All Things Medical

We had a hectic weekend taking Rose and her friend Emma and one very loaded up car back to Bournemouth after their reading week at home. It was great to have Rose back and spend lots of time with her.

Lymington Marina

Always eager to explore a new place or two, on the way back we decided to travel through the New Forest. It was perishing cold all weekend, but we drove along the coast and managed to visit Lymington, which is a picturesque and busy sailing town and ferry port. It has a pretty cobbled street, which leads to the marina and a busy high street with Victorian and Georgian buildings some interesting shops, market and cafes. The good thing about visiting at this time of year is that parking is easy and everything is quieter, so everything feels much more manageable than it is when you have to push your way through crowds and hoards of holiday makers.

Coastal drive

Lyndhurst

We then drove through the New Forest, a scenic drive where there is lots of heathland, woodland and wild ponies and visited Lyndhurst, which is known as the capital of the New Forest being a travelling route between the South Coast and Southampton. This is also an historical market town with a narrow high street, Victorian and Edwardian architecture and plenty of shops and cafes. It also has an interesting museum and a church dating from 1860, which are both worth a look.  

Lymington

Exploring new places always helps to keep us busy and take our minds of transplant and the endless waiting. I bought a guide to the New Forest and East Dorset as we will be coming and going to and from this area quite a lot over the next year or two while Rose is at university and I intend to do a lot of exploring and sightseeing!

www.thenewforest.co.uk/

Walled garden, Chewton Glen  

After that busy weekend, it was back to all things medical - there is never much escape, it's like managing a full time job-  it all started with a visit to the warfarin clinic on Tuesday. This time I had hoped to be stable like I have been for the last few weeks and was hoping to get a months reprieve from the clinic, but no such luck, my INR blood test was a little on the high side this week, so I have to go back in two weeks time.

On Wednesday Papworth phoned and gave me a date in March for going back in hospital, I seem to be on the phone to them every few days at the moment with one thing or another and between the the two teams.

I also had to spend a bit of time chasing up the Lister Hospital about the scan I need for my ear, so far they have ignored and failed to respond to the two letters Papworth Hospital have sent them and my first phone call chasing them up. In the end I found out they were simply just ignoring them until I had had my next appointment with the consultant. Now I had specifically been told to cancel this, as I couldn't get my scan in time for it and had rearranged it for April so they could manage to sort the scan out before I went back. So you can imagine my frustration. They have now agreed to do a CT scan instead, which I'm very relieved and pleased about and they have promised it will be done before I am admitted back into Papworth in March. So fingers crossed that that will be sorted out very soon.

Wednesday was also the day I decided that once and for all I need to try and sort out the mess that eczema is causing all over my arms, legs, hands, ears and back, there is not much of me left that is normal nowadays! After talking at length with my PH consultant last week, it was decided that the Epoprostenol is not the cause, but the flushing it causes is really exacerbating it and the diuretics I need are adding to the problem of drying my skin. My many allergies to one thing or another are probably what triggered it, but the drugs I have to have are preventing me getting rid of it so easily and now it is becoming unbearably itchy and sore. So I've another appointment at the doctors to make and in the meantime I'm going to have to spend time religiously creaming my arms, legs and back every day at least three times a day, to try and help things and keep it at bay, just adding to the long list of medical requirements and routines of each day. I don't think I will be able to do much about this problem, as I cannot come off any of these drugs until I get my transplant, so I hope I can just keep it at bay.  

The spare yellow sharp bins make good storage boxes!

Typical months delivery

Thursday saw what we now call 'the drug run' in our house, when I have a months supply of drugs and equipment delivered to make up and maintain my intravenous drug Epoprostrenol. Obviously someone needs to be in the house when it is delivered and there are always quite a few box loads of the stuff and we have had to find storage space for it all. It always takes a while to make a list up of what I actually need for the month, which I have to tell BUPA the week before, in fact my very organised husband does a spreadsheet there is so much stuff! I always get a phone call from a dedicated person at BUPA to ask what I will need for the coming month a week before delivery. Then it arrives in box loads and all needs unpacking, checking carefully that all is correct and then sorting and storing.   

