Preparing For and Recovering After Surgery

Having written about all the cosmetic things I do to keep myself looking and feeling nice while I'm recovering from surgery, I felt that there were also a number of things I would do to help my mental and physical health during the recovery period.

One of the things that people never tell you about surgery is how hard that recovery period can be. In an age where cosmetic surgery is touted as a 'quick fix' and an 'easy option', it's natural to lose sight of what actually happens during a surgical operation.

In my opinion, surgery is not an easy answer to anything. But, having said that, sometimes surgery is the only answer. Not, in my case, to get bigger breasts, slimmer thighs, or a smaller nose. I have surgery to stabilise my joints on the rare occasion that there seems to be a surgical solution to a particularly problematic (unstable) joint. I have had surgery in the past to remove my appendix, my tonsils and my adenoids, and more recently, to fit a feeding tube into my small intestine, after months of trying everything to avoid the need for surgery.

So, we've established that I'd rather not have surgery, and that I would prefer a conservative approach, exploring all other options before resorting to surgery. But now I need to have an operation, and I want to make sure that my recovery is as smooth and straightforward as possible. For me, the key to this is preparation, which falls into three categories: before the surgery, immediately after the surgery (hours and days), and in the recovery period (weeks to months). Of course, the answer always lies in a list!

 Be mentally prepared:

Know that after the surgery, you will probably have a wound. This is a cut that goes through all the layers of your skin and the tissues underneath it. If you were lucky enough to have 'keyhole' surgery, you will have several shorter wounds, but they are still wounds, they will still hurt, and they still need to heal. If they are on your abdomen, you are likely to feel them with every movement for several days, if not longer.

So you have at least one wound. But the wound is just the access point that allowed the surgeon(s) to get to the part of your body that interested them. If you've had orthopaedic surgery, it is likely that the muscles, ligaments and cartilage around the joint will have been stretched, if not cut, torn or moved and reattached. You may have broken bones (either the cause of the surgery, or resulting from it if you need a joint re-aligned, for example) and pins, screws, plates, and other things that belong in the garden shed, rather than inside one's body. Sutures, staples and dressings all bring their own brand of discomfort, as do plaster casts. Those applied during surgery are unbelievably heavy and unwieldy. You may find that the dressings or stitches cause irritation and itching, and problems all of their own, without even thinking about the wound.

If your surgery involved your GI tract, you may find that you have a lot of pain, bloating and distension. The intestine does not like being handled, and will make its displeasure known. Even if your GI tract was left well alone, you may find that the medications given during surgery have a GI effect. Painkillers can cause constipation; antibiotics can cause diarrhoea. If you were ventilated during your operation, you may have a sore throat from the tube, and/or a dry mouth, throat, nose and face from the oxygen and anaesthetic gases. Ah yes, those anaesthetic gases. And the other medications used to induce and maintain anaesthesia. They cause nausea for many people, as do some of the strong painkillers that are often used. Just for a moment stop and imagine how much you would NOT want to vomit immediately after abdominal surgery. Or surgery to your head/neck. Or to your ribcage/lungs/heart.

Cosmetic surgery and weight loss surgery get so much coverage, and are now such common procedures that it's easy to forget that they are still surgical procedures. I once had orthopaedic surgery (actually, more than once, but we'll just consider this one example). I was in hospital overnight after the procedure, which lasted approximately half an hour. By any standards, this was a routine, straightforward operation. I left hospital with three scars, each only a couple of millimetres in length, two wires in my wrist, and a plaster cast from finger tips to shoulder. I can't tell you how much pain I had after that surgery. My surgeons had focused on how simple the procedure was (from their point of view), so I was really not prepared in my own mind to have lots of pain as well as the usual annoyances of having a limb in a cast.

Before the surgery:

Prepare yourself mentally for it to hurt a lot. Make sure that your doctor or surgeon prescribes appropriate painkillers for after the surgery and ask if there is anything they can use during the surgery (e.g. a nerve block or local anaesthetic injection) to reduce the pain afterwards, or if they would recommend using TENS, guided imagery, heat or cold therapies. You may find that you only need simple over-the-counter medications and ice packs for a couple of days, but it's always easier for things to be prescribed in advance. If you find that simple painkillers are not enough, chances are that it will be the middle of the night and it's hard to get the on-call doctors to come and assess you (because there's been an emergency, say) and then to write up the medication, which may need to be ordered from pharmacy, while you feel miserable for hours. If it's already prescribed and ordered and you don't need to use it, that's great, but make sure it's there if you need it. I would recommend asking your doctor to prescribe something for nausea as well, to be given if you need it.

