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Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

I've gone into complete panic mode. Verging on hibernation mode. Please help.

999 replies

JackieandJudy · 15/07/2012 15:39

Dh is ill, and has been since just after we met. Over the years we've had so much to deal with, and I think it would be fair to say that I have dealt with most of it reasonably well (I'm generally ok at coping when things are going wrong, it's usually afterwards I have a bit of a wobble).

The situation is slightly different this time in that, instead of finding ourselves in the middle of an emergency, he has a planned operation coming up for next Monday. And I'm so bloody scared. The odds we have been given are not good. I can't stop thinking about Monday and am constantly doing the "what if ...?" thing. The elder dc know it's serious stuff coming up and are scared themselves, hence are looking to us for guidance and reassurance. I've tried but today I'm all out of trying and have locked myself in the bedroom. Smallest dc knows Dad has to go to hospital but is oblivious of the wider implications.

I'm shaking constantly. I keep crying at random moments (yes, that was me in Sainsbury's who cried when I dropped the apples!), I can't do this for another week. But I have to. I don't want to talk to rl friends as I will cry and I don't want anyone feeling sorry for me anyway.

But I'm happy to listen if any of you lovely ladies have any ways to help me get through this week, and possibly after. Sad

OP posts:
sadwidow28 · 21/08/2012 18:25

I know how to do that springydaffs - but OP just needs a bump if she hasn't done that setting.

How are you doing now SD? You have given so much thoughtful advice on other threads that I think you have really moved on.

springydaffs · 21/08/2012 19:50

SD? is that me? moved on from what? Wink

semi-hijack there JandJ, apologies X

[it's somebody else isn't it? like when someone waves and you wave back enthusiastically and they're waving at the person behind you]

Homebird8 · 21/08/2012 20:03

Hello JandJ. SadWidow has come up with all the practical (and we hope very effective) practical stuff to do. Isn't she amazing?

I have nothing like that to offer. Just a rag bag of fierce emotions regarding the goings on, or lack thereof, and lots of love and peace and calm to help you through. You are an inspiring family and we are here for you.

lazarusb · 22/08/2012 09:44

Just checking in again today to say hello and that you and yours are very much on my mind.

SW - what a wonderful person you are! Would love to have you on my side in a situation like this!

Homebird8 · 22/08/2012 10:30

Having said that lazarusb, not sure I'd want to be up against her Wink Grin

My friend's mum had her quadruple bypass as planned on Monday and is doing really well. I just so wish that both of Monday's operations had gone ahead, with the same good results. Hope on a Rope helped my friend through Izzy so thank you to you and your Pa from me and from him.

Thinking about the JandJ family this evening. I can't imagine what is going through your heads. I for one am still Shock and Angry Hang on to your love for each other, and trust in us to stay here for you, willing the best from this situation that can be. Thanks

Oo, do I get the prize for the most emoticons? Blush

springydaffs · 22/08/2012 11:10

you do Grin

very colourful and heartening for JandJ Smile

ForeverAutumnNow · 22/08/2012 12:23

I can only imagine the confusion and fear that you must all be feeling right now JandJ. I send my heartfelt compassion and much love.

JackieandJudy · 22/08/2012 21:13

Evening all - how amazing you all are, and special thank you to sadwidow for going to such great lengths to advise us on how to proceed next. Dh says you've all to stop making him cry or you'll think he's soppy Smile

So - the Clinical Director rang Dh on Monday night and dh told him all that had happened. The Director asked us to leave it with him for a couple of days.

Yesterday Dh received a call from a haematologist telling him to double his dose of heparin. Dh was very reluctant to do this without speaking to a kidney doc, as last year he was in hospital for nearly three weeks with non-stop bleeding. So all day yesterday we tried to contact someone in the renal department - Dh's consultant is on holiday (which we knew - this is what the phonecall we missed last Friday was about), his deputy is on holiday, dh's named nurse is on holiday, we couldn't get hold of the doctor who had been so sympathetic on Monday etc.

