My Life Abroad: The Adventures of Two Birds
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Thu
4
Sep '14

Raegan’s Medical Update

It’s been a whole year, well more than a year now – Raegan just turned 16 months old. I can’t believe it has gone by so fast! Her first words are forming and she is so close to walking now.  A little over a year ago we were in a bit of strife.  Raegan was diagnosed with left atrial isomerism which is a condition where the organs are not in their correct positions and the heart has some deformities, her heart was looked at from before birth by a Paediatric Cardiologist and we were told that her heart is mid-lined in the body, and that there was issues with IVC, the vein from the heart that drains to the lower half of the body, being blocked.

Long before she was born, at my 20-week scan our doctor used the ultrasound along with an amnio to determine what issues that Raegan may be facing.  We were lucky that things weren’t as bad as initially – we did have a bit of worry in the beginning.

Today we had our one year check up with the Paediatric Cardiologist, he gave us the green light and said he’d follow up again in 1-year.

650px-Diagram_of_the_human_heart_(cropped).svg

Her IVC, which brings blood from your lower extremities and should connect to the right atrium of the heart. In this case, instead of continuing to the heart, this vein joins another vein (hemiazygos) and continues to the superior vena cava which then connects to her heart.

Somehow in utero when the IVC got blocked, her body made up this new way to connect. Apparently it is still working with  no problems.

Left isomerism, is something I’ve been trying to explain here on the blog since before Raegan’s birth.  It is the mirror image of the structures on the left side of the chest along the left-right axis of the body, i.e. patients with isomeric left atrial appendages frequently have bilobed lungs bilaterally and each with a long bronchus. Additionally, they commonly have polysplenia and  pulmonary veins connecting to both atrial chambers.

Left isomerism, also called polysplenia, is a laterality disturbance associated with with paired leftsidedness viscera and multiple small spleens. Left isomerism, heart congenital abnormalities and gastrointestinal malformation are strongly associated. Raegan has 3 spleens.  Many times with polysplenia the multiple spleens do not work properly and it causes a case of immunity to bacterial infections.  It can be a very serious condition, but after  year of testing we have found that the spleen that is broken into three is still working for Raegan.  I couldn’t be more pleased.

In the below diagram, (A) a regular set up for the organs, (B) Raegan’s set up which is a mirror image of the norm.

situs-inversus

And in this diagram it shows how the IVC is interrupted or cut off and the new azygos and hypoplasia that the body created to circumvent the problem.

maxresdefault

Thanks for checking in on my little blog.  I hope that now things have settled, we can concentrate on raising our beautiful daughter and worry less about these issues.  Rae is a wonderful, happy, and loving little girl, and the love of my life.

Sat
31
May '14

Back from my blogging hiatus…

The long awaited return to my blog was prompted by my fellow blogger and very good friend TeeBiss.  Thanks for asking why I haven’t posted for over a year.  I do have a good reason, which I will explain through the course of this post. The last year, since Raegan’s birth has been incredibly busy!!  I never knew how stressful, worrisome, and difficult it would actually be.  But we’ve made it through year one, and I am ready to start blogging again. We started off with some bad news from the Doctors just after Rae’s birth.  She’s got a hole in her heart that didn’t look like it was going to close permanently.  This in addition to the fact that she was born with Atrial Isomerism which means that all of her organs are in the wrong place, can be a very bad combination.  In addition, many times with this condition, the baby will not be born with a spleen. It took months and many specialists to find in the end that her heart, although placed midline on the body had only a very small hole at 4-months, the Paediatric Cardiologist was happy for her to move forward and he would see her in 1-year, her appointment is coming up very soon.  We spent almost the entire year seeing specialists looking for her spleen, testing her to see if she had one, and the main problem was that because the rest of her organs are misplaced, it was likely the spleen was too.  It is a small organ.  We went in for a scan to look for it for the 3rd time and we had to have her fast prior to the appointment.  No milk for 3 hours prior.  They started the scan and there, hiding behind the stomach they found 3 spleens.  Essentially the spleen has broken into 3 pieces, called polysplenia, there’s also something called multisplenia which is when the spleen breaks into 100s of pieces.  With multisplenia and polysplenia sometimes because the pieces of the spleen are too small – they don’t work together to fight off bacterial infections (which is what the spleen does).  Only a month ago, just before her first birthday we got some test results saying that her spleen was working.  We couldn’t be more relieved.  She seems to be carrying on like any normal baby and OMG aren’t we so happy about that!  From 20 weeks to a year after her birth we were sick with worry that she wasn’t going to have a normal life, and that she would have to endure surgery, and pain to fix things up.  It’s amazing, hundreds of thousands of people are born with jumbled up organs, before ultrasound you never would know until you had a surgery.  She’s just one of the many people with this condition.  It just hasn’t effected her in the least.

