Bleeding is increasing

[Splodge60]

Hello my dear Forum friends. Quick summary - started with diagnosis of type 2 diabetes in 2002 and diagnosed with NASH by biopsy one year later. Diabetes caused me untold problems and I was treated by an Endocrinologist about one year later and also referred to a Gastroenterologist around the same time.

No idea how long these issues had been around prior to referral for diabetes and liverFast forward to 2017, after hardly any input from Gastroman in intervening years. Also in October of 2017 blood started coming out of my mouth every single morning. Drove GPs and probably Forum members mad in trying to get an explanation for why I was bleeding. I now have a diagnosis of Hughes disease/APS. Please look it up if you’re interested. It is another community here on Health Unlocked I’m too tired to go into detail except to tell you my point after 3!years of suffering with this, and no medics had any idea of this disorder. It’s a bit late now for me.

This week I learned I’m only expected to live for months. Worse though, is that the bleeding is now coming through my bladder, so much so my urine is almost completely blood. I don’t have a UTI, so things are not too brilliant. My surgery rang me today, asking me to to let the Nurse “have a feel of my tummy”. on Tuesday. She attributed the cause to Warfarin (they’ve said that the cause of the bleeding for 3 years was Warfarin, yet my INR levels are at a normal level).

I’m very poorly, yes indeed, but, and it is a big but, let me just say this:-

If you need a referral to a liver consultant, do not allow the GP to refer you to a Gastroenterologist. Always ask to be seen by a Hepatologist, no matter what travelling may be involved. I firmly believe that such an approach would be more helpful and, furthermore, try to also research that person’s competence as well as their personality. I firmly believe that, if I had made such an approach to my GP at the beginning of my journey to Cirrhosis, then my prognosis would not now be months but probably a few years.

[TT-2018]

Getting a Gastroenterologist referral led onto to my transplant assessment and undoubtedly saved my life. I am currently in the process of being referred back into her care.

[Lilybug]

I’m so sad to be reading this I hope you are as comfortable as you can be under the circumstances.

I’m not very good with words and I apologise for that but I mean well

I haven’t been on here for sometime but for some reason I was drawn to your heading

You and your family must be feeling very angry with your GP. Anger might hinder what little time you have left with family and friends so spend your time wisely doing seeing what ever you want to do.

I will read up about Hughes disease and I’m sure many other members will too. It is a very selfless thing to be able to think of others during this time and I’m sure by educating others you possibly might save or prolong another persons life

No body’s words are going to change this outcome for you but I just felt I had to write to you, I’m sure your family and friends will support you and I’m sure your HealthUnlocked family will too be thinking of you

Love Dawn xxx

[Splodge60 in reply to Lilybug]

No, Dawn, not angry. Frustrated, confused and baffled but I’m not generally an angry person, and if ever I am, I usually end up blaming myself xxx

[Lilybug in reply to Splodge60]

Hi Splodge60

Sorry to make that assumption, apologies X

We called my middle daughter Splodge when she was born

Hope you have a good day xxx

[Splodge60 in reply to Lilybug]

Do you still call her that today? Mine is a nickname I acquired at school, many years ago!

[Lilybug in reply to Splodge60]

Every now and again both my husband and I call her Splodge makes us all laugh

Hope today is a good day for you

Xxx

[Steak]

Hi have to say I totally agree with u in relation to seeing a hepatologist instead of a gastroenterologist . I was referred to 1 and after 18 months he decided 2 send me to st James in leeds who quickly told me I had cirrhosis and I needed 2 be put on transplant list . Had my transplant in april 2019. I often wonder if I had seen an hepatologist earlier I mite have been able to avoid this as I also felt the gastroenterologist had no idea what he was doing the only positive thing he did was 2 refer me maybe it was 2 late shud have been done earlier .take care and look after ur self. X

[Splodge60 in reply to Steak]

Good luck for your future.

[Millie09]

Hello splodge .

I have not been on forum for some time , rarely post these days due to my own issues.

May I say I totally agree with what dawn said Lilybug .. you are so very brave with what is going on past , present and future .. so very inspiring to read that I had to reply to you .

When I was first diagnosed with cirrhosis 12 yrs ago I was only under a gastroenterologist, I fact it was not until 2017 did I ever get to see my hepatologist !! And that was my first ever appointment!! .. only due to me having to pressure my then GP to refer me to QEHB , It was this forum that made me think why am I not getting the care like many others were on here , 6 month check ups etc .. so in 2016 when I joined this group did I proactively start the ball rolling, even now I had to make my feelings known to the hospital as it would have been nearly a year since my last ever check up and I was not happy , yes I know covid has caused so so many problems but I’m not one to sit back where my health is concerned , I had an Ultrasound on my liver and pelvis Wednesday, the sonographer did say there was a slight change but I won’t know now until 6th August with telephone triage with dr holt .. so I totally understand what you say splodge .. I’m sending big (( hugs )) to you ..

love Linda x .. sorry for the long message 😏

[Splodge60 in reply to Millie09]

Wonderful you only have a couple of weeks. It too me 4 months before I was able to speak with my Gastroenterologist and even then it only happened because I sent a letter of complaint. Caused my mental health to deteriorate a lot.