Finally, at about 6ish, all out of ideas on what to do, I managed to get hold of dh's ex named nurse - sheer desperation on my part as she had moved on from that particular job about three years ago - but I just had no idea what else to do. Dh was in such a state by this time - angry, frustrated, not knowing who to listen to, all faith he may once have had in the cardiac team completely gone etc. She, fortunately, was able to contact one of the renal doctors who dh has known of old, who said to hold off doubling the dose until he'd tracked down the consultant who'd told dh to take it. At about 9 last night, he rang back to say he'd spoken to another haematologist, explained dh's circumstances, and they had both agreed that, under no circumstances, should he double the dose.

Today, the Clinical Director rang dh to say he'd spoken to the cardiac team who he described as "fucking incompetent", and who he went on to talk about in less than glowing terms. The upshot is that when dh goes in for the op on 3rd Sept he will be admitted to a renal ward, not a cardiac ward, and after spending however long he needs to in ITU, he'll be returned to a renal ward, not cardiac. In the absence of dh's consultant, the director has named a specific nephrologist (as it happens - the one who was so sympathetic to us on Monday) to deal with dh's admission and to co-ordinate all necessary treatment.

Later today, the above doc rang us to say he'd spoken to the head of haemotolgy to discuss dh's treatment. They have decided that dh needs to be admitted five days before the op as he needs specific doses of iv immuno suppressant stuff as they will have to give him platelets during his operation. Which begs the question - should this treatment not have been given to him five days prior to each of the three previous cancelled operations? And what would have happened if the operation had gone ahead without this treatment? As Dr Dismissive kept telling us on Monday, this is a "complicated and risky" enough operation as it is, but now with all this talk of tests dh should have been having, I have totally lost all faith.

Ironically, dh himself is much calmer as he feels relieved to have the clinical director on board. I, however, keep remembering how panicky I felt way back when I first posted, before this catalogue of disasters had even happened - and I've now convinced myself that this whole venture is doomed. There seems to have been so much imcompetence, lack of communication, lack of care, inability on one part of the medical team to look at the bigger/overall picture etc that I cant help this pervading sense of almost hatred which is creeping over me.

I hate feeling like this because for many many years the NHS has been a godsend for us, and for many millions of others I know. And we've met so many incredible people who have sincerely cared, but now I just feel suspicious and distrustful (is that the right word?!). And you know, fortunately for us, dh is the sort of person who doesn't unquestioningly do as he's told (little clue there as to why his teachers apparently hated him at school!), he's been ill enough for long enough to want exlanations and reasons. But how many millions of people out there just accept without question what the doctors tell them to do? If Dh had taken that double dose last night, I fear the game would have been over there and then (and you would all have been spared this massive essay for which I apologise!)

The silver lining in all this, for me, has been turning to mn and discovering anew that there are people out there, many of whom have had their own tragedies, who care enough to really interact and give of themselves to a total stranger (who may possibly have had a bit more gin tonight than is good for her!)

OP posts:
sadwidow28 · 22/08/2012 22:25

JandJ, thank you for updating. I won't respond to the detail of your post at the moment - just give me an hour to reflect.

By the way ladies, I will bat for each and everyone of you as hard as I am doing for JandJ if you need me. Please God you never need me!

JandJ, when your DH comes through this, I will tell you more information about my family - and the incompetence of the NHS. Sweetie, I don't say that to worry you at all, I am just saying that I won't stand by and let your family go through the trauma that we did. It was only when we 'pooled' our knowledge and contacts did we save my eldest nephew! He is the happy husband to a beautiful, supportive wife and dad of 2 young daughters - 2 years on now he doesn't show any signs of having to say his 'goodbyes'.

sadwidow28 · 22/08/2012 22:42

I, however, keep remembering how panicky I felt way back when I first posted, before this catalogue of disasters had even happened - and I've now convinced myself that this whole venture is doomed.

Now, come on JandJ, you are a really strong woman ..... and the MN JandJ team have been behind you to give you strength and kick some arse (is that a swear word?)

