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Thursday, 29 October 2015

I know it's been a really long time

I know it's been ages, but so much has happened in our lives it just isn't true.

Our younger daughter Stacy, middle child - well woman really, had been ill for quite some time with Crohns, amongst other things, and every time she was admitted to our local hospital instead of waiting to see if she was actually having a Crohns attack they just put her on intravenous steroids.

I don't know if you are aware, but, as usual, there is a price to pay for everything you put in your mouth - be it food or medicine.  Well the upside of steroids is they cure whatever ails you quite fast but the downside of them is they can cause all kinds of nasty things.  So along with the Crohns she now has had, for quite some time, Osteoporosis, Avascular Necrosis of both hips (this means they are dead), had her left hip replaced twice and it still isn't any good, the surgeon who replaced it both times left her without a left hip for 9 months. She also has Fibromyalgia and rotting teeth, which all have to be removed, and Watford General Hospital, or somebody there, told her she had a heart murmur.

Call me stupid but I thought you were born with a heart murmur and it wasn't something that just happened later in life.  She does not have a heart murmur.  It turned out she had something way worse.

The last time she was discharged from WFGH, in June, they said that they would refer her to Hammersmith Hospital.  Well nothing happened.  And she kept on getting really swollen up.  She looked like she was on steroids big time, but wasn't.  Her whole body was so swollen it was untrue, so much so that she was unable to even open her eyes because they were swollen shut.  Finally she called our local doctor and he took one look at her and made an appointment for her to be seen at Hammersmith Hospital on Monday 17th August.

An Ambulance took her to Watford General Hospital on 31st July, and Larry and I went before her to complain and wait for her to arrive. Stupid us, we didn't complain but just waited there for two hours for the ambulance to bring her.  We had our two eldest grandchildren with us and Stacy eventually arrived at around 5pm.  At 6 we left Stacy there and took the children for something to eat. The children and I got back to the hospital around 7.  At 1a.m. a doctor came and said that there was nothing they could do for her because it was the weekend and there were no doctors on and if they admitted her she would not make her appointment on Monday at Hammersmith.  I was so angry and I told the doctor that if anything happened to Stacy over the weekend I was holding her 100% responsible.  Didn't seem to even phase her.

Stacy was admitted to Hammersmith Hospital on August 17.  We were told later that week that what she had was rare even in the realm of rare diseases and it affected around one in 10,000,000 people and that it was incurable.  Well I've lived with Multiple Sclerosis for many many years and that's incurable so I thought so she'll manage.  What we didn't know until the following week that what, in fact, she has is a very rare form of Pulmonary Hypertension called PVOD which, well you can read it for yourself because I sure don't want to go into the ins and outs of it and cry I shall be doing again.

Stacy was in Hammersmith Hospital for 8 weeks and we went every day and sometimes twice a day there and back so she could go out and have her hair done, out for lunch a couple of times back to Watford, and have her nails done as the polish had to come off for a procedure.  It was about a 35mile a day journey if we went there and back once a day.

But I have to say that as bad as Watford General have been over the years that's how good Hammersmith were.  And when we explained that her Gastro doctor at Watford had put her down as a Hypochondriac, and we believed him I'm ashamed to say, the new doctor who is amazing said she was anything but and was in fact a very sick young lady - well she looks young.

This is why I've been missing for so long and why my sewing machine is still in it's box and all the rest of my stitching hasn't been touched.  No matter how much I want to do something I just can't.
See you soon
Patti xxx
American by birth and MOUTH
but British in every other way

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