Sunday 8 October 2023

Myelodysplastic syndromes (MDS)

My friend Teresa has shared her story with me and has asked me to share it with everyone here. Please remember to be kind when leaving a comment. Help us to raise awareness by sharing this post on your social media pages  Thank you.  **Trigger warning - Some may find this hard to read**

What is Myelodysplastic syndromes (MDS)?

Myelodysplastic syndromes (MDS) are a group of conditions where your bone marrow does not work properly and makes faulty blood cells. MDS is a type of blood cancer.
Bone marrow is the spongy tissue found inside some of our bones. It's where the body makes blood cells. If everything's working normally, the bone marrow makes healthy blood cells, and the right number of each type gets released into your bloodstream. But in MDS, this process has gone wrong. (Blood cancer UK)

Teresa's Story

When did you first know something wasn't right?

 In December 2019 my periods changed but I just thought it was a blip I went from 4/5 days to over a week which at that point was a difference to me. I did put it on the back burner and never thought anything about it. Fast forward to lockdown I started getting anxiety and periods were lasting over 2 and a half weeks. Anxiety started in the shower I started struggling with standing. I just put it down to lockdown and never thought nothing of it if I felt tired or low I just went to my bed.

I was off from March 20 to July 20.  When I went back to work I couldn’t walk the length of the room and go for my lunch without my legs getting wobbly and feeling breathless and the periods were still lasting a lot longer than now as previously stated 2 and a half weeks. I kept all this too myself only asking my mum to bring me a drink when I finished work so it kind of gave me a boost. I spoke to my colleague and they said that I didn’t look right one day, so we googled my symptoms and it came up with anaemia. I thought damn I have 8/10 of the symptoms but again, I just pushed to one side and thought nah. I get a day off and I eventually went downstairs and my mum took one look at me and said “Do you feel alright as you look awful” I thought maybe it’s time to phone the doctor. So I got a call back from the doctor and he said “Can you come round at 3” so my blood was taken and sent, I got a phone call at 8/8.30 that night from the professor of haematology and he said “How are you feeling? I want you in tonight now” I was like “absolutely not I’m in my bed. I feel ok. I’m going to sleep soon!! (I’m very stubborn which you will come to find!) so he compromised and said right ok but you need to come in for 10 tomorrow, which I agreed too! Went in for 10 the following day and I had all different tests done, however I got told my platelets and blood were very low. My bloods were in the 50’s and I’m not sure about the platelets. I had my first bone marrow biopsy done, that is a procedure that I will never forget! I thought I was going home after the tests, however, I got admitted.

What Symptoms Presented?

The first of the symptoms was anxiety in the shower. It was like I needed to get out of there as quick as possible. I changed my shampoo and everything so that I wasn’t in there for long. I was also bleeding far too long and (sorry this maybe graphic!) the clots that came out of me some were the size of my hand. Once I got diagnosed with anaemia, I noticed that I used to get little red spots on my arms which meant my platelets were low. There was one night I woke up I had a long sleeved nightie on and I shouted on my mum as there was blood everywhere and I didn’t know where it was coming from. I realised clots had started coming out of my gums this was when I realised I had no control. I was still having heavy periods so I eventually I got the 3 month contraception injection which was a god send, however, by September 22 it stopped working. A lot of the main symptoms I had were breathlessness, weak in the legs, sometimes off my food, tired, foggy head, there was also a time I couldn’t even get simple words out in a conversation. 

How long from the onset of symptoms to diagnosis?

When I was first went into hospital in August 2020, they told me I had a condition called Evans syndrome, which is basically another anaemia condition. My doctors kept saying it was that until I started requiring more blood products like platelets and blood transfusions, so I had another bone marrow biopsy I think was during the year 2021 because they didn’t think I had that condition. Yes I was anaemic, but they felt something else was wrong and this is when MDS was mentioned. Not going to lie I googled the condition and read that this condition was mainly a condition that older people got like aged 70+ so I thought my age was going to help me, how wrong was! My details and tests was passed to a Leeds hospital which deal with this sort of condition. They also couldn’t determine what it could be as they thought it might be something called Aplastic anaemia because the symptoms of both conditions are similar however they decided it wasn’t that and went back to the MDS diagnosis. When I got the news I devastated. So I think it was from August 2020 June/July 2022 I got the confirmation. 

After your diagnosis, you were referred for a transplant.  How long did it take from referral to procedure?

