Why my family?

[nia2311]

My family seem doomed to ill health and bad things happening.

Sister-in-law - is 24 and has gastroparesis (stomach stopped working). There is no apparent cause of this. She has been fed entirely by liquid tube feed into her small bowel for almost 3 years now. Recently, she stopped tolerating her tube feed and despite 4 procedures to change the tube, insert it lower down etc etc, she is slowly starving to death. She has gone from 9 stone to 7 stone. They are now considering putting a Hickman Line into a vein near the heart to try and give her essential nutrients, but this is usually for cancer patients for chemo drugs and pallative nutrition. My sis in law has a son who is almost 2. Why her?

Bro's girlfriend - is 29 weeks pregnant and went to midwife last week with symptoms of pre eclampsia. Was told it was all fine. Today - went to another midwife. Total panic and she has been admitted to hospital with horribly raised BP, protein in urine and oedema of legs, feet, arms and hands. She has serious pre eclampsia. They are trying to bring her BP down, but if they can't control it, the only cure is a premature delivery of a baby of less than 30wks gestation. She has to start her mat. leave almost 2 months early now also. Why her?

My Mum was diagnosed with lupus earlier this year after 15 years of constant health problems.

And I am still waiting for a diagnosis of my own problems which have afflicted me for 4 years.

Why my family??

[crazyshetlandlady]

Oh god I don't know what to say?

Hugs xxxx

[nj]

Sorry to hear of all that, going through a very similar thing at the moment, my brother has a tumour on his pelvis, everything seems to be going wrong, there are a lot of other things going on with our family at the moment but I don't wish to share at this moment of time,, but we have to stay positive, if we don't stay positive I think we will all have a breakdown, and if we do that we can't be strong for the people who need us most, inside you feel that your heart is breaking and wish it was you, I cry in the toilet most of the time at work as I have to work in an environment where I see and care for people who die every day, I can almost, just almost keep myself togethere, you have to be strong Niaxxxxxxxxxxxxxxxx

[nia2311]

I know we're not the only ones having a rough ride, and I feel guilty for feeling so upset and despondent about everything as there are plenty of folk worse off than us. I just want everyone (including me!) to be healthy and well and happy, and it just isn't happening. Its one thing after another.

For my brother and his girlfriend, they've just got into the whole buying everything for baby, they're having home improvements done to make a nursery, they've redecorated etc etc, and the prospect of something going wrong is terrifying us all. And my sis in law is so unwell it is unreal, and it would seem there is little that can be done to get nutrition into her. Unless they find a solution soon, she will starve to death, like some of the other gastroparesis patients she has met along the way

I understand totally what you are saying nj, and I hope your brother's situation improves and they get him under some treatment. Also hope that whatever else is happening will improve also.

I think its the time of year as well - lots of people getting into the Christmas spirit, and jolly TV ads etc etc, and actually all I want to do is crawl under a rock and pretend its not happening. 2013 HAS to be better, no?!?!

Modified for shabby spelling.

[Redsky]

(((Hugs))) Nia and Nat
Life is pretty crap sometimes, 2012 has been rubbish for everyone I know! We've not had ill health going on but a lot of other things have gone wrong and could stillget worse so I think most of us will be glad to see the back of this year.
On a positive note, prem babies at 30 weeks have a good chance of being absolutely fine especially if its a planned delivery and the baby gets all the steroids etc to prepare the lungs.

[nia2311]

Thanks Redsky, I did tell my bro about the decent chances at 30 weeks plus, but he's struggling to take it all in. I think they are starting his girlfriend on steroids tomorrow if nothing changes overnight. They went from a routine ante natal appointment to being admitted in a short time today, so all very worrying and scary for them as young(ish) first timers. They are both 24 years old and I feel I should help them, look after them, but I feel so ill myself. As for my sis in law, we are all totally helpless and that is soul destroying too.

