These are high protein foods. They are essential:

• For strong muscles.
• To fight off infections.
• For healthy skin and blood.

Before starting dialysis, you may have been advised to eat smaller portions of protein foods. Now your body is losing some protein during dialysis. You need to eat extra protein foods to replace what you are losing.

These are high protein foods:

Milk, cheese, yoghurt and fortified soya milk are great sources of protein and calcium. They also contain a lot of phosphate.

Phosphate levels in the blood may be high when the kidneys are not working properly; this can increase your risk of heart disease, cause weak bones and itching. Your dietitian will advise if you need to limit these foods to lower phosphate levels in the blood. See page 10 for more information about phosphate.

These foods give us energy. 

Try to include one serving at every meal. 

Wholegrain varieties are high in fibre. Fibre helps to keep your bowels healthy and prevent constipation. Constipation can prevent your dialysis from working well.  Try to choose these wholegrain foods:

• Wholemeal or granary bread.
• Wholegrain cereals such as shredded wheat or Weetabix.
• Wholewheat pasta.
• Brown rice.

You may have been advised to always boil potatoes, yam, cassava and plantain; this reduces the potassium. Your dietitian will advise you if you still need to do this.

Eat at least five portions of a variety of fruit and vegetables per day. 

You may have been advised not to eat some fruit and vegetables because your potassium levels in the blood have been high.

Your dietitian will advise you if you still need to do this.

Foods high in fat and/or sugar include pastry, fried foods, cakes, biscuits and chocolate.  

Dialysis fluid usually contains glucose (a form of sugar). Some of this glucose will get into your blood and give you extra calories which may cause unwanted weight gain.  

If your appetite is good and you want to manage your weight and eat to keep your heart healthy, you could:

• Eat smaller portions of high fat/high sugar foods.
• Choose low fat options where possible such as lean meats.
• Choose lower fat dairy foods such as milks, yoghurts and cheeses.
• Use smaller amounts of unsaturated fats and oils such as vegetable oil and olive oil spread.

Fluid mainly comes from liquids you drink.

When most people start dialysis, they are still passing urine. Fluid is removed from the body by dialysis and by passing urine. Many people find that after a while on dialysis they pass less urine; they begin to rely on dialysis to remove most of the fluid.

If you are drinking more fluid than can be removed, you will become fluid overloaded (oedema).  The extra fluid puts a strain on your heart and lungs. It is often difficult to remove extra fluid by dialysis.

Signs you are overloaded are:

• Rapid weight gain.
• Swollen ankles.
• Feeling breathless.
• Higher blood pressure.

Weigh yourself daily and this helps you quickly notice rapid weight changes due to fluid.

If you are gaining too much fluid your doctor, dialysis nurse or dietitian may advise you to limit the fluid you drink.

Tips if you need to have less fluid:

• Try to have fewer drinks and spread your fluid throughout the day.
• Use a small cup or glass for drinks.
• If eating sloppy or liquid foods such as such as soup, custard, yoghurt, ice-cream, reduce how much you drink.
• Spicy and salty foods can make you thirsty so try to reduce these foods.
• Try using plastic ice cubes in drinks to save extra fluid.
• Rinsing your mouth, gargling with mouthwash and brushing your teeth can help freshen your mouth.
• You can quench your thirst with slices of lemon, orange, frozen grapes, pineapple cubes, boiled sweets, sugar free mints and chewing gum.
• If you have a dry mouth, artificial saliva sprays may help such as Glandosane (available on prescription).
• Keep a record of all liquids you are having including all drinks, soups, gravies, jelly, yoghurts, and ice-cream.

Your dietitian can give you more ideas to help.

Eating less salt can help you to feel better. Reducing salt helps your dialysis remove fluid, can improve your blood pressure and make you feel less thirsty. Most of the salt we eat comes from processed and ready prepared foods. Tips to reduce salt:

• Have more home cooked foods. Cook from scratch where you can.
• Try to reduce processed foods. Sausages, bacon, ham, ready meals, jars of mustard, sauces, pickles, and table sauces are salty.
• When shopping, check food labels. Aim to eat mainly foods which have less than 0.3g salt per 100g or with a green traffic light symbol for salt. If you are choosing ready meals, aim for less than 1.8g per portion.
• Consider having higher salt foods (more than 0.3g salt per serving, or amber or red traffic light) less often and in smaller amounts.
• Free apps such as FoodSwitch or NHS Food Scanner can help.
• Flavour your food with herbs, spices, lemon, garlic, vinegar, dry mustard powder.
• Try to avoid using salt in cooking. Taste food first as you may not need it.  
• Try not to add any salt at the table.
• Avoid salt that has ‘low in sodium’ written on the label as these contain potassium. This includes LoSalt, Solo, Saxa So-low.

