Pre Liver Transplant and Nervous

Posted by feruj @feruj, Jan 16 9:43am

I have my first trans-team appointment soon and I’m really starting to get nervous.
Are there a support groups for these and or is there anyone at any stage in either process that has time for some questions?
Thanks

Interested in more discussions like this? Go to the Transplants Support Group.

@feruj, You have just now introduced a support group topic with this new discussion!

I can understand your being nervous about an upcoming appointment. I know that other members are going to want to help you by sharing their experiences and support you as soon as they see this group.

In the meantime, I would like to ask you what kind of appointment you are scheduled for. Is it an initial consult to determine whether you will need a transplant? Or are you beginning the evaluation process to determine if you qualify for transplant?

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@rosemarya

@feruj, You have just now introduced a support group topic with this new discussion!

I can understand your being nervous about an upcoming appointment. I know that other members are going to want to help you by sharing their experiences and support you as soon as they see this group.

In the meantime, I would like to ask you what kind of appointment you are scheduled for. Is it an initial consult to determine whether you will need a transplant? Or are you beginning the evaluation process to determine if you qualify for transplant?

Jump to this post

I’m new to this so excuse the delayed response and thanks for the info.
The appointment is my first one with this team and the Oncologist who I was seeing (because initially it was a possible Cancer diagnosis), told me that I would need a transplant I’m assuming it’s an evaluation. My husband is so unbelievably supportive and although my family is huge; I haven’t told them. Within less than 6 months I went from not having so much as a tooth removed to this, lost my sister and 2 weeks ago my Mom.

I’ve been holding it together pretty well but now I’m really getting nervous about the whole process. I have read a lot about what to expect and the general mechanics of the process but I’m looking for bluntly honest every day experiences.

I think that’s written rambling but any and all advice is greatly appreciated.

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Wow h have been thru a lot, I my self was very healthy b/f my LTP too. I am not going to sugar coat it “ it’s a lot to take in the process may not move as quick as u want., lots of testing to see if u r a candidate fort the TP list. So try and be patient and know they r there to help u thru this journey.
I am not sure about your situation since there might be a ca dx.
I wish h the best and let us know how u do…

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Thanks @myfablife, I am otherwise perfectly healthy and thankfully no ca. I'm no longer itchy (thank God & any higher being responsible), so currently I have the some swelling, fatigue and nausea (nothing too bad). Sleep is hard to come by but I can't really complain overall.

My biggest fear is my family and I was wondering if anyone has a similar experience or any advice.
-I'm very private and ultimately it's my decision but my husband wants me to tell me family yesterday. I would prefer to not to in general; this is compounded with the fact that I am not on speaking terms with those closest to me.
-I'm wondering if others went from mild to extreme symptoms and any tips on what to look for.
-Will I need someone at my side 24/7 afterwards?
-Am I probably not going to be able to get myself a cup of water afterwards?
-Will I look like myself physically/how much shock should I prepare myself for?
-What does returning to work look like?

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Hi feruj,
I had similar situation w/family I to am extremely private person to,my Dad felt he needed to let them know what was going on so he took it upon himself to tell them”what could I say he is my Dad😊 and loves me”
It all seem to work out fine and family was very concerned and supportive. U really need that when u r going thru this journey, u do not need any additional stresses.
My LTP journey was pretty urgent as I had portal hypertension, ascities, and the worse was hepatic encephalopathy which hospitalized me for a while. I experienced the itching and sleepless nights but that’s all part of it.
It’s not as bad as u think at least not for me. Yes u will need a caregiver but u will be able to do simple task for yourself, u will look like u have been thru a major surgery but just take it a day at a time it will get better.😊💚
Some people do so well they return back to work within 6 weeks and some need more time it a individual situation how u do, it sounds like u r like me I was in excellent shape except for my LTP. so I did well, covid was really bad when I had my TP so they were extremely cautious w/me and I did not get the vaccine. Have not gotten covid🤞🏻I do not get😊.
All I can say is the worse is the first 6 months, try be patient and u r going to be on a emotional roller coaster and that is why u have your TP to help u thru this and of course we will be here to support u to.
I am 2 years LTP and I have had some bumps in the road and I am doing well., I thank my donor for each and every day they gave me my second chance at life. It’s beautiful to have life again and not be sick all the time.
Hang in there.. day at time😊

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@feruj I can relate to your fears and desire for privacy, especially when liver disease happens or seems to happen suddenly. I’m about 16 months post liver transplant. I was diagnosed after having an episode of confusion/hepatic encephalopathy while driving. In retrospect I had symptoms I explained away for about a year but it was sudden to me. That was March, 2021 and I finally had my day long evaluation with the liver transplant team at MassGeneral in Boston. I was extremely afraid—I was very sick at that point and feared the unknown. However, my partner drove me to Boston from western mass, we stayed overnight in a hotel the night before and here is what happened the day of my evaluation:
1. We met with the nurse coordinator along with other patients for basic education, q&a. 2. Vitals taken and labs done. 3. I met with a hepatologist and a nurse. 4. Met with a social worker. 5. Met with a surgeon and medical director. 6. Met with nurse coordinator. All of this was in one office and providers came to me, I stayed in the same place. The next day I had phone/zoom meetings with a nutritionist, psychiatrist, and financial/insurance guru. All of this sounds intense, but it wasn’t; it was a relief and from there I had a plan. I was listed in September and had my transplant in October. Being hospitalized afterwards was healing and stressful but I got to come home and had Thanksgiving with my family, still in early recovery but feeling well and unbelievably happy. This is a very hard journey. But so worth it to reclaim your life and health. I waited about 10 months before returning to work- a new job as I had to leave my original one- and I’m working part time for a while. I plan to work full time in the fall. Before all this, I took no medicine, had only been hospitalized for appendicitis, and the birth of my daughter. This site has helped me a lot post transplant- feeling in company of others- and I wish I discovered it pre transplant. All care to you.

