DVT Pain Management

Managing Post Thrombotic Pain

After having an extensive blood clot in the left side of my lower body (belly button to ankle) I have had a range of post thrombotic pain to deal with on a fairly regular basis. However, I recently had a pretty bad bought of pain that last for about four days that left me fairly immobilized, bed bound and full of pain killers. Now that I've somewhat recovered from the worst of it I'd like to share my experiences of what it's like to deal with this condition and what I do, and what you can do to help you get past the worst of a flare up.

What Causes Post Thrombotic Pain?

Post thrombotic pain is experienced by most people usually after a moderate - severe blood clot (although this can happen with mild clots too). When a blood clot develops in the vein or artery is has the potential to damage the wall and valve which will interrupt the flow of blood around the body and cause a whole host of nasty symptoms you'll have to contend with. The first flare up of post thrombotic pain can be experienced straight away if the clot did a lot of damage or it can develop over a couple of years as the initial damage worsens. 

As it turns out around 50% of people (average of multiple sources) will develop some form of post thrombotic pain within the first two years of having the clot. Unfortunately for those of us who suffer from post thrombotic pain it's not going to leave us, however there are things you can do to prevent a flare up or at least manage the pain to tolerable levels when it does.

Managing Chronic Post Thrombotic Pain

Support Systems:

The first thing you need to do to manage your daily pain is to find yourself a doctor who understands your condition well, or is willing enough to go through trial and error with you if you don't have the option to see a pain specialist. As my blood clot was not diagnosed on time it has done a lot of damage and I don't have private health care to see a pain clinic (my condition currently isn't bad enough to warrant NHS referral yet) my doctor and I have taken the time to work out a plan and we review it every six months to check tolerance levels (I got a little addicted to morphine during my hospital stay and we have to keep any eye on things) and things like liver function etc. So, in short if your current doctor isn't willing to help then keep searching for one until you find someone to support you.

Once you have found a doctor who will work with you then you'll need to have an assessment to see what you will actually require to be comfortable. You would of had an assessment when you were discharged from your initial blood clot and more than likely prescribed compression stockings (above/below knee or "gauntlets" for your arms) and pain killers if needed. However, this set-up will only last you for a few weeks at best and you'll need to come up with a longer term plan to manage those daily symptoms.

Chronic Symptoms

In my experience the symptoms that you experience on a daily basis can vary but for me the one constant symptom is a throbbing pain in my thigh and calf. The other symptoms (see below) will come and go and will tend to all build up shortly before a flare up.

Symptoms for chronic/daily life include:

• Pain: stabbing, throbbing, aching, pinching, "squeezing" sensations
• Cramping: mainly at night for myself but they can happen at any time
• Pressure and swelling: this tends to be worse at the end of the day but can happen at any time
• Itchy skin, discoloration and other skin conditions: due to restricted blood flow you will experience this sooner or later
• Ulcers: an advanced situation of the prior skin conditions and they can take a long time to heal and need careful medical attention

Acute Pain/Flare Ups

Flare ups of post thrombotic pain can happen at anytime but there will sometimes be a reason for this. For example you may have pushed yourself too hard when exercising, injured yourself, or had a change in medication. Examples like these are easy to spot and are easier to manage because you know what the cause is and you can manage the symptoms accordingly. However, flare ups that come out of the blue and much harder to manage and you may feel like your "flying blind" as the saying goes; unexpected flare ups, especially particularly bad ones, should be looked at by a doctor just in case you have developed a new clot that needs immediate treatment.

Many of the symptoms you'll experience during a flare up will be the same as your chronic ones but they will be stronger and more painful. However, you can experience any of the above symptoms even if you don't usually get them which is why it's important to get yourself checked if you get something out of the ordinary.

Medications and Tools/Tips

Once your doctor has done their examination they'll talk to you about what your options are but for the most part you'll be looking after yourself and getting into a "groove" with your medication can make your life so much better and easier to deal with. Depending on your situation you'll more than likely need some pain killers, compression stockings and ways of managing pain when they don't work: see below.

