Post Liver transplant story

Posted by amyintucson @amyintucson, Fri, Mar 1 12:30am

Today it's 2 months post-transplant – time flies when you are having fun! I'm still on the weekly blood test and monthly liver ultrasound regimen. The liver has shown improvement in function but blood tests have remained mostly the same, continuing the anemia and kidney issues.

I received the call at 5:15 AM on December 28. The offer was a high risk liver – cardiac death donor who was Hep-C and Epstein Barr positive (I was negative on both.) We arrived at Mayo at 9:30 AM to begin prep. They hoped to do the surgery at 3:00 pm but the donor's family had not yet authorized the removal of life support system – I know that had to be an emotional time for all of them. Folks have wondered how you might be in a situation where you got the call and had to go back home. This was a situation where that could have happened but thankfully the dominoes fell into place. Surgery began around 6:00 PM and ended around 11:30 PM. My husband is keeping the text sent from the OR that said "old liver out, new one going in". Until after I saw the surgical report, I never knew that I did not have a gall bladder anymore – I somehow missed that in all my reading. The pathology report was interesting – I had a liver biopsy 11 years ago at UPenn (I was living in NJ at the time) that showed Sarcoidosis in the liver but upon review post-surgery I had nodular regenerative hyperplasia and not cirrhosis with no Sarcoidosis present. They assured me that the liver transplant was needed – my liver was toast. The disease has the same symptoms as cirrhosis – portal hypertension and esophageal varices. Dr. Aqel showed me a picture of my old liver – it looked like bad meat – as well as a picture they took after the new liver went in, which was cool. It is probably the only time you can see what the inside of your body looks like.

I woke up the day after surgery around Noon in ICU – my husband said I struggled a bit earlier when they removed the breathing tube, but thankfully I remember none of it. That afternoon they had me up and walking and I was sent to a step down room early the next morning. I was doing so well that they contemplating sending me home after 4 days, but that morning's blood work showed a sudden decrease in the kidney function that kept me at the hospital for 11 days. I roamed the hallways around the nurse's station a few times each day, which helped me keep sane! Food smells and taste were a problem, so they let my husband bring in food from the outside after one of my surgeons said it was OK – I never ate hospital food after day 2. When I was at the Liver Support Group meeting in Phoenix, I told that story and one of the prior liver recipients commented that they wish they had my doctor! Surgical staples – I had 70 – were removed after 3.5 weeks. I wanted to keep the staples as I plan to include them in an art project when I feel better. After hospital discharge, we stayed at the Residence Inn on the Mayo campus for about 2-3 weeks until I was discharged from the clinic.

Just to make things interesting, my medical coverage changed on January 1 – not my choice as the provider moved everyone to the new plan. When I checked in, I gave them the cards for my then insurance plan as well as the one that would start on the 1st and let them handle it. It caused some confusion with early prescriptions but that resolved eventually. Medicine changes have happened regularly since, keeping hubby on his toes as he prepares my meds. On a positive note, after 1 month of treatment, the HEP-C virus I acquired via the liver transplant is now undetected in my system. I still have 2 more months of treatment followed by 3 more months of testing before they will consider me cured, but I can handle that. I am blessed to have good insurance – the monthly wholesale price of the HEP-C medicine is $13,000 (I only paid $150). We need a better heath care system.

I know I am one of the lucky ones who got a liver transplant – many are not eligible or die while waiting. I am grateful for the care I received from my Tucson GI doctor, Cristiana Bortuzzo, over the past 8 years keeping me healthy and the Mayo team over the last 2 years while on the transplant list. I wish that everyone who has a serious health issue could be cared for at a place like Mayo.

If anyone awaiting liver transplant has any questions, I'll be happy to try and answer them from my perspective.

Amy, Congratulations!
I am happy to hear of your experience. I know that you have had a difficult journey, and your effort and dedication have proven to be your strength. Thank you for returning and sharing on Connect, and Thank you for the donor who has given a new life to you.

Looking back, is there anything that you wish you would have known prior to your surgery that would have been helpful to you, or to your husband?
I look forward to learning more of your perspective and experience.

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@amyintucson Hi Amy. Congratulations on your transplant. I'm happy to hear that you are feeling well, and that the HEP-C is now undetectable. It's great that they now can transplant those livers and cure it afterward. I too did not get any calls that were fruitless, the only call I got was for the actual transplant. I am surprised that they called you prior to the donor's family authorizing the removal of the life support system, but thankfully they did and all went well. It sounds as if everything is moving forward very positively for you now. It's such a relief to have that over, isn't it?
My transplant was in September 2016. I never saw pictures of my old liver but from what I was told it was in similar shape. They said it was pretty much spent. They also discovered that the ablation to remove the malignant lesions had missed one right on the edge of my liver so now I have to go to for MRIs yearly to make sure it has not metastasized. They try to be very careful when close to the edge of the organ because they don't want to effect other organs. They actually pump air or liquid in there to provide some space between things.
The hospital food at Mass General (MGH) was bad too, even one of the doctors agreed with me on that, but I never asked if my husband could bring other food in for me. I doubt they would have allowed that because I am also mildly diabetic. MGH was great too, I love that hospital. It seems to me that most of the transplant centers must be great because I have never heard a complaint about any of them.
Wow, you had more stapes than I did! I had around 50, my incision is the chevron type and about 25" in length. When I found it was the chevron, not the Mercedes type, I told my surgeon I was disappointed because that the only chance I would ever have to have a Mercedes.
What will you do with the staples?
JK

