Friday, April 30, 2010

I'm HOME


First picture is 9th floor.It is the 2 bed cubicle I spent the last 21 days in.I know the cupboards to the left side of the photo very very well.I felt my way along them often.
They are where the linen for the ward is stored and so everytime linen was needed my bed was banged by the nurse as the cupboard was opened and closed.24 hours a day,7 days a week.I didn't get great rest.
The other photo is 5th floor.No Air Conditioning and very dirty.




I got home late last night after 21 days in a Thai Government Teaching Hospital.
Please Ladies and Gentlemen,If you EVER EVER get sick PLEASE,PLEASE go to a REAL hospital in another country.
I was admitted on the 9th April with the headache that has been standard since I have been being treated in this country for Intracranial hypertension.Ok all well and good.They found me a bed with some speed this time which kind of suggested I now had a history in this place and they knew that there was a problem. The neurosurgeon organised for a plain abdominal xray and arranged of a lumbar puncture to be performed later in the day.
So I went and had my xray and he comes back with, No puncture but we are going to give you an enema to see if that helps to reduce the intra-abdominal pressure so that your shunt can drain properly.
Now at this point in time I begin to protest because the previous night I had spent sitting in my bathroom with the worst case of the runs I have had in ever so long and so I KNOW I dont have a stopped up colon.
Ok so they do the enema and the result is more of the runs and the headache is intact.
NEXT>>>>>>>
So now they give me a shot of something for pain. It seems I am able to tolerate Fentenyl as a drug for pain relief (I am allergic to most other pain medications and a few other medications as well). I spend the rest of Friday and Saturday in the disgustingly dirty 48 bed crowded ward before the young resident finally says on Sunday morning I will get you a bed on the 9th floor. Pictures attached.
So I move floors.
Monday morning comes and I am supposed to see my surgeon. It seems that at one point when I spent 2 minutes in the bathroom my Dr came to see me and then he went on holidays for the next 8 days. In fact he was on the ward when I came back from the bathroom (I saw him) and he chose to "not" see me as I went back to my bed.
So now I have spent nearly 4 days in hospital with NO treatment and NO investigations done.
AND at this point in time I havent even been told my Dr has gone away,I find this out two days later.
I found out because I refused to leave when my headache got so bad I couldnt see and they still hadnt done more than give me pain medication. So finally the resident neurosurgeon got permission on the telephone from my Dr,who is now on holidays, to do a lumbar puncture to check to see if the shunt that had been revised in the last surgery I had is actually working or not.
Wed 14th April they do the puncture to find the pressure is 30.Normal pressure is seen to be 13.Yes I have a headache and NO the revised shunt is NOT working.
Ok we have established now that there is a problem.
NEXT>>>>>

NEXT>>>>>>

NEXT>>>>>

Thats right, There is no next. I wait until late Monday 19th (7.30pm to be exact) before the Dr actually takes the time to come and visit me and confirm that yes I have a problem and yes we need to get it looked at and what will we do next.
Ok so he has no idea.
Next morning he was supposed to come back and see me.NO visit
Wednesday NO visit.He stopped in to see a patient in a bed in the cubicle behind me but didnt even have the curtesy to ask how I was. And all this time they are pumping me full of a highly addictive pain medication.
So Thursday he comes to see me and tells me they will do an MRI with Flow studies of the brain to check what is happening there.Now by now my head is hurting so much I would be happy for him to cut my head open and take my brain out. So I spend the $500 and get another MRI which once again tells me my brain is perfectly normal and is behaving perfectly normally and that there is no reason for them to cut my head open or to even put a drain in my head. OK so this is good news.
Friday he tells me this and also tells me he has been consulting with his neurosurgical colleagues and they say put in a V-A shunt. A shunt from the Ventricle to the Right Atrium.They very procedure he has been saying from day 1 he will not do because my ventricles are too small and the risk of collapse and malfunction is too great and the need for revision often would be high.But now this is the ONLY option and the only one he will offer.
So I asked him to take a look at my LP shunt one more time.Ok so I go off for a CT of my abdomen with contrast, A $450 xray that shows that the shunt tip has now migrated by 8 inches even though it was supposed to have been anchored securely and now sits under my liver instead of on the left side of my body where it had been moved to during the last surgery when he did the last revision.
NOW I am really scared.This piece of plastic is now travelling about unsecured inside my belly.It now can puncture something it shouldnt and possibly cause peritonitis and then menigitis as the germs travel up the tubing to the brain. Time for it to come out.

I had the shunt removed on Tuesday 27th. I had stopped having pain injections about a week before because they were sending me crazy and I was losing all sense of reality.