As I said previously we sold our house in Belgrave, Victoria, AU so that I could take some time off work and we could live on one income.  It probably the best decision we could have made.  We’ve been renting for a year, and after 9 months off, I have returned to work.  Now that I’m back at work 4 days a week (1 at home, and 3 in the office) we are going to upgrade our rental to a bigger place, with room for the dog, backyard, one story and something more open plan. My return to work has been good. I work for a good company that appreciates me and care about work/life balance, so much that they let me work less than full time.  I’ve gone back as a Consultant but we are in the works to bring me on in a full time permanent role. It’s good, I can’t complain really. I was hired back into the same role I was in previously with the same great team – I couldn’t be happier.

When Raegan was 4 months old we took our first trip to the U.S.  We spent a couple weeks with my brother in San Diego (I love SD, I wish I could afford to live there), and a week in Vegas with my Mother and our extended family on my Mother’s side, and finally a week at my Mother’s place in Sacramento.  We stopped into Chico for a beer festival and to catch up with our friends, and we had a short visit with my cousin Lavette and my Gramma Hay, and we spent a night in LA with my cousin Laura and her 15 mo old Audra.  Raegan was so small but even though she won’t remember the trip, it was so good for my family to see her, hold her, and experience our precious little bub.

So.  There’s my explanation, baby + travel + work = little time to blog.  But actually recently I’ve been thinking about getting back into it and today when I was scrolling through my friends blog I saw a post that was addressed to me.  I’m back.  We’re leaving in 3-1/2 weeks for a Bird Family holiday at Surin Beach, Thailand, with the grandparents, cousins and everyone for 17 nights!  My mom is coming out for a long vacation at the end of the year as well.  I’ll be blogging a lot from Thailand and that will get me going for this next crazy year. It’s good to be back

Here’s a couple recent pics of our little “Chicken”, she’s now 13 months old, you can click on the pictures below to see them enlarged –

 

Thu
14
Mar '13

Baby Bird’s Update

Our 20 week ultrasound was supposed to be an exciting day, we had looked forward to it for weeks.  It was scheduled for valentines day and we had very high hopes for a positive outcome.  Our 12-week risk factor test for genetic problems had come back really good so we were anticipating flying through the 20 week scan  without a hitch.   We showed up in the morning for our scan and went through the process of the ultrasound with the technician – the baby seemed to be breach and turned over on it’s stomach so  they couldn’t get a good view of all the organs.  The 20-week scan is also called the anatomy scan, it is the time when the doctors look at the inner workings of the baby’s anatomy, are all the organs present, are they in the right place, hooked up correctly, etc. etc. 

Things seemed to be going well, we were asked if we wanted to know the sex and we said we did.  “It’s a girl”, she said, “congratulations”.  They started identifying the organs and we have a, quite long, DVD of our scan – but they were unable to get a good look at the heart and asked us to go walking the hallways to get the baby to turn so they could get a better view. When we came back there was a new doctor in the room with the technician, the scan continued.  It was at this time that we realised that there was something wrong… 

Following the scan we sat down with the doctor to discuss the situation and the implications therein.  It seems that what they could see was that there is one vertebrate that is malformed, more in the shape of a wedge than a block.  The doctor seems to think it is a very slight curve and that it could even be so slight that it may not be noticeable – this is one thing that we may not know the full extent of until after the birth.  It is difficult to see the extent during an ultrasound.  In addition the stomach had developed on the right side of the body (the wrong side), this in itself isn’t necessarily uncommon.  There are and have been many people that are born with organs that have developed on the wrong side of the body.  In fact, in the years before ultrasounds, something like this may not be known until someone has surgery or they may never know.  The stomach seems to be hooked up and working correctly even though it is on the wrong side.  Unfortunately, it is not as simple as “it’s on the wrong side but it’s okay” – in many cases when the stomach is on the wrong side, it can mean that there are other things wrong.  It can mean that there is also some heart problems or heart involvement that goes along with it – so because of this the doctor suggested that we try to do an amniocentesis to insure that there is not something that is causing these problems, something genetic, something bigger.  We agreed and proceeded with the amnio.

An amnio is something I never wanted to do.  It’s risky and after all our efforts in achieving an successful pregnancy I was so afraid that we could lose the baby just doing the amnio.  An amniocentesis is a procedure involving a long thin needle, that is inserted through the belly into the amnioiatic sac to withdrawl amnio procedure
the genetic material that surrounds the baby.  There is no anesthesia for this procedure because the size of the needle for the anesthetic is the same as for the procedure itself – so you just go without.  It didn’t really hurt and it was over quickly.  They keep the ultrasound on your belly so they can see where the baby is and they don’t get near it.  The risk is that the sac will burst and the baby will not be able to survive, there is a risk of miscarriage.  The results of the amnio comes in two stages:

1) FISH (Fluorescent In Situ Hybridisation) – FISH is a rapid method for counting the number of certain chromosomes within cells. It can be used on an amniocentesis sample to get a faster result. It is always followed by the usual chromosome test. A normal FISH test is about 98% accurate in predicting that a baby will have a normal chromosome result. The results from the FISH come back in 24-hours it checks for major genetic diseases such as down’s syndrome.