Your dietitian can give you more help to reduce the salt you eat.

Potassium is a mineral found in many foods. It helps our nerves, muscles and heart to work properly. Our kidneys usually control the level of potassium in the blood. Extra potassium is passed out in the urine.  

Dialysis removes potassium but you may still have high levels in the blood, especially if you start to pass less urine or have problems with dialysis. Your levels of potassium in your blood will be checked regularly.  

The target range for potassium in your blood is 3.5 – 5.4mmol/l. A high level of potassium can be dangerous, as it can affect your muscles and heart.  

Your dietitian will advise if you need to eat less potassium to keep your blood levels safe.      

These are foods and drinks higher in potassium:

• Some fruits such as apricots, avocado, bananas and dried fruit.
• Some vegetables such as mushrooms, parsnips, spinach and tomatoes.
• Potatoes which have not been boiled such as chips and jacket potatoes.
• Snacks such as potato crisps, nuts, chocolate and liquorice.
• Drinks such as coffee, malted milk drinks and fruit juices.
• Alcoholic drinks such as cider and strong ales.
• Soups containing tomatoes and vegetables.
• Salt substitutes such as Losalt, Saxa So low and Solo.
• Only limit high potassium foods if you have been advised to.

If you have diabetes, you may have been recommended to eat more fruit, vegetables and nuts. Your dietitian can advise you on appropriate quantities and help you choose lower potassium options. 

Rarely blood potassium levels may be too low. Your dietitian will advise you what to eat to help with this.

Phosphate levels in the blood can be high when the kidneys are not working properly; this can increase your risk of heart disease, weaken your bones and cause itching.  

Dialysis is poor at removing phosphate from the blood. Your levels of phosphate in your blood will be checked regularly.  

The target range for phosphate in your blood is 0.8 – 1.5mmol/l. If your levels are high, eating less phosphate can protect your bones and heart, and help you feel less itchy.  

High phosphate food and drinks include:

• Cola drinks and other dark coloured fizzy drinks which contain phosphoric acid.
• Processed foods containing phosphate additives such as ready meals, processed meats and cake mixes. Check the ingredients label for additives with ‘phosphate’ in the name such as diphosphates, triphosphates, sodium phosphate.
• Nuts and chocolate.
• Products with raising agents such as muffins and scones.
• Malted milk drinks, drinking chocolate and cocoa.
• Evaporated and condensed milk.
• Fish with edible bones such as sardines, pilchards and whitebait.
• Shellfish such as fresh crab and scampi.
• Offal products such as liver, liver sausage and pate.

Other high phosphate foods such as dairy products, milk, fish and meat are good sources of protein and other nutrients.  Some recommended portion sizes are below. 

Your dietitian can guide you on how many servings to have per day or per week. For most people 2 servings per day of dairy foods and up to 6 eggs per week will limit the amount of phosphate you’re eating. 

If you are already following a low phosphate diet your dietitian will advise if you need to continue. Only limit high phosphate foods if you have been advised to.

To help control phosphate levels, some people may be prescribed tablets called phosphate binders. Your dietitian will advise on the best way to take these to make sure they work well.

If you have peritonitis you will lose more protein than usual through the dialysis process. Eating extra protein foods at this time will help your recovery. Ask your dialysis nurse or renal dietitian for advice. The information below may help if your appetite is reduced.

If you have a small appetite, the following information may help:

• Eat little and often throughout the day.  Try three meals and 2 - 3 snacks every day.
• Eat small nourishing snacks between meals such as cereal and milk, cheese and biscuits, cakes, biscuits, desserts, pastries.
• Have a snack, sandwich or a milky drink if you cannot manage your normal meal.
• Try easy to prepare high protein meals such as cheese, scrambled egg, poached egg on toast or omelette.
• Use full fat and full sugar versions of foods and drinks such as full fat milk, full fat yoghurt instead of diet or low fat ones.
• Try to eat more on days or at times you feel better.
• Spread butter, margarine, honey, jam and marmalade thickly on bread, croissants, and crumpets.
• Add honey or sugar to cereals and puddings.

Eating well is important to help you feel better and cope with dialysis.  

Some of these foods are high in salt, sugar, phosphate and potassium which may not be in line with the diet you have previously been advised to follow. If you have diabetes or you are limiting potassium or phosphate speak to your dietitian for more information.

Water soluble vitamins are lost during the dialysis process. 

Your GP can prescribe a multivitamin tablet (Renavit) suitable for people with kidney disease; this helps to replace the vitamins lost during dialysis.  

Renavit contains a beef product so if you are unable to take this, we can recommend an alternative.

You will need to take Renavit once a day.

Many people want to eat food that is more environmentally friendly.

