Hi and Hello

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Joined: 16 May 2018 10:00

Hi and Hello

Postby PSRNE30 » 25 Jul 2018 14:43

Hi I'm Paul,

I am 58, a dad of 2 (8yrs and 2yrs) from Tynemouth in the North East of England.

Around Easter time this year, following a nasty bout of flu which floored me for about 9 days and a 2 stone weight loss my Hb dropped through the floor. After numerous blood tests for a wide array of viruses, fungi, bugs and other things I was referred for a bone marrow biopsy.

The procedure went fine though it did feel like he was trying to suck my right leg out through a very small hole in my pelvis ( this is not usually the case I am told and is purely due to my personal condition). I believe the consultant had his suspicions at that point due to the problematic biopsy. Anyhow approximately 3 weeks later I was given my diagnosis of Hyperfibrotic Myelodysplasia.

Looking back, I recall the consultant mentioning the potential for a 'not so pleasant' outcome during my weekly and then fortnightly visits for blood tests and the two transfusions to date. I think this hardened me for the formal diagnosis and various chats with Professors, Consultants and Doctors regarding a BMT.

So jumping forward to July and some outstanding attention and care by our NHS namely; Rake Lane Hospital, North Tyneside, Northumbria Emergency Specialist Care Cramlington and Northern Centre for Cancer Care Newcastle upon Tyne, Freeman Hospital I have 5 x 10/10 tissue matches and am hoping to receive a proposed transplant date on Monday.

I am experiencing various levels of fatigue on a day to day basis and some 'bone pain' but am still working, albeit reduced hours. I did discover that my DNA markers indicate a Germanic origin which did take some getting used to :shock: ( I think my dad was more concerned about that than the diagnosis :lol: ) .

Anyway, writing this has been therapeutic and I would be happy to chat and share with others who are going through or have been through similar circumstances.

Best wishes to all.
Posts: 11
Joined: 20 Feb 2018 16:21

Re: Hi and Hello

Postby AWOX15 » 28 Jul 2018 19:15

Hi Paul
I read your post a while ago and couldn’t answer your questions. This site deserves better response from people that have MDS and those fortunate to be able to have a bone marrow transplant.
I was expecting to see some kind of response to your email.
There are more people on the Facebook site.
It’s such a personalised illness that it is very difficult to generalise what to read into others experiences.

Sophie, at Kings, whose telephone no. is on this website would be a great person for you to contact and give you further information.

Good luck and I hope you get some answers to your questions.

Regards Alan
Posts: 58
Joined: 07 Mar 2013 11:22

Re: Hi and Hello

Postby christina » 29 Jul 2018 13:17

Hi Paul sorry your going through the old MDS experience, sure it's not easy with work and a young family, however you seem to have a good team treating you and yes I would also advise giving Sophie a ring, the more info you have will give you more understanding, allthe very best
Posts: 2
Joined: 13 Aug 2018 09:14

Re: Hi and Hello

Postby CWDN32 » 13 Aug 2018 23:53

Hi I'm Caroline, I'm 59, I'm in North East England. I have been having appointments with gastroenterology for some time with tummy upsets. One diagnosis I had following a nuclear scan a couple of years ago was a bile malabsorption. I have gone on to have colonoscopy, gastroscopy x4 ct scans, mri scan, but never got to the bottom of my problems. I felt ultimately not being taken seriously of my symptoms of severe nausea and sickness and still diorrhea after intervals of constipation. I'm type 2 diabetic I'm also on medication for mental health, I have copd, but I smoked heavily till I was treated with a severe chest infection 2 and half years ago. I just stopped. But the amount I smoked I still use nrt.
I have been treated for high blood pressure, but recently I had 2 blood tests that showed quite bad anaemia, so further gastroscopy further ct scan, which I'm awaiting the results, but another thing was suggested was a liver biopsy, as it was picked up by my gp some years ago I had enlarged liver, but following ultrasound I also had enlarged spleen.
This was attributed to the high doses of mental health medication for a very long time, so my liver wasn't getting a break, this has been a constant for 7 years posibbly more.
Following my gastroscopy in June I was beginning to feel so ill and shorter of breath than usual oh I also have osteoarthritis, my arms and legs were aching so much I was struggling to eat and drink, eventually 5th July I had to ring my gp surgery, I felt so ill as if I was actually on my way out, a 120 metre walk to the shop I had to stop at least 5 times, and had to take the rest of the day to recover.
The receptionist asked me to go down immediately there was an appointment available right away , I was put on ecg and was tachycardic she went to show Dr, he came to take a look at me, said I was severely anaemic to back in the morning for blood test if as he suspected, my levels down again be prepared to go into hospital.
I had the blood test was told the pathlab or gp would ring me that afternoon, sure enough Dr rang told me to go to surgery straight away to collect paperwork I was being admitted to hospital.
My levels were so low I was started on a transfusion at 3am, I had 3 units, but remained in hospital, I was given a further 2 units so 5 in total in 10 days of my stay, aplastic anaemia was suggested, and bone marrow biopsy, so after discharge I had to return later that week for the biopsy.
I had this done, the specialist nurse was amazing, she was having trouble getting the aspiration, the fluid, but she managed to retrieve bone marrow, it took over an hour, I consequently now have weekly blood tests and been requiring 2 units fortnightly, it wasn't till a week before my diagnosis appointment that I noticed on my discharge notes also mds as probable along with aa aplastic anaemia.
I quickly did some research, my sister came for a chat as she worked in senior roles within the nhs through her career retiring as a pct advisor.
She came to my appointment, and I was diagnosed with mds raeb1, high risk for leukaemia, there are blast cells present, and they wouldn't elaborate on severity, other than they will ring me tomorrow afternoon following multidisciplinary meeting.
It hasn't registered in my brain as really happening to me, through to anger at myself for the years and amount I smoked, but I'm so worried about my future and what it holds, I've a cousin has offered bone marrow donation but I don't even know if at my stage whether it is on the cards to be offered. I'm thanking god I've found this forum maybe someone in here can give me some hope
Sorry for this long explanation but had to share with someone who posibbly understands x ☺

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