2) An amniocentesis is a procedure that allows a small amount of the fluid around the developing baby (amniotic fluid) to be collected. This fluid contains cells from the baby that can be tested for some types of birth defects.  The most common type of test done on an amniocentesis sample is a chromosome test. In some cases, tests for infections, spina bifida or other genetic conditions may be done.  All of the chromosomes are looked at individually and evaluated.

Our Amnio came back negative for any genetic problems.

On one hand this is a good thing, but I have to ask myself “then how do these things happen?” and that lead’s to the next stages of evaluation and doctors.

Due to the stomach condition possibly being related to the heart, we wanted to rule out any heart problems and we called in a specialist, a paediatric cardiologist that specialises in reviewing baby’s heart via ultrasound to look for abnormalities.  We had this appointment at about 23-weeks.  It was a long 2-weeks waiting for this appointment, but we wanted this certain doctor and we just had to wait it out for an appointment. It was a long ultrasound appointment and in the end the doctor met with us to discuss the results.

The diagnosis at this point is an anomalous drainage of the Inferior Vena Cava (IVC) into the Left Atrium.  To explain, the heart has a Single Ventricle Defect –  (IVC) inferior vena cava is a major vein that carries blood from the legs and abdomen to the heart. The inferior vena cava usually connects to the heart’s right atrium, but in Baby Bird’s case it is connecting to the left atrium of the heart. 

All blood enters the right side of the heart through two veins: The superior vena cava (SVC) and the inferior vena cava (IVC), the SVC collects blood from the upper half of the body. The IVC collects blood from the lower half of the body. Blood leaves the SVC and the IVC and enters the right atrium (RA). In the first instance this is not detrimental to the baby at birth, but if not surgically corrected there are many complications to follow with blood circulation in the body through life. 

heart

We don’t have our next appointment with the paediatric cardiologist until 32 weeks (7-8 weeks from now), at that point we will take another look at the heart and the IVC to see if anything else can be detected. We hope that the doctor will be able to see the IVC more closely and we will discuss our options after birth including surgical options.

For more information, I have attached a couple of journal articles regarding this specific abnormality.

https://www.dropbox.com/s/i8v5geic95xsfer/ICV%20diagnosis.pdf

https://www.dropbox.com/s/bqvcyfd0cv3rexn/IVC%20Article.pdf

I know that the post this time sounds a bit ominous but we have been given a positive outlook on the birth, that we will be able to make it through the birth and then the baby may be in hospital for monitoring while they assess the severity of the situation.  Ultimately if the above proves true it would be likely that we would proceed with some type of corrective surgery.  Our hopes are up and we are staying positive and although everything is not “okay” per se – we are focusing on being calm and waiting for the birth to see what our next steps are.  Your prayers and thoughts are welcome and appreciated, and we will keep you informed of our progress.

Mon
13
Aug '12

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Fri
15
Jul '11

Medical Update

Doctors Update Today

Got word from the doc today that all the meds are doing their job and stabilizing my Wegener’s! It’s great news that I will continue on my current medicaiton regimine and not progressing to stronger drugs, which I’m not sure my body can handle at the moment. So I’m on the slow decrease of drugs and continuing with weekly blood tests so that we can monitor the progress. I’m coping with my bloated steroid body and looking forward to rest and relaxation this weekend before I head back to work on Monday. Working is definitely something that is a struggle for me at the moment, but sitting at home in bed just is’t me.

Pills, pills and more… pills

It’s been a tough couple weeks since I was admitted to hopspital with a Wegener’s relapse, resulting in a pulmonary hemorriage, bleeding in the lungs.

During my admission they gave me IV Predinolone, and these kind of steroids really bloat out your enitre body. I’v become a literal windbag – looks like I’ve gained 20 kilos in just a couple weeks. In addition I’m now taking so much of the oral prednisolone and other drugs that my body is not coping well.

I’ve reverted to working one day from home now as I can’t physically make it through the work week with getting up, ready, and the hour commute to the city each way it’s been pretty stressful.

For now the medication is changing, less Prednisolone from today, and more Imuran both which stabalises my auto immune disease and also supresses bone marrow, it allows for fewer opportunitstic infections. Once we know that my Wegener’s is stabalised we will start to decrease both medications until I am in remission.

