Hubby has been in and out of hospital with Anaemia. Consultant said it was due to the liver suppressing his bone marrow. Never heard of this before and couldn't find any information anywhere.
Anyone else heard of this?
It's so frustrating as we just don't seem to get anywhere. His referral for transplant got 'lost' so we missed the Jan clinic in Reading which means we have to wait until June. He doesn't sleep at night so is always exhausted.
Sorry for the rant but feel like I am banging my head against a brick wall.
That is nonsense - I mean the loss of his referral and having to wait until June. I would not take that lying down. Your hubby is seriously poorly and needs this referral - he can't wait until June. We've sadly seen others on here who waited too long.
I would write in to your consultants secretary & keep a copy for your own purposes ( a letter in a patients record is hard to ignore plus it can come back to bite on the bum if something was to happen further down the line and they have not acted on matters). Express your serious disappointment that you'd been told a referral was done but now you've discovered it was 'lost', express your concerns for your hubbies health and concerned that you will have to wait so long for any progress to be made in his case when all the while his is becoming ever more poorly.
I had to do this, our local consultant told us it was time to refer to transplant (TP) clinic in January 2013, he was also going to arrange 3 monthly blood tests. In February/March 2013 hubby went for an endoscopy with consultant locally and he stated that he was still writing the report to TP clinic for referral so time was passing on. Edinburgh state they will see all new referrals within a set time frame (pretty sure it was something like within 3 weeks but can't find those details to confirm).
By June 2013 we hadn't heard anything and GP's knew nothing about the 3 monthly blood tests which had also supposedly been ordered. When I found this out I contacted consultants secretary and discovered that the consultant had gone off sick himself and nothing had been done regarding hubbies referral. I put our concerns in writing that very day because I got exasperated and upset on the phone.
The long and the short of it was that a locum booked hubby straight in to doctors for blood results, saw us the next day locally and made the referral to the transplant unit where we were seen within a fortnight or so.
Don't sit on this, write and request the referral be done, hubby can't wait.
As regards the anemia, haven't heard of that reason being given before, my hubby had colonoscopy and endoscopies to check for further bleeding to explain his low haemoglobin. Was prescribed ferrous sulphate and that was that. His situation is different now in that the loss of his spleen has caused his to go away - spleen no longer gobbling up all the red blood cells.
Thank you for the advice. I know I'm too soft with them and Hubby (oops).
The more we go through the more it feels like it's me and Tom (hubby) that has to do all the fighting.
We are going to email the consultant who said he had done the referral and see what he has to say.
Thing is apart from the anaemia his bloods are steady so the doctors just say he's alright and move on. Frustrating because he has such a rubbish quality of life at the minute.
It's us that see them in pain and them getting upset because they don't understand why. Yet we have to fight to get our voices heard.
Had to persuade his GP to come and see him because he was in agony with his belly. She gave me a lecture about not booking a home visit through the proper channels. Whereas yesterday she said that if we needed her to see him to phone in the morning and leave a note for her which I did.
Rant again I know but liver disease just sucks and is so unpredictable.
Im always anaemic and they blame it on ladies troubles but ive been that way for years so dont see how it can b that.ive been told that if you have a large spleen you can end up with large quantity of bld stored there...
Think i remember someone saying this can cause anaemia?i call liver disease...the waiting game asthats all i seem to do.i dont sleep either and havent really for 17yrs..
Now have a sleepomg tab if reached the end of my teather but cant have many and if u take them all the time they dont wotk but okay for a bit of relief.ask for some queen e prescribed mine as doc wouldnt!!!
very true..I'd forgotten about that..my spleen is twice the normal size and they think that is part of my anemia woes right now..thanks sweetie, completely spaced that! ha ha ha..Im so weird some days..actually, I think its because there is SO MUCH to try and remember..sighs!
xxxx
kimberly
ps.sorry im so bad at replying Cazer..been back in hospital again..in and out in and out..sighs..but Im still here! XXX
Dont worry aboit replying swiftly we all understand its just all too much...and being in n out of hosp all the time is not good .i really feel for you youve really been goimg through the ringer.so frustrating with the bloods and all...keep battling on i will cross everytjing for the biopsy.much love and virtual hugs cazer
I had some anemia prior to transplant..since the surgery, it has gotten much worse, and I have had several transfusions since then.