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@katebw

@feruj I can relate to your fears and desire for privacy, especially when liver disease happens or seems to happen suddenly. I’m about 16 months post liver transplant. I was diagnosed after having an episode of confusion/hepatic encephalopathy while driving. In retrospect I had symptoms I explained away for about a year but it was sudden to me. That was March, 2021 and I finally had my day long evaluation with the liver transplant team at MassGeneral in Boston. I was extremely afraid—I was very sick at that point and feared the unknown. However, my partner drove me to Boston from western mass, we stayed overnight in a hotel the night before and here is what happened the day of my evaluation:
1. We met with the nurse coordinator along with other patients for basic education, q&a. 2. Vitals taken and labs done. 3. I met with a hepatologist and a nurse. 4. Met with a social worker. 5. Met with a surgeon and medical director. 6. Met with nurse coordinator. All of this was in one office and providers came to me, I stayed in the same place. The next day I had phone/zoom meetings with a nutritionist, psychiatrist, and financial/insurance guru. All of this sounds intense, but it wasn’t; it was a relief and from there I had a plan. I was listed in September and had my transplant in October. Being hospitalized afterwards was healing and stressful but I got to come home and had Thanksgiving with my family, still in early recovery but feeling well and unbelievably happy. This is a very hard journey. But so worth it to reclaim your life and health. I waited about 10 months before returning to work- a new job as I had to leave my original one- and I’m working part time for a while. I plan to work full time in the fall. Before all this, I took no medicine, had only been hospitalized for appendicitis, and the birth of my daughter. This site has helped me a lot post transplant- feeling in company of others- and I wish I discovered it pre transplant. All care to you.

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Thanks @katebw I can’t explain how reading this just physically released some stress from my shoulders. That step by step is what I needed because I’m generally very even keeled during tough situations…but I didn’t know what questions to ask so I could arrange it properly.
Truthfully, I was aware that it was headed in this direction for years but since I am for all intents and purposes the only person I was responsible for; no kids or husband. I chose to ignore it and live my life doing what made me happy as long as it didn’t hurt or harm anyone…I’ve always worked social service jobs and volunteer a lot. I was carefree as my paycheck would allow. It was only after speaking to my Oncologist during our final meeting (it turned out I didn’t have cancer), that I decided to look into the transplant option.
I am so grateful for this forum and everyone here. These shared experiences are humbling and I now understand how fortunate I am to not be very sick.

It would be wrong of me not to apologize to God and the Universe and everyone here for what I treated so nonchalantly

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@myfablife

Hi feruj,
I had similar situation w/family I to am extremely private person to,my Dad felt he needed to let them know what was going on so he took it upon himself to tell them”what could I say he is my Dad😊 and loves me”
It all seem to work out fine and family was very concerned and supportive. U really need that when u r going thru this journey, u do not need any additional stresses.
My LTP journey was pretty urgent as I had portal hypertension, ascities, and the worse was hepatic encephalopathy which hospitalized me for a while. I experienced the itching and sleepless nights but that’s all part of it.
It’s not as bad as u think at least not for me. Yes u will need a caregiver but u will be able to do simple task for yourself, u will look like u have been thru a major surgery but just take it a day at a time it will get better.😊💚
Some people do so well they return back to work within 6 weeks and some need more time it a individual situation how u do, it sounds like u r like me I was in excellent shape except for my LTP. so I did well, covid was really bad when I had my TP so they were extremely cautious w/me and I did not get the vaccine. Have not gotten covid🤞🏻I do not get😊.
All I can say is the worse is the first 6 months, try be patient and u r going to be on a emotional roller coaster and that is why u have your TP to help u thru this and of course we will be here to support u to.
I am 2 years LTP and I have had some bumps in the road and I am doing well., I thank my donor for each and every day they gave me my second chance at life. It’s beautiful to have life again and not be sick all the time.
Hang in there.. day at time😊

Jump to this post

So inspiring. May I ask your age? I'm 66 and I ask myself, can I handle a TP psychology, as well as, physically.

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I am 62y/o and yes u can do it my friend..💚 it will be the best thing u ever did to live life again..

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@feruj, I am going to assume, from your comments and interactions, that you will be going for a 'consult/first visit. This is when you will meet the team and learn about their rolls, and they will get information from you about your medical history, update your medical records, access your current health status and take a blood test to measure your liver function. I saw that @katebw has already shared from her her experience what you might expect. Hopefully before you leave your appointment, you will learn whether you will be scheduled for a transplant evaluation to determine if you qualify to be placed on the transplant waiting list. As others have said, it is a long, yet a thorough process.

When I had my first consult at home in KY. I only knew that I had to fast because they would want a blood sample. I was surprised at the vast amount of knowledge that was shared, and I came home with a stack of information to read! By way of background, I had been under the care of a GI and liver specialist for 8 years with a progressive liver disease, so when the attending surgeon said that I would need a liver, 'soon', I was terrified. My husband and I cried that evening. That was 20 years ago. I could never have imagined that I would be writing this today!

Please be sure that your husband goes with you. And take a notebook and a pen for writing down information.
Share with friends and relatives, only what you are comfortable with sharing! Don't be alarmed at the amount of false information and cures that well-meaning loved ones will want to share.

When is your appointment? Will you be a t Mayo or elsewhere?

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