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davidgenebarnes
@davidgenebarnes

Posts: 44
Joined: Dec 13, 2016

Hep C

Posted by @davidgenebarnes, Aug 2, 2017

I am a Liver pre-transplant candidate. Mayo called me and had me start Hep shots. Yet not a single doctor told me I had Hep of any kind. Is this a precautionary monthly shot? I was tested in November of last year by my Family doctor and it came back negative.
hmmmm?

REPLY

@davebarnes, I can understand your, “hmmmm”. It can get confusing for us patients. and also confusing, it seems, for our family doctors. I remember that I had some hepatitis shots and other shots somewhere during the time that I was diagnosed with my liver disease. I do not know what all they were. I learned that they are given for our protection as a prevention for when we get that transplant. Some of the injections cannot be given after a transplant and they have to happen ahead of time.
With liver disease and transplant, the transplant doctors look much more carefully into things that family doctors do not have training and expertise in – a higher degree of specialty and level of care is needed now. It is possible that they saw a need, or it might be routine protocol for pre transplant. Only your team knows this answer.
Also, it is not unusual for the Mayo to call you between visits to request another test or procedure or labs.
I am happy to hear that you are being taken care of 🙂
How are you feeling these days?
Rosemary

Hi Rosemary,
Thank you for your information. I have been blessed with three good days. Saturday and Sunday is a different story as I was in much pain, very weak and was bleeding internally. Better now.
Thanks again.
Dave

@davidgenebarnes

Hi Rosemary,
Thank you for your information. I have been blessed with three good days. Saturday and Sunday is a different story as I was in much pain, very weak and was bleeding internally. Better now.
Thanks again.
Dave

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@davebarnes, . I am happy for you to have had 3 good days! And glad to hear that you are feeling better. I am here anytime that you want to visit or just to chat, or even gripe.
I remember clearly that there are both good days and bad days, and even good moments and bad moments throughout the journey to transplant. And even though our diseases can be different, we all have this roller-coaster experience. Try to take some comfort in knowing that you are not alone.
One of my sweetest memories when I was very ill, was to perch myself on our couch which is in a sunny window. I was always freezing cold, and the warmth of the sun was a blessing that I looked forward to every sunny day. Just like a kitty cat, I enjoyed those naps.
Wishing you good days,
Rosemary

@rosemarya

@davebarnes, I can understand your, “hmmmm”. It can get confusing for us patients. and also confusing, it seems, for our family doctors. I remember that I had some hepatitis shots and other shots somewhere during the time that I was diagnosed with my liver disease. I do not know what all they were. I learned that they are given for our protection as a prevention for when we get that transplant. Some of the injections cannot be given after a transplant and they have to happen ahead of time.
With liver disease and transplant, the transplant doctors look much more carefully into things that family doctors do not have training and expertise in – a higher degree of specialty and level of care is needed now. It is possible that they saw a need, or it might be routine protocol for pre transplant. Only your team knows this answer.
Also, it is not unusual for the Mayo to call you between visits to request another test or procedure or labs.
I am happy to hear that you are being taken care of 🙂
How are you feeling these days?
Rosemary

Jump to this post

Good Morning Rosemarry, It turns out the Hep shots are only precautionary sand I don’t have it. 🙂

@davidgenebarnes

Hi Rosemary,
Thank you for your information. I have been blessed with three good days. Saturday and Sunday is a different story as I was in much pain, very weak and was bleeding internally. Better now.
Thanks again.
Dave

Jump to this post

I had to go back in to ER as I was very dizzy and thought I was bleeding internally again. Turns out, while my BM was red, it wasn’t blood. They said it was most likely from the many fruit pop cycles I have.

