Stand against the plate - Breathe in and hold your breath - take a front x-ray. Turn and put your side up against the plate with your hands on your head, breathe in - hold your breath, take the side x-ray.
VQ Scan (Checks air and blood circulation in the lungs)
The best way to explain this one is that it's sort of similar to a CT scan.
You lie down on the bed, and you have to breathe in some radioactive gas, and be injected with a radioactive dye. The scanner moves and sort of hovers over your chest on each side.
CT Thorax (High Resolution and full 10/10 slices)
The CT is another where you have to take everything off from the waist up and dress up in a lovely white gown.
For a high-res CT, they inject a radioactive dye. The dye gives you a funny metallic taste in your mouth, and you get this really strange sensation of warmness that moves through your body. You feel like you're wetting yourself (but you're not).
The bed moves into the scanner, and a lovely robotic voice tells you to breathe and hold your breath while the scan take place.
Echocardiogram & ECG
This one is always the most embarrassing of the lot.
The ECG is quick and easy - they just attach the electrodes all over your chest and print out a report.
But, the echo is not nice. It's an ultrasound of the heart and it's uncomfortable and embarrassing (for a female) and takes a long time. There's lot's of pushing of the scanner against the chest and at the side. The area of my chest where my heart is, is always quite sore anyway as it feels like my heart is protruding out of my chest from working so hard everyday.
I have mild pulmonary hypertension and a slightly enlarged heart, so I'm hoping that the result doesn't show that these are getting any worse.
Phew! It's a wonder I wasn't glowing green after all that!
Sunday, July 17, 2011
Some info about the testing - physio
Physiotherapy and Pulmonary Rehabilitation are very important to anyone with a chronic lung disease. It's essential to keep active and to learn how to focus on strengthening the correct muscles that are important for breathing, and the large muscles that use the most oxygen.
I've been attending pulmonary rehabilitation sessions since 2004. When I started I was still quite fit and active. I was still working full time and also travelling for work. The only time that I ever really encountered a problem was when the colleagues that I travelled with walked too fast for me at the airport!
As the years have progressed, things have become worse. At first, I just started using oxygen at my pulmonary rehab sessions on 2L/min. Then I got to the point where I needed oxygen for walking / shopping etc. outside of the house. Now I'm at the point where I need oxygen 24/7 on 2L/min and then I have to increase it to 4L/min for walking/exercising etc.
The way that the physiotherapists measure a patients exercise tolerance is with a 6 minute walk test. (6MWT). They set up a straight path of at least 25 metres, and the patients needs to walk back and forth from end to end as fast as they can for 6 minutes. You can only stop if you get too dizzy from lack of oxygen to the brain.
Predictive equation for females: 6MWD(m) = 525 – (2.86 age, yrs) + (2.71 height, cm) – (6.22 BMI).
For me the predicted outcome should be = 525 - (2.86*37) + (2.71*170) - (6.22*23.5) = 733.71 metres
On 4L/min, I actually achieved 325 metres with my SpO2 in the low 70's (should be 100%).
I'd love to know what the results were from my very first 6MWT in 2004. I really should ask my physio if she can dig out the records and check!
Which has got me to thinking.... I used to be a long distance runner when I was at primary and high school. Even in Year 12, I came 2nd in the school cross country. I could easily run 3 kilometres in 15 minutes.
325 metres - 6 minutes = 3.25 kms/hr
3000 metres - 15 minutes = 12 kms/hr
BIG difference!
If you look at the top right of the photo - it has a results for ABG's which means Arterial Blood Gas. It's where they stick a really skinny needle directly into the artery in your wrist (and yes it's as gross as it sounds) to take a blood sample.
The normal range for PaCO2 is 35-45mm Hg - mine is 57
The normal range for HCO3 is 22-26mEq/L - mine is 33
This means that I have compensated respiratory acidosis or too much carbon dioxide in the blood.
I'd better watch out then, I might get slapped with a carbon tax!
Friday, July 15, 2011
Some Info about the testing - Bloods
Mobile phone photo
On the second morning of testing I was scheduled for the blood tests. I had to fast from midnight the night before for this list:
FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.
