The Medical Profession

kefkat

Vital Football Legend
This is a bit long so grab a cuppa :160:

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First of all I want to say this post is not about slating The NHS has a whole. We are very blessed to have it. There are 1000's of hard working excellent NHS staff, of whom I have friends who work for them.

However, with the situation we have been in recently which became about I/us rather than them it has really hit home what can go on.

Before we go any further I just want to state my husband doesn't drink or smoke. He used too, however can't cos of all the meds he was on. He is not alcoholic and never was.

Most of you know Mr KK has health problems. 30 + years in the building trade, working outside in all weathers, no health & safety and 3 years underground on pneumatic machinery in a tunnel that was shorter in height than Mr KK height has left him physically disabled.

With Mr KK being diabetic, and on alot of strong painkillers long term it has caused liver disease, which was diagnosed in January 2016.

He was told to lose 2 stone in weight, which he did through life style change. He was taken off insulin. He also had 2 hospital stays which for a chest infection the Dr’s couldn’t get under control in April. The other was for pneumonia when we had been home from holiday a week in July.

They also did a lot of scans whilst we were in hospital. They told us that there was some cirrhosis and 2 lumps they were unsure of so they were sending the scans to Jimmy’s in Leeds.

As some of you know we had an appointment, 10 weeks ago, which was horrendous. The attitude, rudeness and flippancy of the Dr nearly damn well destroyed us. It would have some people.

He basically told us they could do nothing, my husband had cancer and he had months to live! He also when I in shock asked about next year’s holiday, was told ‘’that he hoped we had good life insurance’’

At this point I collapsed off the chair and the liver specialist nurse had to carry me out and go back for my husband. The Dr had completely ignored him whilst she was gone which would have been about 15 minutes.

The night from hell ensued. Me being me and once the next day was here, I got straight on the phone to our GP’s, got an emergency appointment, rung our hospital here in York and got an appointment with our Dr here. Then spoke to the liver specialist at lunchtime in Leeds, who laid out that Dr Death (as I know call him) was talking worse case possible scenario and we weren’t in that.

She also gave us more information which I could pull all together. Our Dr’s (which I know some find puzzling as it is unusual are fantastic, emphatic and caring) seen us at the end of surgery appointment. We were with them for an hour. They gave us the list of questions for Dr H here in York.

I put everything together, emailed it through to the hospital consultant so he had a copy. We see him the next Monday and he explained everything at length and why they couldn’t do a biopsy to fully confirm it was C lumps.

We were told Mr KK had to follow a strict diet of high protein/high carb as his body needed to take the energy from his food intake instead of using the organs (liver) to digest through everything.

We then seen the dietitian. The dietitian went through everything with us. It has been stuck too. Apparently, a lot of people don’t. They can’t take a pill for it so they ignore the diet until it is too late.

They seemed more concerned about the liver damage than the lumps. As I told Dr H at the hospital, I was a sober alcoholic of nearly 14 years and I had seen enough of addiction so knew plenty about the liver and that even active alcoholics could live for years with a small bit of liver working.

The hospital was a bit confused by then as my husband bloods had come back right down to what they were last year when they found there was a problem. They had been sky high in the summer.

My husband has been on this diet (6 meals a day so the body lives off the food) 10 weeks now and within a few days we could see the difference. He had so much more energy. He wasn’t falling asleep like he was.

10 weeks on my husband’s bloods are all back down into normal range. The only one that is slightly out is to do with the lipoedema and osteoporosis, which is connected in with the full range of health problems my husband has, not just the liver disease.

My GP said to me the other week again that they would rather say it was cancer than not and it could be they are wrong. Talking to the diabetes nurse the other day she was telling us her sister was diagnosed with the same as Mr KK though told her lumps were benign 6 months ago; now they are saying they might not be.

The good news is Mr KK is in far better health than he has been for a long time. They are now looking after this set of blood tests to wean him off the metformin, so he will be diet controlled diabetic.

Granted a different sort of diet controlled diabetic as he will still have to be on the special diet of high protein/high carb.

Regarding Dr death at Leeds, we put in a constructive feedback, on the advice of our Doctors. This has been investigated and we have had responses back from Jimmy’s. We had a letter of acceptance and apology off Dr death and thanking us for feeding back so he can look to improve. We also had a letter from the head haematologist who had investigated it. Job done. I never want anyone to go through this again is why we did it.

So, that is the upshot of where we are: it is obvious the Dr’s and hospital are beginning to think there may be a mistake made here. How they will handle this is to be seen.

My husband’s bloods are normal (they shouldn’t be) his weight is stable, he has no fluid build-up on his stomach and he is eating normally. Now that doesn’t mean for def Mr KK hasn’t got C however it is looking more likely they got it wrong.

I want to testify to this: that Dr’s can be very wrong, that not to give up hope and to keep going. Also to the fact that clean eating does make a major difference.

