Dealing with the fear/anxiety while wa... - British Liver Trust

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Dealing with the fear/anxiety while waiting

muffins7 profile image

Hi everyone.

Hope you're all doing okay and as healthy as can be.

So a bit of background on me, I am a 31 year old woman with a drinking history. I drank very heavily from about 21-29 but have been sober for almost 2 years. I had an ultrasound last year after mildly elevated liver enzymes which showed a fatty liver. Since then, I have lost about 45 pounds through diet and exercise. Since losing weight, my bloodwork has normalized and my latest ALT was 9 with AST 17 from two weeks ago. Bilirubin has always been low (.3 - .5), platelets have been in the 370s to low 400s, albumin around 4.9-5.1 for the past several years, all other numbers seem to be normal (MCH, MCV, Alk phosphate).

But, I have had several spider angiomas appear that make me fear that cirrhosis was mistaken for fatty liver. The larger one I have had since before my first ultrasound for several years now, however, I believe I have found another one on my bicep. It is a very small red dot with very two very faint veins that can be seen coming from it when I shine a flashlight on it. In normal light, the veins aren't visible but if I am in very bright daylight and looking very closely or using a flashlight, they are visible. I also have many tiny dots on my arms and stomach that I previously thought were cherry angiomas but am now doubting that they may be the start of spider angiomas. I do have PCOS and have had issues with high estrogen symptoms in the past due to it so am hoping that somehow it may be related to a hormone imbalance but I am so scared that my cirrhosis was missed. I have an upcoming follow-up ultrasound in December and my first appointment with a gastroenterologist in January (there are no heps in my area) due to the spider angiomas but I am really struggling with dealing with the fear and the waiting.

I find myself not able to function very well and am compulsively googling things and checking my skin constantly. I am finding it very difficult to eat or concentrate on anything else and have daily panic attacks. I have tried very hard to get control of my anxiety and recently started seeing a therapist who insisted I wouldn't be able to get control of my anxiety until getting a diagnosis which is likely months away. I am just wondering, how do you deal with the fear and anxiety while waiting for appointments and exams? Does anyone else struggle this much with fear? How do you deal with your diagnosis? Does anyone have tips or experience for how they handled a similar situation? I appreciate if anyone has any advice for me to help me through the next few months while waiting.

Thank you very much for reading all this if you made it through. All of your stories and posts have helped me very much.

36 Replies

Hi muffins, if these are indeed spider angioma then they arn't necessarily a sign of liver disease at all. One of the most common causes of spider angioma is increased oestrogen levels so if they are indeed spider angioma that could be your reason for having them given your PCOS/high oestrogen/hormone issues.

You have a diagnosis of fatty liver which it sounds like you are doing great in tackling, your bloods look great and you need to somehow reassure yourself that doctors know what they are saying and having given you accurate results to date and continually googling is fuelling your health anxiety.

Katie

muffins7 profile image
muffins7 in reply to AyrshireK

Thank you Katie. I appreciate your response and hope that there is a chance that the spider angiomas are due to my hormonal issues. I do need to figure out a way to stop fueling my anxiety either way as it obviously isn't helpful and won't change the outcome. I am just having a hard time with emotion regulation and struggling with facing the fear.

HI. I have been where you are and its very very tough to be freaking out about a life threatening disease, Google will make you go crazy, there will be horrific stories out there, you might want to think about not using Google. Oh yes, I remember the fear, didn't sleep for months worrying I was about to bleed out or some other serious symptom would just pop up in minutes or something. Checking my stomach and eyes for signs that I was becoming de-compensated several times a day........it was an endless fear and anxiety and to make it worse you are all alone

I didn't calm down until I got a Fibroscan and a meeting with a Liver Dr, 4.2kpa and a tiny amount of fat above normal. He laughed when I thought I was at deaths door, told me just to live healthy and watch the booze intake.