It isn't doomed - please look at how far you and DH have come in making connection with the appropriate professionals! It is DH's renal team who will oversee his cardiac operation now and there is a lot of rivalry within specialist teams Your DH is now back to being a person: a human being: a dad and a husband. Believe me, you have achieved what needed to be achieved.................. nobody in that hospital cam actually AFFORD to lose your DH now. So, now they are on the dame page as you are. Their reasons are monetary - yours are about the lynch pin of your family. At least both teams can't afford to lose him - and he will get the very best care afforded now.

But nobody should have to fight the way that you and DH have done. However, you may have saved his life!

sadwidow28 · 22/08/2012 22:45

I can't even blame my poor spelling/typos on an iPad - I am on my little netbook!

Duh!

springydaffs · 22/08/2012 23:16

Am I getting this right? that it's a very good job those ops didnt go ahead if DH should have been having a 5-day course of immuno suppressants prior?

Plus, out of this reprehensible mucking about you've had, you've got the big boys on the job micro-managing DH's care, plus breathing down the necks of the people who let you down.

I understand those feelings of hatred etc. When you first posted, you were in extremis, the fear and worry had pushed you 'far out' iyswim. the opposite to that see-saw is very probably anger and rage/hatred. all normal stuff - ie your emotions will swing quite wildly sometimes at the mo iyswim becaue of the pressure of the situation?

I should have thought you are in very good hands now that everyone is on the case and watching it closely.

thinking of you and praying for you all. xx

sadwidow28 · 23/08/2012 00:28

Springdaffs has encapsulated the situation so succinctly

Waiting for Izzy to wade in come in and post!

lazarusb · 23/08/2012 09:10

I am very glad that you now have the Clinical Director very much on your side and double checking everything. It's absolutely shocking that the immuno suppressants haven't been mentioned before - and frightening. I hope that, when his next admission takes place, you are both treated like real, intelligent, human beings and you are given the information you need at the right times. If you ask questions, you will be given clear, honest answers.

However, don't look on this as negative. As others have said, your dh will be a VIP now and they will be very concerned about ensuring he has the best possible care. I'm glad that you aren't taking all this at face value though and very pleased that doubling the dose was questioned in the way it was. It's a shame more people don't question what doctors tell them.

Continuing to think of you all and sending you all the virtual strength I can muster!

Homebird8 · 23/08/2012 10:25

Oh JandJ, what a whirl wind of discovery. Congratulations to your DH for sticking to his info-gathering stubborn streak. I get teased for mine but he's just given me the courage to follow in his footsteps and make sure I get the why and not just the what.

I have learned the hard way over the years that each person has to be the guardian of their own life / case when it comes to medicine. For very sensible reasons the disciplines are kept apart but it means that people with conditions that cross boundaries are rarely seen as whole people and there is nobody whose job it is to do the joined up thinking. It's amazing how much better treatment can happen when someone is given permission to coordinate properly and know that they will be listened to by their colleagues from other disciplines because big brother the clinical director is watching. Wink

You have had shock after shock after shock and it is hardly surprising that your confidence in all things hospital is shaken to the core. I want to add my voice to all your other lovely ladies and hold your hand whilst the cavalry new coordinating doctor whips them all into shape. Your DH is truly a VIP from now on (he always was to us Smile) but I am trying to resist the temptation to purposely go for a soppy tear so I won't say that!

Thanks Thanks Thanks

JackieandJudy · 23/08/2012 13:04

Struggling today ladies. Dh has cancelled Bar School - he spoke to them and there are attendance quotia to meet that he won't make. He said to me "don't worry, I'm not giving up. I'll find something profitable to do with my time".

Back later.

OP posts:
sadwidow28 · 23/08/2012 19:33

Was the cancellation of Bar School DH's choice - or a lack of understanding by Bar School about 'exceptional circumstances'?

Did he speak to an Admissions Tutor/Manager or a junior in the Admin office?

Your DH can apply for late admission and short term special circumstances - but DH's consultants will have to work with the Admission Department.

