Where Do We Go From Here

[DD75]

Hello Everyone hope you're well..

So after my husbands varices bleed out and emergency operation my husbands consultant got him in with interventional radiology to perform procedure to remove blood clot from the shunt failed and the 2 back ups consultant had suggested failed due to 2 more blood clots (despite fragmin at 17000 injection dose daily for over a year) and were both devastated 😔

The consultant is wonderful truly wonderful but my husband is devastated and wants to sign himself out he doesn't show fear publicly but he's terrified. I've pleaded with him to stay which has worked so far today as he had to have blood transfusions as his BP was so low after procedure.

I think he's given up and feels he's got nothing left to do he did everything they've asked eat well exercise no alcohol and the blood clots just keep appearing (he is missing proteins in his blood that stop blood clots forming and has to go for genetic testing).

It has now been suggested just banding varices every 4 weeks/months (I can't remember sorry) which originally he wasnt going to do.

The consultant does have a MDT with Interventional Radiology on Thursday but we're just devastated I feel like his consultant isn't giving up I can't fault the man seriously were blessed, but my husband just thinks that they won't be able to do anything the clot has turned chalk like the surgeon said in IV and cant be moved.

I can't believe this is happening 😢

Thanks for letting me tell my story it makes me feel less alone 💙

[BigJimmy45]

Hi DD

Wow, you’re both going through it there. I can only wish you the best of luck. Will your husband be able to get a transplant?

Jim ❤️

[DD75 in reply to BigJimmy45]

Hi Jim,

Thanks for your reply. Consultant said banding every 3 weeks from now on if no improvement on clots blocking tips (his bloods gave been sent for genetic testing now) he'll put him on transplant list in 6 months if no improvement on as it's not ideal (life quality) for a person having them banded every 3 weeks a for long time he's letting my husband come home tomorrow and getting him back in 3 weeks for banding again.

Thanks for caring 🤗

[Petrina_gmfc]

Did your husband have a liver transplant.

[DD75 in reply to Petrina_gmfc]

No he hasn't but if no improvement in 6 months Consultant said this morning he'd put him on list 😔

[Petrina_gmfc in reply to DD75]

O right hope he is better soon .

[DD75 in reply to Petrina_gmfc]

Thank you 👍

[Readlots]

I’m so sorry to hear about your husbands big scare. It must have been terrifying for you both. I’m glad your husbands coming home, he’ll recover better in his own bed, although I’d imagine it will be an anxious time given what you’ve been through. Is he under a hospital with a transplant centre? Just wondering if you can push for a transplant listing sooner than 6 months but I’ve no idea if that’s possible, what the criteria are etc. Hang in there and have a big hug from me 🍀

[DD75 in reply to Readlots]

Thank you Readlots 🤗

Means alot 👍

No he isn't under transplant Centre he hasn't been referred for one yet. He is under his Consultant at the Hospital 🏥

[AyrshireK in reply to DD75]

I would have thought a sooner referral to t/p hospital would be appropriate at this time. They may be able to get in control of his situation sooner plus his own doctor can't make any decision as to when to list for transplant - that can only happen after full transplant assessment and with the agreement of the multi disciplinary team. I would be tempted to push for referral to transplant unit now rather than waiting a further 6 months when hubby could be deteriorating further plus becoming very disheartened by the whole process.

Katie

[DD75 in reply to AyrshireK]

Thanks Katie,

I appreciate your comment 💙

They have an MDT tomorrow with Interventional Radiology again. I think they're hoping blood clots in other veins may respond to fragmin dose which is going up. If the other veins clear he may be able to have a second TIPPS which is what consultant originally wanted to try but it's not possible because of clots 🤦‍♀️ these bloomin clots keep appearing he's missing proteins in his blood. Consultant said his case is very rare as he has so many things going on. It's the clots that are causing the problems in his treatment his bloods have been sent off for genetic testing.

[redpoint72]

Hello love.Don't ever feel alone.

It sounds as though your husband has an excellent consultant, thats worth alot,it really is.

Thats a dam shame, that interventional radiology couldn't do more.

I'm sure he is terrified, no,us blokes don't tend to speak out as much as we should.

Oh dear,don't mention endoscopys love,the thought of the poor chap having to have it done every 3 weeks is not good.....as you know only just had mine done,was not good.

I'm sure he will be glad to come home.

Positive though love,that the consultants not giving up on him,your husband must take that in,as a good sign,of which it is.

I expect they would like to see him stabilise more before he may be put on the transplant list.

My best wishes.