How much were you drinking a week ? Most people I know drank alot in their 20s without ill affects.

muffins7 profile image
muffins7 in reply to Smegmer

Hi Smegmer, yes I agree I need to figure out how to stop my compulsive behaviors (googling and checking myself constantly for new symptoms) as it is making me miserable. I am very happy for you that you had a good outcome. See, this is the tricky part that I am so embarrassed at and doesn't allow me to consider that I may not have cirrhosis. I drank entirely too much for too long at amounts that could easily give anyone cirrhosis. The problem is I don't really know how much I was drinking anymore at this point as it's so hard to pinpoint now exact units. It started out as binge drinking in college so wasn't daily but was too much and then escalated after I graduated and started working around 24. I used to drink a bottle of wine pretty consistently for many years and for a couple years (maybe more it all runs together) I drank two bottles of wine a night. I did have some periods where I tried to get sober so stopped drinking for some stretches or was able to not drink as much but in the end I was drinking at dangerous levels for entirely too long. There's no question the amount I was drinking could cause cirrhosis and this is why that coupled with spider angiomas and various skin lesions, I am pretty sure I am facing a cirrhosis diagnosis in my future. I guess I am trying to figure out a way to face it and how I can move forward and still live the rest of the life that I have. I just have so much regret and fear. I wish I could change my past so badly. For so long I drank almost as if I was trying to kill myself due to depression and now all I want is to live and I am so scared it's too late. Thank you for responding. Again, glad you're okay.

Smegmer profile image
Smegmer in reply to muffins7

OK, I know how difficult it is to find out you have been risking it with booze, yes you have increased risk, but that does not mean anything like a certainty. The Queen Mum used to consume ~70units a week (1 bottle of wine a day) and lived to 101, Tony Blair said he used to do about the same as Prime Minister and he is still alive. My uncle is 61 and has downed 2 bottles of wine a day for the last decade and that is when he slowed down, no idea why he hasn't had major health issues, he has 40 years of being an alcoholic under his belt. Even in skid row alcoholics the occurrence of Cirrhosis is 10-20%. There are many stages to get to Cirrhosis, even if you did have some scarring as long as it wasn't bridging scarring then the Liver will heal with no booze. Its a tough organ

If you are in the UK you could get a private Fibroscan and consultation. Even of you have another ultrasound I don't think its going to ease your fears. Your platelets look great, all the bloods I have seen in people with Cirrhosis have low platelets.

I do recall when I went for my Fibroscan and told the Dr that was a regular 40-50 units a week he just went "pffffttt, is that it? You have been on Google haven't you". He then casually grabbed the scanning probe and said to me "watch this", it came up 4kpa 1st reading and then I relaxed.

muffins7 profile image
muffins7 in reply to Smegmer

Thank you for trying to reassure me. I appreciate that. I am not in the UK unfortunately and know the ultrasound probably won't do much for reassurances but unfortunately I will need to go through the slow process of referrals/routine tests to get access to additional tests/specialists.

I guess I just am trying to convince myself that there is hope. That a cirrhosis diagnosis doesn't mean my life is over yet and I may still get many more years with my husband. I'm hopeful maybe I get to see 40 and make more memories with my family. I am trying to grasp onto the possible hope of a transplant one day as another option if my fear is true..I don't know I'm sorry I am just very scared. I don't mean to unload all this onto strangers I just feel very alone in this and need to get it out somewhere.

Zukosmile07 profile image
Zukosmile07 in reply to muffins7

Please try not to think like that.I am in a position were I have to have a transplant or I will die.

I sometimes cannot believe how much I'm putting up with. I put up with it because having a transplant is the only way I will survive. Doesn't stop my life still going on.

You don't even know yet, there could be absolutely nothing at all wrong with your liver. You definitely need to find out and I mean now.

Try pushing your doctor for a referral to see a specialist.

Get this done and get some results and you will know and the amount of pressure relief you get, crushes anxiety into a fine powder. Please

We will still be here to talk with after your results......

Do it Danny x

Zukosmile07 profile image
Zukosmile07 in reply to muffins7

Wow, we have all had that same feeling......I wish.....Try to organise a CT scan to put your mind at ease. Do you have any evidence of scarring on your liver because there is no way of knowing through blood tests alone.

Stop Googling please. You are better talking with the people who live through this nasty disease.

I had been diagnosed with alcholic hepatitis at the age of 30 and I gave up drinking for around 2 years and made a full recovery. What happened later is different (other stories) but at that point I had to find out rather than go on hearsay and speculation.

You never know and the only way for piece of mind is to find out through a hospital.

I really hope this helps.

Back with my old mate's the only way you could chat about this shxt is over a few pints in the pub. (How we laughed)

Joke.

You will always get support from this crowd.

Danny x

muffins7 profile image
muffins7 in reply to Zukosmile07

Thank you Danny for responding. I am sorry for being such an insensitive jerk and posting about my anxiety while waiting for appointments with a specialist when you and others are going through difficult times with such a better attitude and more bravery than I could ever have. I really appreciate your advice and will take it to heart. I am very sorry if my post caused you any frustration, I truly did not mean for that but can fully comprehend how insensitive it was and I truly apologize. I hope you get your transplant soon and will be keeping you in my thoughts.