There are many pain killers available to you and your doctor will start you off (probably) on the minimum dose of a recommended type and then review you in a week or two to see if you need adjustments made or if another medication needs to be introduced. For example my current regime is to be on a controlled long-release opiate based pain killer which I take first thing in the morning along with my other cocktail of drugs for various other aliments and that lasts me for most of the day but if I'm having a bad day I will take a quick release pain killer to tide me over until my next dose in the evening. When it gets to 6pm I will have my Warfarin (anticoagulant) and then take an antidepressant at 7pm which actually helps with my nighttime pain and helps me sleep better too; the antidepressant was an experiment suggested by my doctor as a new study had come out suggesting the interaction with certain pain and the antidepressant will help some patients and I'm glad to say that I am one of those and I have been able to reduce my opiate intake.

Compression stockings are my best friend when it comes to relieving discomfort and pain on a daily basis. I have to wear above the knee compression stockings that go all the way up to the top of my thigh. The reason I love compression stockings is because they do the work for my broken vein valves by helping my body get the blood out of my leg and back to my heart and reduces the swelling too. I know compression stockings aren't the best looking garments but believe me when you are in pain and need some immediate relief you'll be hobbling to those stockings asap! If you don't like the standard ones that your doctor can provide then ask for your compression grade and measurements and check out a local medical store or pharmacy as they can usually make them to order in a variety of designs and tones. 

If pain killers and compression stockings aren't doing the whole job for you then I would recommend you try the following:

• Elevation: let gravity do the work for you and sit/sleep with your leg raised
• Massage: I tend to massage around my ankle and calf as that's where I get the most pain but massaging anywhere that's hurting can help to improve the circulation and reduce any swelling you may have
• Walking: going on a short walk can again help get the blood moving around
• Distraction: when all of the above aren't helping then try the good old distraction method which is as simple as it sounds. Go call a friend, watch a movie, craft (I knit), cook, read a book, basically do anything as long as you are not focused on your pain. 

So these are all of the things that I do or have done over the last five years to help manage my post thrombotic pain. Thankfully I'm fortunate enough that these options work most of the time for me, however if you're still struggling with your pain then go see your doctor and review your options.

If I have missed out anything or you have any other tips you use then please let me know in the comments and I'll add them into the article here. 

Sources

• Stop The Clot
• NCBI
• Netdoctor

What Is The Difference Between Heterozygous And Homozygous?

DNA Strands

Factor V Leiden Genetic Mutations

Genetic mutations take on multiple forms and in this case we're looking at the types of Factor V Leiden and what the differences between Heterozygous and Homozygous actually mean for someone with the mutation.

What Is Factor V Leiden

Factor V Leiden is a genetic mutation in one of the proteins that forms clots. In a person with a normal Factor V protein the "off switch" call Activated Protein C tells the protein to stop working which prevents the clot from getting bigger. However, with someone with Factor V Leiden (the abnormal version) the Activated Protein C "switch" cannot communicate with the protein to switch it off which can cause clots to get bigger and then break off causing a Deep Vein Thrombosis (DVT) or Pulmonary Embolisms (PE). 

How Do You Inherit Factor V Leiden

Every one inherits two copies of the Factor V gene; one from your mother and the other from your father. You will only inherit the abnormal version of the gene if at least one of your parents also has this gene, otherwise you will get the normal Factor V structure.

Inheriting a faulty gene is a fairly common event (for a genetic mutation) and for most people they will not experience any problems throughout the majority of their life. As you become older, as with nearly every other condition or disease, you will have a greater risk of getting a blood clot and will need treatment.

The highest concentration of people with a Factor V defect are in Europe with approximately 10-15% of the population being effected. In a study published in the paper "Genetics in Medicine" the prevalence of American people discovered to have a mutation was indicative of a worldwide population spread:

• 5.2% of white Americans
• 2.2% of Hispanic Americans
• 1.2% of African Americans
• 0.45% of Asian Americans
• 1.25% of native Americans

As you can see by the figures there is a very small chance of you inheriting the mutation.

Are You Heterozygous Or Homozygous?