We’re still on hold for IVF. We still have a few more tries, but will need to wait at least 6-months (or longer) for this episode to pass before I can see if I will be ready to give it another go.

I’m getting over another cold, and I think I can avoid going to the hospital again this time. I’m just looking forward to taking my lovely meds and staying as healthy as I can until I am in remission. All bloating aside… I have a lot to look forward to in life, my husband, family and friends are so supportive. Love to everyone in that has been there for me and tries to understand what I am going through. It’s not easy but I’m still here. That’s something to be thankful for.

Mon
4
Jul '11

Medical Update: Case Report Published

Utilisation of plasma exchange in the treatment of digital infarcts in Wegener’s granulomatosis

International Journal of  Rheumatic Diseases

It’s been a long time coming, and the International Journal of Rheumatic Diseases has published the Case Report on my case, which happened almost 2 years ago this month.  I finally got my hot little hands on the doucment so here it is for your reading pleasure.

More on my condition:  Diagnosed with Wegener’s Granulomatosis in 2009, I presented coughing blood from the lungs, and with painful blue fingers.  I ended up in the ICU for a couple weeks straight off the bat with pneumonia and potential swine flu (they assessed).  Although the swine flu wasn’t present it was a time at which it was highly contageous and I was treated anyway just to be safe.  The pneumonia passed and with Steriods and Chemotherapy I was back in a state at which all my treatment and diagnosis could begin.  You can look back in the blog under the search category: Medical to see previous posts regarding my condition and treatment.

After all was said and done, and diagnosed, my fingers were still a problem.  One amputation, of my wedding ring finger, and one finger that healed back to almost normal, then the other 8 fingers were left with a tingling feeling and numbness. 

There are several treatments for the fingers (digital infarcts) and one that is slightly experimental is plasma exchange or Plasmapheresis.  Plasmapheresis is the removal, treatment, and return of (components of) blood plasma from blood circulation. It is thus an extracorporeal therapy (a medical procedure which is performed outside the body). The method can also be used to collect plasma for further manufacturing into a variety of medications.

The procedure is used to treat a variety of disorders, including those of the immune system.  It is very similar and uses the same machines as dialysis, taking out the blood from the body, cleaning the plasma from the blood and putting back in the clean blood.  I went through 6 treatments of Plasmapheresis.

This Case Report shows the treatment that I went through, my fingers, and results from the treatment.  I have great feeling back in all my fingers, it didn’t start until about 10-11 weeks after the treatment but slowly it started to return.  I suppose there is no way really, since I did the treatment, to know if it worked or just the time healing on meds made the feeling in my fingers come back.  But overall, I’m happy with the result.  I only have one finger that’s a little dodgy but it’s the one that I use to tell you how I feel – so it works for that.

If you want to read the Case Report in it’s entirety click here:  CaseReport_IntlJournalofRheumaticDiseases

Sun
19
Jun '11

Medical Update: Discharged from Hospital

Well, not the way I like to spend my weekends, but I feel like I have nipped this lung inflammation in the bud.  Unfortunately, it seems that my Wegener’s has flared up.  Luckily we caught it early so it looks as if I will be starting on some higher level medications from today.  I’m still waiting on my blood work to see how bad my Wegener’s has flared up and what my full course of treatment will be.

Its time for me to make some lifestyle changes again, de-stress and concentrate on my recovery!

Thank you for all the well wishes, I’ll do my best to keep everyonr posted on my situation but for now I am out of the woods and back in recovery mode. 

Now home to see my famiy and plenty of rest.

Sat
18
Jun '11

Medical Update: Geiger count me out

Well were on to the Dr. House portion of our visit, I’m used to this one…

Was sent to Nuclear Medicine and X-Ray for some scans to look at the inside of my lungs. in three different ways –  I believe they are looking to see if there is a pulmonary embolysm and why exactly they are bleeding. 

         1. Chest X-ray

         2. Ventilation Gas Scan – radiation gas is breathed in through a tube, that mixes with the oxygen and highlights problem areas with regard to air in the lungs during a CT like 3D imaging scan

         3. Radiation particle Scan – radiation in the form of particles are injected into the blood stream to show blood function to the lungs during a CT like 3D imaging scan

They wheel the machine over to me, and I use this tube to breathe in the radiation gas, sit for a second while they use the geiger counter against my chest to make sure there is enough gas in my lungs. I’m radiated!  They show me the scan on the screen and I can see all these little radiation gas floating around in my lungs.  Weird.  It takes 10 minutes for the CT like scan to finish.

The radiation scans are to determine if there is a blood clot in my lungs, i.e. pulmonary embolism.

And the results are back: No pulmonary embolism – hey that’s good… right??