Zukosmile07 profile image
Zukosmile07 in reply to muffins7

Please for the love of god... don't worry about me. I just tackle things differently.Please push to get checked out and you will find your problems disappearing.

I know it is hard but I'm also saying we are all still going to be here to help with your anxiety..... promise...

You can ask me absolutely anything you want....

Danny x

Smegmer profile image
Smegmer in reply to Zukosmile07

Hi Zuk ! So you had AlcHep at 30 and then recovered for 2 years, what happened after that if you don't mind me asking ?

Zukosmile07 profile image
Zukosmile07 in reply to Smegmer

The joy's of our culture I think. I felt fine all my test were fine and I thought that I'd gotten away with it. Working like a trooper, going on holidays, weddings, christenings even funerals the drinking just caught up with me again. So I did the same again but I stopped for 1 year this time. (I never found out that I'd already started with cirrhosis). So I did it again felt fine but this next time wasn't the same I had pains and a small amount of ascites fluid. I had a CT scan and they found 60% scarring on my liver. Do you know what pal I will tell you the rest another time.I think that is enough for people to cope with so far.

It also brings back memories,so if you don't mind I'm off to make sure my hernia pops back in ok and then out for a walk.

Thanks Danny

Smegmer profile image
Smegmer in reply to Zukosmile07

Fair enough, thanks for the info. Enjoy your walk!

Hi Muffins. Well done for giving up drinking but it seems to me you have replaced that bad habit with another ..... googling ! All this is doing is fuelling your anxiety and no matter how much anyone tries to convince you that you don't have cirrhosis, you have closed your mind to the logical explanations. You need to find a better way of filling all the time you spend googling your every symptom especially if you are using American sites, they will have you believing you are at death's door with a cut finger. Exercise is the best stress buster there is. So put the phone, tablet, laptop away and get out walking, get some good professional fitness dvds, a kettlebell and hand weights and put your energy into something which will challenge your body and clear your mind, set some goals for yourself to keep you focused and leave google alone. I am now going to kill the 2 wailing cats who woke me up AGAIN at this unearthly hour !!

Laura

muffins7 profile image
muffins7 in reply to Positive001

Hi Laura,

Thank you, you are so right. I appreciate your direct response and definitely need to find a better use for my time. I'll try excercising more. Thank you for responding, I always appreciate your responses on other posts. Hope you're doing well.

Positive001 profile image
Positive001 in reply to muffins7

Great! Thankyou Muffins.

Don't let fear and anxiety define you. You are your own person and you don't own it. You may have periods of anxiety but you have the strength within you to brush it away 💪

All the best.

Laura

Hi Muffins

Katie really knows a lot and always gives great advice. Smegmer has pointed out lots of cases with good outcomes which shows, we often worry unnecessarily. We cannot help that, we are often more worried by the unknown, because our minds will always go for the worst possible case.

I understand exactly what you are saying regarding anxiety and coming here is a great way to start getting back control.. it worked for me. Firstly, I stopped googling... because if there was 999 great outcomes and one bad one, I'd convince myself that was going to be me. The people on this site have a wealth of experience and they tell it straight.

What I do is "distraction". I can sense anxiety starting to grow, my foot will start to tap or I'll get a pain and my mind will start to find a way to make that pain escalate into the worst thing I can imagine...

I rely on music, I put on some of my favourite songs, sing along and the anxiety goes away, if I cannot play music I remember some of the best moments in my life, or watch tv or even better, watch some comedy on youtube, SNL is always good. I find I make my mind so distracted it stops trying to convince me something is wrong. I hope this helps you too.

If I need reassurance I come here and read other peoples posts. There are people here who have been right to the very edge, hospitalised on occasions and given ultimatums before turning their lives around, you have already started turning your life around, long before that stage, you have done really well, you are doing all the right things now, 45 pounds lost, exercise, platelets are excellent and you are keeping vigilant. Your body is well, it is just yours and mine thoughts that are causing us problems. Every time I distract myself, it gets easier the next time.

Just keep reassuring yourself and distracting yourself, the tests will come and hopefully put your mind at ease.

Dave

muffins7 profile image
muffins7 in reply to Gravy58

Thank you Dave, those are some really good suggestions and your kind reply really touched me and meant so much to me while reading today. I hope you are doing well and enjoying some tunes.