Below are some ideas you could consider:

• Try some plant food sources of protein such as beans, lentils, soya mince, Quorn, tofu.
• When buying fish look for the Marine Stewardship Council or Aquaculture Stewardship Council symbols.
• Try calcium fortified plant milk such as soya or oat instead of cow’s milk.
• Opt for wholemeal breads and wholegrain versions of pasta and cereals.
• Choose local and seasonal produce.
• Avoid chopped, ready prepared and packaged fresh fruit, veg and salads if you can.
• Reduce food waste, especially of fresh fruit and veg, by choosing tinned and frozen alongside seasonal fresh produce.

Patients Know Best is an easy-to-use online service that allows you to monitor your own blood test results.
Register to Patients Know Best - Patients Know Best

Information on kidney disease and food written by the kidney dietitians at North Bristol NHS Trust.
Nutrition & Dietetics | North Bristol NHS Trust (nbt.nhs.uk)

Education videos on how to eat less salt presented by the Kidney dietitians at North Bristol NHS Trust.
Educational videos on salt for kidney patients - YouTube 

Diet and lifestyle information including recipe books to download.
Living with kidney disease | Kidney Care UK

Diet information including menus and recipe books to download.
Kidney Patient Guide - Diet

Website of the Edinburgh Renal Unit and contains useful dietary information.
Diet in renal disease – edren.org
 

Foods that weigh more than 100g can be labelled per portion. Please check the suggested portion is the same as the amount you plan to eat.

Where possible, try to avoid foods with more than 1.8g of salt per portion.

Salt is 0.6g/100g which is medium (amber). 

Salt is 1.51g/100g which is high in salt (labelled red). 

Meals eaten away from the home are often high in salt. If you know you will be eating out, try to choose lower salt options for other meals and snacks eaten that day.

• Feta, halloumi and blue cheese. If you eat a lot of moderately high salt cheese such as cheddar, try lower salt alternatives such as cream cheese and cottage cheese
• Salted butter (try margarine or unsalted butter).
• Cured meats such as bacon, ham, gammon, salami, chorizo, Parma ham, serrano ham, salt beef. 
• Tinned and processed meats such as corned beef, luncheon meat, spam, sausages, black pudding. • Smoked fish (haddock, mackerel, salmon) and shell fish.
• Tinned vegetables, sundried tomatoes, olives in brine. 
• Sauces such as soy, oyster, ketchup and ready spice mixes/seasonings – if using, add in smaller amounts. 
• Salted crisps and nuts. Try unsalted varieties.

Useful websites 

Action on salt: 
Action on Salt - Action on Salt

British Heart Foundation:
Salt - how much is too much? - BHF

The Eatwell Guide:
The Eatwell Guide - NHS (www.nhs.uk)

A with more information about salt:
What is salt? (youtube.com)

Useful apps

Apps you can use to scan your food and look for lower slat alternatives.

FoodSwitch
FoodSwitch UK

Better Health
Healthier Families - Home - NHS (www.nhs.uk)

They are the layer of muscles that extend from your pubic bone at the front of your pelvis to your tail bone (coccyx) at the back of your pelvis. They are the the muscular support at base of your pelvis.

• Bladder control. 
• Bowel control.
• Sexual function.  
• Stabilises the pelvis. 
• Supports the pelvic organs.

• Prostate or pelvic surgery (e.g. prostatectomy).
• Radiation to the pelvis.
• Straining to poo due to chronic constipation.
• Certain conditions such as MS, strokes, or uncontrolled diabetes.
• Being overweight.
• Chronic coughs.
• Injury to the perineum. 

Many men experience weakness of the pelvic floor. If this happens you may have a variety of symptoms including:

• Leaking urine during activity, for example when you sneeze, cough or laugh (known as stress urinary incontinence).
• A need to go to the toilet often during the day or night (known as frequency or nocturia, respectively).
• An urgent need to visit the toilet and leaking before you get there (known as urgency incontinence).
• You are unable to control the passing of wind or stool from your back passage.
• Erectile dysfunction (the pelvic floor helps you maintain erections).
• Post micturition dribble (leaking urine immediately after you have finished passing urine).

The pelvic floor muscles can be strengthened to increase the support of the pelvic organs. This can improve bladder and bowel control and can reduce/cure leakage of urine. It may also improve your ability to maintain an erection. 

It’s important to know where the pelvic floor muscles are, so that you’re sure you’re exercising the correct muscles. To identify the pelvic floor muscles, tighten your back passage as if you’re trying to stop yourself passing wind; at the same time, imagine you’re trying to stop yourself passing urine.
You should have a sense of squeezing, pulling the back passage up and in. You may see the base of your penis retract slightly in your body and your testicles rise a little. Do not tighten your thighs or buttocks and do not hold your breath. After contracting it is important to feel the muscles relaxing and softening as you let go.  