There are only three versions of the Factor V gene that you can inherit:

• Normal: both copies of the gene function as they should
• Heterozygous: one copy of the gene is normal and one has the mutation
• Homozygous: both copies of the gene have the mutation

Heterozygous Risks

If you are diagnosed as having one copy of the mutated gene then are at a higher risk for a blood clot but you can change your lifestyle to lower the chances of getting a blood clot. Taking action with weight management, quit smoking, and staying active are good examples of improving your lifestyle.

If you are unfortunate to suffer a blood clot the you will need to go on to a blood thinner such as Warfarin or other anti-coagulant; this may be for life or for a shorter duration but your doctor will let you know.

Homozygous Risks

The possibility of getting to mutated genes is approximately 1% of the Heterozygous chance; if you are Caucasian and have a 5% chance of getting a faulty gene then you will have a 1% of 5% chance (fewer than 1 in 100 people) of getting both faulty genes.

As with Heterozygous genes you will only need treatment if you have experienced a clot and you are healthy in all other areas. If you are at risk with other factors then your doctor may put you on blood thinners as a preemptive measure.

Keeping Up With Housework

A messy house is one of the things that most people will struggle with at some point in their life but how do you cope when you have pain to manage, have mobility challenges or another impairment which means you live life differently? As I'm sure you'll understand, or even experienced, you're going to come across some difficulties and you may not have found the best routine for keeping your house tidy.

After a full day of work, looking after children, and generally living life the average person does not want to come home to a messy house and have that to contend with before then can begin to unwind and relax. I was experiencing this exact problem until I started implementing some guidelines to start clearing up my home. Finding out which methods worked best for me has been a journey in itself and I have tried quite a few methods, some worked and others didn't. I'll be running through which ones have worked for me and also some other great examples which have worked for others but don't actually apply to me. 

Getting Rid Of Clutter

My biggest problem that I encountered when I first started (and still working on) was clutter. How can you clean your work surfaces when you have a stack of paperwork or clothing on top of it? My first job was to start clearing through each area of my home and deciding what I actually needed or wanted and what was just junk or no longer served a purpose.

Regardless of which method I was using I had to break each session up into smaller amounts. I am able to comfortably work in 15 minute slots and then have a break or switch to an easier task. The best way I found to sort through the clutter was to bring everything out of the area of container I was working on and put it on the kitchen table and then begin to sort. If I was not able to bring it to the table then I would use a portable chair or make myself comfortable with pillows on the floor.

You will find that your home has various different levels to contend with, even if you're in an apartment you'll still have high cupboards to work through and then places like under the sink. I have found it easier to work through my tasks on the same level as much as possible, so whether that's getting rid of excess products under the sink and then cleaning the area, or chucking out old Tupperware boxes on top of my kitchen cabinet, sticking to those similar areas limits fatigue and gives you more focus on getting the tasks completed.

The Separation Method

There are many ways of sorting through your house and it will really depend on what you are capable of either on the day or in general. As mentioned above working through sections of your house in smaller areas, it doesn't matter if you only get through that junk draw in the kitchen and don't do anything else, you're still ahead of where you were yesterday.

I found that separating your items into three categories to be the easiest way of dealing with that clutter:

• Keeping and needs a home
• Charity
• Throw away

A Home For Everything

After you have separated all of the items that you are keeping and have removed the items that you are donating, recycling, or throwing out you'll want to implement the golden rule of There's A Home For Everything And Everything Has A Home. This singular rule will allow you to get into the mindset of putting things away once you have used them. An item in your home will be in one of two states at any time:

1. Being used
2. In its home

If you fail to follow this golden rule then you'll soon find that you are having to pick up more around the house and eventually you are going to get overwhelmed again and start the whole process again. If you're tidying up for more than just yourself (family, housemates, pets, etc.) then you'll want to get everyone to follow this rule. This is one of the key points in being able to keep on top of things so that when you have a bad day and can't do your daily routine then others can pick up your share and they wont really notice as it'll already be a habit.

Charity Donations

While you're sorting through your home you should either have one designated bin or container for charity items somewhere in your home (at the back door, laundry room, spare bedroom to name a few places), or have a container in rooms which need the most help. Having multiple containers is my preferred method as it means I don't have to remember to take it out to the sole charity container. I do a sweep of the containers once a month and either leave it out on the curb if we get notification of a charity collection coming by or I drop it down to our local charity bins or shop (if the need the items).

