My Life Abroad: The Adventures of Two Birds
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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. 

 spot-jacket.jpg pete-laundry.jpg spot-head-shot.jpg pete-day-off.jpg

furry-family2.jpg

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. 

 loss-finger2.jpg loss-finger1.jpg

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 .

Thu
23
Jul '09

A few more days in hospital…

I’m going home on Saturday and Sunday.  Nobody is going to stop me!  The hospital is giving me a day-pass to leave on Saturday and Sunday provided I am back in bed at night – and I will stay through Tuesday next week to a new treatment for the numbness in my other fingers in to avoid losing any other fingers. 

Friday 24 July 2009 @ 9:30am

Perm Cathader Insertion ~ Tomorrow we have decided to go forward with the insertion of a cathader implant above my heart deep under the skin.  This insert will be used for outpatient treatment called Plasma Pheresis which I will be undergoing to improve the blood and circulation in my body in general and hopefully, along with the steriods, will help with the pain in my fingers.

Outpatient Procedure

Plasma “Exchange” Pheresis ~ I have some other fingers with numbness and have been worried about the possibility of losing other digits.  The docs want to do a similar procedure to dialysis where they will hook me up to the dialysis machine for several treatments to take all the plasma out of my body (called Plasma Exchange), run it through the machine and put it back in.  Plasma is the part of the blood that holds all the toxins and doing this means that it may clean out blood clots and other things that are clogging my blood causing pain and numbness in my other fingers. It;s a shot, I’ll certainly be trying this so we may see more on the blog about Plasma Exchange in coming weeks.

Treatment  going forward

I have to say that I am lucky.  Read more about Vasculitis and Wegener’s Granulomatosis and you can see that these are very rare and deadly diseases. Most present with serious kidney (renal failure), liver and lung disease.  The vasculitis is a type of auto-immune disease and this presents even more problems.  I’m lucky because my kidneys and liver are clear.  Better odds for me.  With the lung biopsy this week we were able to determine that the type of vasculitis was in fact Wegener’s and from these we were able to drain the lungs of the toxins that had invaded my body.  Coming in with pneumonia and blue fingers, well it was the vasculitis acting up and showing itself.  Unfortunately because I didn’t know I had this – the time it took to determine the disease led to the loss of my finger. 

I can go on now, steroids in heavy doses will be used like chemotherapy to put my Wegener’s into a state of remission, maybe for years.  But its something that has to be constantly watched and if I get sick it’s an automatic trip to the hospital.  I’ve had a couple bouts with pneumonia in the last year or so – so that’s obviously going to be a trigger for me to watch.

The finger(s)

The finger is gone.  I’m in recovery now.  It’s stressful, distressing that my wedding ring finger is all effed up now.  I’ll be so conscious of it.  But I am going to use it as a reminder that I am still here, I am alive.  It could have been a different story.  Had I not gotten to the ER when I did (thank you Norelle for saving my life) – not knowing about the vasculitis, going on without care would have certainly killed me.

Other Impending Issues

Pregnancy has obviously been in our plans for the past couple years but with this condition, getting off the steroids long enough to get pregnant and making it through a successful pregnancy (for me and the baby) is almost impossible.  Its a depressing point for us but we are committed to having a child so we will hope to start the adoption process soon.  We know from experience (Dawn & Woz) that the adoption process in Australia takes 3-4 years to complete – so we will start very soon!

Looks like I won’t be going back to work until at least 3rdof August 🙁

Here’s more information about…

Vasculitis

Vasculitis represents a family of rare diseases and can affect people of all ages. The outlook for people who have vasculitis varies depending on both the type and severity of the vasculitis. Treatment is often very effective if vasculitis is diagnosed and treated early. In some cases, it may be a chronic problem, requiring ongoing treatment, or it may come back (“flare”) after a period of remission. In more severe cases, treatment may not help, and vasculitis can lead to disability or even death.

There are over 15 vasculitides (plural of vasculitis) affecting the small, medium and large vessels. They include: Behcet’s disease, Buerger’s disease, Central Nervous System, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis, Henoch-Schönlein purpura, Hypersensitivity vasculitis, Kawasaki disease, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu’s and Wegener’s granulomatosis.