Each month I also have several different tablets to help my condition too, I usually have to take 12 tablets or so a day so I'm positively rattling around, as well as having an intravenous drug whirring round all my blood vessels. The medication includes blood thinners, various diuretics, anti sickness and diarrhoea drugs and these I get on repeat prescription from the doctor and local pharmacist and I have a yearly prescription card, which means I just have to pay £100 a year or so for them, rather than the £50 plus it would cost each month if I paid for them monthly. Friday was time to collect my monthly prescription drugs, where I am almost on first name terms with the pharmacist and staff in the shop. They will get a shock in there one day when I walk in with a new prescription for a whole new set of drugs when I get my transplant.

I suppose you could call me a firm, well seasoned and hardened drug addict now!

We were recently in the local Stevenage Comet newspaper and I couldn't get an online link to our piece so here's a piccy.

We also managed to be in the Welwyn Hatfield Times again this week, as they did a follow up article about the record number of people who had signed up to become organ donors since the ITV 'From the Heart' week. It was great to just keep the story going and hopefully may prompt a few more people to sign up to be organ donors.

http://www.whtimes.co.uk/news/knebworth_mum_s_delight_as_nearly_150_000_join_transplant_register_1_1953440

We also got a lovely card from NHSBT, thanking us for playing a part in their campaign that week, which was a really nice touch.

It is now 528 days that I have been waiting for my transplant, the last 28 days have been hectic, but during that last month of February 84 people will have died while waiting for their transplant and while I have been waiting 1584 will have lost their lives. So if you haven't already, please use the link below and sign up.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

     

Warfarin Time

I have my next appointment with the nurse at the INR clinic next week. Now some of you wonder what INR stands for. Look it up on Wikipedia and you will find various connotations: Institute of Nuclear Research; the currency code for the Indian rupee and the Institute of National Remembrance to name but a few. In my world of Pulmonary Hypertension and the rest of the medical world it stands for 'International Normalised Ratio', which is a laboratory test measure of blood coagulation based on prothombin time. In plain language how thick your blood is and how quickly does it clot. Patients with any type of Pulmonary Hypertension are prone to blood clotting, which in itself can be catastrophic to health and life threatening and therefore many of us have to take the drug warfarin, an anti-coagulant drug, and have our INR levels monitored closely. INR levels have to be watched carefully as if your blood is too thin, it can cause internal bleeding and if your blood is too thick it can cause blood clots, both very dangerous conditions.

There are many PH patients who have developed PH because of undiscovered blood clots in their lungs and for them the importance of an INR test is paramount. Many of these PH patients are suitable for a Pulmonary Endarterectomy operation, which is a major high risk operation to clear the blood clots, but if the operation is successful it can lead to improved quality of life and increased life expectancy. Papworth Hospital in Cambridgeshire is currently the only centre in the UK that can offer this surgery. Recently this operation was featured on the 'One Show'. You can find this on YouTube, just google Pulmonary Endarterectomy and the link will come up - the link would not work in my blog unfortunately. It does not always return life to normal though for some patients and they still have PH through residual and distant clots and have to have the general and specialist PH drugs and warfarin to help them. There is more about Pulmonary Hypertension caused by blood clots and the treatment available on the PHA UK website below:

www.phassociation.uk.com

I am not in as much danger as my PH friends who have blood clots, however I am possibly prone to blood clots just by having PH. I have to have an INR measure between 2 and 3 to keep my blood thin enough so it doesn't clot, but not too thin that it poses the danger of internal bleeding. My warfarin dosage is adjusted accordingly to keep me as safe as possible from all the risks involved, hence my regular visits to the INR clinic. This INR range may vary from patient to patient depending on their condition and classification of PH. 

When you are first put on warfarin you are given a full set of instructions about your diet. Basically you need to keep your diet steady as INR levels can be affected by diet, vegetables containing vitamin K and alcohol can cause warfarin to be less effective, so whatever you are used to having, if you change things dramatically than you may put yourself in danger. For example if you have one glass of wine every now and again and then decide to drink two bottles on a Saturday night not only will you get drunk, but your INR will be out of range. Decide to have spinach for your breakfast, lunch and dinner, when you only usually have it once or twice a week, then you will put yourself in danger and drinking cranberry juice is a no no! Warfarin doesn't really inhibit your diet though once you get used to it, it is the usual thing, eat a well balanced and steady diet and all should be reasonably fine. Warfarin can also interact with other medicines, so any doctors and pharmacists that you deal with need to aware you are on it. 