Mr KK diet is opposite of what it once was. I despaired with him with the junk he would eat between meals. 90% of everything is homemade (I am not about to put a cow in my back garden etc.)

Juan and JF have always said about the way you eat etc. does make a difference to how you are. This is proof of it
 
That's good news KK.

And good for you for offering feedback to Jimmy's. It's scandalous that certain doctors feel the need treat people with such contempt, and they need to be pulled up on it.

It really is amazing what the simplest of changes to diet can achieve, from extra energy to blood sugar to weight loss/gain.

All the best to you both.
 
JuanPabloAngel - 10/12/2016 12:30

That's good news KK.

And good for you for offering feedback to Jimmy's. It's scandalous that certain doctors feel the need treat people with such contempt, and they need to be pulled up on it.

It really is amazing what the simplest of changes to diet can achieve, from extra energy to blood sugar to weight loss/gain.

All the best to you both.

Thank you JPA! We were going to put in as a complaint, however on talking with my Dr, he asked what we wanted to gain from it; I said ''I never want anyone else to go through this again, by this Dr''

He was the 1 who suggested we put it in as a ''constructive feedback statement'' cos as he said ''they will be less defensive if you put it in as that, rather than the heading ''complaint''

Ofcourse he was right. The way the letter was received and responded to was far different than if you use the word ''complaint''

It would have been a shock of their lives to get it, I know. However the point was to save anyone else going through that, by him, then job is done.

I believe we had a responsibility to do it, as not everyone thinks or is up to complaining.

Following next post for interest is my Husband liver diet
 
Whilst this is not a normal diet anyone would eat, it is a specialist liver diet. Everyone says they wish they could eat this much. We laugh and say ''yes until you had too'' Mr KK feels like a stuffed turkey he says. I have told him ''I am not stuffing him up to have his neck rung for Christmas' I am stuffing him up to live'' :14:

Breakfast: 3 freshly squeezed large oranges and cereal/porridge with 1 pint of fortified milk (semi skimmed milk which has had 4 tablespoons of skimmed dried milk powder beaten into it) He doesn't have to have the full pint for breakfast. He can drink it throughout the day, however he has it all for breakfast as he is not keen on milk on it's own.

Mid morning: a piece of homemade cake

Lunch: Homemade soup/jacket potato that sort of thing, with desert (homemade after) For David this is homemade ice cream as he loves it.

Mid afternoon: a piece of home made cake. teacake

Tea: Homemade red meat twice a week, white meat 2-3 times a week, fish twice a week and 1 day of hard boiled eggs and potatoes which Mr KK loves and the various that goes with it. All sauces homemade. Followed by homemade desert such as bread & butter pudding/rice pudding and so on.

Supper: 10 points off the list of foods before bed.

This is so the body has enough energy to live off during the night until breakfast the next morning.

Fruit during the day as and when.

Not a major problem for me, to do this, as I was originally in cheffing. To be honest Mr KK is too stuffed to be sneaking any junk.

It has taken him some to get used too, as it is disciplined. Getting him to understand the nutritional side and why everything has to be as homemade as possible what's what has had it moments.

Culturally his upbringing in an ex mining village, whilst he had a loving stable childhood, was very different to mine.

I had the dysfunctional childhood in a professional middle class home where nutrition and food was very important.

He has also found it bizarre the high carbs to it because of being diabetic (not that he followed that properly)

It goes to prove how much different a proper homemade diet can make. I am finally enjoying cooking again as I had despaired with David over the years. He would openly admit he was a food junky.

Like I told him, he is being denied nothing, accept crisps and gassy drinks and he is healthy in an unhealthy way now. Bizarre however good.

Mr KK is a good man and I am happy to do whatever I can to look after him. I have no intention of becoming a widow anytime soon. He has done so much for us, it feels like it is time to repay in a way I wouldn't want to have however in a way I can.

You can see looking at this lifestyle of food now why alot of people who have liver disease ignore it and pretend it is not happening.

I will keep you updated.
 
Thank you for asking JF. Decided to update in here as it keeps it all in 1 place.

Bloods all now in normal range bar 1 which is excellent news and gives kudos to the dietop and sticking at it. It works

Seen the vascular department this week re the lympodema as dermatology wanted David scanned before putting the wraps on his legs.

Lympodema relates to liver damage and is also part of any additional water he is carrying.

Dermatology wanted to ensure the pulses in David's legs were working properly before issuing the wraps.

Vascular consultant discharged him saying no need for him to have wraps at this time. Stockings were perfectly good enough as needed. Diuretics are working so not needEd.

Big relief and 1 less department to deal with.

Bloods as I said all back in normal range bar 1 which is related to the lympodema.