Well, yes and no.  It means that there is no infection in  my lungs but it also means that my Wegener’s is the cause of this problem and that it is the beginning stages of a flare up of my Wegener’s Granulomatosis.  I have to say that I have become much more aware of the reactions of my body since my initial diagnosis in 2009.  I’d say its a clear sign that things are going wrong when the common cold can turn to pneumonia in these bad ass lungs, so I’m lucky that I can catch things early.  This is definitely early.

Vasculitis – Micrograph showing a vasculitis (Churg-Strauss syndrome). H&E stain.

   The constant of drugs include immunosuppressants, steriods and other preventative medications :

Azathioprine (/ˌæzəˈθaɪɵpriːn/) also called Imuran – is a purine analogue immunosuppressive drug. It is used to prevent organ rejection following organ transplantation and to treat a vast array of autoimmune diseases, including rheumatoid arthritis, pemphigus, inflammatory bowel disease (such as Crohn’s diseaseand ulcerative Colitis), multiple sclerosis, autoimmune hepatitis, atopic dermatitis, Myasthenia Gravis, Neuromyelitis Optica, restrictive lung disease, and others.

Prednisolone is a corticosteroid drug with predominant glucocorticoid and low mineralocorticoid activity, making it useful for the treatment of a wide range of inflammatory and auto-immune conditions[2] such as asthma[3], uveitis, pyoderma gangrenosum, rheumatoid arthritis, ulcerative colitis, temporal arteritis and Crohn’s disease, Bell’s palsy, multiple sclerosis,[4] cluster headaches, vasculitis, acute lymphoblastic leukemia and autoimmune hepatitis,[5] systemic lupus erythematosus, and dermatomyositis. It is also used for treatment of sarcoidosis, though the mechanism is unknown.

Amlodipine(as besylate, mesylateor maleate) is a long-acting calcium channel blocker (dihydropyridine class) used as an anti-hypertensive and in the treatment of angina. Like other calcium channel blockers, amlodipine acts by relaxing the smooth muscle in the arterial wall, decreasing total peripheral resistance and hence reducing blood pressure; in angina it increases blood flow to the heart muscle.

If I can stay on this cocktail, in high doses for a short time, I may be able to get my Wegener’s back under control then I will be able to bring down my dosage and get back on a managing level of drugs.

The alternative and the option I’m hoping against is the Chemo drugs in place of the Azathriopine, which is called Cyclophosphmade, this is the drug I was on for 8 months in 2009 when first diagnosed. This is the most evasive treatment but effective.  It’s what wiped out my egg supply and made me infertile, so as you can see it is very toxic to the body… it IS chemo:

Cyclophosphamide is a nitrogen mustard alkylating agent, from the oxazophorines group. It is used to treat various types of cancer and some autoimmune disorders. It is a “prodrug“; it is converted in the liver to active forms that have chemotherapeuticactivity.  The main use of cyclophosphamide is together with other chemotherapy agents in the treatment of lymphomas, some forms of leukemia and some solid tumors.It is a chemotherapy drug that works by slowing or stopping cell growth.

Cyclophosphamide also decreases the immune system’s responseto various diseases and conditions.  Cyclophosphamide is also used to treat minimal change disease,  severe rheumatoid arthritis,  Wegener’s granulomatosis, and multiple sclerosis.

I suppose other than the obvious, having a flare up of my Wegener’s – we’re worried about our final attempts at IVF.  If I am to go back on Chemo it will mean that we need to wait until I am back in remission before we can attempt again.  We’re hopeful that we can stay on the current medications that will allow us to continue when I am of better health.

I’m still feeling pretty normal, not sick at all and hoping that I am going to have some good results from these IV treatments and not go straight down hill.  I’ll be finding out my medication regime as soon as they are ready to discharge me tomorrow morning,  For now I’m watching the emergency helicopter  come and go from my 9th story room window, blogging away and watching movies from my not-so-comfortable hospital bed.  Can’t wait go get home to all my fur babies and my love Birdie.

Fri
17
Jun '11

Medical Update: A maybe not-so-quick trip back to the Hosptial

I knew we’d get back here eventually.  I’ve been admitted back to hospital, the Royal Melbourne Hospital, with pulmonary hemorrhage associated with my Wegener’s Granulomatosis condition.  You can read more about Wegener’s on wikipedia (http://en.wikipedia.org/wiki/Wegener%27s_granulomatosis).  Unfortunately, with this condition it doesn’t ever really go away, instead, similar to Cancer it can go into remission and not appear for years at a time. 