The biggest problem I have come across when deciding if an item will go to charity is the "What If?" that pops into my head each time. Well, to start with if you're thinking of donating the item anyway then it's likely that the item has already served its purpose or you're not going to need it. I have two ways of dealing with the "What If?" moments:

• Stick it in the charity container anyway and if I find I need the item within the month then it's likely I'll be keeping it and I'll get transferred over into the Keep It category and I'll need to find a home for it.
• Use the KonMari method: there is a lot to discover by using this method but the number one thing I have taken away from this is to ask "Does this item spark joy?". If you are ever in doubt then ask yourself this question, if it's a resounding yes then the item moves to the Keep It category otherwise it will go to the donation bin or get thrown out.

Throw It Away (Including Recycling)

This is probably the easy category to work with as the items you will be throwing out will more than likely be broken and beyond repair. Now, when I say throw it out that also including recycling so please don't just through everything in the trash as that will do no one any good. If you're not sure what your local recycling facilities can accept then you can either check your local council's website or give them a ring and they'll provide you with a list of collection services or self-serve facilities you can take your unwanted items too. It will also be worth checking in with your local charity shops too as many of them will accepts broken items to up-cycle into other things or to use as parts.

Identifying Heavy Traffic Areas

During your time of decluttering you'll also begin to notice where the heavy traffic areas are. For example, I have an open plan kitchen and living room area and that is our "dumping ground" for when we walk in the door and put our things down. There's also places like the front and back doors and bathroom that see a lot of traffic and items being placed "for just a moment, I'll come back for it" and you may be surprised that things will be forgotten and left there until the next frantic search for them. This is where the Home For Everything method comes into place so that you're not always searching for your keys or glasses whenever you're trying to leave your home.

Using Tools For Managing Daily Items

Once you've identified problem areas then you'll want to start by finding homes for everything and start the habit of putting them in the right place. If you already have solutions in place then you'll need to create a reminder for putting them in their home, for example a quick note by the front door as a reminder to put your keys away. After a couple of weeks has passed and you're still not putting items in their designated homes then you should reassess your existing solution and try something else until you get something that works for you and your family.

Storage Solutions

Here are some ideas to work with for sort and storing your daily items:

• A hook for your keys and bag
• A deposit bowl or container for keys, glasses and wallets
• A shoe rack (I hate having shoes laid out everywhere)
• A coat rack or hook
• An in/out tray for mail
• A Designated shelf or slot for laptops and tablets
• A weekly tablet container so you don't have a ton of prescriptions everywhere
• Set of drawers for frequently needed items

For those who haven't quite got the hang of everything having a home you can try using designated small storage box with their name on so that when it is full they can put these things away. I find that it works for small children who are still learning about looking after their things and also for people who just forget that certain things have a place - this way you're not having to run around picking up after them 24/7.

Prioritizing Housework

So now that you have been decluttering you'll have found that you actually have things that you can clean now and they need attending too. By this stage you will already have a good idea of what chores need doing and how often. No matter what size your home is if you're not feeling well then even the smallest task can seem daunting, so why not make things simple and break them up into manageable chunks that you can complete.

When it comes to breaking down the chores you'll need to have a hard think about how often you can reasonably do each task. It's no good saying that you're going to vacuum each and everyday but don't do it because it hurts your back to much as you're just going to become stressed out and then worry that you're falling behind. Set yourself realistic goals that you can complete within a 15 - 20 minute slot so you can then rest and have a break or switch to a different task.

Daily Chores

This will be chores that need to be done everyday, or as near as everyday for them to remain manageable. For example, in my home we definitely need to do the dishes everyday as we don't have a dish washer and they will quickly become overwhelming if we don't stay on top it the washing up. My rota for daily cleaning is as follows:

• Dishes washed and put away
• Laundry washed and dried (non-ironed clothes)
• Empty the bins
• Make the bed
• Open windows and air each room
• Constantly pick up items as I go about my day and put them in their rightful homes
• Meals (cooking and preparing)

Now I certainly don't get to do all of these chores every single day but I do plan and make time for them in my schedule if they need doing.