So at 7.30AM the nice lady from pathology came in and emptied a bag full of blood tubes that needed to be filled. I'd just woken up, sitting in bed bleary eyed (with bed hair) in my pyjamas.
I asked how many - she said 18. I couldn't resist taking a photo of them. She laughed!
While she was filling tubes, I had to drink a 300mL bottle of glucose syrup for the glucose tolerance test. I didn't mind that bit - it just tasted like flat sweet lemonade, but afterwards - bellyache. Blergh!
For the glucose test she had to come back at 8.30 for more blood, and then 9.30 for even more blood.
By this time, I was absolutely dying for a cup of coffee! I only had a chance to drink a super quick coffee before my chariot arrived to whisk me over to the physiotherapy department for the next appointment....
.... details in the next post.
Tuesday, July 12, 2011
What I Eat
I'm very fussy when it comes to eating.
It's amazing how many of my friends love to make a joke of my eating habits (it truly is quite amusing... but I can't help it).
Anyway, it's always a bit nerve wracking having to tell a dietician what you eat, but it was one of the appointments on the pre-assessment list.
So for breakfast, I usually always have multigrain toast with vegemite, sometimes jam, a giant cup of coffee and a handful of tablets.
For lunch, I might have crackers with vegemite, or a sandwich, or I might go out and eat (bakery fare, toasted chicken wrap etc).
For dinner I usually have meat (chicken, beef, lamb, pork) with either potato, rice, or pasta.
For snacks I eat biscuits, cakes, chocolate muesli bars, and bananas (when they're not $15 a kg).
I also have at least one cappucino and one hot milo per day.
All of that may not seem very healthy for a normal individual, but the only problem was that I need to cut down on vegemite because of the salt content.
I'm in the perfect weight range for my height and medical condition.
I use supplements (mutivitamins) to make up for the lack of vegies and for the malabsorption issues that occur with hypogammaglobulinemia.
I have lots of problems due to taking prednisolone for twenty years which is why it's recommended to cut down on salt.
The osteopenia is also due to the prednisolone, so I have to take high dose calcium, vitamin D, and fosomax, and drink more milk via cappucino or milo.
I was quite happy with that report!
It's amazing how many of my friends love to make a joke of my eating habits (it truly is quite amusing... but I can't help it).
Anyway, it's always a bit nerve wracking having to tell a dietician what you eat, but it was one of the appointments on the pre-assessment list.
So for breakfast, I usually always have multigrain toast with vegemite, sometimes jam, a giant cup of coffee and a handful of tablets.
For lunch, I might have crackers with vegemite, or a sandwich, or I might go out and eat (bakery fare, toasted chicken wrap etc).
For dinner I usually have meat (chicken, beef, lamb, pork) with either potato, rice, or pasta.
For snacks I eat biscuits, cakes, chocolate muesli bars, and bananas (when they're not $15 a kg).
I also have at least one cappucino and one hot milo per day.
All of that may not seem very healthy for a normal individual, but the only problem was that I need to cut down on vegemite because of the salt content.
I'm in the perfect weight range for my height and medical condition.
I use supplements (mutivitamins) to make up for the lack of vegies and for the malabsorption issues that occur with hypogammaglobulinemia.
I have lots of problems due to taking prednisolone for twenty years which is why it's recommended to cut down on salt.
The osteopenia is also due to the prednisolone, so I have to take high dose calcium, vitamin D, and fosomax, and drink more milk via cappucino or milo.
I was quite happy with that report!
Final pre-assessment appointment - Dental Clinic
*** Disclaimer:
Sorry to anyone reading my blog posts at the moment - they're going to be extremely boring, but I'm writing this for my own benefit to keep a record of the process. Sort of like a diary.
The Dental Clinic was closed when I was in hospital last week, so I had to go back today for one last appointment as part of the transplant pre-assessment.
I'm pretty good at making sure that I go to the dentist every six months for a check up and a professional clean, so I was pretty confident that they wouldn't find any pre-exisiting dental problems which would need to be fixed prior to a transplant.