Discuss any other medications that you take with your doctors and ask if there's anything that you need to stop prior to surgery (e.g. garlic supplements, St John's wort, blood thinners) or anything that you might need to increase (e.g. steroids). If it's likely or possible that you might have problems with swallowing after the surgery, ensure that your medications are written up in alternative forms, e.g. IV. If you take regular medications, make sure that you have a good supply before going into hospital, and if you're started on any medications while in hospital, ensure that you're given enough to last you the full course (or until you can get more from your GP).

If you have had previous problems with anaesthetic, or if you have other complex or severe medical conditions, make sure you get blood tests done prior to the surgery (this is usually offered at pre-op assessment, along with ECG testing and x-rays if necessary) and speak to the surgeons and anaesthetists beforehand. If you know that you need things to be done a certain way, don't be afraid to ask. If you're a hard stick for IV access, the anaesthetists can knock you out with anaesthetic gas and then get the IV while you're asleep, if that's more comfortable for you. If you have problems with fasting, ask if you can be admitted the previous day for IV glucose, and/or to have your surgery scheduled early in the day. If you have problems with anxiety, ask for premedication for it. There are so many things for the anaesthetists to consider before your operation, so if you don't mention the things that are important to you, they may not think about them. Don't be afraid to take responsibility for your own care!

Think about what you're going to eat and drink for the week or fortnight following the surgery. If you normally cook for other people at home, think about that too. Being prepared for the worst case scenario, assume that you will not cook. If you can, stock the freezer with meals to reheat - making double portions of casseroles, bolognese, etc. for a couple of weeks prior to the operation, and arrange for a friend to bring a meal or pick up something from a local restaurant the first night you're home. If you're not in an area where you can order groceries online for delivery, ask a friend or family member to shop for you for a couple of weeks. Stock up on meal replacement drinks or 'easy' snacks if you think you might struggle to eat 'proper' meals. If you're likely to have a course of antibiotics, consider buying probiotics to use once you've finished the course of antibiotics.

If you have pets or children, arrange for someone else to take on the main responsibilities for a while. You can always go with them for a walk, but it can be helpful to know that you don't *have* to go if you don't feel up to it.

Consider where you're going to sleep. Is it upstairs? Is that going to be a problem? Is it near to the bathroom if you need to get up in the night? Do you have plenty of pillows and cushions to support you in bed, if that's where you're going to spend a lot of time? Think about how you're going to be able to get to the bedroom, the bathroom, and any other room where you expect to spend a lot of time. You may find that it's safer to have a pair of crutches downstairs and another pair upstairs so that you can shuffle up and down the stairs on your bottom without trying to carry sticks at the same time!

If you're on crutches, how are you going to get around the house, and how are you going to carry things? I have a little backpack that I wear around the house. Actually, it has my feeding pump in it, but it has enough space for a bottle of juice (doesn't spill). Consider putting hot drinks in a flask and cold drinks in a bottle for safe carrying around the house. If you think that you might need any equipment (dlf.org.uk has some good examples of equipment or adaptations that may be helpful in various situations), order it with plenty of time. The Red Cross are often able to loan wheelchairs and equipment if you can't get the equipment from your local Social Services department or from the hospital.

I always try to increase my protein intake prior to surgery, and take a vitamin and mineral supplement. If you smoke, surgery is a great reason to stop (or cut down, or take a break). Almost nothing else impairs healing quite like cigarette smoking. If you're diabetic, try to control your blood sugars extra carefully in the run-up to surgery. If you're overweight, try to lose some weight; if you're underweight, try to gain some!

Recovering from surgery can be tedious, especially if you can't go straight back to work, or back to your usual activities. Set up 'dates' with friends, either for visits in person, or for telephone calls or Skype calls. Now is a great time to stock up on DVD box sets (beg, borrow or buy) and to sign up to a service that allows you to watch films and TV programmes online. 