You can exercise your pelvic floor anywhere and anytime. They can be performed lying, sitting or standing  but to start with it may be easier to do the exercises sitting down. Make sure you’ve found the correct muscles and know how it should feel when you tighten them before trying these exercises.

There are two types of exercises, slow and fast, it is important you do both:

Exercise 1: slow pull-ups

• Take a breath in. 
• On the breath out, tighten the pelvic floor muscles. 
• Return to normal breathing but continue to tighten for your length of hold, relax, and feel the muscle let go. 
• Rest for 5 seconds. 
• Repeat this 5 times.

As it gets easier, gradually increase length of hold and number of repetitions, aiming for 10 seconds.

Exercise 2: fast pull-ups 

• Tighten the pelvic floor muscles quickly and then let go straight away. 
• Repeat this 10 times – approximately 1 contraction per second.

You may find that the muscles are weak initially and that it takes a lot of concentration to exercise them, but this should improve with time

Do not practice stopping the flow of urine midstream as this may interfere with the normal process of emptying your bladder.

Do exercises 1 and 2 during each session. As soon as you can, increase to 10 slow and 10 fast pull-ups. 

Aim to repeat these 3 times each day, so in total you will be doing 30 slow and 30 fast pull-ups a day. 

It will take up to 3-6 months of regular exercise to increase the strength in your pelvic floor muscles and hopefully reduce your symptoms.

As your muscles get stronger you may progress to doing the exercises standing up.

To help remind you to do your exercises daily try to combine them with an everyday activity, for example, when brushing your teeth, and after breakfast, lunch, and dinner. 

You can also download an app called Squeezy which is recommended by the NHS. It will send you reminders to do the exercises and you can personalise the programme to suit you.

Once your symptoms have improved, continue with these exercises once daily for the rest of your life to keep these muscles fit and healthy (e.g., 10 slow and 10 fast pull-ups daily).

• Being overweight can weaken the pelvic floor muscles so it is important to maintain a healthy BMI. 
• You may want to try sitting in the correct toilet position to help with constipation like in the image below. (This is sat on a toilet with feet on a foot rest, knees higher than your hips, lean forward with your elbows onto your knees. Bulge out your abdomen and straighten your spine). 
• You should try to drink 6-8 cups of fluid a day. 
• Caffeinated drinks, alcohol, acidic drinks (fruit juices) and fizzy drink can irritate your bladder and cause urgency; we suggest avoiding these. 
• Tighten the pelvic floor muscles before lifting anything heavy or if you are going to sneeze or cough. 
• If you have urgency, contract your pelvic floor muscles when you have the desire to empty your bladder and only move when the desire has passed.

Image courtesty of Bladder and Bowel Community:
www.bladderandbowel.org/help-information/resources/toilet-positions/

Overview | Lower urinary tract symptoms in men: management | Guidance | NICE

Alcohol can impair your judgement, memory and alter your behaviour. It may lead to:

• Misreading situations and reacting in ways that are out of character
• Increase your vulnerability to financial and sexual exploitation.
• Arguments can escalate into assault or fights.

Delay making important decisions if you have been drinking; consider getting advice/support from trusted friends/family/ healthcare professions.

Don’t drink and drive. On average it takes a healthy liver an hour to process one unit of alcohol. An evening drink can mean you still have alcohol in your system the next morning. The safest option is to avoid drinking alcohol altogether when driving.

Alcohol can:

• Increase the effect of sedatives or painkillers (e.g. causing drowsiness or respiratory problems).
• Reduce the effects of medications like antidepressants and anticoagulants.

Check with your GP, pharmacist, or medication leaflet about safe alcohol use with your medication.

Alcohol can damage nearly every part of the body:

• Heart - weakening of the heart muscle can lead to a build-up of fluid in the lungs which results in shortness of breath.
• Cancer - 6% of cancers world wide can be linked to alcohol. Mouth, stomach, liver and breast cancers have strong links with alcohol use.
• Malnutrition - alcohol has lots of calories for energy, but none of the protein, fats, vitamins or minerals you need to keep the body in good repair. People who drink most days are recommended to take thiamine and Sanatogen.
• Balance – increased risk of falls and injuries (even when not intoxicated).
• Blackouts, seizures, or fits.
• Stroke.
• Poor sleep - broken sleep, early morning waking and daytime tiredness.
• Menopause - increase in symptoms.
• The stomach lining - ulcers or bleeding.
• The liver - fatty liver, cirrhosis and liver failure.

Anxiety

Alcohol may provide short-term relief, but it increases anxiety in the long term, creating a cycle of dependence.