I spent 3 weeks in the hospital in a small bed with nurses who would run away from me rather than help me most times.(I think they were scared I would speak English to them). On several occasions I had to be very persistent about basic necessities such as water to bathe with as I was unable to shower for most of the time I was confined in the hospital.One time the nurse came to my two bed cubicle spoke to the other woman asking her is she needed water or would shower by herself and when the woman didnt need water the nurse looked at me and ran off with the bowl of water I needed.Later that morning the nursing staff were roundly told off by the senior sister because I had been unable to bathe and change my pajamas in time for the Drs to visit.Its was a battle I had a few more times.

Often Thai people would walk past the open area to my cubicle and stop and stare at me like I was a circus curiosity.Like they hadnt seen a white person ever before.And passing people in the hall was very difficult because they stopped and stared and often times stood in my way so I had to go around.Very very difficult when I was relying on holding onto the wall to keep my balance and to keep upright.The nurses were too busy to assist me to walk to the bathroom 8-10 times a day and so I knew the bumps and divets on that wall intimately and so could close my eyes and know exactly where I was in relation to my bed and the bathroom at any point. I often had my eyes closed due to the pain in my head.

Having an IV inserted was a whole other nightmare.The last ones I directed the which nurses were allowed to touch my veins and where they were even allowed to attempt. This came about after one nurse tried to insert a cannula inside my right wrist and hit a nerve that sent pain shooting into my fingers.Electricity that still shoots into my fingers when I move my hand in certain directions.I wonder how long it will be before that damage heals?

So what have I gotten out of my experience?
I have had 4 surgeries. I have spent approx $4500 (conservative estimate, this was wages paid and sales after I had my heart surgery completed) and 7 weeks in and out of hospital. I have a series of xrays which may or may not be of use later due to the conditions they were taken under no matter how much I paid for them and I have 3 incision sites that are healing. The shunt that they inserted was destroyed even though I paid in excess of $450 for it because they chose to not allow me to have it even though it was my property and I paid for it.No refund on that one either. The reason was that it could be dirty and spread infection.The woman in the bed next to nme was allowed to keep her kidney stone. That couldnt even be sterlised unlike a simple piece of plastic. I wonder what was really wrong with the shunt that they wouldnt give it to me? Makes me wonder?
I have several damaged veins that may or may not heal to fully functionality, I have a damaged nerve in my right wrist and apparently I may have a hole in the spinal covering where the shunt had been inserted that may or may not heal by itself.

Oh and I still have my original condition.UNCHANGED.

So where do I go from here?
Right now I am home and am enjoying being in my own safe space with my own familiar things.Over the next few weeks I will work out what comes next.I have a few ideas forming but nothing concrete yet.I have to go back to work headache or no headache because I have no money now and so I will go from there.
Slowly but surely.
I want to thank you all for your Love and Care and Well Wishes.I am sure that is what has kept me alive and safe during the last few weeks.I do know without your support I would not be here as I am.
I am going to post more news more often.Better news and new things that are more exciting and better to read and share.
Thank you all
Light and Love
Tanya

6 comments:

  1. Tanya - So many people love you and wish you well. You are lovely and strong and luminous.
    I think you are beautiful - you amaze me over and over - love and light - john

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  2. Tanya oh Tanya. You are entitled to a free medical care in your homeland Australia. I really don't get it. why do you force yourself into a saga of mysteries on top of your suffering from the medical conditions???????? pack your stuff and go back home baby. get a proper medical treatment that will be up to your standards. Your medical condition is... See More something you can't have control on, but the rest of the story is in your own hands to improve. Please start loving yourself and give yourself the best medical treatment you deserve. From your story I don't believe you are doing good for yourself. Like anywhere else in the world, medical treatment is expensive in Thailand. If you don't have the funds you will be treated in a government run hospitals, but in Australia it is FREE for you? so why being stubborn. GO BACK HOME AND LOOK AFTER YOURSELF. if you won't who will?

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  3. My dear Hanuman,

    I'm sure you had the best of intentions when you wrote the above. Perhaps if you read the older posts you would have a better understanding of the situation. There is no way anyone could fly on a commercial airline in Tanya's condition. Being holed up in compressed air with the headache, wounds with arterial connections, and no pain meds would be impossible. What Tanya needs is a miracle Medivac flight with doctor and medical staff - but where is that going to come from?

    Meahwhile, if everyone who reads this would purchase something from Aarvark Silver on the web or on Artfire that would certainly help out financially.

    Dear Tanya, So many prayers and wishes are out there for you. I read you have one of the highest #s on Twitter. Take care and mend as well as you can at this time.

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  4. I read this with tears in my eyes. I can't even begin to imagine what you're going through over there. I wish there was someway to get you home. Is there just NO way to get you there? (Beyond money, we could raise that).

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  5. Thank you all for your Love and Best wishes.I have you all in my heart.
    Light and Love to all
    Tanya

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