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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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  1. Oh Patti, I'm so so sorry to hear about your daughter's illness. I'm sending lots of good thoughts and prayers for you all. And lots of hugs too. Sometimes the medical community can be such idiots. And sometimes they can be wonderful. I hope you get lots of wonderful from now on.

  2. You have all had a really terrible time, but I am so glad that she finally got some decent care. Take care of yourself too, Patty. Blogging can always come later.

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  4. With all you have been going through these last months--months!!--I am glad you have found a good doctor, and Stacey is in a hospital in which she is receiving good care. I imagine she feels she is being seen as a person there--a person who has been very sick, but an individual--and that is huge, when she's been feeling so poorly. Now that they know what they are dealing with, there's hope. Incurable now doesn't mean 'abandon hope'.

    I always think of our friends who had a son born with cystic fibrosis in the early 1970's. When Brett was born, his parents were told not to expect him to live to enter grade school. Medical knowledge advanced more quickly than those doctors ever imagined, and we cheered as Brett graduated from high school, then college, then married, and became a father. So, what's true now won't always be true. (I have lupus, and I'm waiting out this beastly opponent, right along with you and the MS, but I'll gladly let Stacey go ahead in line and get her good news first. Please let her know I'm rooting for her.)

  5. Sending positive thoughts and many prayers for your family in this time of illness.

  6. Patti this may help you and it may not. My daughter also has Crohns...a very aggressive form of it. We've been through much the same processes you have with Stacey: misdiagnoses, slow treatments, uncaring doctors, struggles to get primary care doctors, gastro doctors and surgeons to talk to one another and coordinate her care. She was on steroids for a short time and then put on Humera injections and a cancer drug that also helped control autoimmune diseases. She had bowel resections and, when the Humera suddenly quit being effective, she lost her whole large intestine and 2/3 of her small intestine. She now has 3 ostomy bags: one ileostomy and two to cover fistulas in her abdomen. She has to take supplemental nutrition through a PICC line in order to keep from starving to death and to balance the minerals in her blood stream. She is hospitalized again, as of last night, with pneumonia in several spots in her lungs, some fluid buildup around her lungs, elevated heart rate, lowered oxygen rate and they just discovered a heart murmur a few hours ago. She has a home health nurse who comes by every week to take blood samples and check the PICC line, and we're very thankful for that. She has to have blood transfusions several times a year, and is prone to infections requiring hospitalization a every 2-3 months. Her prayer is to be able to raise her children to adulthood (ages now are 16 & 13). I've told you this story NOT to solicit sympathy or to try to top your daughter's situation, but to let you know you're NOT ALONE in this. I understand about crying your eyes dry. I understand about being so sad you just can't do anything or get up enthusiasm for sewing or quilting or even getting out of the house sometimes. I understand about being so angry at the medical establishment sometimes that you could throttle someone. I understand about the months of daily treks to the hospital room, even changing the sheets, washing her hair, painting her toenails, helping her to the toilet, rubbing lotion into her skin, making pillow bolsters to keep her feet pointed up so she wouldn't get "drop foot", learning to change dressings and pack her abdominal wounds, flushing PICC lines and hanging nutrition bags. Your eyes have seen things you can't unsee and above all, your girl is suffering and You. Can't. Fix.It. Believe me, Patti, I get it. So here I am in the trenches with you. The heart trenches. The Mom trenches. The frustration, aching, helpless, angry, can't-wake-up-from-this-nightmare trenches. Just standing by in case you need a stabilizing arm under your elbow. I can't fix anything. But I can listen, share ideas...and pray.

  7. Sending love and prayers to you and your sister. 💛

  8. My dear friend , i'm so sorry to hear about your youngeest daughter condition. I will keep her in my prayers as well as you. (((Love you)))

  9. Very sorry to hear about your daughters ill health. You are both in my thoughts and prayers.

  10. So very sorry to hear what a hard time you daughter is having. Prayers and gentle hugs from Texas.


I absolutely LOVE it when you leave a comment and I read each and every comment and try to reply to you all.
Patti xxx