Depression

Alcohol is a depressant. It can lead to a loss of interest in things you used to enjoy, make you struggle to concentrate. You can feel tired, but have difficulty sleeping. Your appetite can be poor, and your body can become depleted of essential nutrition for normal brain function. In extreme cases you may feel life is not worth living.

Hearing voices

This is less common but can happen if you have been drinking heavily for a long time. It starts with vague noises, like leaves rustling, and gradually becomes distinct voices. These can be unpleasant and distracting. 

Confusion and memory loss

Thiamine and magnesium are essential for brain function. Drinking combined with poor diet can result in low levels of these nutrients; this can cause confusion and poor memory.

Changing your drinking habits can be hard but it is possible, and support is available.

Start with a drink diary (see example at the end of the leaflet). Knowing what and when you drink can help you plan realistic changes.

Have an alcohol reduction plan 

• Think about hobbies, interests and social opportunities that don't revolve around alcohol. This may be a brand new activity or something that you used to enjoy.
• Alcohol can fill a gap when you are bored so don't leave space. Occupy yourself and get out of the routine/habits that revolve around alcohol.
• Local Council websites/libraries will have information about volunteering opportunities, wellbeing groups and leisure activities in your local area.
• Friends and family can support you to make changes.
• Home measures are usually large ones. Use a measure or a smaller glass, and make sure you keep track. Don’t top-up your glass before it’s empty. Put the bottle away between drinks.
• Make each drink last longer. Drink a soft drink or water with, or after, each alcoholic drink.
• Eat something before drinking to slow alcohol absorption.
• Plan two or three alcohol-free days a week.
• If you slip up, don't give up! If it was an easy thing to do you would have done it already. Have a plan and celebrate small wins.

Drink Line:
National alcohol helpline.
0300 123 1110

Drink Aware
Tools and information for alcohol reduction.
0300 123 1110
Drinkaware Home | Drinkaware

SMART Recovery
CBT based mutual aid support group.
Self-Help Addiction Recovery | UK Smart Recovery

Alcoholics Anonymous (AA)
Mutual aid support group.
Home - Alcoholics Anonymous Great Britain

BDP 50+ Crowd
Weekly group for people over 50 with past or current problematic alcohol or drug use.
The 50+ Crowd - Bristol Drugs Project

Horizons
Bristol alcohol service.
www.horizonsbristol.co.uk

DHI South Gloucestershire
South Gloucestershire alcohol service.
South Gloucestershire Drug and Alcohol Service | DHI

We Are With You
North Somerset alcohol service.
Drug and Alcohol Support in North Somerset | WithYou

Alcohol support apps

• NHS Drink Free Days
• Try Dry app
• I am sober app

• A charitable fund established in 2006.
• Applications are assessed in a two stage process
• Supports research projects from all clinical areas, led by researchers of all levels of experience.
• Supports high quality research projects with the potential for making a real impact within the NHS. 

Benefits for research and healthcare:

• Members of the public should help decide how donated public funds are spent 
• Bring a unique perspective
• Ensures that the process is focused on what is important to patients.
• Ensure research has considered the participants point of view

• Everyone is welcome on the Public Panel, no previous experience needed. 
• All perspectives are equally important 

Two meetings will be held one around the end of July and the second at the end of September.

• There will be a short introduction/training session about taking part- 1hr long
• You will be expected to read and comment on Researchers applications for Funding before attending the meetings
  • The minimum you will need to read is a summary written in plain English of around one page long (500 words) per application
  • We expect there will be around 8-12 applications
  • We ask you to fill in a feedback form (4 questions) to get your comments on the researchers’ applications
  • We give you at least two weeks to read and comment on the applications
• You will be expected to attend two panel meetings
  • The meetings are two hours long (with breaks) and will most likely be held online
  • In the meetings panel is split into smaller groups and discuss their opinions of the applications with one of our Facilitators
• We ask two volunteers from our public panel to attend the awarding meeting to represent the views of the panel

• You will receive payment for two hours of pre reading per meeting at £25 per hour and £5 for home working 
• You will receive payment for attending the meetings at £25 per hour and £5 for home working

• Bleeding: you may get some oozing from the wound after the operation. This is usually not serious but may lead to bruising. If this bleeding continues, it can usually be stopped by holding firm pressure on the wound constantly for 20 minutes.
• Scarring: every attempt is made to repair the wound in a way that will allow the scars to be hidden as much as possible. We will discuss repair options on the day.
• Incomplete removal and further treatment: we double check some results afterwards and very rarely find a tumour has been missed on the day. This can mean we recommend further treatment, but not always.
• Recurrence: the tumour rarely regrows years later.
• Allergic reactions: this is extremely rare but you can get a reaction to rubber gloves, antiseptic solution, local anaesthetics, antibiotics and the dressing. Make sure to tell the doctor if you are allergic to any of these.
• Delayed repair: rarely if your tumour is complex, you may need to return a few days later for further surgery and repair. Occasionally, the wounds are large or complex and you may need another specialist surgeon, which we will discuss and arrange with you.