Weekly Chores

Weekly tasks are things that you don't have to do everyday but really can wait for once a week. These chores are going to vary quite a lot from home to home as they will entirely depend on foot traffic, pets, guests, number of family members and so on. You will have to be the better judge of your own personal schedule but I shall provide you with my rota so you can get the idea:

• Change the bedding (maybe every five days or more frequently in hot weather)
• Scrub the bath, bathroom sink and shower glass cover
• Big vacuuming session (done on an ad hoc basis in smaller chunks throughout the week)
• Spot clean windows and mirrors
• Spot clean inside of fridge
• Clean inside of garbage bin
• Sort and remove recycling
• Clean the oven
• Dust
• Mop floors
• Ironing

Bigger Chores

These are often classified as seasonal work and you may only get to these once or twice a year depending on the task in hand. I also put monthly chores in this section too:

• Give the fridge a good clean
• Clear out donation bins and give to charity
• Clean windows thoroughly inside and out
• Touch up any old paint jobs
• Scrub outside decking
• Flip mattress (every 6-8 weeks)

Dividing Up The Work

So now that you have a good solid foundation for how your home runs and what you can expect to happen to keep it in tip top shape, you can't be expected to do all of this yourself if you have a partner or family to be looking after as well. Everyone who is under the same roof should all take pride in keeping the house in good working order so that they can appreciate having a lovely place to come back to at the end of a long day. But how do you divide up all the chores and tasks that need to be done on a regular basis?

There are plenty of ways that you can accomplish this but one of my favorite methods is simple sit everyone down at the kitchen table and lay out the chores in front of them. Once everybody has had a chance to look at all the tasks available to them they can then offer up their services to chores that best suit their ability to complete. For example, my other half takes care of the daily bathroom chores and washing up while I take care of the laundry and meals. Everything else for us is done on an ad hoc basis when we spot that a chore needs to be done. Our free-form way of doing things doesn't suit everybody and I know plenty of households who have a rota set up for when chores need to be completed by and this works for them. 

What if you're not able to do an equal share? Fear not! Don't be afraid to state your position and reasoning for not doing your perceived share, if you are living with decent human beings who are understanding and compassionate about your health and current abilities then you will be able to work something out. It may not be a fair share of the work load but you will be contributing to the well-being of everyone in the household but you will be doing as much as you reasonably can and that's OK.

One final thought about dividing up the workload: if it's within your budget to do so then I would recommend getting a professional cleaner in on a schedule that works for you. Having someone come in once a week or even once a month to help complete those bigger tasks can be a huge weight off your mind as you know those chores will get done and you don't need to rely on another member of the household remembering to get it done.

Brain Tumor Research

This is a charity shout-out to get some support for Brain Tumor Research. Get ready for Friday 31st March 2017 and dig out your best looking hats for Wear A Hat Day and raise awareness for this much needed medical research.  

Brain Tumor Research is drastically underfunded compared to other forms of Cancer Research and only receives approximately 1% of government funding. The scientists and researches working with this disease are in desperate need of more funding to help them end the threat to our health - just like the good folks working on breast cancer leukemia and other forms of cancer.

Symptoms of a Brain Tumor:

As with many cancers brain tumors have multiple symptoms, especially as they can affect you in different ways depending on where in the brain the tumor is developing.

Common Symptoms:

• Headaches, Vomiting and Nausea: as the tumor grows it will increase the pressure inside of the skull (also called intracranial pressure) causing these symptoms get worse/more frequent in time
• Visual Disturbances, Confusion and Fits: these symptoms are also triggered by increased intracranial pressure and will continue to get worse as the tumor grows
• Loss of balance or co-ordination
• Numbness or weakness in one or both sides of the body
• Personality changes: these range from irritability to a complete overhaul in day-to-day emotions, i.e becoming introvert when you were previously out-going, changes in senses, i.e. tastes changing, sensitive skins, stomach upsets, audio problems.

There are also a number of more complex symptoms that may manifest when the tumor is developing in a specific area of the brain, please see Further Symptoms Of A Brain Tumor for more information.