I was first diagnosed in 2009, and after 8 months of oral chemo Ive been in remission for over a year.  I’m assuming its a recent cold and cough that really got my lungs worked up this time.  Seems like everyone at work has had this cold.  Due to the immunosuppressants I take – my lungs just didn’t hold up.  I’m hoping that because I’m not feeling sick, other than bleeding lungs, that this treatment of high dose intravenous steroids and antibiotics will get me back t normal and we can avoid the chemo regime again.

I am scheduled for macrosteriods and antibiotics to be delivered intravenously for 3 days in order to shrink the bleeding in my lungs, if all goes well I may avoid a Bronchoscopy and be able to be discharged on Sunday with some follow up treatment.  So, I sit in my little hospital bed, awaiting a visit from my husband in about :30 minutes (he’s bringing my pillow from home), looking out the window of the 9th floor Ward at the city scape and a big Australian flag.  I can see my work building from here… so now I’ll check my work email and keep from being so bored!

Speaking of the medical system in Australia, I must make my comments now.  All Australians are guaranteed a ‘medicare card’ and they are entitled to medical coverage by the Government irrespective of having a job or health care insurance through work.  I have health care insurance as a back up to my medicare privileges. As a hospital inpatient you have the option of being admitted to a Public Hospital, or a Private.  Private means out of pocket expenses and although you have a private room, you can be charged for items that are sometimes covered by your health care insurance (but sometimes are not).  Last time and this time I have gone Public.  Public means that 100% of my stay, bed fees, doctor fees, and hospital expenditures are covered by Medicare.  You can’t beat that.  I happen to have a private room this stay, which is nice and private for blogging and working, or staying up late to watch TV, and I have full reign of the medical staff on call at no cost to me.  Good Times.  There’s alot to be said for a health care system that works.  And I’m saying it here!

Thanks to everyone for your kind words and prayers, it’s with your support and friendship that I am able to keep on keeping on, live and love my life, and share it with you.

Update tomorrow!  See you then.

Wed
3
Feb '10

Mady medical updates available online

Updates on my mom, Mady’s, condition in the hospital is available on an info blog Adam has set up at http://www.titanstrides.com/mady

Please check here periodically for updates and leave comments or questions.

We are hoping for a speedy recovery.

Mon
24
Aug '09

Update on things…

So far so good… 

Well, this is my third week back at work and I’m getting back into the swing of things here.  My contract with Origin Energy is up at the end of October and I am looking forward to getting a new assignment.  I will most likely still work in the CBD (Central Business District) of Melbourne, which is great because you have everything at your fingertips – shopping, restaurants, bars, scenery, friends, trains, and the list goes on.  I think I’d miss not working in the city – the experience is really worth it.

My Australian Citizen (dual citizenship)

Well its official, I am eligible to take the written citizenship exam- and get my dual citizenship U.S./Australia.  It means I am an official Australian immigrant 😉  I get to vote, and have an Australian passport, and of course I’ll get to be an Aussie! I’m very excited.  Once I sit for my exam I will get to go through an official ceremony – stay tuned for more on that and pictures to come.

Weekend Getaway

So, Rod’s been saying we should get away for a weekend, I’m looking forward to heading off to the Gold Coast for a couple days – pool, beach, Audi A6, and Sea World!  We’re staying at the Sea World resort and will be looking forward to the roller-coasters!  Sea World is located on the Gold Coast, which is in Queensland on the eastern seaboard – it’s the one and only amusement park in Australia.  I’m really looking forward to getting in the heat, on the beach and out of this cold Melbourne weather. We’ve been trying to get away to the Gold Coast since my last job when I was travelling but haven’t had much luck as we both got sick last time we tried to go.  Just a couple weekends away!

gold-coast.JPG

Flemington Races

The races are coming! The races are coming! After being here four years I am finally going to get my experience at Flemington Racecourse in THE BIGGEST horse race in Australia. November 3rd!  It’s a public holiday and we get the day off from work in Victoria for the Melbourne Cup – and this year we are going to the races with out friends Georgia and Damian to live it up a bit with fancy dress, big giant hats and a glass of champers in hand. I’ve always wanted to go to this – it’s suppose to be super crowded and I hear you may not even get to see a horse run by (crowded), but if I can get a taste of the feeling of Melbourne Cup day in general, I will be happy!  It’s one of those things that you have to do when you arte here and something a lot of Melbournians never do.  Much different to the country races we go to each year (and you may have seen elsewhere in my blog), here are some pics from last year’s races…

horse_spring-carnival.jpg

flemington.jpg hats.jpg horse_viewed_08.jpg

Medical Update

So far so good I say, I have had my first round of check-ups with each of my specialist doctors and my blood work came back “almost” normal.  Once my bloods are back to normal I can be taken off of the chemo therapy and steroid drugs and be but on something less toxic, drugs that wont mess with my immune system.   I guess they will call this remission but I have no idea at this point.  My next set of check-ups is the 1st week of September.  I’m hoping to get a new kind of bandage for my finger – that is still healing – and for the docs to have a look at my other fingers.  I have regained feeling in the fingers of my right hand retaining only a little numbness on the tips of two of my fingers, but on my left hand I have one finger that has still gained no sense of feeling – I suppose my biggest fear right now is that I might lose another finger in this process.  So on that note… the drugs make me tired, irritable, and have to pee a lot, and the fingers are still healing. I can’t hope for much more than for my kidneys, liver and lungs to stay clear until I get on my next regimen of drug therapy – pray for good blood work and for no further deterioration.