Hi Muffin, waiting is horrible and google definitely makes it worse. I know it’s a cliche but I found meditation and yoga helped me. Just sitting outside and focussing on breathing slowly and deeply really helps. I think the ultrasound will be helpful, it picks up a lot so should reassure you. My Mum had chronic liver disease and lived 20 years after her diagnosis so don’t start thinking about building memories for your children just yet 🌺

muffins7 profile image
muffins7 in reply to Readlots

Hi, thank you so much. I should try meditation and yoga. I've never really been able to sit still or relax unless I was drinking and maybe now is the time to tackle that issue by trying those things. Thank you so much for sharing with me about your mother's condition. 20 years, wow! I hope you have a great night.

BlueAster profile image
BlueAster in reply to muffins7

I just wanted to say to anyone new with cirrhosis. Don’t focus on life expectancy being discussed. It will affect your progress and drive you mad. No one can say what your own personal journey will be. Obviously to someone just diagnosed fairly young, 20 years is not what they want to hear.

Trust1 profile image
Trust1Partner

Hi Muffins,

Welcome.

As Katie says there can be many reasons for spider angiomas. We would suggest to see your own doctors for a physical assessment.

Googling will escalate your anxiety levels even more and if you feel your anxiety is getting difficult to manage we would suggest to reach out to your GP and other associated charities for support and specialized help.

nhs.uk/mental-health/nhs-vo...

With warm wishes

Trust1

muffins7 profile image
muffins7 in reply to Trust1

Thank you. I will do that.

Flatly stop referring to Dr Google for advice it’s the worst thing to do it blows your mind and increases your anxiety I know from doing it myself.Hypnosis is what I’m doing. I’m using Clear Minds it’s English I know but you may be able to access if not there must be an equivalent in the US.It’s helped me sort my anxiety whilst I’ve been waiting for results.Chat to your Dr and show them the skin conditions etc that you anxious about.I’ve worried myself stupid.I’ve finally been told today that I will have a check up in six months to keep a check on my fatty liver I’m happy with that.I’m 76 and a drinker especially since retiring I’ve drunk every evening.Your young don’t worry about the past you can’t change it.Look to the future and help what you can change all your results look good so far.Stay busy and keep happy I’m sure things will work out for you stop putting yourself through hell I have and it’s not worth it.

muffins7 profile image
muffins7 in reply to Cazmags1

Hi cazmags1, you are right it's not worth it and won't change any outcomes. I never thought of trying hypnosis. I will look into that program or something similar. I am glad to hear you are getting good followup care and hope you are well!

Smegmer profile image
Smegmer in reply to Cazmags1

Caz - Did you get your Fibroscan results? So just a bit of Fatty Liver confirmed ?

Cazmags1 profile image
Cazmags1 in reply to Smegmer

Yes I got them at last yesterday.I am so relieved and thank you for your concern.x

Smegmer profile image
Smegmer in reply to Cazmags1

LOL, come on what was the kpa ?

Cazmags1 profile image
Cazmags1 in reply to Smegmer

28.4

Smegmer profile image
Smegmer in reply to Cazmags1

What was the cause they have given you booze, NASH, other ?

Cazmags1 profile image
Cazmags1 in reply to Smegmer

Fatty liver

I had to say something again.... Sorry

Hey Muffins - on phone/computer type You Tube - then type in meditation, relaxation or self-hypnosis - free wonderful temporary release from anxiety while feeding lots of fresh air to your lungs and brain, relaxing your whole self Very good for your mind and body and helps with anxietyI was diagnosed Cirrhosis caused by alcoholism at age 46 Now 75 and doing pretty well; careful monitoring (ultrasound, and endoscopy one every six months and blood work every six months, low salt/sugar diet, exercise) and, of course, no alcohol. I'm in Canada - think British Liver Trust is most amazing site. It even offers you the opportunity to talk by phone to a trained nurse! All best wishes for a happy life - it is still very possible

Hi Jasmine, wow! Thank you so much for sharing that with me. That is amazing. I didn't know it was possible to live 30 years with cirrhosis and gives such hope. I also am going to try meditation and hypnosis after all the wonderful suggestions. I hope you are doing well and stay in great health!

WOW. ~30 years ! I have seen 15-20 years before, but that is amazing ! Maybe you have reversed it ?

So glad that helped! MY favourite voice among those who offer these sessions free on You Tube is Lina Grace : second choice is the Mindful Movement; (both women) but there are lots to chose from;.Some of the mail voices are also very reassuring. Hope you enjoy it. Let us know.

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