Things to be aware of: 

• You will need to arrange time off from work or your usual responsibilities for at least 1 week after the surgery. The amount of time will depend on the complexity of surgery and the type of activities you normally do. You do not want to go on holiday within at least 2 weeks of surgery, which allows sufficient time for the wound to settle down and to have most problems dealt with before you go. Please discuss this with the doctor.
• You may eat and drink normally before and after your operation, unless told otherwise.
• If on Warfarin, please get a blood test (INR) five working days before surgery and find out the result. Please bring this result with you. The INR should be steady and between 2 to 2.5 ideally. If not please contact us straight away and ask your GP to alter your dose. If not we may have to cancel your surgery when you arrive.
• We do not usually ask you to stop aspirin or other ‘blood thinning’ tablets unless you are taking more than one together. This should be discussed with you in clinic. These medicines include aspirin, dipyridamole (Persantin or Asasantin Retard), clopidogrel (Plavix), warfarin, dabigatran (Pradaxa), apixaban (Eliquis), rivaroxaban (Xarelto), edoxaban (Lixiana), and heparin. Usually, the reason for taking the medicine is more important than the minimal risk of a bad experience from some bleeding or bruising after surgery.
• Take all other regular medications as normal.
• Before you attend for surgery, please remove all make-up and jewellery from your face (i.e. earrings), not just from the area being treated.
• If your surgery is in a hair-bearing area, we may clip the hairs nearby to improve access and ease of dressings. If you are shaving, please do so the night before surgery. There is some evidence that shaving just before surgery can increase the chances of wound infection.
• Please tell the doctor well before your operation if you have any implanted devices - for example a pacemaker, defibrillator, deep brain stimulator etc. You may need a device check before the procedure if your usual check is overdue. If so, we will arrange that and let you know.
• Smoking harms the healing process. You can improve your chances of good healing and a better scar by stopping smoking at least a few days before surgery, until at least a few days afterwards. This can be a good opportunity to kick start stopping altogether if you wish, which will help your general health too.
  For Stop Smoking advice phone: 
  0300 123 1044 
  or visit 
  Quit smoking - Better Health - NHS (www.nhs.uk)

Please come to the Brunel building at Southmead Hospital. Report to the waiting area at Gate 24b. You will need to allow enough time to reach Gate 24b before your appointment. When you have arrived, a nurse will escort you to the theatre area, where you will be given a hospital gown to wear.

If you are late your operation may need to be cancelled. At times parking can be difficult so allow plenty of time. You can travel to the hospital by whatever means you wish, but you will not be fit to drive yourself home or use public transport after the operation.

The lesion may be photographed before and during the procedure with your consent. Local anaesthetic is injected to numb the area. You will be fully awake throughout the procedure. You may need repeated injections throughout the day to keep the area numbed. 

Occasionally if your wound is large or complex, another type of specialist surgeon may come to reconstruct your wound or might do this at your local hospital if you live far from Bristol. Sometimes you may need to go to the main operating theatres upstairs in the hospital for part of your operation or reconstruction. This will usually have been arranged in advance, and sometimes might involve a general anaesthetic.

Stitches

If you have stitches in your wound, we often ask you to come back the following week for them to be removed, or you may need to arrange to have them removed at your GP surgery.

If a change of dressing is needed, then either the practice nurse at your local GP surgery or district nurse could 
usually do this for you. We can help you arrange this on the day of surgery.

Will the area be painful afterwards?

• After the local anaesthetic has worn off (approximately 2 hours), the area will often be somewhat painful and we advise you to take regular Paracetamol for the next couple of days (depending on your usual medications).
• You may experience some bruising and swelling; this should settle down within a few days, but may last longer.
• The surgeon may prescribe a course of antibiotics for you to take after the operation.

How will the wound be repaired/reconstructed?

There are several options depending on the size and position of the wound.

Healing naturally (secondary intention healing)

• What does this mean? Healing naturally usually takes longer than if closed together (about one to two weeks per cm of wound diameter). It may be a good choice for a small wound that cannot easily be closed together or if you want a simpler, quicker operation to avoid a skin graft or skin flap, and reduce your visits to hospital.
• How do I care for the wound? The wound will require a change of dressing two or three times per week until healed, but this is usually done by your GP practice or district nurse.
• What will my scar look like? In the right area healing naturally usually ends up looking very good, but this can take many weeks.

Direct closure (sewing the edges together usually in a line)

• When can this be done? Most Mohs surgery wounds are too complex to use this technique. Otherwise this usually gives the quickest healing, easiest aftercare, and best scar.

