Today is World MDS Awareness Day. The theme this year is about knowing your type. For those who are not so familiar with it here are the basics.
MDS stands for Myelodysplastic Syndromes, and it is a group of malignant blood disorders in which the bone marrow fails to produce healthy blood cells.
All types of blood cells can be affected, causing a range of symptoms.
* Red cells (also called erythrocytes) – which carry oxygen to organs and tissues in the body. If these are low you look pale and can be breathless. If really low it can make you feel faint.
* White cells – which collectively fight against infection. These cells help with any infection that you develop. If these are low you are really prone to infections.
* Platelets (also called thrombocytes) – which prevent us from bruising and bleeding. If these cells are low you can bruise really easy.
To understand why it’s called this weird name. Myelo means bone marrow and Dysplastic means strangely- or abnormally-shaped. This means when cells are taken from the bone marrow they look odd under the microscope.
There are many different types and sub types of MDS. The World Health Organization (WHO) has developed a regularly updated classification for separating the different types. The system has changed about 3 times since I was diagnosed in 2000. This current system is based on the blood results, the appearance of the bone marrow, the number of abnormal immature blast cells and any chromosome changes found. The immature cells are called blasts, which may be increased in some of the types of MDS.
There are broadly six types of MDS included in the current 2016 classification. These are:
MDS with single lineage dysplasia (MDS-SLD)
MDS with multilineage dysplasia (MDS-MLD)
MDS with ring sideroblasts (MDS-RS)
MDS with excess blasts (MDS-EB); MDS-EB-1 and MDS-EB-2 MDS, unclassifiable (MDS-U)
MDS with isolated del(5q) or with 1 additional abnormality
As you can see it’s a very scientific and specialised field to get your head around. My subtype is Hypoplastic MDS-MLD. This means all three lines of blood cells are affected and my bone marrow is also low in cells. I’ve always been a bit different and never totally fitted in to a neat box.
I hope that factual start to this blog for MDS World Awareness Day helps you to understand the complexity of this condition and why it impacts on so many things.
I have a new sofa at home. It’s a bit lower than I’m used to. In order to help me stand up I put my elbow on the arm of the sofa to lever myself up. Unfortunately my arm slipped off and despite the fact that I had a jumper on, my skin ripped and left the sore looking wound in the photo. My skin is incredibly thin and tears easily. This is due to the long term use of steroids for the GvHD (graft verses host disease) that I suffer from. My skin also bruises incredibly easily. Again the long term steroids cause this as well as having fragile veins and cells. The final insult from having had to take so many steroids is I have incredibly weak muscles. I cannot climb a flight of stairs in one go anymore. I can’t get up from low seats. I can’t carry shopping and walk. It’s amazing what my body has been through and continues to experience.
I have some good news too. I finally had my PEG removed. This was a feeding tube that was inserted 3 years ago. It was put in when my gut GvHD was poorly controlled and I wasn’t able to absorb food or keep much down. At the time it was a God send. I’ve improved a lot since then and with the new expensive drug Ruxolitanib bringing most of these awful symptoms under control and some other new and innovative medications I’ve been eating well for the last year and haven’t needed to use the tube.
I still have stomach problems. Sometimes my stomach doesn’t empty and hours after I’ve eaten it all comes back up all undigested. I also get a lot of reflux. Taking all that into consideration the gastroenterologist decided that when they were removing the PEG they would also insert a Bravo Clip. This is a microchip that’s attached to your oesophagus and sends signals to a recorder device you wear around your neck. It’s not a good look in these scary days of terrorism. The idea is that the microchip measures how much acid, if any is coming up out of the stomach. My study was for 96hrs. I puked twice during this time so it will be interesting to see what the results show.
As well as all this I also had 4 polyps removed and several biopsies. It seems I have some thickening of my stomach that doesn’t make sense. That’s me all over. So many doctors tell me I’m a challenge or that I make their brains ache. It’s not always good being unique. Lol. Anyway I’m really pleased the PEG has gone even if it does leave me with 2 belly buttons.