This process was a nightmare, they wanted my brother and sister to do the blood test to see if they were a match, I didn’t want that as they have health issues themselves, especially my sister. However my brother wanted me to put him on the list. I never put my sister on. I spoke to her and she said “I feel guilty that I’m not doing it” I replied “why? no offence I didn’t want you doing it anyway, how would you feel if you were a match and you were told you couldn’t do it that would be worse so please do not feel guilty”. My mum had already told her that I was adamant I didn’t want either of them doing it!! The hospital wanted a list of cousins so we needed to phone and ask if they were willing to go on the list and I have a lot. I think I put maybe about 8 down at first!! I found out when I was shopping in Primark on my birthday that my cousin was going down the next day for further tests as he was a match!!!! I burst into tears!!! It was an emotional time haha! So i went down at the beginning of November to Queen Elizabeth hospital Glasgow to have a chat with the doctors and have some tests done! I was told I was going to get my transplant in the new year which was good as I was able to finish 2022 and get the transplant. WELL that never happened. I got a phone call on the Tuesday after the visit and got told that they had scheduled the transplant for December 22 and I was being admitted on the 4th of December and again the emotions started. I am a person that needs to process everything so I can get my head round things!!! I did get told I had a full 10/10 donor from Germany and also my cousin who was only 7/10 however we matched with a lot of the tests and they determined he was a better donor. 

Can you share what the transplant was like?

The day of the transplant was the 15th of December, patients who have had a transplant called rebirth or birthday.  I was nervous and excited all rolled into one, because I wasn’t sure what was going to happen, I couldn’t process it and I never slept very well. The nurse came in with the machine that defrosted the bags of marrow and my first reaction was “what on earth is that for”. All the nurses were really good put me at ease but there was still a sense of uncertainty. The other machine came in which was the freezer for the marrow, I found out I had 5 bags to be transfused. The nurses explained the marrow was going to be put through my Hickman line which was a relief (I don’t have good veins!). The process was quite simple and quick, it took about 45 mins to over an hr to transplant all 5 bags. When I get transfusions I don’t feel anything however afterwards I do get really tired so after it was all done I rested and slept for a while!

What has the aftercare been like?

The aftercare was good by the nurses and the doctors, they always came in to check and give me the relevant medication. I did lose my appetite, which was a bit concerning, the smell of food was just awful. I would only drink water. I had to get my mum to send juice as I sick of water at the end. I had a few high temperatures over 38.5 and they were surprised how I just dealt with it (95% of my admissions were because of a high temperature so I was used to it!). Maybe a few days after the transplant I started sleeping all day only really wakening to talk to the doctors, get medication and go to the toilet. I was shocked how quickly I didn’t have energy, I took so much activities to keep myself occupied, however, I never did any of them as my energy was gone.

How are you now?

I am doing really good. I found out in April that my transplant had worked 100%. My doctor Abby was so excited to tell me, she literally bounced into my room at the hospital. I’m not going to lie it hasn’t been plain sailing. I did discharge myself from the Glasgow hospital. I kept getting told I was going home however the day before I was always told no because something wrong with my liver or kidney. It got to the 13th of January which was a friday and I basically told them I wanted to go home. My mental health had taken a battering, I hadn’t seen my family for over a month and I basically had to deal with Christmas on my own as well as shaving my hair off on Christmas Day. I phoned my parents to talk to them and both times I did, they were with my brother and sister’s families. I will admit it I was jealous and missed them more. So the 13th of January was the best day (against the doctors advise) I finally got to see my mum and I broke when I seen her!

When I got home I had to reintroduce food as I wasn’t eating much. A lot of food I couldn’t eat as the textures were awful. My go to foods were pasta fruit and some crackers at the beginning. Now I still can’t eat roast dinners and milk chocolate!! I wasn’t allowed certain foods when I came home it was like I was on a pregnant woman’s diet! The most I craved was blue cheese haha. When I first got diagnosed I asked how long it would take to recover I was told it would take up to a year, I was like absolutely not I want to be back to work at least 6 months after the transplant. It took 6 months to recover but there was no way I could have went back to work. However on the 3rd of October I was finally able to go back to work on a reduced hour week and managed well. I was off for 11 months. I am getting stronger everyday and I am able to go into small shops and to appointments at the hospital however I do have a wheelchair for longer distances as I get tired very easily.

I would like to say a massive thank you to Teresa for allowing me to share her story with you..

To learn more about Myelodysplastic syndromes, click here

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