[Millie09 in reply to Splodge60]

It’s terrible isn’t it splodge 😏, please keep in touch , if you need a chat at any time x

[Splodge60 in reply to Millie09]

Thank you Millie. I appreciate what you’ve said. Are you ok???

[Millie09 in reply to Splodge60]

Your most welcome! .

Oh I’m not so good at the moment splodge , thank you very much for asking me 🤒.

Had some sort of tummy upset since Monday morning , I still don’t feel much better, the worse thing about it is this awful dry mouth , with a metallic taste and I have an awful craving for Coke Zero 😳. I do drink sugar free coke but my god not like I have in the last couple of day’s , and I’m so so drowsy .. mind you my pain meds were increased and I don’t think it’s agreeing with me , I have telephone triage on the morning with my liver consultant so I’ll run past a few of my concerned .

Hope you are keeping as well as you can be splodge xx

[hells456]

Not in my case, I saw my GP for a cholesterol check and he referred me to a gastroenterologist and I was diagnosed within a week. Both doctors have been wonderful, listening to me, explaining everything and seeing me frequently over the last 7 months since I first saw them. They coordinate well with each other, me and my liver nurse. I feel well supported and in safe hands. For me waiting to see someone would have been far worse as I was just on the borderline of cirrhosis when my disease was found.

I have been reading your posts and I'm so sorry about the awful journey you've had and the gut wrenching horror of how much could have been done differently for you. I admire how you have stayed strong and are still here supporting others.

[Splodge60 in reply to hells456]

Do you know, this forum, and it’s administrators have been incredibly helpful to me. Some of you think I am strong, others recognise my weaknesses but don’t judge me. I am so grateful. I would just like to update you out of courtesy for your kindness to me.

I am really struggling to eat very much now so I have lost a lot of weight. I have to force myself to eat because of my reliance on 4 x injections of insulin per day. Obviously this has added to my weakness/muscle wastage and everything else. The constant loss of blood has added to my woes. I am going for a Cystoscopy on Wednesday to see if I bladder cancer, due to weeing blood and bringing up blood in my mouth every day. Yesterday I was terribly upset. My husband was out of hospital after a Corneal Transplant and has to lie flat on his back for a couple of days. A good friend brought a meal round tonight for Steven’s dinner. I cannot eat that now. I was so grateful. Most of my days now are spent going in and out of sleep. I try to keep up with my paperwork but I can only do something for very short periods. I do wish the medics had been kinder to me on this journey but, they’re only human beings after all, and none of us are perfect. Thank you all again.

[Lilybug]

Hi Splodge60

I’m sorry to hear that your days are difficult, please don’t apologise for your woes, it sounds so tough what you are going through. Xxx

What a lovely friend to bring food for you and your husband are you getting help on a daily basis ?

I read up about Hughes Syndrome, Thankyou for making us aware of this x

What did you do prior to your illness ?

I work with very challenging young teenagers and I am very lucky to still be doing this job.

I hope the trip to the hospital is ok and you don’t have to wait around

Love Dawn xxx

[Splodge60 in reply to Lilybug]

Hello Dawn

I worked as a Senior Research PSychologist prior to being. I had several papers published in academic journals, one of which included the British Medical), Journal!! I come from a poor background and did not pass the 11+ (google it)!!! I trained and worked firstly as a Secretary, then trained in Residential Care for Children. Rose to the dizzy heights of Deputy Matron of a care home for 25 disturbed children Someone

Said I was good enough to go to University which I did Got a B.Sc (Hons) in Psychology - one of top 3 Not bad for someone with no academic school qualifications I then got married and became proactive in getting myself a Research Assistant post At a School of Medicine in Yorkshire The rest you know a little bit about Ive written my history but not published it I was 26 when I got my degree and at 33, I had 2 children and and a Ph D By the time I was 40, I had to give up work due to serious Clinical Depression Now, at 70, I’m trying to leave a legacy, (not only for my 6 grandchildrenfirst), but also for the benefit of anyone who may wish to learn of my mistakes, difficulties, trials, tribulations and from my achievements as well

I went to first 2 out of 4 appointments this week, today A diabetic annual review plus ultrasound on my abdomen At the latter I was told that my spleen and kidneys are fine “but, she said have you got a gallbladder”??? The answer is yes but I was taken aback by her questions I was only in 2 minutes