My white cell count has also bottomed out..but they believe that is from the imuno suppressants.
The whole process can be frustrating..especially losing his info? That's highly rare and seems quite odd to me.
The good news is, you said his bloods are stable? That is what they will be using for transplant assessment,. They have no choice, by the way. Its standard protocol, and everything is done above board, and with the same restrictions applying to all.
That being said, 6 weeks prior to my transplant, my blood work looked VERY stable..even though my ascites was massive and I was getting drained every 10 days. They were concerned, because my bloods were so good, that I might need a shunt to stop the ascites, while waiting for a donor. I was considering the shunt when we got the call. I am a semi rare blood type, A- and was blessed to receive a new liver. By then my tests had fallen again slightly, but my massive ascites was enough to persuade the transplant team to go ahead.
Exhaustion is normal for liver disease patients. So is anemia. The liver will take energy from wherever it can. For me, I had zero body fat, was not eating, and it was going after my muscle. I also had very low red cell counts prior to surgery..once all the way to 6.1. I had 3 or 4 blood transfusions in the 3 years I was sick before, and have had 3 since.
I just got out of the hospital again on Friday after another week in because of rejection and bad blood counts..red and white. Hopefully the liver biopsy results will explain whats happening to me.
I know your frustrated..it can be so hard watching your partner get sicker and sicker..it was for mine and he's still worried, all the time..especially with all the hospital stays since.
Do you have someone you ca talk to? or some way to get a break?
I bought my partner a fancy camera and I used to force him to leave the house once a week to go shoot pictures..he got so good at it, hes selling his work now, and has been published in magazines..lol..He's too shy to speak to others, and did not tell his close friends until after my transplant that I was sick. Sadly, he would have never come to a site like this.
Take comfort in his good blood counts. Ask about the missing info. You and HE, especially, are your best advocates for his healthcare. Be firm, but polite. They are only people too..and they makes mistakes..lots of them..trust me..lol. Keep notes and if you think of questions, write them down and ask at clinic appointments..
Keep the faith.
I know I am.
cheering you on, and hoping all the best for you and your partner!
oxoxox
kimberly
ps. I went in for the testing for transplant last Feb. and was told I was going on the list. They sent the paperwork via the mail and I filled it out and sent it. Then I got a staff infection from my pic line and went into hospital in June for a week. The transplant coordinator came by to see me..turns out, I was not on the list yet? He had to sit and explain everything to me, at my hospital bedside, I filled out the forms again, but in front of him, and was placed on the list that day. So, Im not sure what happened there, ether..shrugs..but Im grateful..I think they have to sit with you and explain and watch you sign.
Hi.....my bone marrow DID stop producing red blood cells when my liver was decompensated.If bone marrow is not working well you get very bad anaemia.If I were you I would ask if a bone marrow sample is needed. Not pleasant ..in my case a haematologist took a sample from my hip. With this they diagnosed pure red blood cell aplasia, but when i started getting better, bone marrow started producing red blood cells again. It just meant that I had regular blood transfusions. It may be possible that is what is happening.And as for sleep, 4 years later have been prescribed amitryptyline at a low dosage, as was sleeping so little that was little more than a zombie😣....consultant approved it and said most people he saw had sleep issues but most were short term.
His referral for transplant 'got lost' ! How outrageous! I definitely agree about contacting the consultants secretary; i'm sure hubbie will be seen alot quicker. Waiting til June is out of the question. When things are urgent always best to contact the secretary; never the main appointments line. x
Also, what sort of a GP is that! Unbelievable and outrageous attitude. Good GP's can be hard to find though; the best ones at my doctors are leaving or you cant get to see them cos they only work about a day a week. Yes, you must be firm now and demand what your husband needs. x
I found the email address of the consultant on the website so sent him an email yesterday. 😊.
The NHS is fantastic in an emergency I can't fault any a&e staff, ambulance crew or anyone like that. It's the aftercare that can be such hard work.
I thought I was overreacting but reading everyone's responses tells me that I'm not. I just want people to do their job right. It's not too much to ask!!
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XXX
Don’t know how much more I can take!
Preparing for Transplant
Drinking again
Hello again, further update......
Bilirubin again!