Immediately after the surgery:

Don't leave the hospital without written instructions on what medications you need to take, the dose and the frequency. If it is a short course of medication, make sure you know when to stop taking it. Get written instructions about who to contact if there is a problem (including out-of-hours) and what consistitutes a problem. Ask your doctors, nurses and therapists to be as specific as possible. 'Get in touch if things get worse' is a really common instruction, but can leave you with a dilemma if things do get worse. How worse does worse need to be in order to contact a doctor by telephone at midnight? You may have several instructions - if you have a fever, or very fast heart rate, you may need to go back to the hospital, but you may be able to deal with other problems during normal clinic hours or with a visit to your own GP. If possible, let the professionals make these decisions for you!

Take your medication as prescribed. Painkillers work much better to prevent pain than to stop it once it's got a hold on you (apologies, this is a particular soap-box issue for me!). If you're worried about waking up every six hours to take painkillers, you can ask for a long-acting preparation that only needs to be taken every 12 hours. Set a timer to help you remember to take your medications. Adding new meds can always be confusing, especially if you're exhausted from the surgery and spaced out on medications!

Ask for help. Friends and family often say (and mean), "let me know if there's anything I can do" and we don't let them know because we don't like to impose. Make a list of the things that you find difficult after the surgery and show it to friends and family if they express a desire to help. People are often happy to pick up a few extras while they're at the supermarket, and other parents at the school will often not mind collecting your children along with their own. The more people you can find to help, the less you need to ask any one person to do. If you can't cope with the idea of asking your friends to come in and help with housework, now is a good time to pay for a cleaner. It's cheaper than a course of physiotherapy, or having to have your wound restitched because you put too much strain on it too early.

Make sure that the house is warm enough/cool enough. Even if you just heat/cool one room, it's important to be comfortable. Trust me, shivering with a fresh four-inch abdominal wound is uncomfortable.

Rest, recuperate and DO NOT FEEL GUILTY. Now is not the time. If you need to stay in bed all day, do it. If you can only concentrate on trashy fashion magazines, go for it. Don't push yourself to get straight back to all your usual activities and responsibilities. Sometimes we all need time and space to recover, and no-one will begrudge you a few days in your pyjamas, snuggled up with the cat, especially if you've just had surgery. Don't plan too many activities - this is not a free holiday from work (at least not in the first few days!) but give yourself time to rest.

In the longer term after surgery:

Do the things that will help you to maintain your health. There is no point in having surgery in the first place if you then do all the things that your surgeon asks you not to do. You've put yourself through the pain and difficulty of surgery, so you are certainly strong enough to stick to a medication or exercise schedule, prescribed diet, or rehab plan. I understand the temptation to 'just' play the piano a little bit (immediately after wrist surgery) or to 'just' take off the splint for a little while.

Follow up with your surgeons and any other specialists that are involved in your care. If your wound is not healing properly, for example, it's better to get specialist input earlier rather than later. If your surgeon has suggested that you shouldn't need to take painkillers after five days, and you are still clock-watching for the next dose after a week, a quick call to your surgeon's office could save you a lot of pain.

I've written previously about pacing yourself and setting goals, and those skills are likely to be relevant during your recovery period. Don't beat yourself up if things don't go completely to plan. No-one will blame you if you get an infection, have problems with wound healing, or the surgery is just not a success. Keep dialogue open with your doctors, nurses and therapists, and don't be afraid to ask if you think that you would benefit from counselling, physiotherapy or any other specialist input.

If you feel that you would benefit from complementary therapy, or input from another therapist or medical specialist, don't be afraid to ask. Many doctors and surgeons are open to input from complementary therapists, but do check with them first - they may be able to offer some services at the same hospital or clinic, or they may recommend some therapies as being more suitable than others. 

Remember that your individual surgery may not be a big deal in a surgeon's life. What has a place in his life for a couple of hours on one day, along with several other operations on other people, can be life changing for you. Some surgeons are very good at understanding how much their patients can be impacted by surgery; others not so much. Don't take it personally, but seek support from other sources if your surgeon is not a 'people person'. If he or she is good at the job, and does a beautiful job of the operation, that's enough. There are plenty of other people, professional and otherwise, who can support you emotionally and with the physical consequences of the surgery.