Although the diseases share many of the same symptoms and treatment courses, each is different and patients must learn as much as possible about their individual disease. Additional research is needed to learn more about the various types of vasculitis and their causes, treatments and remission patterns.

Wegener’s Granulomatosis

Wegener’s Granulomatosis (WG) is an uncommon disease that affects about 1 in 20,000 to 1 in 30,000 people. Symptoms are due to inflammation that can affect many tissues in the body, including blood vessels (vasculitis). It is also considered a disease of abnormal immune function.

There is no known cause of WG; but it is not contagious, and there is no evidence it is hereditary. It is systemic, meaning it affects the body as a whole. It affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs. For reasons not clear, blood vessels in those areas may become inflamed and clusters of certain cells (granulomas) may occur.

WG is an uncommon disease, which can occur at any age. It most often occurs in the 4th and 5th decade of life. Patients are divided equally between males and females. It appears that Caucasians are far more commonly affected than other racial groups.

Treatment: will vary based on patient symptoms, disease activity, organ involvement and lab test results. Patients with kidney involvement and more severe WG are commonly prescribed Cytoxan and prednisone as initial treatment. Ideally, the use of Cytoxan will be limited to a three to six month period and then replaced, based on kidney function, by methotrexate or azathioprine.

Remission: There is no cure for WG, but early diagnosis and proper treatment will be effective and the disease can be brought into remission with complete absence of all signs of disease.

Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease. Treatment can produce symptom-free intervals of 5 to 20 years or more. Some patients will achieve a drug-free remission. However, relapses are common but can be caught at their earliest and most treatable stage, for most patients, by paying attention to patient symptoms and lab tests. WG patients in remission must not hesitate to see a doctor if any WG symptoms return or if they are not feeling well.

Tue
21
Jul '09

Amputation Tomorrow

Well, the two tubes from the lung biopsy have been removed successfully today and finally I am free from the machines and have a little more independence from my hospital bed. 

Wednesday, 22 July 2009 – 1:30 pm

Finger Amputation 

Well, it was scheduled for earlier last week but the lung biopsy had priority over everything so the fact that I have to go under general anaestesia for both procedures just meant that we could wait longer before we did the finger.

So all this extra time we have been waiting for the finger to demarcate – or to see what skin is not viable.  The place where they cut the finger at the bone is purely based on the good skin surrounding the finger that can be used.  After all this time we have waited I had hoped that more of the finger would be viable and be able to be used.  Unfortunately I am going to lose from the top knuckle including my nail, and mid way to my major knuckle – so between my two top knuckles.  Its disappointing that this is my wedding ring finger – I know I’m not going to be happy about it when I see  it but I am trying to be positive and strong about it.

I’m going to have to go through the general anesthesia again and that is going to be tripped out – or coming out of it.  I don’t like being so much out of control but it will be interesting to have this experience again.  Somehow I feel like I may have that chance to have the halluniciations of being close to my Dad again.  I hope for that feeling.

Next Week – Outpatient Proceedures

Transoesophageal Echocardiography (TOE)

I’ve talked about the TOE  test in other posts but with things wrapping up here by Friday I want to  wait to do this heart scan until later as not to interfere with my other procedures.  Because I can do this as an outpatient procedure.  The TOE is the heart scan that uses a small video camera to look at the valves in the heart to make sure that of the valves are clean and none are blocked.

You can read more about this procedure and how it works in the post below.

Mon
20
Jul '09

Transoesophageal Echocardiography Test

Pathology Reports ~ Update!!

The pathology reports back from the Lung Biopsy show that the Vascilitis is indeed Wegener’s Granulomatosis. So we are on the right track with the treatment, we’ve started the steroids used for Wegener’s so we are on the right track for treatmrnt forward.  Not out of the woods yet! 

The tubes are quite large and are held in with suction. Yesterday the suction was turned off and when gravity takes over the remainder of the lung begins to drain out the “bad stuff”.  Lets just call it “bad stuff” for now. I have no effing idea what it really is – the vasculitis, toxins, junk? Doctors just came round to evaluatem my lung drainage… and there is still some bubbles between my lung and where the lung should be sitting.  After they deflated the air from my lung during the biopsy the process of getting it reflated (is that a word… Dawn?) is a process of streghtening the lung, doing deep breathing excercises and getting the lungs fully inflated (thats the word!).