As regular readers of my blog will know the above procedure had been cancelled 4 times. I was at my wits end with it all. This time they decided to bring me in and do all the horrid bowel prep once I was admitted. I arrived at midday on Monday. I was told there wasn’t currently a bed and things were difficult. I was asked to sit on a chair out in the corridor. Several staff came and apologised for leaving me there. I couldn’t eat or drink anything in case it was to go ahead. Around 4.30pm a senior nurse came and got me and said they had a bed on the general medical ward. I was relieved until I got to the ward.
I was shown to my bed and found myself in a bay that had 6 beds in it. I’m used to my individual rooms on the haematology wards with their own loo and shower. This bay had the one shared toilet and I knew I was going to have to do bowel prep.
I saw the lovely doctor who said the team were really pleased I was in a bed and that it was finally happening. She also explained that bowel prep should have been started earlier as I was due in theatre the next morning. She said I wouldn’t get much sleep. I had 3 sachets of that disgusting stuff 3-4 hrs apart. I was up all night going back and forward. Two of my neighbours were also talking all night and kept going off the ward to smoke amongst other things. They seem to have no idea of the noise they were making. Fortunately the other two women in the bay seemed oblivious and I wasn’t asleep.
In order to try and protect myself I kept the curtains pulled round my bed and the window open. I also kept my mask on even when sleeping. It was a bit scary. My main medical team tell me to continue to shield and be extremely cautious and yet here I was in the middle of a load of non mask wearing patients who had no idea how vulnerable I was. I had to tell all the staff that approached me to take extra precautions as otherwise I would have just been one of the many not needing anything special. It was worrying and I was glad to get home.
So on this MDS World Awareness Day I want you all to know that MDS may start in the bone marrow and blood cells but it’s impact is global. Some of that impact is as a result of treatment. I don’t think there is one area that hasn’t been problematic. Here’s the list of the legacy I live with from top to toe:
Dry eyes
Cataracts
Dry mouth
Taste changes
Cracked teeth
Serious hearing loss
Mouth ulcers
Sore throat
Hoarse voice
Small skin cancers
Dry and itchy skin
Under active thyroid
Adrenal insufficiency
Nausea and vomiting
Muscle pain and weakness
Joint pain
Small stress fractures in neck and back
Osteoporosis
Ingrowing toe nails
Peeling and disfigured fingernails
Breathlessness and reduced lung function
Fragile skin that easily rips or bruises
Gastroparesis
Reflux
Extreme fatigue
Brain fog
Reduced kidney and liver function
Mild pulmonary hypertension
High blood pressure
Oedema
I’m sure there are other things that I’ve forgotten to mention. Despite living with all that and despite the challenges of always having to advocate for myself to keep me safe, I am incredibly grateful to the staff and team that saved my life over and over again. I of course also owe a debt I can never repay to my little sister Gail who donated her stem cells. This week marks 5 years since my transplant. So much has happened in that time.
Some of the amazing things that have happened in these 5 years include seeing my grandchildren grow and blossom. Seeing my daughter expand her horizons and take off in different directions. Find and meet my sisters Sandra and Linda and my brother Russell who I’d never met before but now we are all great mates. As the saying goes “you’re a long time dead” so make sure you get the most out of life.
What does the future hold? Who knows. I’d like one day to be able to get back on my motorbike. I so miss that feeling of freedom. I’d also like to do some more writing. Ultimately I’d like to get well enough to do a bit of work too. And of course to continue to spend time with my long suffering partner and the rest of the family and see what direction the grandkids go as they hit adulthood. It’s not too much to ask so I hope I can achieve it.
For all of you reading this wherever you are I hope it encourages you to never give up. Just remember that a mighty oak tree started it’s life as a little nut that held its ground.
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