Options: Adoption v. Surrogacy

Due to my condition I am not able to carry to term so we have been researching our other options.  We’ve been struggling over this.  There are very few options in Australia within reason.  Our friends have been on a waiting list for 3-years now to adopt a child from Thailand, they still don’t know when that is going to happen. The waiting list in Australia is years long 3-5 years.  Adoptions from countries outside Australia are limited to a very small number in the low hundreds.  I’ve resorted to finding out how to adopt from the U.S. as it only takes about 1-year and 5000 babies from Russia are adopted in the US alone. It’s quite odd really that it is so difficult here. Worst of all is that surrogacy is illegal here – so we can’t even pay someone to carry a child for us.  We are hopeful we will find some options here through a company that sets Australian families up with a surrogate in India or the U.S. to carry the child,  If we are able to harvest my eggs we would be able to have our own child through surrogacy – but we won’t know if harvesting eggs will jeopardise my health until I am in remission and we can do some proper testing.  Only other option would be to get a donor egg and Rod’s sperm for a surrogate – which isn’t ideal but is a possibility.  I suppose we will throw around all the options and costs before we decide to go forward or decide to just keep it the two of us.  We’re both 40 this next year so a decision is coming soon.

Tue
4
Aug '09

Hanging In…

It’s been a difficult road for me.  I believe that because everything has happened so quickly, and this disease was such a suprise it has really taken it’s toll on me physically and emotionally. 

I’m so ready to get back to work… things just keep delaying my return.  Sunday I started hearing something in my lungs, fluid, or something else.  I’m quite scared to hear something like this after the surgery.  I had to have Rod take me to to the Emergency Room to see my doctor there – additionally I wasn’t able to keep any food down for a couple days.  My doctor believes the chermotherapy drugs I’m having to take causes some nausea here and there.  They did do an x-ray and have told me that I have pleurisy which is that the lung I had surgery on is rubbing against my body which is causing that sound I’m hearing and feeling as well.  The drugs I’m on should help to heal the pleurisy and well… another week of healing something else.

My hand is still bandaged, we have to change it every couple days.  It will be bandaged for weeks still. It’s very difficult to even look at my finger – missing.  It almost looks invisible.  I still feel the missing part of my finger, quite often it itches snd sometimes I get a pain.  If I’m being completely honest, this is definitely going to be the most difficult part of this disease.  I’m still suffering from numbness and some pain in the tips of the majority my fingers, which I may become acustom to after a while should this persist.  I have tried 5 sessions of the plasma pheresis in an effort to help the circulation.  I suppose my biggest fear is to lose another finger, the numbness certainly doesn’t help this fear.  The treatment hasn’t really helped my fingers and it’s meant that I’ve had to have several blood transfusions in the process.  Not happy about this either – not a fan of taking the blood of strangers into my body, even though it is checked throughally, I worry that my body won’t accept the blood, make me sicker, oh there are a million reasons.

Moving on, and that’s what I must do – I’m hanging in there.  Thanks for your prayers and positive words – it all helps.  I am thankful for all of you, my friends, and all of the time you’ve taken to be there for me.  Individually, your friendship is something I will not forget.

Wed
29
Jul '09

Home Sweet Home

Well, finally discharged on Monday – I’ve been home for a couple nights now.  It’s good to be back in my own home again.  I have to realise that we only lived in our new house for 2-weeks before I went into hospital – I was gone for 4-5 weeks and now I’m back!  I still can’t find my way to the bathroom in the middle of the night – it’s all still too new getting around in the dark! 

I have a bit of outpatient treatment to go in the next few weeks, today is my last blood transfusion (thank gawd), but my red blood cell count has been quite low with the plasma pheresis treatments.  Without the blood transfusions I am quite drained, tired, and really unable to function appropriately.  Friday is my last plasma pheresis treatment, in an effort to remove the plasma from my blood replacing it with good plasma – all in an effort to increase circulation to my fingers and reduce the numbing in some if my fingers.

The next 6-months are going to be my test, with my medication it makes it harder to fight off infection (auto-immune), so after I hit the remission marker I will be able to come off the drugs and return to life as normal!