JackieandJudy · 23/08/2012 20:47

Sad (I have pm'd you, hope you don't mind) - he spoke to an Admissions advisor who was very nice but who said that, even if he caught up on the work he missed, he would not meet the attendance guidelines they have to go by. They've deferred his place for a year and, although I keep telling dd that a year isn't long (she hates school but has another year to go!) it certainly feels like it at this minute.

I've also emailed our MP asking for a meeting.

Homebird, I've been meaning to pass on my best wishes to your friend's Mum for ages, I'm so glad to hear that she's doing well - long may that continue. And lazarus, thank you for telling us about your route into the law - sounds like you've had a few issues of your own to contend with, hope things are on a more even keel for you now.

OP posts:
izzyizin · 24/08/2012 01:37

Your updates have sent me to a place beyond white hot anger where I am on the brink of becoming incoherent with rage, JandJ.

I'd hoped that a spot of genteel mumsnetting on other threads would lower my blood pressure and render me capable of rational thought in respect of your circumstances but, sadly, this has not proved to be the case.

I am in off in search of something considerably stronger than Hope on a Rope and will return when I am able to order my thinking and can contribute more than a stream of Anglo-Saxon coupled with a desire to take a Kalishnikov to the lot of them.

Please avert your delicate sensibilities eyes and put your hands over your ears, sw, as I depart muttering a litany of cunts, fuckers, arseholes, dickheads, bellends, knobs et al.

Homebird8 · 24/08/2012 07:20

Just dropping in JandJ to give your shoulder a quick squeeze. I wonder if we should send Izzy off to her Pa with a request for a recipe for 'In Vitro Incandescence'?

Sounds like hanging on to that rope is the best that can be done at the moment. Nothing wrong with a G&T either JandJ. You don't have to be up and at it all the time. Take some time for you and the family too. Sending you love, and in the absence of a cocktail, have a Wine to go with the general Shock at recent events.

lazarusb · 24/08/2012 09:44

Hi J and J. I know you are upset about your dh having to defer Bar School but at least it's deferred, not cancelled. In a years time he will be recovered from this op and more than ready to get back into study. In the meantime he can concentrate on recovering from this op in September and have Christmas to look forward to without mountains of work to catch up on.

As for my 'story' - it has felt like living in a soap opera at times and I was on the verge of giving up completely more than once, but on I went, channelled my inner stubbornness and got there in the end! Thankfully, I have a fantastic dh who has always supported me through everything and great children (2 still at home) who know when I need peace & quiet to read through Lord Denning's daft judgments!

lazarusb · 25/08/2012 10:23

Just bumping the thread to say hello again. Here on the South Coast the Bank Holiday Weekend has started with wind and rain. We are off to ds1 & his gf's house today for a barbecue to celebrate her parents silver wedding anniversary. Nothing like a barbie in the rain is there? Never mind, I've always liked a challenge (not so keen on soggy burgers!).

Take care and hope you all have a good weekend.

jellibelli · 25/08/2012 10:25

We have been Shock and Angry at your and DH's experience JandJ but my mum is someone who is convinced that sometime things happen for a reason, in your case the delays of the previous two (dangerous?) admissions resulting in your DH being under the Clinical Directors eye and now he will be receiving the very best of care from all involved.

Of course, that doesn't make it forgivable that you've had to ride that unnecessary rollercoaster. Your frustration regarding Bar School is clear, but like you said to DD time will soon pass, a year really isn't that long and he'll be starting next year before you know it.

springydaffs · 25/08/2012 14:43

so disappointing for you JandJ. Would he really, though, have been up for quite a gruelling regime so close to an op?? I hope that by the time next year comes round you will see the sense of the delay. failing that, is there a Jan admittance?

I can bet that izzy's incandescence is shared by the PTB in this. It's all in the right hands and, maybe, your awful experience will ensure it doesn't happen to other people. Small comfort at the time, though.

HOpe all's well chez JandJ xx

foolonthehill · 25/08/2012 22:21

hanging my head is shame and disbelief......so sorry for what you have been through/are going through and the strain on all of you JandJ.

much love and all prayers and thoughts to you all.

xxfool