Looking like 2-more days before the tubes from my lungs and chest can be removed and I can move on to working on the other ‘problems’ I’m facing… heart scan (possibly Tuesday), returning to work, the finger removal, returning to LIFE, etc.

Sunday, 19 July 2009

lainey_harry.jpg

Got a visit from the Baby Birdies Mum and Dad -Amanda and Brad.  Baby Harry and I had our best visit ever, he was so cute, laughed and smiled at me and let me hold him.  Happy auntie Lainey – heres a quick snap with my phone, I swear he looks just like Amanda, big brown eyes and brilliant smile.  This visit was very nice and made my day today!  It’s so nice to get a full weekend of visitors it sure made my weekend go by fast this time!  Knock wood that this is my last weekend in here!  Can’t wait to see the little ones back on their own homefront in their new house on their  own turf.  Really, I just can’t wait to see the new house!!!  So excited with the new kitchen and everything!  Here’s my little nephew Harry on his visit with me at the hospital.

Baby Spot gets his first bath

It so sucks that I can’t be home to see my new puppy’s first’s.  Bidie gave Spot his first bath today, which I heard he needed…  luckily he got some great pictures for me to blog about something new.  Thank gawd… cause the blog’s been depressing s of late, eh?  So cute puppy pictures for today.

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Tuesday, 21 July 2009

Transoesophageal Echocardiography (TOE)

The TOE is an invasive echo test provides the doctor the very best soundwave (ultrasound) pictures of the heart. It evaluates heart chamber size and pumping action, valve appearance and function and the blood flow through the heart. The ultrasound images of your heart are taken from your oesophagus (food pipe) which lays next to the back of the heart. TOE provides vastly superior picture quality compared to echo pictures obtained from the chest surface, where the picture quality may be variable quality. There is much less interference to sound wave travel from the oesophagus into the heart compared to travel from the chest surface, through the chest wall and lungs into the heart.

The study uses a similar method as looking down into the stomach. The back of your throat is numbed with a xylocaine local anaesthetic gargle. You will be fitted with a mouthguard. An intravenous tube (IV) will be placed in your arm to sedate you (please note sedate means you are still fully aware). The sedation medicine is given to make you very relaxed. After you are very relaxed and possibly asleep (not), the TOE probe is placed gently into your mouth and passed down your oesophagus to the area close to the heart. When the probe is in the right place, the soundwave pictures are taken. After the test is completed, the probe is removed and the IV is taken out of your arm. You then stay for two hours before you can go home. I will not be going home the same day from what I hear we are awaiting word on the status of the finger.  I’m starting to get queasy about putting a new finger picture up as it is quite disturbing.  The finger situation has somewhat changed, only in that to get better final results in look and length of the remaining piece of finger – we need to let thegood parts of skin continue to heal.  The most good skin we can retain means the longer and more normal the finger will look at the end. 

Thu
16
Jul '09

Post Surgical

Thursday, 16 July 2009

For those of you that know me well, drugs have never been my thing – I even find it hard to self-medicate with basic over-the-counter medication.  Well my experience with anesthesia this time was a trippy one for sure! I’ve had some experience with general sedation but this time it was quite odd.  Thought I’d make some notes and recollections of the experience today.

Going in for the procedure was routine.  Ate breakfast around 6:00 am and was then put on an IV drip of nutrients to fast for the remainder of the day.  At 6:00 pm I was retrieved from the 3 North Ward, bed 2 (which had a beautiful sunrise).  I had inquired about coming back to this particular bed/room.  I had a particularly lovely roommate Ruth, age 92.  A room with a great view and well, hell – after being in one room for a week, I wasn’t pleased with the thought of leaving my room for another room for the next 2 weeks.