Skin graft (using a patch of skin from somewhere else)

• Where does the skin graft come from? The “donor” site is usually where the skin is loose and thin and it is easy to stitch the edges together (e.g. above your collar bone, neck, or behind your ear).
• How is the skin graft put on? The graft will usually be stitched in place. Often, a small wad of dressing material is stitched over to hold the graft firmly.
• What will my skin graft look like? Usually some bruising and crusting in the first few weeks. It can take up to 18 months for a scar to ‘mature’, usually becoming pale, soft, flat and supple. Your doctor will do their best to match the skin graft to the skin removed so that it blends in as much as possible. Sometimes it is almost unnoticeable, but other times it is more difficult to hide and the differences to the surrounding skin are more obvious.

Local flap (moving nearby skin or muscle whilst still attached)

• What will my local flap look like? The aim of using nearby skin is to provide a better match to the skin removed. Usually this is successful but the appearance varies similar to skin grafts.

Bleeding

When you go home you will have a bulky dressing covering your wound; this is essential for pressure to stop any bleeding. It is important to leave this on. If you experience bleeding from the wound, apply direct firm pressure to the wound for 20 minutes. This should stop the bleeding. If this does not help contact us on the numbers below, or your GP.

Infection

The usual signs of infection are pain, swelling, redness, increased temperature of the skin near the wound (or a fever), pus from the wound. Pain, swelling and redness are common in the first three days after surgery but should be improving. If not, the wound may be infected, and you may need antibiotics. If you see these signs seek medical advice from us or your GP.

• It is advisable to avoid alcohol for 48 hours after surgery to reduce the risk of bleeding.
• If you are elderly or frail, we recommend having a relative or friend with you overnight after the surgery or at least contactable nearby.
• Avoid bending over, straining, or exerting yourself, and sleep more upright than usual (i.e. with an extra pillow) for a few days to reduce swelling.
• Once healed, care for any skin graft with daily moisturiser, and sunscreen when exposed. Grafts remain more sensitive long term.
• Leave the dressing in place and dry for the first 48 hours, then remove it carefully or soak it off, unless you have been told otherwise (e.g. for skin grafts it is left     untouched for 7 days and removed by us in hospital).
• Change a dressing if it gets wet or dirty. A wet dressing can lead to an infection. For skin grafts just change the outer dressing and do not disturb underneath, or contact us.
• Keep the wound clean. Wash it daily after dressings have been removed, but avoid the direct force of the shower on the wound.
• Apply petroleum jelly (e.g. Vaseline) from a new clean pot with a clean cotton bud several times a day.
• You may have self absorbing stitches. These usually fall out within 3 weeks. Otherwise, stitches are usually removed after 7 days, in hospital or at your GP practice. 

If you want to know more or have any questions or concerns, please contact us. 

If you have trouble with your wound in the days after surgery, the Dermatology nurses can be reached on  0117 414 8704 between about 9am - 5.30pm most weekdays, or call the secretaries on 0117 414 7621.

There is no Dermatology on-call service for wound problems out-of-hours, so there is a formal arrangement between Dermatology and Plastic Surgery to provide help instead.

• Between 5 - 8pm on Monday to Friday, and between 8am - 8pm at weekends, please call the Plastic Surgery coordinator on 0117 414 8300.
• After 8pm, please call Southmead Hospital on 0117 950 5050 and ask to be put through to the Plastic Surgery SHO on call, quoting this leaflet.

Other options for problems out-of-hours include advice from your local out-of-hours GP service, walk-in centre, or the Emergency Department. If you must seek help show them this leaflet and please let us know what has happened as soon as possible afterwards.

If you cannot attend or no longer need your appointment, please phone 0117 414 7416 and tell us.

Appointments are precious. Enable another patient to take your place. Please give us as much notice as possible.

Not all patients with anti-synthetase syndrome are the same. It is a spectrum condition, where there can be a mixture of symptoms, or some symptoms are more prominent. Symptoms associated with anti-synthetase syndrome include the following:

Interstitial Lung Disease (ILD)

As many as 75% of those with anti-synthetase syndrome have ILD. This may be the first or only symptom of the condition. 

The ILDs are a group of lung diseases where there are varying degrees of lung inflammation or irreversible scarring (fibrosis) of the tissue around the air sacs (alveoli). In ILD it can be more difficult for the lungs to transfer oxygen into the bloodstream, and as a result, the body may not get the oxygen it needs to function properly. This can cause breathlessness and/or a cough from the irritation.  Patients may also complain of fatigue.  A ‘crackle’ sound is heard when listening to the chest with a stethoscope.

Muscle inflammation

Patients may experience muscle pain, fatigue and weakness. This typically affects the muscles across the shoulders and the pelvis/thighs.