They did all the normal checks that the dentist does, and made a list of any work that had been done, and the current condition of each and every tooth.
Then they took x-rays of the three pre-existing root canals to make sure that they were in good condition and had been treated adequately. One of these root canals was only done a couple of years ago and cost around $2000, so I was going to go back to the Endodonttist and ask for a refund if it wasn't any good!
Once all that was finished, they put up the three little root canal x-rays and the x-ray of my jaw and teeth from last weeks tests on the screen together. Teeth look even uglier and more crooked on x-rays.... but thank goodness, they couldn't see any problems.
The only other thing that they spoke about was the need to be on antibiotics before having any dental treatment. I'm assuming this is as a preventative measure? I'm already on prophylactic antibiotics 24/7 anyway due to the hypogammaglobulinemia so I don't think this will be a problem.
So the good news at the end of the dentail clinic is that I can just stick to my current routine - see my own dentist every six months for a check up and a scale and clean. Phew!
Sorry to anyone reading my blog posts at the moment - they're going to be extremely boring, but I'm writing this for my own benefit to keep a record of the process. Sort of like a diary.
The Dental Clinic was closed when I was in hospital last week, so I had to go back today for one last appointment as part of the transplant pre-assessment.
I'm pretty good at making sure that I go to the dentist every six months for a check up and a professional clean, so I was pretty confident that they wouldn't find any pre-exisiting dental problems which would need to be fixed prior to a transplant.
They did all the normal checks that the dentist does, and made a list of any work that had been done, and the current condition of each and every tooth.
Then they took x-rays of the three pre-existing root canals to make sure that they were in good condition and had been treated adequately. One of these root canals was only done a couple of years ago and cost around $2000, so I was going to go back to the Endodonttist and ask for a refund if it wasn't any good!
Once all that was finished, they put up the three little root canal x-rays and the x-ray of my jaw and teeth from last weeks tests on the screen together. Teeth look even uglier and more crooked on x-rays.... but thank goodness, they couldn't see any problems.
The only other thing that they spoke about was the need to be on antibiotics before having any dental treatment. I'm assuming this is as a preventative measure? I'm already on prophylactic antibiotics 24/7 anyway due to the hypogammaglobulinemia so I don't think this will be a problem.
So the good news at the end of the dentail clinic is that I can just stick to my current routine - see my own dentist every six months for a check up and a scale and clean. Phew!
Friday, July 8, 2011
Testing Over
The three days of pre-assessment and testing is finally over.
I made it home at around 4.45PM, and now I'm exhausted....even though I spent most of the time sitting in a chair or being wheeled around in a hospital chariot.
I'm so glad that they squeeze it all into three days, as I can't imagine how long it would take to get through all of that as an outpatient.
I'd already had all of the tests previously, except for the jaw x-ray, so at least I knew what to expect.
All of the staff at the Alfred were so nice and so caring which made it so much less stressful.
There's lots of information to absorb from all the different medical specialties. I'll be reflecting on it all for a while until my next appointment.
All of the results now need to be collated and reviewed by a medical panel to make the final decision on my suitability for a transplant, but on August 11th, I should find out for sure whether I'm joining the waiting list.
I made it home at around 4.45PM, and now I'm exhausted....even though I spent most of the time sitting in a chair or being wheeled around in a hospital chariot.
I'm so glad that they squeeze it all into three days, as I can't imagine how long it would take to get through all of that as an outpatient.
I'd already had all of the tests previously, except for the jaw x-ray, so at least I knew what to expect.
All of the staff at the Alfred were so nice and so caring which made it so much less stressful.
There's lots of information to absorb from all the different medical specialties. I'll be reflecting on it all for a while until my next appointment.
All of the results now need to be collated and reviewed by a medical panel to make the final decision on my suitability for a transplant, but on August 11th, I should find out for sure whether I'm joining the waiting list.
Saturday, July 2, 2011
The Schedule
The weirdest thing happened thismorning....
A friend came over mid-morning to give me an Adobe Illustrator lesson, and as I opened the door, I noticed that there was mail in the letterbox.
I'd checked them mail when I arrived home lastnight at around 10PM and it was empty, so I thought it was a little strange that all of a sudden there was mail on a Saturday!