[Redsky]

There is one being born at the moment on One Born Every Minute follow up stories, delivered at 30 weeks after his 16 year old mum developed pre eclampsia and even though he had a few problems initially, he's absolutely fine now.
Its dreadful about your sister in law I've never even heard of the condition, it sounds devastating

[09rebel99]

Really feel for you and you shouldn't feel guilty about being upset!! I work in care so know how bad these illnesses can be and also have fibromyalgia myself (but I am unsure of correct diagnoses) I can also understand about the baby!! My sis in law is pregnant at the moment and I know how we would all feel if they were to go through it.
Christmas is a time where people are really happy or get quite down and depressed!! It's a very natural feeling and is exentuated by the fact you are not well!! Plus I bet your keeping your own aiments quiet for the time being as to not burden your ill family?? Well please talk about it, be it on here or to other friends or it will just get on top of you.
Big hugs xx

[nia2311]

Well the news from the hospital is baby's growth looks ok, but her BP is still high, so they're keeping her in. If the BP improves she can go home, but will have to have 2-3 weekly hosp visits for the rest of the pregnancy and she cannot go back to work. The doc said she will certainly not make it to full term, but are trying to get beyond 35-36 weeks. However, he is preparing them for an imminent C-section just in case things do not improve. Due date was 19th Feb, but this baby could be born tomorrow, next week, or on Christmas Eve - any time! I'm just thankful our local hospital now has a neonatal intensive care unit and SCBU, so hopefully there will be space and no need to transfer to another hospital.

Sis in law is back tomorrow for D-day on her feeding. A Hickman line is sounding like the next option, but we are hoping the consultants have dreamed up another back up plan to feed her. She's been without tube feed for over 2 weeks now, so she can't go on much longer.

I've been in bed almost all week. I feel like I've been hit by a bus, have my standard severe abdo pain and am bloated to the size of Outer Mongolia. Am trying a gluten free (as well as lactose free) diet for the time being, as coeliac disease was suggested after my camera test last week, but thus far, no improvement. Awaiting biopsy results for a conclusive diagnosis and I am back on Monday, hopefully for more answers.

Anyone interesting in raising awareness of gastroparesis, a life limiting medical condition that affects more people than you'd think, please look at this charity website. My sis in law is involved (is in the pic on main page) and all the team who run the charity are gastroparesis sufferers. Many are fed solely by tube, some are currently in hospital. Two ladies died earlier this year. www.gastroparesisuk.org/page8.php

[nia2311]

Oh and 09rebel99, thats why I am moaning on here about everything, as family have too much to manage for now. Its my hubby's sister who has gastroparesis, so am loathed to complain much to him, as his sister is literally dying in front of us. I use this site as an outlet, it feels better to type it all out, as I can't say it out loud.

[sometime]

And that is a good enough reason for anyone to use this forum there are plenty well informed people to listen and to care about you even if they are not next door to talk to

[nia2311]

Well it gets better. Son (asthmatic) spent all last night in the spare bed with me, coughing and wheezing his guts up. Seemed a little better during the day, so just stuck to paracetamol, Vicks and hugs, plus lots of DVDs and fluids, but by tea time he'd gone downhill, by 7pm he was coughing up thick yellow gunge and by 9pm he had pain breathing in. Classic winter chest infection that happens every year, without fail. Contact out of hours GP, and have only just got back from there, with antibiotics etc. He has bronchitis and a lot of mucus on the chest and an audiable wheeze. Brilliant, another sickie to join the ranks!

Sis in law has been referred to the intestinal failure unit in Manchester (Mon) and seems on course for the Hickman line and TPN for the rest of her life.

Bro's girlfriend was released from hospital yesterday with blood pressure pills and strict instructions to do beggar all. The baby will be born early, but how early depends on how her BP and oedema are. They're trying to get her to around 32 weeks and then looking at planned C-section. She's had to quit work straightaway on docs orders and its all rather a shock to them both. Fortunately, my bro booked the week off work anyway (Xmas shopping!) but he is now there all week to look after her. She has to attend 2-3 weekly ante natal appointments now for the remainder of the pregnancy.

And today, I made a gluten and lactose free pizza, and it wasn't half bad, suprisingly. That is all for now!

[Redsky]

Oh Crikey hope your lads OK soon, there's loads of chest infections going round at the moment, hopefully the anti biotics will kick in soon.
Good news about your brothers girlfriend, bet she's glad to be home, but will be hard to do nothing.

[nia2311]

Thanks Redsky. Trouble is with my son, this happens during the winter at least once, yet when you ring the GP out of hours, they try and fob you off with "oh its just a virus" etc blah blah. But I've dealt with this same thing for 10 years now. He's been admitted to hospital every single winter of his life with chest infections, pneumonia or problems with ENT. I KNOW the signs he is progressing from just a cold to something serious. I had to argue for him to be seen, and when he was, credit to the doc who grasped the mettle and agreed he did need antibiotics before Monday. They originally told me to wait for own GP on Mon. He would probably progress to pneumonia if I'd done that (past experience!) What a day!!