In the interim, my brain is becomming mush!  I can’t wait to get back to work and being busy again.  I’m going back to work on Monday, and I can’t wait to get going again. It will be nice to see my co-workers again and to provide them with the support they’ve been missing with me gone from the team.  Everyone has been so supportive during this difficult time. 

So, I’ll be updating on the blog here and there with medical information however I hope that my life can return to normal and my blog as well! 

Sun
26
Jul '09

Days off from the hospital

It’s been a long four weeks in hospital and with all the surgeries and treatments it has been quite a busy time for me.  I had discussed with my doctor leaving for good on Friday or Saturday.  In the process of agreeing to do the plasma pheresis treatment, it was agreed that I would have a day-pass on Saturday and Sunday to be with Rod.  Unfortunately my diabetes isn’t cooperating which is my hold up this, Sunday, morning. Doesn’t mean I’m not going home today, just means that there’s always a hold up.  The mentality around here – hospitals in general – is that people can’t take care of themselves.  Looking around at my roommates for the past 4-weeks, most over 70, a lot over 90, it’s understandable. 

But as a 39-year old woman that has had diabetes for 11-years – when I leave here I am obviously going to have to take care of myself. If I had checked out on Friday I would have been having to deal with my blood sugars at home today alone… doesn’t matter, they don’t have handcuffs here I hear – so when 10am rolls around, good blood sugar number or not, I’m outta here, man.

Yesterday we just stayed home, and cuddled on the couch, watched a little footy and Law & Order… and played with the furry children.  Spot has definitely gotten bigger since I moved in to the hospital, after four weeks he’s as big as our 8-year old cat Pete and soon he will overtake him in size.

Heres my pics with the furry family from Saturday. 

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Yesterday was more relaxing, today, Sunday we are going to do a movie – Transformers (which we’ve been waiting to see!) and we’ll catch some lunch and just be together.

I’m so grateful to have a partner like Birdie, who loves me so much, and who I know will be there through everything.  These challenges in out life certainly make our love and relationship stronger.  Birdie’s family, as well, my in-laws, sister- and brother-in-law, little niece and nephew and our friends… everybody has been so great!  I couldn’t ask for more support.  Even my friends from home, on Facebook, and my dedcated blog readers (yes, that means you), have been helpful in my contiued recovery.

And I can’t forget to thank everyone at work, my Agency and my current employer that have been so supportive in being away so long and still knowing that I have a job to go back to.  As a self-employed person this is definitely a worry I don’t want to have to be thinking about while I am strugggling in the hospital.  Thanks to Blair, Jas, Andrea, Janelle, Catherine, Mat and Mary-Anne – without you guys I’d be a mess!

Thank you to everyone.  I’m about to go out for the day then I will be back in the hospital for as few more days for treatment and one last procedure (TOE Heart Scan Monday morning).   I can’t wait to be cleared to go home!

I’m off!

Fri
24
Jul '09

Surgery success

Finger Amputation 

If you want to call half of a missing finger success, well then it is.  The dead hurting part is is gone and the feeling is starting to come back now after the surgery.  I am starting to have some phantom pain in my finger – they are all wrapped up in a bandage with the three good ones hanging out (I guess so I can type with 7 fingers).  When I try to bend the fingers I can feel the one that is missing  in it’s entirety and it’s a little itchy on the finger nail… that isn’t there. 

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So the bandages don’t come off till at least Monday – so it won’t be quite as confronting until then – I can see it’s gone,  I can sure feel it’s gone (sometimes) but I haven’t had to look at it yet.  I’m sure I’ll have another little cry about it – then, well… get on with it.  I’ve already noticed it’s easier to hold my coffee cup without that annoying finger in the way, ha-ha.

Perm Cath Insertion Today ~ Plasma Pheresis Treatment

The permanent catheter went in today, deep under the skin next to my clavicle bone on the right side below my shoulder.  It has access to take blood and give injections. This is how I will get my treatments for Plasma “Exchange” Pheresis.  Plasma Pheresis treatments also start today and right now I am sitting at a dialysis machine that can also be used for plasma exchange.  Its quite interesting – they’ve explained to me how the machines work but bugger it if you think I can explain it back to you.   Here’s what the machine looks like – you can see my blood travelling through, getting clean.

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In better news…

I have been approved for a day-pass out of the hospital on Saturday and on Sunday so I can spend the day with my husband and get out of this place after 4-long trying weeks. I’m back in bed here each night so they don’t give my bed away – and back on Monday to finish my treatment, and then they will try to do the TOE Hart Scan on Monday , again after it has been rescheduledabout a million times.  The TOE Heart Scan is used to confirm that I “do not” have Endocarditis, or problems with the heart.  Once we rule that out we can cease antibiotics and continue with the steroids and Plasma Pheresis treatments .