@rosemarya

@davebarnes, I can understand your, “hmmmm”. It can get confusing for us patients. and also confusing, it seems, for our family doctors. I remember that I had some hepatitis shots and other shots somewhere during the time that I was diagnosed with my liver disease. I do not know what all they were. I learned that they are given for our protection as a prevention for when we get that transplant. Some of the injections cannot be given after a transplant and they have to happen ahead of time.
With liver disease and transplant, the transplant doctors look much more carefully into things that family doctors do not have training and expertise in – a higher degree of specialty and level of care is needed now. It is possible that they saw a need, or it might be routine protocol for pre transplant. Only your team knows this answer.
Also, it is not unusual for the Mayo to call you between visits to request another test or procedure or labs.
I am happy to hear that you are being taken care of 🙂
How are you feeling these days?
Rosemary

Jump to this post

@davebarnes, Hi Dave, thanks for checking in. That solves your puzzle of why your family doctor was not concerned!

Dave, are you familiar with the Transplant Pages? I would like to this valuable resource with you. I think you will see some helpful information.
https://connect.mayoclinic.org/page/transplant/

Rosemary

@davidgenebarnes

Hi Rosemary,
Thank you for your information. I have been blessed with three good days. Saturday and Sunday is a different story as I was in much pain, very weak and was bleeding internally. Better now.
Thanks again.
Dave

Jump to this post

@davebarnes, You did the right thing by getting checked. That must have been really frightening for you – and a relief when it was diagnosed.
Prior to being sent to Mayo, I was a regular at local ER. It was not long until I was on first name ‘friendship’ with the staff.
Keep on keeping on! And stay in touch.
Rosemary

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

Good Morning, Dave. Thank you for sharing this. You are another step in the right direction. I will be thinking of you.

Your words ‘hurry up and wait’ are perfect! I am sorry that you are feeling worse, but unfortunately that is the way it works. Keep on with the positive thoughts. And take it one day at a time.
Dave, if your wife ever wants support or information as caregiver, tell her she is more than welcome here.

I am happy for you.
Rosemary

Liked by davidgenebarnes

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

Thanks Rosemary, I sent my Wife your response to see if she would like to jump in. She has been a true blessing!

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

@davebarnes – So happy to hear that! It’s an odd thing to say congratulations for but I’m glad you are on the road to get what you need.

Lynn

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

Hi Dave @davebarnes

That is good news – will pray that you will have symptom control and peace of mind during the “waiting period” and that your transplant is most successful!

What is the worst symptom you are experiencing now?

Teresa

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

Good Morning Teresa,
I have two symptoms that rule my life. The first is lack of energy and a feeling of pain. The second is the negative thoughts that accompanies it. I go through a big pity-party and a feeling that my life is at or near the end. Unfortunately my Wife receives much of these thoughts. Sometimes I can take a pain pill and it goes away, but more often it doesn’t. I learned on Friday that while Mayo has authorized me being put on the list, my insurance company has not. This only helped my crappy thoughts over the weekend. Well, its a new week, I am at work and my Wife is flying in on Friday to see me. Something to look forward to.
Best wishes to you this week as well.
Dave

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

Hi Dave @davebarnes

Lack of energy and pain can certainly set any of us up for negative thoughts – and your reaction is certainly understandable. Are there any support groups for pre or post transplant patients.? It would probably be helpful to have some others to talk with.

I am sorry to hear that your insurance company is balking at your plans – how unfortunate. We will pray and hope that this problem resolves itself quickly!

Will you keep in touch with us?

Teresa

@davidgenebarnes

Good Morning all.
I am happy to report that as of yesterday I am officially on the transplant list ! Now it is hurry up and wait.
Have to say, this is the only good news I have right now. I feel my condition has worsen this past few weeks.

Jump to this post

@davebarnes, Hi Dave, I do hope that you get approval from your insurance company, soon. Waiting for a transplant is stressful enough already.

I found my best support came from my husband, and from my friends who were cancer survivors. I could talk to my cancer friends openly about difficult thoughts about life and fears of dying. They understand because they had the same thoughts and fears. My husband and I talked, and prayed often. We agreed that we would not hold back any thoughts, no matter how trivial or troubling they felt. We made a decision to ‘never cry alone’; we spent many moments holding onto each other and crying together.

Dave, it is hard to be positive when you are feeling so poorly. This is something for you to bring up with a transplant social worker.

Rosemary

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