I am prescribed warfarin in packets of half mg, 1mg, 3mg and 5mg and as the dose is adjusted now and again I can just make up the new dosage with this assortment I have in stock. They are colour coded so that you don't mix them up incorrectly and get them confused and accidently overdose. 

I am really grateful and lucky that I have my INR tests at my local doctor's surgery, which is just a few hundred metres away from my house. When I first started on warfarin, I had to go to my local hospital for the blood test and the pathology department was always packed and there was usually at least two  hours to wait if not longer. I obviously had to pay expensive car parking charges and needed someone to drive me and accompany me. At the time I had to do this, the hospital was undergoing refurbishment, which meant a long uphill walk from a temporary car park. This was also when my PH was at its worst and I was struggling to walk and passing out regularly. 

Many of my PH friends have to endure the struggle to and from the hospital though and have different people attending them each time they go. It seems a post code lottery as to how the system works in different parts of the country and how much very sick people are forced to endure all in the name of a blood test.  My late father, who had end stage heart and lung failure, was on permanent 24 hour oxygen to breathe and was confined to a downstairs room for the last year of his life, had to endure going to hospital every week for his INR check. He had to wait about two hours each time for the 'always late' ambulance to pick him up, wait the hours of waiting for the blood test and then wait hours again for an ambulance to take him back. Having to go through all that each week absolutely beggars belief when all it takes is a prick of your finger and a drop of blood on a slide, why on earth the nurses attending him each week at his home couldn't do it I will never know, my mum could never get a proper answer on that one. So I know I am blessed at the moment when it comes to my INR checks.

Some of my friends have gone to the expense of buying their own INR machines to save them the grind and inconvenience of extra hospital visits, but these are expensive and still need to be used in conjunction with your local warfarin clinic and GP.

So I'm lucky now and I have also had the the same lovely nurse who helps me each time I go, which is another bonus. She says I'm one of her most interesting patients as she has never had a patient with Pulmonary Hypertension before or a patient waiting for a heart and lung transplant. I think I am also about twenty years younger than most of her patients, so she enjoys a laugh and chat! Many of her patients are elderly and usually have blood clots or atrial fibrillation. 

I have to carry a little 'yellow book' and card with me at all times, so that if I ever need emergency medical attention, the medics will know that I am on anti- coagulants. 

I usually have to go every two or three weeks for my INR check, but since I was ill before Christmas, my INR range has been all over the place. First it was too high, meaning I was in danger of internal bleeding, a few days later in hospital it was too low meaning I was in danger of blood clots and then, with good timing and great inconvenience for us Knebworth warfarin patients, Christmas and New Year fell on a Tuesday our clinic day. This meant I would be struggling to get another INR check before Christmas and for the next couple of weeks to make sure I was back in the correct range again. 

My absolutely fantastic warfarin nurse, on getting the message I was in hospital phoned our home and left a message of all the times I would be able to contact her over Christmas to get an INR check done out of the usual clinic times. She only comes to our surgery once a week, but her main job is as a practice nurse in another surgery, in another town; however, she made time to to see me on Christmas Eve when her surgery at her usual doctor's was finished, so I would be safe over the festive period. She goes an extra mile every time and it is wonderful to have such strong support when something is worrying you. Bank holidays are always a big worry when you are seriously ill as that is always the time if something is going to go wrong, it will go wrong! 

Getting used to warfarin was a bit of a shock at first and tiresome, with all the blood tests at hospital and the diet worries, but with all my warfarin nurse's help and support now it's just become part of my natural routine in life.            

     

Just one last fact about warfarin, it is a commonly used rat poison, it was first used as a rodenticide in the 1940's, so if we ever get rats in our household, they better watch out, there are copius amounts of warfarin about! 

    

I would be interested to know what others have to endure with their regular INR checks and whether your stories are good ones like mine or bad like my dad's!

Join the organ donor register: https://www.organdonation.nhs.uk/

Sign the epetition for the opt-out scheme: http://epetitions.direct.gov.uk/petitions/38220