Stay positive!

Killing Season (Patient Survival Guide)

August is often jokily known as Killing Season.

Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.

I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.

Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!

Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.

Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.

It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.

So, a few tips for people like me on surviving the Killing Season:


1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor

2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell

3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain

4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months

Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.

Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.

Good luck!

Courage

A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).

This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.

My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.

Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.

Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?

Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.

Acute and Chronic

After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.

Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.

With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.

Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.

Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.

My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.

I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?

I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?

My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.

I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.

I picture myself on arrival at the hospital:

Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?

That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.

I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.

Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?

Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.

Taxi!

Being a Helpful Patient

There is certain information that your doctors will always need to know. This can be as simple as your name and address and your PCP's details to more detailed information about your past medical history and the medications that you take.

I have a big medical folder of my own records (known as The Big Red Folder). This is split into sections for letters from specialists, test results, relevant publications and articles, diet sheets, exercise sheets from physio, and all sorts of other useful things. Most of the time this folder lives at home with me. It contains the charts that I showed you last week that I use to keep track of my symptoms and the medications that I take.

I am so grateful that I started compiling my medical paperwork in this way, and have learned lessons from other people with complex medical conditions. One of these lessons is to take time every 6-12 months to write to my doctors and request copies of important test results. It can be so helpful to have an MRI report and the scan itself on CD to show a new doctor, rather than having to take my word for what it showed, or waste time for them to request the results from another specialist. I have so many doctors and other health professionals working with me that it can be really hard to keep track of all the tests and all the results. I am the only person who knows about every test and every appointment, so I feel a sense of responsibility to keep good records.

Right at the front of my Big Red Folder is a section of essential information. This is an 'executive summary' that covers all the most important points in my medical history. I have been asked so often by doctors in the ER if they can borrow/photocopy this executive summary that I now carry spare copies in the folder.

So where to start? Well, think back to the last time you were in the ER. You may remember being asked the same questions over and over by the different people that looked after you. There are certain things that your doctors will always need to know.

My executive summary looks like this:

Page 1:

1. My name, address and date of birth
2. Next of kin details (name and contact number)
3. Details of my GP (name, address, telephone)
4. My height and weight (important for some drug calculations)
5. A list of my most important diagnoses - no details, just the name of the diagnosis

Page 2:

Important contact details:

Name, address and contact details for all the specialists that care for me, including my hospital number (patient reference number) for each hospital/clinic. This list includes bleep numbers and email addresses where relevant. For example, it has the bleep number of the Specialist Registrar on-call for asthma at the Royal Brompton Hospital, which is the specialist lung hospital where I'm treated. If I'm admitted to any other hospital, it can be helpful for them to get in touch with one of my specialists as a matter of urgency.


Page 3:

1. List of current medications and allergies

The allergies are in a highlighted box at the top of the page. On the other side of the page is a list of medications that are contraindicated for people with my conditions. Because I have rare and complex conditions, I would rather tell people the basics again and again than risk them make a mistake with my health because they didn't know.

The rest of the page is taken up with a list of my regular and 'as required' medications. For each medication I have given the generic name (unless it's important for absorption or allergy reasons that I take a particular brand), the dose, the route, the frequency and the reason that I take it.

Make sure to include any medications that you buy over the counter, supplements that you take, and your method of contraception, if appropriate.


Page 4:

Past Medical History:

Just a list of dates and important events. For the sake of brevity, I don't include all hospital admissions, just the things that seem most relevant to me - childhood illnesses, major diagnoses, surgeries.

Page 5:

Family History:

Try to restrict this to immediate family (siblings, parents, grandparents) unless there is an inherited condition that can be seen more clearly by including more family members. Even if you don't have inherited diseases in your family, it's worth noting the causes of death of close family members and the incidence of things like diabetes, cancer and heart/lung disease.

Social History:

This is just a bit about you: 

- Do you smoke (how much and for how many years)?

- Do you drink (what, how much, how often)?

- Do you take any illegal drugs? If so, what and how often?

- Do you live in a house/flat/castle? Are there stairs?

- Do you have pets/children/other dependents?

- Who looks after your care needs if you have any?

- Do you work? What do you do, how many hours do you work?

- Are you right or left handed?