Inflammatory arthritis

Patients may experience pain, stiffness, swelling, redness or warmth around joints. This typically affects small joints hands, feet but larger joints can be involved as well.

Fever

Some patients can present with a fever that is unrelated to infection or other causes. 

Raynaud’s phenomenon

This is when very small blood vessels can spasm or constrict leading to reduced blood flow, typically involving the fingers and toes. The nose and ears can also be affected. These episodes are usually triggered by cold or stress.  They can last several minutes to several hours and can cause the affected part to feel numb and cold and to turn white or blue.

Mechanic’s finger or hands

The skin on the sides of the fingers (usually just the thumb, index and middle fingers) becomes dry and cracked with characteristic thickening. It can be sore with broken areas. 

Your specialists will take a detailed medical history and perform a thorough physical examination. You may be asked to have the following investigations:

• Chest X-ray.
• Lung function tests – breathing tests which so how well your lungs are working. These are used later to monitor your lung disease and how it is progressing. You may also be asked to have a walk test where you will be asked to rate your degree of breathlessness and measure your walking distance and oxygen levels.
• A CT scan of your chest shows a detailed picture of your lungs. There are characteristic features on the CT scan that can allow your specialist to identify either scarring or inflammation of lung tissue.
• A series of blood tests including a screen for specific autoantibodies related to CTD-ILD.
• Some people may also have a bronchoscopy, where a small flexible tube is passed down into your lungs, allowing collection of cells which may help with diagnosis.
• If you have joint and muscle symptoms, additional tests will include joint X-rays, ultrasound scans, and muscle MRI scans.

Treatments may differ depending on the symptoms you have, and your specialist will discuss whether a particular treatment is right for you.

Medications

Steroids are produced naturally in the body by the adrenal gland. Additional steroids in the form of prednisolone can be given to attempt to reduce inflammation in some patients. They are usually given in tablet form but may be given intravenously. If you are prescribed steroid tablets on a long-term basis, you should not stop them abruptly. You will be given a ‘steroid emergency card’ which you should always carry with you.

The specialist may also assess the need for bone protection medication and anti-reflux treatment whilst on steroids.

Immunosuppressive medication

Cyclophosphamide, Mycophenolate mofetil and Azathioprine are medications that modulate the immune system to achieve disease control.

When used with a corticosteroid such as prednisolone, it can also allow the dose of the steroid to be reduced and in some cases, may allow the steroids to be withdrawn altogether. As a result, they are sometimes also called a ‘steroid-sparing agent’. You will require regular blood tests to monitor your response to treatment.

New treatments are becoming available, and your specialist will decide upon these treatments on an individual basis.

Other medications and therapies are used to relieve symptoms, such as cough, breathlessness, joint and muscle pain and Raynaud’s. Your specialist will discuss options with you on an individual basis.

Other treatments

Pulmonary rehabilitation is a supervised exercise and education programme that can help you to learn to manage your breathlessness and remain active. The programmes are multidisciplinary, meaning that the team includes respiratory physiotherapists, nurses, dieticians, doctors and others, and can help improve your energy, strength, and quality of life.

As fibrosis inhibits an adequate supply of oxygen into the bloodstream, some individuals may require supplemental oxygen therapy. Where the levels of oxygen are low, oxygen therapy may help with breathlessness and enable individuals to be more active. Corrected levels of oxygen in the blood are necessary for normal body functions and reducing additional health problems.

You should also discuss with your physician if there are any clinical trials in which you can participate. Clinical trials are voluntary research studies, conducted in people, which are designed to answer specific questions about the safety and/or effectiveness of medications.

A small minority of patients may require assessment for and be suitable for lung transplantation.

Have your seasonal vaccinations (COVID-19 and Flu) and the pneumonia vaccination (you only have this once).

You may be eligible for a variety of benefits such as Attendance Allowance or Personal Independence Payment if you need help with personal care or getting about.

Our specialist nurse runs a regular Pulmonary Fibrosis Support Group which is a space for discussion with other patients with ILD. Here we also aim to provide several presentations from a variety of guest speakers and charities.

Keep active and do what you enjoy!

Action for pulmonary fibrosis: 
Home (actionpf.org)

British Lung Foundation: 
Asthma + Lung UK (asthmaandlung.org.uk)

Versus Arthritis UK: 
Versus Arthritis | A future free from arthritis

Myositis UK: 
Home - Myositis UK
 

For ILD related queries:

Bristol Interstitial Disease Service
Respiratory admin 0117 414 7762
ILD@nbt.nhs.uk

For CLD related queries (not related to lungs/breathing):

Rheumatology advice 0117 414 0600
rheumatologyadviceline@nbt.nhs.uk