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@contentandwell – The family of the donor had already agreed to the donation, but wanted to gather for a final goodbye. Life support was supposed to turned off at Noon AZ time, but I think it was delayed based on the surgery time change. They told me that the donor was male and 40 yrs of age, so I joke that I have a younger man in my life (I'm 57 yrs old)! My glucose went high with the Prednisone I am taking, but my diet was unrestricted. Hate having to use insulin again, but I'm on the Prednisone taper and things are getting better.

My scar is only 18" but the staples were pretty close together. When I was healthy I used to create kiln-formed glass art so I hope to use some glass pieces to surround the staples which I will lay out in a path – symbolizing the journey from health to illness to health. Still not able to focus enough to work with glass,but I'm in no rush.

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@amyintucson

@contentandwell – The family of the donor had already agreed to the donation, but wanted to gather for a final goodbye. Life support was supposed to turned off at Noon AZ time, but I think it was delayed based on the surgery time change. They told me that the donor was male and 40 yrs of age, so I joke that I have a younger man in my life (I'm 57 yrs old)! My glucose went high with the Prednisone I am taking, but my diet was unrestricted. Hate having to use insulin again, but I'm on the Prednisone taper and things are getting better.

My scar is only 18" but the staples were pretty close together. When I was healthy I used to create kiln-formed glass art so I hope to use some glass pieces to surround the staples which I will lay out in a path – symbolizing the journey from health to illness to health. Still not able to focus enough to work with glass,but I'm in no rush.

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@amyintucson I hope when you do create your glass art using the staples that you will post a picture here on Connect. I would love to see it. It never even occurred to me to ask for the staples. They were not painful but I was glad to have them gone because that was a step forward in recovery.
I figure that I am much younger too, my donor would be 36 now. Many people do think that we are affected in ways by who the new organ was once a part of. I don't think I subscribe to that. I actually have wondered if she may have had IBS though because I seem to have developed that since the transplant. I think that the immunosuppressants can affect some people that way though, so I am sure it is that.
I hope you continue to do well and that your recovery is basically done at this point. I consider each day to be a gift now. I realize how fortunate I was to get a liver, it was in the "nick of time".
JK

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@amyintucson Congratulation on the transplant. I was transplanted about 6 months before you in PHX as well (Banner, not Mayo). It's interesting to hear of others' incisions. Mine is around 10-12 inches just on the liver side, essentially a half chevron. And I never had stitches or staples, just glue. 3 weeks post-transplant, I had a hernia repair with about a 6 inch incision. Once again, no stitches or staples, just glue. I wonder why they use stitches/staples in some instances and glue in others.

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@mickj

@amyintucson Congratulation on the transplant. I was transplanted about 6 months before you in PHX as well (Banner, not Mayo). It's interesting to hear of others' incisions. Mine is around 10-12 inches just on the liver side, essentially a half chevron. And I never had stitches or staples, just glue. 3 weeks post-transplant, I had a hernia repair with about a 6 inch incision. Once again, no stitches or staples, just glue. I wonder why they use stitches/staples in some instances and glue in others.

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@mickj From what I have read the type of incision is usually a doctor preference although in some cases there is something that dictates which type is best. I am sure what they use for closing the incision is also a doctor preference. I had glue on an incision from a TKR.
JK

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@mickj

@amyintucson Congratulation on the transplant. I was transplanted about 6 months before you in PHX as well (Banner, not Mayo). It's interesting to hear of others' incisions. Mine is around 10-12 inches just on the liver side, essentially a half chevron. And I never had stitches or staples, just glue. 3 weeks post-transplant, I had a hernia repair with about a 6 inch incision. Once again, no stitches or staples, just glue. I wonder why they use stitches/staples in some instances and glue in others.

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@mickj -Can you tell me why you chose Banner over Mayo? What kind of follow-up are they doing? How long were you in the hospital? It is interesting to hear how other hospitals treat the same condition.

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@rosemarya

Amy, Congratulations!
I am happy to hear of your experience. I know that you have had a difficult journey, and your effort and dedication have proven to be your strength. Thank you for returning and sharing on Connect, and Thank you for the donor who has given a new life to you.

Looking back, is there anything that you wish you would have known prior to your surgery that would have been helpful to you, or to your husband?
I look forward to learning more of your perspective and experience.

