Anxiety

[ARPKD_]

The past month has been awful as far as my health of body and health of mind.. I was only out of the hospital for a two weeks until I was right back in there. I was discharged yesterday. My anxiety is getting the better of me. I can't shake this feeling of doom.. I'm so scared.. And to make matters worse I've exceeded my 14 a year doc visits on my Medicaid insurance coverage and now I'm left to pay all these co-pays for the remainder of the year and I can't afford it.. I feel like not only is my body battling against me but my mind is as well.. It's difficult to breathe..

[RodeoJoe]

I can certainly identify with how you're feeling. I to was in and out of hospital a number of times when I got ill before transplant. I couldn't sleep, and I'm convinced I didn't sleep for a month. This just exacerbated my mental well being and I felt like things were out of control and was convinced I was dying. At one point I was so convinced I was dying I got my other half to call out the paramedics. They took my vitals and said I was ok, but I wasn't convinced. A few days after that I had high sodium due to diuretics and lost it completely. I didn't even know my name. Again I ended up in hospital, very shaken but recovered and when my meds were adjusted I started feeling better.

I then went for transplant assessment and it wasn't until I was on the waiting list that I started to get over some of my anxiety.

I assume you're in the US, and I can't imagine how much more anxiety having to worry about insurance must be.

Perhaps you need to speak to a medic about your anxiety, maybe your meds aren't helping. Find out where you stand with your insurance, and try to work something out. I really don't know how it works out there but having to worry about insurance when you're as ill as you are seems very cruel. I found anything requiring any kind of concentration almost impossible. Do you have any services like Citizens Advice Bureau?

Good luck!

[ARPKD_ in reply to RodeoJoe]

Thank You for responding and your understanding encouraging words, they are very appreciated. Just having someone to speak with that understands what I'm going through helps alot. I am in the US and as far as I know there isn't anything like the Citizens Advice Bureau here. I've been having symptoms from the cirroches for 3 1/2 years but I've only had my insurance for 1 year; it took me 2 years to be approved for disability coverage because I am so young. I've only been able to see family doctors and general surgeons up to this point because the closest specialist's have been booked up, my first appointment with a liver doctor is coming up this September. So honestly I have no idea how bad off I really am because I haven't been evaluated by the appropriate doctor but I can only assume it's not good considering the bleeding varices, acities, and portal vein thrombosis. I am trying my best to keep my spirits up. Do you have any advice on something that would help with the fatigue? And can you explain how the transplant was for you personally if you wouldn't mind. If it bothers you to speak of it I understand.

Best wishes to you! xoxo

[RodeoJoe in reply to ARPKD_]

No doesn't bother me at all.

Practical advice regarding diet is to eat plenty of protein. Make sure you have something that is high in protein before you go to bed. This is because the liver needs extra protein with cirrhosis otherwise you might get muscle waste. Also stick to a low salt\sodium diet because the liver really doesn't like it.

There's not much I can say about fatigue, it's one off the main symptoms. If you're working let your boss know. I didn't and was constantly getting told off for being late into work and even falling asleep in the toilets. But I was a bit in denial about my condition.

If you've got an appointment in September then I can only advise that you write down every question you have and make sure you take it. It's also well worth taking a family member or good friend. There were countless times I went into a consultation, and because of the high intensity I just couldn't retain the information I was told, or I was confused about what had been said.

I was diagnosed at 27 with cirrhosis, I was told at the time I had between 5 and 8 year before transplant. The cause of the damage was never discovered but it did slowly progress and I finally needed a transplant when I was 42.

For the majority of those years my symptoms were fatigue and varicose veins on my esophagus. I went down hill quite rapidly at the end and had all the symptoms like jaundice and acities.

After an assessment I was put on the transplant waiting list, and was transplanted after about a month. It's a massive operation of course but the recovery was relatively quick and I was home after 10 days. I was up and about within a couple of weeks, and feeling good within 3 months. I went back to work after 6 months and I'm doing really well.

You're lucky to have found this site as there's some really knowledgeable and experienced people here. Everything you're facing will have been an issue for someone on here.

[ARPKD_ in reply to RodeoJoe]

Thank You! Your words about your experience with this is very comforting! I'm so happy for you that you are doing so well! And I'm actually surprised that you only had to wait a month for the transplant, I expected it to take quite a bit longer! I know every case and circumstance is different and it may take longer for me and others but it did help my feelings that you only had to wait a month!

Yes I'm blessed I found this site! Reading on this site and talking with the various other people has helped me alot! Everyone here, yourself included, is in my thoughts and prayers daily! <3

[Litimag]

The U.S.is such a wonderful place in so many ways, I just wish they would sort out the health system. Anyway..

Before my transplant, and after to be honest, I found that copious amounts of coffee helped a lot with fatigue. Caffeine also seems to have a protective function on the liver too, lots of studies being done on it just now. I know what you mean by the sense of doom you have been feeling, I certainly shared that sense before transplant.

There is no point getting too down before you see the hepatologist in September, s/he may have treatment plans that work for you. I know it sounds like new age hippy b.s., but keeping a positive mind does help a lot

The insurance thing is beyond me, I really don't know what to suggest there..

Take care of yourself, you are not alone in all this

[Faithfull]

I can honestly say that I am now going threw this feeling of doom ,it's like a a grieving feeling but I promised myself that I would reply to you and by doing so as (I have adult ADHD,) my concentration on trying my hardest to let you no you are not alone and believe me it will pass as I had it constant 3days but its going,I want to thank you as I thought it was just me that had it ,it's when you have to much to bare and don't no where to start.i hope you can understand my reply as s of me spelling s

[ARPKD_ in reply to Faithfull]

You're very welcome! And Thank You as well for replying and your comforting words! It's a nice feeling knowing you're not alone in what we are going through.. I am here if you should ever need to talk! Do you have Facebook or Instagram?? Maybe we could chat there sometime.. Sending prayers and good vibes your way! Take Care <3

[Faithfull]

Thanks a lot I will get back to you I no its stupid but if you give me your Facebook name I add you and message you so you no it's me me nerves bad insomnia is driving me insane ,I hope and pray that everyone that is on here does not have to suffer mentally and physically as we all well no that lonely insufferable torchered we have inside our heads but if I can give help hope or just be there for even one person then I have a meaning to all this as I can't belive that so many people replied with things I never new and that I'm not alone .