It turns out that it was the six missing envelopes full of paperwork that I was waiting on from the hospital, which had all been sent to my previous address.
I'm assuming that the new owners of my old house (one of them being a nurse) must have realised that it was important (as it was labelled as being from the heart and lung transplant unit), and luckily searched for my new address and delivered it.
So thank goodness, now I at least have the schedule and I know what's planned for the three days.
This is a quick run down:
Wed:
Need to be in admissions by 8.30AM (I'll be setting my alarm for 5.30AM)
Dexa Scan (Bone Density Test)
OPG (Dental X-Ray)
CXR (PA & Lat) - (Chest X-Ray)
Social Worker
Anaesthetics
VQ Scan (Checks air and blood circulation in the lungs)
Sputum, Micro Culture and Sensitivity, Fungal Culture, AFB Culture
Commence fasting for AM bloods
Thu
FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.
Physiotherapist
Transplant Clinic Nurses
Lung Function
Dental Clinic
CT Thorax (High Resolution and full 10/10 slices)
Fri
Occupational Therapist
Cardiothoracic Surgeon
Echocardiogram
Dietician
Transplant Co-ordinators
3PM - GO HOME!
A friend came over mid-morning to give me an Adobe Illustrator lesson, and as I opened the door, I noticed that there was mail in the letterbox.
I'd checked them mail when I arrived home lastnight at around 10PM and it was empty, so I thought it was a little strange that all of a sudden there was mail on a Saturday!
It turns out that it was the six missing envelopes full of paperwork that I was waiting on from the hospital, which had all been sent to my previous address.
I'm assuming that the new owners of my old house (one of them being a nurse) must have realised that it was important (as it was labelled as being from the heart and lung transplant unit), and luckily searched for my new address and delivered it.
So thank goodness, now I at least have the schedule and I know what's planned for the three days.
This is a quick run down:
Wed:
Need to be in admissions by 8.30AM (I'll be setting my alarm for 5.30AM)
Dexa Scan (Bone Density Test)
OPG (Dental X-Ray)
CXR (PA & Lat) - (Chest X-Ray)
Social Worker
Anaesthetics
VQ Scan (Checks air and blood circulation in the lungs)
Sputum, Micro Culture and Sensitivity, Fungal Culture, AFB Culture
Commence fasting for AM bloods
Thu
FASTING BLOODS AT OUTPATIENT PATHOLOGY
Blood: U+E'S, Cr, Glucose, LFTs, Mg, Ca, PO.
CRP,B12,Folate,Iron Stud ies
Cholesterol HDL + l DL. Triglycerides, V1T D, TFTs, HbA1C
PSA (>age 50 males) Testosterone (males),
FSH, LH (females)
Immunoglobulin levels, protein electrophoresis
FBE, ESR. APTT. PTIiNR. Blood Group. TPMT ACTIVITY TEST
Hepatitis B surface antibody, surface antigen and core antibody, HepC, HIV1&2,
CMV IgG, EBV JgG ,Herpes Zoster IgG (discuss with consultant if patient on
Intragram therapy)
Quantiferon Gold, baseline save (for future serology etc).
Arterial blood gases (room air x15 minutes first if possible)
Oral Glucose Tolerance Test with Insulin levels at the time of glucose levels
2hour test. patients must be fasting : blood at baseline, 1hr and 2 hrs.
Physiotherapist
Transplant Clinic Nurses
Lung Function
Dental Clinic
CT Thorax (High Resolution and full 10/10 slices)
Fri
Occupational Therapist
Cardiothoracic Surgeon
Echocardiogram
Dietician
Transplant Co-ordinators
3PM - GO HOME!
Friday, July 1, 2011
End of the Week
Finally reached the end of a busy week (thank goodness).... just have my pulmonary rehab class left thismorning to finish it off.
I had lung function tests yesterday and saw my Respiratory Specialist and Eye Specialist (the Eye Specialist is only due to a side effect of one my medications).
In good news, the lung function is still stable.
Anyway busy day - a million things to do before the exhibition tonight!
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