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!

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.

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!

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!

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.

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!

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!