That's about it for my executive summary. Of course, it's not rocket science, but it's amazing how things get forgotten in the heat of the moment. Having a printed, legible list to give to anyone treating you can relieve a lot of the pressure of acute illness (for you and your loved ones) and allow you to focus on getting the treatment you need to get better.

More on The Big Red Folder tomorrow!

That Fine Line

Those of us with chronic illnesses live with symptoms day in and day out. The severity of those symptoms may vary, and some of them may go away from time to time, but we never feel 'well' in the way that we would like.

In order to manage these daily symptoms, many of us have medications and treatments available to us that would usually require hospital admission: home oxygen, intravenous medications, nebulisers, strong medications. These are not cures, just ways of maintaining the status quo and allow us to stay at home with a reasonable quality of life.

Difficulties arise, however, when things deteriorate despite all the medications that we have in our 'chronic illness toolkit'.

How far should we allow things to deteriorate before we 'give in' and accept that we need extra help and support? How long do we wait for the 'rescue' medications that we have to kick in? It may be that the deterioration is gradual, and insidious, and it can seem hard to know the point in the downward trend at which we should seek advice. Worse still, we can get so caught up in just dealing with each moment as it comes that we stop looking at the bigger picture and asking how we are going to improve things.

These are difficult questions for anyone reluctant to 'bother' their doctor (or other health professional), but even more so for people with chronic illnesses. Often, our illnesses are rare, and may be complex. While the necessary treatment may be simple, getting it may be another matter.

Flare-ups often seem to happen at night or at the weekend, especially if it is a holiday weekend. This poses yet another question of whether we try to wait until we can get in touch with our own specialists, or whether we need help sooner than that. I feel as though I am treading a fine line whenever I am in the position of needing to make this decision.

Emergency Departments are not really set up to treat those of us with complex medical conditions. They are very good at what they do, which is to treat accidents and acute illness. It is unfair to expect them to be able to handle rare medical conditions.

Of course, the ideal is to be able to contact one's own specialist for advice and treatment. They are far better placed to be able to tweak routine treatment and instigate new therapies than any healthcare professional meeting you for the first time.

But what happens when you really can't get in touch with your own doctors?

Alternative communication methods:
Telephone and email can be excellent ways to get in touch with your doctors. Email, in particular, allows you to give all the relevant details, taking time to write carefully and accurately, without the panic of an emergency conversation. It also allows you and your doctor to have a written record of the enquiry and any advice given.

Having a written protocol in place for emergencies:
If your illness is of the type that might require emergency treatment, you could ask your doctor or nurse specialist to write a protocol for you to take to the Emergency Department with you. For example, if you are known to have a certain type of seizure that responds well to particular medications, this could all be put in writing, with a copy given to your local ED and another copy for you to carry around with you. In the UK, it's possible for patients to be 'flagged' with the local ambulance service, so that any paramedics called out are prepared with relevant information. MedicAlert tags and cards (and equivalent) also provide valuable information if you're not able to give details to those treating you.

Be prepared:
If you can, try to predict things that might go wrong. It's not unrealistic to think that someone with gastroparesis might have a bad flare in which they can't eat or drink, and so need IV hydration and anti-sickness medications (and possibly also gastric decompression and artificial nutrition).

The more difficult cases arise when those unpredictable flare-ups occur. Either unrelated illnesses that worsen the underlying condition, or new symptoms.

In this case, it is important to act as sensibly as possible. Get advice, either from your own healthcare providers or from someone who knows you well, rather than from an overworked out-of-hours or emergency physician, in the first instance.

If the answer is that you need medical intervention (or at least assessment), the next question is when? Can you wait until you are able to see your own doctor? Is there anything more that you can do at home to keep things as stable as possible while you wait?

If the answer to 'when?' is 'now', then you have to ask 'where?' -
1. Out of hours GP service
2. Walk-in (or minor injuries) unit
3. Emergency Department (perhaps by ambulance, if necessary)

So, what are you waiting for:
Do you need help?
When do you need help?
Where are you going to get this help?

And with that, I am going to take another dose of my rescue medications now in the hope that I can delay needing help from my own doctor until tomorrow, when she is next in clinic.

Wish me luck!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Blaming Myself

Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.

I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.

This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.

I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.

Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.

While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.

The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.

I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J