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What do I wish I had known ahead of time?
-While I was in the hospital, they weighed me each day and I couldn't believe that I was gaining weight (up 15 lbs from when I was admitted), especially as I was eating very little. I probably spent way too much time worrying about it instead of resting. The nurses tried to reassure me that it was water and would go away, which of course it did.
-I never realized the connection between the liver and kidney – that I could have kidney problems post surgery. When my GFR went to 20 they were talking about the possibility of dialysis but it did start moving back up. It's still low and I am concerned but they are monitoring it.
-We were under the impression that once released from the hospital we would need to be in the area for another 4-6 weeks. Turned out including the hospital stay, we were away from our Tucson home for 1-month. Don't get me wrong, I was thrilled to get back home and I am glad we chose to stay at the Residence Inn on the Mayo campus. If we had done a short-term apartment rental, we would have paid for at least a 2-month stay and paid out more money – the hotel was on a day-by-day basis.

Amy

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I am 3 years out on my liver transplant and last months labs were the first time every thing fell into the normal range. After my surgery I asked my post transplant coordinator if she would send me pictures of my old liver. You are dead on in your description of the removed liver. I described mine as looking like a piece of round steak that had been left out on the counter. But as you mentioned I didn’t realize the gall bladder came out also. But this was glaringly evident once I saw the pictures.

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Amy, As I read your post about your post tranplant surgery and recovery, I bgan thinking about my own recovery. And I remembered my wheelchair ride to my room while sipping on a vanilla milk shake. For me, foods tasted good again, and I could even enjoy the smell of coffee again. My first meal was hospital toast and a cup of coffee that my husband brought in for me. In my mind (at that time) it was the best meal of my life! Thank you Amy, for refreshing that happy memory in my mind.

I was not ready to see or hear anything about my liver, except to just know that the new one was working for me, along with a new kidney. I did read later, in my patient portal about the state of my own liver. And that was too much information for me to handle.
On day 20 I was discharged from outpatient care to return home (800 miles)and I still had one drain tube in my abdomen. It was not draining so it was taped shut, but was not ready to come out until the internal stitch dissolved.
My liver incision is a picture perfect mercedes shaped scar. I remember that I had counted the number of staples so that I could count down as they were removed. Now, I forget how many I had.
I was also told that we should plan on 4-6 weeks, but since we were already 'residing' in Rochester at the Gift of Life House for 8 weeks prior to transplant, that was not going to be any issue for us.
What a relief it must have been when your kidneys began to recover after your surgery! I don't know how often that happens. For myself, with a new kidney, I was being monitored and given IV fluids to keep my new kidney well hydrated. I was really afraid when I was slowly weaned from those supplmental fluids and had to be responsible to drink enough fluids on my own. Happy ending is that it is working well, and my liver and kidney teams keep a close eye on it.
My routine labs are at 3 month intervals now, and they are drawn locally.
I like the ease of the patient portal for communication with my nurse coordinator.
I hope that you know about the 24/7 phone contact to Mayo. I have found it to be extremely helpful, especially after hours or weekends when I have developed worrisome symptoms.
Amy, I am happy to hear how well you are doing. Your strength and your endurance will return over time. My advise, is to allow yourself time to rest and recover gently. I will be looking forward to hearing about your return to your glasswork.

If you have any questions, I welcome them.

@des46893, @mick, @contentandwell, @amyintucson
Here is a link to the Transplant Pages. I think that the Newsfeed section will be both helpful and intersting to you. You can scroll thru and find articles from the transplant staff on topice such as: weight gain post transplant, partnership between local and transplant doctors, self care tips for transplant, and maybe some familiar faces. There is also a place to post questions and comments. https://connect.mayoclinic.org/page/transplant/

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@des46893

I am 3 years out on my liver transplant and last months labs were the first time every thing fell into the normal range. After my surgery I asked my post transplant coordinator if she would send me pictures of my old liver. You are dead on in your description of the removed liver. I described mine as looking like a piece of round steak that had been left out on the counter. But as you mentioned I didn’t realize the gall bladder came out also. But this was glaringly evident once I saw the pictures.

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@des46893, I'm doing a happy dance for your normal labs!
I had heard of other liver patients talking about seeing their removed livers but I was too uncomfortable with even thinking about the surgery itself. When I told this to my surgeon, she told me that I just had to show up; she was absolutely correct!
I also did not know about the gall bladder removal until I read about it in my patient portal.
Thank you for sharing. I feel so blessed every day for my transplant and for people like you who are walking the same journey.

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@mickj

@amyintucson Congratulation on the transplant. I was transplanted about 6 months before you in PHX as well (Banner, not Mayo). It's interesting to hear of others' incisions. Mine is around 10-12 inches just on the liver side, essentially a half chevron. And I never had stitches or staples, just glue. 3 weeks post-transplant, I had a hernia repair with about a 6 inch incision. Once again, no stitches or staples, just glue. I wonder why they use stitches/staples in some instances and glue in others.

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Hi, @micki. I had staples for the transplant, and glue for a hernia repair the following year. The glue is so much easier for taking a shower!

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@amyintucson

@mickj -Can you tell me why you chose Banner over Mayo? What kind of follow-up are they doing? How long were you in the hospital? It is interesting to hear how other hospitals treat the same condition.

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@amyintucson My transplant @Banner was driven 100% by my insurance plan. That being said, I have nothing but great things to say about my care with that team, both pre and post transplant. I was in the hospital for 5 days.

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