They don't get it. They are admitting nothing at the moment

Our Dr's can't comment as such however did say last week "let's celebrate they are back in normal range"

I don't know if they will admit it's a mistake at the hospital. Next appointment in Feb we will see what they say then

Mr KK is the opposite of everything he should be by now. Especially what the Dr said in Leeds.

My Dr did say to me they would rather say it was than it wasn't so they don't leave ourselves open to be sued

That's as much as we know now.

Oh and JF re diabetes: they are leaving meds as they are for this quarter and will review in February when bloods done again

Whilst bloods look as if the mortoms can be reduced on the 3 months reading they take the overall level over 6 months reading. It seems needs to overall come down over 6 months before reduction.

Nurse said they should be able to reduce in February. David been off insulin 6 months now so all in right direction
 
O,K update:

Seen my Dr today and we had a good chat about everything. He looked himself at David's bloods etc. a picture of him now to last August at the wedding and he shook his head.

David looks the picture of health on the now 1: I asked him how we broached the subject with the consultant of their being a mistake, as David admitted it, his family, loads of friends etc. and I just don't think he can have the C word.

Well actually now I am calling the lump a Helicopter (ha) The real name of it is Hepatocellular carcinoma. I always think of helicopters with the word so now we call it David's helicopter. More fun I think. God knows we need some fun in all this.

Dr F said he had always had a suspicion the result was a false positive because they hadn't done a tissue sample. He said looking at David's last blood all down now in normal range, his meds are working, no fluid back up, stable healthy weight etc. he said the best thing to do is ask the Consultant for another scan as David is so clinically stable, in the words of the consultant.

Told David when I got in. He is mulling it over. Part of him doesn't want to go on that roller coaster again, for me, him , his family, our family etc. I think he just wants to leave everything ''as least said sooneth mended''. Might sound strange, however given the roller coaster of last year I am inclined to agree with him. Unless the consultant says about another scan he is inclined to leave everything alone.

As it is everything is stable I think I get where he is coming from. Kind of hard to put into words. Anyhow that is where we are up too. Certainly a hell of alot better than the widow I was supposed to be by now, according to Dr Death in Leeds.

Attached are 2 pictures of my Husband. 1 taken last year when he was ill and the 1 of now. Hardly looks dead does he

 

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kefkat - 9/12/2016 15:19

(I am not about to put a cow in my back garden etc.)

No need KK - just ensure you buy organic, grass-fed meat and you'll be doing yourselves a massive favour.

Search locally for suppliers, or use Musclefood,com, who offer amazing stuff.


 
Good to hear about how Mr KK is progressing and have to admit to sharing your frustration on the behavior of some of these grossly overpaid so called specialists.

No wonder the NHS is in such a mess with some of the salaries that are dished out to some of it's non surgical staff.
 
JuanPabloAngel - 20/1/2017 00:01

kefkat - 9/12/2016 15:19

(I am not about to put a cow in my back garden etc.)

No need KK - just ensure you buy organic, grass-fed meat and you'll be doing yourselves a massive favour.

Search locally for suppliers, or use Musclefood,com, who offer amazing stuff.

Thanks JPA. Been using Musclefood for a year now. Would not go anywhere else now for meat or fish also
 
Fulford - 20/1/2017 10:38

Good to hear about how Mr KK is progressing and have to admit to sharing your frustration on the behavior of some of these grossly overpaid so called specialists.

No wonder the NHS is in such a mess with some of the salaries that are dished out to some of it's non surgical staff.

Thank you Fulford. You have had some of your own personal problems with the NHS I guess from what you said? I hope you got them sorted
 
Continuing update: Seen the consultant last week. All is well. His words ''you are not following my rule book David. Everything is too normal''

At this I responded ''Dr H I do not follow rule books for me and mine, unless it suits me'' He looked at me and grinned. He said ''Oh I can see that'' :14:

He is grappling for something to do. He has decided to do what they call and isolated blood test on Mr KK iron which reads normal range. He wants to check with this isolated blood test to check Mr KK blood iron level is a correct result and not artificial. The mind boggles.

He wants to check this as if it lower than the usual 1 he will give David iron infusions twice a year rather than the 2 iron tablets a day he takes. This ofcourse has it's benefits as it will reduce further Mr KK medication he takes daily.

He has to do this test so he can warrant to the department that does these infusions the cost, as it is more costly to do it this way than by tablets.

Shakes head in despair: he is looking for something to do. We think he is nervous about re-scanning the lumps as there is clearly nothing happening with them whatever they are.

Because the consultant knows of the constructive feedback statement we put in and the outcome we think he is scared that we will sue and make waves. Our GP is convinced they have messed up big time.

Our GP has told us to ask for another scan. Mr KK doesn't want it. He is well and doesn't want that roller coaster again, as all is settled. Even if it is still the C word they can't give any treatment so leaving things as they are, until Dr H says we need to do another scan is my hubby position and I respect and understand it. He will have the scan when Dr H says we will.