Going under is just ‘normal’, they ask you a million questions about drugs, history, and how you are feeling on that day.  Blue hat goes on, tape up your ring that you can’t get off, new IV canella taped to your arm, wheeling down the cold tile hallway  with only your dressing gown with a broken tie in the back.   The shot in the hand “just a little scratch” then “count for me”.  I asked if I could tell a story…

It’s almost like a bright white room, so bright that I can’t open my eyes.  I feel like I can’t move my arms but not because they are held down, it’s because they are so heavy.  I can hear everything the Recovery nurses are saying and I think I hear things they aren’t saying.  I answer.  Sometimes it sounds like my Dad, sometimes I feel a nudge I try to look but nothing is there.  Nobody is standing around me but I hear voices closer.  As I think I answer out loud I say inside my head “nobody is talking to me”.  It’s all so fuzzy and the tear between hallucination and reality begins to break through.  I try to become sane again inching my way through the muck.

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Wed
15
Jul '09

Biopsy Procedure Today!!!

No… really, today!

Wednesday 15 June 2009

So moving on, the surgeon has confirmed (for now) we are on track for the procedure injust a matter of hours from now.  It’s been frustrating sitting in my hospital bed for 3-days waiting for this – also because the recovery time will just have to be extended out further. 

I’ve been quite tired today, I was woken at 6:00am for breakfast before I was meant to fast for the day prior to my procedure, after that I just went back to sleep until 1:00pm, it was a nice rest for my mind as emotionally I am feeling drained thinking about the possibilities for our future, recovery, pain, etc.

I had a wonderful visit from Anna my last roommate here at the hospital.  She happens to be a nurse here at Box Hill Hospital and she looked after me when she shared a room together and I couldn’t get out of bed. Still looking after me know, in good nurse fashion, she made a visit today bringing me Tim Tam biscuits (cookies). Yum.  I can’t eat prior to my procedure but I will be waiting for he soonest chance to bite into the chocolaty yumminess!

So, the VATS procedure is the one today, here is a breakdown of what happens…

What is Video Assisted Thoracoscopic Surgery?

Assisted Thoracoscopic Sugery (VATS) is a minimally invasive surgical procedure used to diagnose and treat illness or injury to the lung and other organs in the chest cavity (thorax). During VATS, a tiny camera with a light source is inserted through a small incision between the ribs. A second small incision is used to insert special instruments between the ribs into the chest cavity. Traditional thoracic surgery involves a large (six-to-ten inch) incision in which the ribs are spread apart for the surgeon to gain access to the organs in the chest cavity. This procedure, known as a thoracotomy is still very safe, but involves a longer recovery than a VATS procedure. VATS patients can typically go home in one to three days. Other benefits of VATS include less pain and a quicker return to a normal active lifestyle.

Okay, I’m ready to go now… just waiting for the orderly to come get me.  I will check back in soon! 

Tue
14
Jul '09

Wegener’s Granulomatosis

Tuesday, 14 July 2009  

The conclusion thus far is “Wegener’s Granulomatosis” which is an uncommon disorder that causes inflammation of your blood vessels, which in turn restricts blood flow to various organs. Most commonly Wegener’s granulomatosis affects your kidneys, lungs and upper respiratory tract. The restricted blood flow to these organs can damage them.

Besides inflamed blood vessels, Wegener’s granulomatosis produces a type of inflammatory tissue known as granuloma, found around the blood vessels. Granulomas can destroy normal tissue. What causes Wegener’s granulomatosis is uncertain, but it’s not an infection nor is it a type of cancer.

Early diagnosis and treatment of Wegener’s granulomatosis may lead to a full recovery. Without treatment, Wegener’s granulomatosis can be fatal, most commonly from kidney failure (which I am clear of kidney problems as present).

Remission

There is no cure for WG, but early diagnosis and proper treatment will be effective and the disease can be brought into remission with complete absence of all signs of disease.

Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease. Treatment can produce symptom-free intervals of 5 to 20 years or more. Some patients will achieve a drug-free remission. However, relapses are common but can be caught at their earliest and most treatable stage, for most patients, by paying attention to patient symptoms and lab tests. WG patients in remission must not hesitate to see a doctor if any WG symptoms return or if they are not feeling well.

For me…

So far I have a good clear kidneys and no sign of renal failure.  The results from my lung biopsy (thay has been twice now postponed) will be the final reality in this saga – in determining the stage of my condition and how we will proceed further.  We are hopeful that the lung biopsy will show little damage and we can proceed with medication and head toward full remission.

All your thoughts and prayers are wonderful and needed at this time of waiting.  Stay tuned for more information tomorrow on the progress of the biopsy.  Notably after the biopsy I will be in recovery and may not be able to communicate via thr blog for a couple days.  I will do my best to get the word out.  Results take 48-hours anyway.

Mon
13
Jul '09

Lung Biopsy Rescheduled again

Monday, 13 July 2009 

Again there has been rescheduling and my Vascular Surgeon has been called to the Austin Hospital today for a 7-hour surgery that has again pushed my procedure back until tomorrow, Wednesday. So again we are back on the schedule for the 6:00pm  lung biopsy procedure tomorrow.

So the procedure tomorrow involves a general aneastesia for a biopsy of the lung, to do this they will put a scope down my sinus cavity into the lung to get a view inside, check for damage from the pneumonia and remove any excess fluid or blood that remains.  They will then collapse the lung and make three incisions from the outside under my left arm into the lung to retrieve the samples. 

Because they will be making three incisions they will use a staple to repair each and two tubes will be left on the outside of the body during the healing and recovery period.  Recovery time for this procedure can be between 5 days to 3 weeks depending on complications.  We are shooting for the shorter. 

The amputation of ‘little joelene’ will be put off until the end of this week.  This procedure too requires a general aneastesia but there is no recovery time and once this procedure is complete I will be able to be discharged.  More on that later – the reason for the delay is to let the ‘demarcation’ of the finger take place on its own.  Once the finger has died and healed in its naural place they will have the best chance of completing the surgery one-time-only, which is preferred.

P.S. thanks everyone for the beautiful flowers…

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Sun
12
Jul '09

Medical Update…

I’d like to be writing about our wonderful Housewarming party last weekend, and I guess I can start off there… or maybe a little lead in to my being sick pre-Housewarming Party.

We only planned our Housewarming Party 2-weeks following our move in date.  It was a tough ask as I had been feeling more unwell than ever.  Many of you know I’ve struggled with Fibromyalgia for quite some time – diagnosed back in ’92.  Fibromyalgia is a neurological disorder that causes serious cronic joint pain and because I had suffered from these symptoms for so long I really never sought out or questioned the diagnosis. We have found that in the course of this treatment that I was mis-diagnosed with Fibromyalgia.

Before I go any further on this story I wanted to say that I’ve repeated it so many times and if I have now asked some family and friends to read the blog it is only out of difficulty and emotion in its repetitiveness.  Please understand this is sometimes my best medium of sharing my personal experiences with all of you.

Sunday – 28 June 2009 @ 3:00 pm

I was feeling sick leading up to the week of the Housewarming party and the day of the party almost the worst.  Party started at 1.00pm and I wasn’t able to even get out of bed until 12.30.  People started to arrive and I was feeling very week.  The night before several of my fingers started feeling tingly and numb.  O the morning of the party two were starting to become discoloured and blotchy grey as if blood wasn’t reaching the tips of the fingers. 

Around 3.00pm I don’t think I could take it anymore… a sad face from Lawrence from across the room, seeing my pain, took me to tears.  I so wanted to stick it out and see everyone and enjoy my own housewarming.  Lawrence rushed me out the back door to Norelle in the get-away car and she drove me to Anglyss Hospital ER to be admitted.  Notably with the waiting room completely full my symptoms got me directly into the ER.

After waiting with Norelle in the ER for about 5 hours Rod and Lawrence wrapped up the stragglers at the party and headed over to the hospital so the Eagles could head home and we could await transfer to another hospital that could equip my needs. Unfortunately we found that initial test results showed a possible Endocarditis, which includes heart and blood infection that effects other areas of the body as well (thought to be related to the blue fingers and bad circulation).  In addition to this bad luck we also found that no hospitals with the appropriate Endo/Cardio teams had a bed to take me in as a transfer immediately. Rod and I ended up waiting at Anglyss ER for three days/two nights awaiting a bed at another hospital in the area that could accommodate me. 

Tuesday – 30 June 2009 @ 5:00 pm

Finally picked up by a transfer ambulance at Anglyss ER around 5.00pm, I was taken to the Box Hill Hospital ER where I was admitted in hopes that I would somehow get a bed at Box Hill by already being admitted to their ER, a ploy by the Anglyss ER Doctor to get me to the right hospital – and it worked.  An immediate admittance into the Box Hill ER was met by the Cardiology Team and an ultrasound of my heart showing that my heart was clear of infection.  However a blood infection was still present.

Wednesday – 1 July 2009 @ 10:00 pm

Admitted from the ER at Box Hill, to their ICU on Wednesday night I was diagnosed with a blood infection in my lungs and pneumonia.  Several others were admitted with similar symptoms to the ICU that were diagnosed with Swine Flu on the same day as me (about 5).  The ICU Team decided at this point to treat me for Swine Flu as well as preventative measures.  At this point I am being treated with Tamiflu for Swine Flu and heavy duty antibiotics for the pneumonia.  In total I spent 6 days/7 nights in the ICU.  Negative results for Swine Flu and positive for pneumonia.  During this time several other teams were visiting with me to discuss my fingers (Vascular Surgery), damage to lungs from the pneumonia (Cardio Vascular), Joint pain (Rheumatology), and others like Internal Medicine ans Cardiology for the Heart. 

Tuesday – 7 July 2009 @ 9:00 am

Finally released from the ICU, I was turned out for admittance to the Ward where I would complete treatment of the antibiotics and the several teams that were meeting with me daily in the ICU were putting their heads together to find the best treatment for diagnosing my fingers and assess damage from the pneumonia to my lungs.

Friday – 10 July 2009 @ 1:00 pm

My final blood tests have come back and the last of the tests have resulted in the following diagnosis – blood sitting in my lungs according to a CT Scan has led to the pneumonia and this must be removed during general anaesthetic in a surgical procedures to be performed on Monday.  Three small incisions from the abdomen will be cut to take biopsy pieces from my lungs.  This biopsy will confirm the diagnosis of Vasculitis and the exact type.

“Vasculitis” is a general term for a group of diseases that involve inflammation in blood vessels. Blood vessels of all sizes may be affected, from the largest vessel in the body (the aorta) to the smallest blood vessels in the skin (capillaries). The size of blood vessel affected varies according to the specific type of vasculitis.

Because there are several types of Vasculitis from large to small vessels – the smallest vessels in my fingers are the biggest concern. 

Unfortunately we have been unable to save one of my fingers fully and the tip will need to be removed in a surgical procedure this week.  Three other fingers with similar numbness and/or dis-colouration have been saved through steriods, antibiotics and other treatment. 

Here are my pre-op finger pics, wedding ring finger most likely from the knuckle under my fingernail as you can see from the side view has already died and is already forming the shape it is healing to take:

pre-fingers_1.jpg pre-fingers_2.jpg pre-fingers_4.jpg

Until Monday I will continue treatement and await amputation and the result of my lung biopsy to pinpoint the type of Vascilitis and the course of action to proceed with going forward. 

Spirits are high, I’m still alive – things could be worse and I have the unconditionaal support of my family, my husband and his family and my friend Norelle and her family. My Mom, Birdie and Norelle have helped me shoulder this load and keep on the positive track – I can’t show my love and/or support more than a brief mention here – I love you guys

Check back here for another post following Monday surgery regarding results and recovery.  All is well and these procedures are safe.  I am otherwise healthy and able to go through with these procedures successfully.  Thanks for your thoughts, prayers ans wishes!  And a special thanks for the visits, flowers, cards, and gifts from:

Bexton
Origin Enery Governance Office
Healthscope Ltd
Norelle, Lawrence and Alex Eagles
Chris and Barbara Bird
Melinda Sheridan and Brent McCartney
Bronwyn Bacon and Amanda Bird
Georgia and Damian Hartin
Mary-Anne Mercuri and Philip Pantano
Dawn and Woz Hartog
St Davids Cricket Club Committee