Please do not be alarmed if you experience these symptoms as they are all related to other common illness and ailments. The symptoms described above will be persistent and your doctor will need to rule out any other illnesses, however if you suspect something is wrong the ask for a referral to get it checked out. As with many diseases early treatment is preferable.  

How Can I Support Brain Tumor Research

As with any charity or research awareness and funding are key to developing treatments, support, and in the near future hopefully a cure. Any support that you can give is appreciated by those who need it most. So what is it you can do to help?

• Register for a Wear A Hat Day fundraising pack and get your colleagues, school or community involved
• Donate: there are many ways that you can donate on their website
• Attend one of the many events that happens throughout the year
• Become an activist and help support the campaigning process
• Check out the Fundraising page and see if you want to participate in any of the events
• Spread the word about Brain Tumor Research as many people will be able to at least raise awareness 

#HATTASTIC

More  Information

• Wear A Hat Day
• Further Symptoms Of A Brain Tumor

Car Insurance Premiums and Disability

My car insurance was up for renewal this month and low and behold my premiums had gone up yet again so I did some shopping around on a couple of comparison websites to try and find a better deal. After a lot of searching and calling up various insurance companies I made the decision to stay with my current provider and accept that my premiums have gone up.

Why Did My Car Insurance Premiums Go Up? 

Well, if you're a previous visitor to my blog then you'll know that I have an on-going Deep Vein Thrombosis that lives in my left leg and I'm at a greater risk of clotting due to Heterozygous Factor V Leiden (see below for more information). Now, having spoken to multiple insurance companies it turns out that due to my age, existing medical conditions, and adapted automatic drive vehicle (plus a few other factors) the insurance company needs to make sure that they are going to recover their costs should I be involved in an accident - this seems a fair point.

As it turns out my premiums have increased by approximately 14% (around £5) per month and a good chunk of that was to do with inflation anyway, and I can easily manage that which is why I have avoided any extra hassle by staying with my existing provider. Before I accepted any changes to my policy I did check on the following points:

What Should I Check For If My Premium Has Increased?

1. One of the first things you should do is to check your policy documents and see if you are required to inform your provider of any changes to your medical status. Assuming you do then they will tell you if your current situation may increase your premiums.
2. Make an appointment with your GP or family doctor and assess whether or not your medical needs will have any impact on your driving. If they do then you'll work with your doctor and insurance company to reach an agreement. If your medical needs do not impact your ability to drive then your doctor can issue a letter to your insurance company(s) confirming that you are fit to drive.
3. Have a second conversation with your preferred insurance company and advise them that your medical needs have been assessed. Assuming that you are fit to drive your car insurance premium cannot be increased on this aspect alone and you should be treated like any other driver, however if your vehicle has been specially adapted then you may have an increased premium based on the vehicle, not yourself.

If your insurance company tells you otherwise my recommendation is to seek the advice from your lawyer or use any of the services offered by the Citizens Advice Bureau or local disability charities.

Final Tips

DO make sure you do have a good shop around and don't be afraid to ring up companies and discuss your individual needs with them. Most places are more than happy to do this as you are a potential customer bringing in revenue.

DON'T be fooled by an insurance company specifically catering to disabled drivers as you'll often find that their insurance premiums are higher anyway. If you feel one of these companies can provide you with a competitive service make sure you double check your policy details before purchasing so that you definitely don't get caught out. 

More Information

• What is Heterozygous Factor V Leiden?

World Cancer Day

As February is rapidly approaching I just wanted to spend a moment to spread the word about World Cancer Day which is happening on the 4th February 2017. In the last few years I have lost a handful of family and friends to cancer. Through the support of the amazing people at Marie Curie and the Cancer Research team the blow of having cancer was softened. However, there's never enough time to spend with someone when the diagnosis is terminal which is why Cancer Research needs all the help they can get.

I appreciate that given the current economy you may not be able to afford monetary donations but please remember that they are always happy to accept goods at their local shops (each donated bag is usually worth £25) and there are plenty of free fundraisers and other volunteer options available to you.

Please take some time to check out the Support Us area of their website to see how you can help, or simply spread the word.