Would we sue? No! I would rather be told that it was and it turns out it wasn't, than the other way round. If we were going to sue we would have sued Jimmy's in Leeds and Dr death.

It is not the consultants fault in York they have got it wrong, if they have. I understand why they came to that conclusion because Mr KK's bloods continued to rise when he came out of hospital for a while before they started going back down after the pneumonia. They have jumped the gun.

I am not going to tell the consultant that though. It's there job to ask for another scan and there job to tell us if they have fouled up. We aren't going to make it easy for them.

When my late Mom broke her leg in respite and we went up to collect her stuff, the manageress on the ward wouldn't shut up trying to explain to us what had happened. I left her go a while and said '''it's O.K we aren't going to sue' It was an accident'' You could see the colour coming back into her face and her body language change.

Spoke to the dietitian at the hospital this week to get some reassurance on certain things when we go abroad cos obviously I can't home cook everything whilst we away and so on. That is all sorted and now counting down to our holiday in 12 weeks and 3 days.

A holiday I didn't think I would be taking 6 months ago with my husband. Yes I am pretty tearful over it all. Tearful in a happy way.

Got our holiday box out today to start sorting everything from towels to toiletries and a n other with the holiday list we work off every year for Kef. Actually able to smile and think it will be O.K.

Got E111's just in case which every one should carry anyway
 
I have only just come to this thread KK, what a story. I am glad that matters have now taken a turn for the better for you both.

I have had the opposite experience with St James' My own health authority (three different hospitals) made a complete balls up of what was a very common and manageable condition. I all but bullied my way into St J's via A&E and encountered nothing but competence and professionalism.

What strikes me most about the health service is the staggering differences in the level of care from one hospital to another, from one health area to another and even between units within the same hospital.

The use of information systems is a good 40 years behind almost any other organisation I have ever dealt with. I can go to any branch of Curry's in the country and they will know at the touch of the button what my purchasing history is. Go to 'not my uusal' hospital and it's 'we'll send through for your notes'. Even my GP has problems accessing blood results from tests performed at my local hospital.

When you get the bad side of the NHS it can be a lot of hard work, frustration and grief to escape the plughole you get dragged down into. It can get to be an arduous process of dealing with a seemingly endless series of obstacle courses that come your way at a time when you are least equipped to deal with such things.

I take my hat off to anyone who has been through it, all the best to you both.

By the way, if you do ever need a local meat supplier, I go to a farm in Swillington that I can thoroughly recommend.
 
Thank you Chasstitty. I am glad your experiences of Jimmy's have been much better than ours. I/we have never experienced anything in our lives like it before.

Our usual hospital at York is a good hospital I/we have alot of time for. We understood why they sent the scans to Jimmy's as they are the top liver specialists in the country. They wanted to get confirmations etc.

We are happy with our local hospital service and care. Never had an awful experience before with any hospital. It certainly put us off Jimmy's in Leeds though I know this is a 1 off.

I think the worst thing about all this is if it had been anyone else, the person/s could have had a heart attack, gone home and committed suicide etc. It is not what Dr Death (as I call him) at Jimmy's said. It was how he said it and handled the whole situation. It was disgusting. I wouldn't treat my worst enemy like it.

It certainly is a maize if you need to complain. The majority can't do it in an appropriate way. Because of my background and experiences I was able to pull everything together, dissect, disregard and pull together what was happening.

Thank you re the local farm. As we don't have transport we use an online butchers which quite a few of us do on here called MuscleFood
 
Just a quick update and a little bit of amusement. Mr KK is still ''medically stable'' and they are sh*tting themselves that they are going to have to review the diagnosis this year cos Mr KK is not following the rule book of what they diagnosed last October.

Atm the excuse is his wonderful pure diet. Whilst that has helped alot so he is alot better in himself than he has been for along time, it's more than that.

Understand how the mistake could have been made. Haven't got over how they handled it even though the upheld complaint was given. Emotionally is has fc*ked us all.

They have removed another 2 of David's tablets by giving him Ferinject which is an iron transfusion which he will have twice a year. Has he is medically stable they can do this. As little blood vessels at times will burst in his liver due to the NAFLD this is why he is slightly anaemic.

Anyway the amusing part for the rugby fans in here is this:

Mr KK and the consultant always have a 5 minute banter over the rugby. With the consultant being English and Mr KK being Welsh you can imagine.

We have just received a regular letter this week after appointment which started 'with ''I reviewed this delightful man who was with his wife this week. I must say he was in remarkably good spirits considering England beat Wales this weekend'' :19: :19: :19: I kid you not.

David was half laughing, half stunned. Me I was in fits of laughter. Something you don't expect to see from a consultant and proving his eccentricity too and why we like this guy :19: :19: :19: