1. < Transplants

Cirrhosis of the Liver: What to expect when waiting for a transplant?

Posted by mylifebe4u @mylifebe4u, Nov 7, 2022

Hello - This is my first time to do this; however, I'm looking for some possible advice. I am 54 and have always been very healthy. I started feeling bad back at the end of May when I decided to go to an Urgent Care center to be looked at. They took blood and when I received the results, it said that my Liver levels were in critical state and to go see a Dr. I did. They took more blood, did an Ultra Sound (which was normal), did a CT scan and did a Biopsy. The results: Stage 4 cirrhosis of the Liver. They have no explanation as to how I got it. I don't drink, it's not hereditary and I'm not over weight. It's now November. They referred me down to a larger University Hospital to see a better specialist; however, I cannot get in until Dec. 8th! I am scared! How long can I last waiting to be seen? What should I do in the mean time? I did some reading and I have cut almost everything out of my diet and with that, I am feeling a whole lot better but I know I still need a Transplant and need to get in. I'm (and my husband & family) are going crazy waiting. Would really appreciate and and all help. Thank you!

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guillermos | @guillermos | Nov 14, 2022

I am sorry about your health. Isuffered overnight a collapse (vomiting blood ) that in the middle of COVID put me in the ER. Very similar to ur problem. I went immediately to the best local hospital who detected and knew my problem. Medicine kept me alive but I was immediately included in the liver recipient list. Was called 4 times but only the last qualified me to received a transplant. 6 hrs operation and so far the liver is improving with my organs -no rejection- the recovery has been hard for me, 5 mo. And going once a week for blood ck, that was easy but I developed strong tremors that force me back in ER where I am now… if you have strong wish to live, do 2 thing, get a great doctor to give you medicine to “keep u alive n out of complications, 2 ask to be included in the National registration of liver recipients…. I truly hope u have a good insurance because gets expensive. Hugs going your way. Namaste

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2 replies
henrydeboer | @henrydeboer | Nov 14, 2022

Im just about to start. I will leave some very caring doctors in New York to move to Florida to the mayo clinic. In hopes of getting on a liver donor list. my meld score is approx 16 (done by my wife) Don't know what to expect. Keep you all posted.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 15, 2022
In reply to @henrydeboer "Im just about to start. I will leave some very caring doctors in New York to..." + (show)
@henrydeboer

Im just about to start. I will leave some very caring doctors in New York to move to Florida to the mayo clinic. In hopes of getting on a liver donor list. my meld score is approx 16 (done by my wife) Don't know what to expect. Keep you all posted.

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@henrydeboer - welcome to Connect. You are about to
meet and interact with an amazing group of patients who will support you because they (we) have all walked the journey to a liver transplant.
Are you planning to make a temporary or a permanent move to Florida? Where are you in the process of being seen or evaluated at Mayo for placement on the transplant list?
What are some questions that you would like to ask?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 15, 2022
In reply to @guillermos "I am sorry about your health. Isuffered overnight a collapse (vomiting blood ) that in the..." + (show)
@guillermos

I am sorry about your health. Isuffered overnight a collapse (vomiting blood ) that in the middle of COVID put me in the ER. Very similar to ur problem. I went immediately to the best local hospital who detected and knew my problem. Medicine kept me alive but I was immediately included in the liver recipient list. Was called 4 times but only the last qualified me to received a transplant. 6 hrs operation and so far the liver is improving with my organs -no rejection- the recovery has been hard for me, 5 mo. And going once a week for blood ck, that was easy but I developed strong tremors that force me back in ER where I am now… if you have strong wish to live, do 2 thing, get a great doctor to give you medicine to “keep u alive n out of complications, 2 ask to be included in the National registration of liver recipients…. I truly hope u have a good insurance because gets expensive. Hugs going your way. Namaste

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@guillermos - You have certainly been on an uphill journey. I am sorry about your current ER visit, I hope that when you receive this reply that your doctors are working to resolve your strong tremors. At 5 months, it is normal protocol to have weekly labs. Are you taking Tacrolimus/Prograf ?
I am 13 years post transplant (liver and kidney). I have made many runs to my local ER, especially during the first few years.

When you get home and have resolved the tremors, will you send an update?
Congratulations on your recent Liver Transplant!

REPLY
1 reply
arqui02000 | @arqui02000 | Nov 15, 2022
In reply to @myfablife "Hi mylifeb4u, You are in a good place to get support while u go thru this..." + (show)
@myfablife

Hi mylifeb4u,
You are in a good place to get support while u go thru this journey.
I was diagnosed w/stage four cirrhosis, portal hypertension and thru my process developed hepatic encephalopathy and ascities. My TP team still has no clue how I developed it either. I was 59 w/no underlying medical conditions and in very good health except my liver disease. Which will help u get thru this.
Keep your faith stay positive and know we r all here to support you.
I am now 2yrs. LT and doing well, it is a defiantly a process, life is beautiful I am so grateful for each day. Sounds like u have a good support group also.😊
Please let us know how your December appt.goes.
One thing they did tell me try and drink a high protein b/f u go to bed, it will help with your energy and your body needs protein right now.👍

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Hope you can translate this in English the Reason I ask you to this because my primary lenguaje is Spanish.
La HIPERTENCION produce encefalopatía la razón es que la sangre buena no te llega con buen flujo debido a la alta presión arterial el ascetitis es acúmulo de agua debido también a la hipertensión y la cirrosis CONTROLA la sal no soy doctor pero leo mucho las causas producidas por lo que tenemos fase 4 no es mucha en mi caso llegue al estado 7 o más no estoy seguro pero lo que me paso es que me salió CANCER al hígado y eso hizo que me hicieran el aa transplante de hígado hoy como tú dices pido a DIOS y doy gracias por el día a día de vida q el me da continua siguiendo las direcciones de los doctores y claro dejaré saber Mi próxima resolución con el doctor

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2 replies
myfablife | @myfablife | Nov 15, 2022

Hi arqui2000
Amen, I pray that u will do very well with your LT. Yes please let us know how things go w/your Drs. appt.
😊💚

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guillermos | @guillermos | Nov 16, 2022
In reply to @arqui02000 "Hope you can translate this in English the Reason I ask you to this because my..." + (show)
@arqui02000

Hope you can translate this in English the Reason I ask you to this because my primary lenguaje is Spanish.
La HIPERTENCION produce encefalopatía la razón es que la sangre buena no te llega con buen flujo debido a la alta presión arterial el ascetitis es acúmulo de agua debido también a la hipertensión y la cirrosis CONTROLA la sal no soy doctor pero leo mucho las causas producidas por lo que tenemos fase 4 no es mucha en mi caso llegue al estado 7 o más no estoy seguro pero lo que me paso es que me salió CANCER al hígado y eso hizo que me hicieran el aa transplante de hígado hoy como tú dices pido a DIOS y doy gracias por el día a día de vida q el me da continua siguiendo las direcciones de los doctores y claro dejaré saber Mi próxima resolución con el doctor

Jump to this post

Your Spanish explanation is fine! I am native Spanish speaker, I also check the translate option provided at the end and works very well,

Deseo q todo sea lo mejor con tu transplante!
Wish the transplant goes great!

The battle is in the recovery phase, but it’s worth it

Namaste

REPLY
1 reply
guillermos | @guillermos | Nov 16, 2022
In reply to @rosemarya "@guillermos - You have certainly been on an uphill journey. I am sorry about your current..." + (show)
@rosemarya

@guillermos - You have certainly been on an uphill journey. I am sorry about your current ER visit, I hope that when you receive this reply that your doctors are working to resolve your strong tremors. At 5 months, it is normal protocol to have weekly labs. Are you taking Tacrolimus/Prograf ?
I am 13 years post transplant (liver and kidney). I have made many runs to my local ER, especially during the first few years.

When you get home and have resolved the tremors, will you send an update?
Congratulations on your recent Liver Transplant!

Jump to this post

I wrote a reply but not sure if it was posted. Yes, tacro is in my list, seems something is happening with my cerebellum, not sure but they included paranolol 60mg as a drug to help me… human body is complex n healthcare is not straight 1+1.

One of the doctors detected my balance walking was off, it’s incredibly how devoted and sharp to pint point details they are. I have strong respect for everyone working at the healthcare sector; from janitors to doctors, they r angels! My only concern is the pressure my ER visits put in my son & daughter, they worry and their lives get altered, I made piece with my God and work hard on my day-to-day medicine, food and lifestyle.

I practiced yoga n tree pose was one of my favorites, I took the pic to share, from the hospital and I am glad my balance is still great! Meditation helps lots, exercise is a must, on Saturday I had my best 1/2, one and 1.5 miles times! Then Sunday to ER… that is life! 🙂

Namaste!
REPLY
arqui02000 | @arqui02000 | Nov 16, 2022
In reply to @guillermos "Your Spanish explanation is fine! I am native Spanish speaker, I also check the translate option..." + (show)
@guillermos

Your Spanish explanation is fine! I am native Spanish speaker, I also check the translate option provided at the end and works very well,

Deseo q todo sea lo mejor con tu transplante!
Wish the transplant goes great!

The battle is in the recovery phase, but it’s worth it

Namaste

Jump to this post

Guillermo I had the Transplant since 30 month ago but in february 2022 they find out my liver is not working properly and the Cirrosis start coming again in my new liver so recovery phase as you mentioned it was done during this last 2 year and half I was working so hard with every thing. I also want to mention to you that I had 9 ERCP so they went in my new liver to unplug the bile ducts. So recovery for me was too hard but still have faith that my new liver give me at least 5 more years so I am grateful that God give me more time to live so every day I pray and be thankful with my lord keep in touch with me

REPLY
myfablife | @myfablife | Nov 17, 2022

arqui0200 I pray that u get more than 5 yrs. U have been thru so much I did not realize the cirrhosis can come back in our new livers. I to had cirrhosis not alcohol related w/portal hypertension/hepatic encephalopathy.
Thank you for sharing your journey.
Myfablife🍁

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