Chris

[DD75 in reply to redpoint72]

Thank you as always Chris 💙

Consultant waiting to see if any improvement but unlikely tbh these clots keep coming and PV one that has moved from the PV into the actual shunt (TIPPS) has solidified almost like chalk the Inventional Radiology Surgeon said 😔

Tbh I'm praying the clots from other veins go so they can insert another TIPPS which sadly they can't at moment because of these clots. Consultant has said my husbands case is very rare as he has so many complications Benign tumour on pancreas and all kinds it's absolutely crazy apparently he's never seen anything like it, but as you said he sounds like an excellent consultant he appears to be he's always upbeat and brings my husbands mood up when he's literally down to the point of depression. The thing is he's always honest aswell (his bedside manner is very good).

[ladytibbie]

I’m so sorry you and your husband are going through this. My husband has just joined this group although I’ve been on a bit longer and I don’t write often but find the comments to be so helpful and supportive. I really wish you both the best and will keep you both in my prayers x

[DD75 in reply to ladytibbie]

Thank you ladytibbie,

I'd really appreciate that 🙏 thank you 💙

[user2021a]

I have Budd Chiari which is that all my veins clotted due to a MPN. The interventional radiologists have done an amazing job at keeping me alive having had surgery to unblock or put in new TIPS or stent the existing one done many times over the last 15 years. The last time did nearly kill me - had bleeding varices and ended up with blood transfusions and a week in intensive care following shunt being sorted out. They never gave up on me. I’m on the transplant list because it’s only a matter of time before my shunt blocks again even though it’s open and working at the moment. Hopefully he’s been referred to haemotology to try and improve his blood clotting disorder? Hope he starts to improve.

[DD75 in reply to user2021a]

Dear User2021a,

Thank you so much for your reply 💙

You do sound very similar to my husband except he hasn't been diagnosed with Budd Chiari, although I have come across the name when trying to do research on PV blockages.

I'm glad to hear they managed to get rid of clot in your TIPPS and then replaced it whilst your waiting for transplant and theyve not given up. My husbands consultant seems at present he's not giving up.

I'm hoping that they manage to clear the other veins with blood thinner so he can have another TIPPS like originally suggested and a steel TIPPS put in like was originally recommended by Consultant but it didn't happen and because of clots a new one doesnt seem likely sadly.

There's another MDT with Interventional Radiology this morning but consultant doesn't think they can come up with anything new. There's 18 people in the MDT apparently 😬.

He does have a haematology consultant and has had anticoagulant appointments since he first bled out and also ended up in critical care last year. He's also had his blood sent off for genetic testing yesterday although I don't quite know what they can do when they get results.

Thank you for sharing your story. It means alot. Take care and best of luck on transplant coming soon 🙏

[user2021a in reply to DD75]

if he does get diagnosed with Budd Chiari there’s a great Facebook group for it. I have a JAK2 gene mutation and polycythaemia vera rubra and have too many red blood cells. I have all main veins in my liver blocked with clots so other than small veins there is only the TIPS taking blood through my liver. I’m also on the warfarin although personally don’t think it makes a difference as had lots of clots whilst on it. Keeping my fingers crossed for you both x

[DD75 in reply to user2021a]

Thank you 💙

The MDT have decided on another TIPPS in another vein but apparently vein smaller and very high risk procedure he has a few weeks to decide. His consultant told him it is high risk because of blood thinner etc but he has done procedure before but it is risky and they Don't do it often but because if it works he will have a better quality of life. We're like what a decision to make banding every 3 weeks for foreseeable future or this procedure 🤦‍♀️

[Yellowsydney]

Hi, I had a massive variceal bleed, lost so much blood I had a stroke, in a coma for 3 days, another one a year later, had to be banded every month until they were happy the varicies were under control. I also had a blood clot in my portal vein, vein was completely blocked, had to inject deltaparin/fragmin to keep the blood flowing to my liver. Also took propanolol for portal hypertension. This kept me alive until I could have a transplant.There is hope, don't let him give up.

Hilary

[DD75 in reply to Yellowsydney]

Thank you Hilary 💙

Wonderful to hear you got transplant that's amazing 🙏

My husband never got put on beta blockers originally because of TIPPS I'm wondering if they'll do it now.

Consultant said he's holding on 6 months for transplant list to see if their is any improvement. I'm not sure why but we trust him so he must have reasons.

I know when my husband gets banded every 3 weeks from now the consultant or his staff are going to check the clot and if it softens at all they're going to get him into Interventional Radiology. Maybe he thinks a surgical steel TIPPS is better if viable within next 6 months he did say he'd asked for a surgical steel one originally and IV new surgeon apologised to my husband for previous TIPPS not being steel but because my husbands TIPPS procedure originally was an emergency they had to fit the TIPPS available. But they've saved his life twice (3 times if you include suspected sepsis and another critical care visit 2 months ago 😔) we can't fault them and they're still trying for my husband.

Thank you for sharing your story it means alot 🙏

[Dinah48]

sending you both good wishes, you are going through the mill at the moment. Some really good advice on here. And remember to take care of yourself x

[DD75 in reply to Dinah48]

Thank you Dinah48 💙