Would be interested to hear others experience with incisional hernia after liver transplant. Thank you.
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@gaylea1, I'm happy that you have joined this discussion, but I'm sorry to hear the reason that you have joined. Are the sites on your abdomen painful for you? Will the surgeon be examining you to see if you will have surgery? Or is the upcoming appointment for surgery?
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It is a bit painful but mostly terribly uncomfortable right now. The lumps are quite large and a bit scary. I was in emerg last week and they made the referral. The upcoming appointment is a consult but I've had a catcscan and ultrasound conducted.
Not sure if you recall but I had a blocked bile duct after surgery and underwent 5 ERCP's (all resulting in 10-14 days stay in hospital due to pancreatitis). I even had a tube inserted directly to drain the bile for a month or so. The catscan has once more discovered a blocked duct. More dreaded ERCP's in the future along with the hernia surgery. I haven't had a break since day one. I've had skin cancer removed surgically twice, shingles, blocked ducts etc. I'm tired after 3 years from the initial surgery.
@gaylea1, I have wondered about you after your liver transplant and the complex issues that you were experiencing. I wish that this opportunity to catch up with you would be a procedure free conversation. But around these transplant coffee sipping discussions, we know that anything and everything is possible. We are stronger together because we are each walking a unique path together. Ironic isn't it?
Do you know that I can still remember getting a response from you in one of the Mayo Connect Transplant discussions when you announced that you had "Received the Call and were headed to the hospital to get your transplant"! It still gives me chills to think about that moment.
I want to introduce you to @kathycaudle, @melody12, @jackie421blfdgurl, who have shared their experiences. Each has had a different abdominal bulging problem, and each has had a different medical diagnosis and care.
Kathy, Jackie, Melody, I think that @gaylea1 needs us to lend an ear and to be with her during this ugly time that she is facing. What would you like to share with her from your experience that helped you to look forward during your struggle? How did you manage the discomfort, the surgery, the anxiety, and the pain?
@rosemarya I remember telling you right when the call came. I was so excited after the two long grueling years waiting for it. You and the group were my lifeline during that time. I'm so happy that I'm still able to connect with all my ongoing issues. Your support is so much appreciated.
Hi Rosemary…thanks for your concern. I was diagnosed in 2014 with non alcoholic cirrhosis, after years of being treated for GERD, stomach issues, etc. In 2016 I developed liver cancer. In January 2019 the tumor had grown enough to do something…the only answer for me to live was a transplant. I live in California and have Kaiser insurance. Kaiser doesn't do transplants so they sent me to Mayo Jacksonville…which was a true blessing. Other than many MRI'S, CT'S ,labs and nearly 30 ED'S I was basically asymptomatic. I received my transplant 11/19…all went great.
I came back home in January 2020. Three weeks after coming home I got very sick..bronchitis ,sinusitis, laryngitis…coughing day & night for several weeks,which was the start of my hernia. Because of all the antibiotics I developed C-def, later severe constipation… that's where I'm at with the hernia.
26 months post and I still have some issues, but overall feel good and very blessed to be alive. My appt with my PCP is next week…I really want his opinion. I'm hoping he can gaze into a crystal ball and advise me to go with surgery or just live my life as best I can.
Back in January 2019, the choice was simple..I wanted to live, the only way was a transplant. Now is somewhat different, can I live as I am with this growth inside & outside my body or as I get older will my chances of survival get less. I'm open for any advise.
Hello..Jackie here. I can tell u I am glad I had my hernia out.but I also had a plastic surgeon wk on me putting in two layers of merch. The other Dr. Did the hernia. I was in for one week. I also got c-dif..dam! I had severe dirreaha
That lasted for 5 mo's. They gave me antibiotics but may b
Not long enough! After that time saw my gastro Dr. I am now gluten free and no dirreaha..Yahoo!! I still have to wear a tight girdle band around my stomach, makes it feel better.my surgery was in June 2020. The more we put something off the worse it gets, surgery was routine I was out in 3 hrs,but I was nervous since my transplant was something from another planet!! Don't ever want to go there again..good luck let us know what happens..you are all in my prayers
@gaylea1 Hi..my experience with prior to transplant was basically asymptomatic other than esophageal varices and banding 20+ times. I was diagnosed 2014 with NASH, 2016 liver cancer,then 2019 need transplant. I received my blessed liver 11/19 from Mayo Clinic Jacksonville. After returning home in Jan 2020 I got very sick with severe bronchitis, laryngitis, sinusitis…coughed for 4-6 weeks which started my hernia right side just below my breast. It's now the size of a honey dew melon. I've talked with my transplant Dr, saw a surgeon and saw my PCP…the consensus is as long as it's not causing me pain or discomfort, no vomiting or fever leave it alone…I've never had a 'twiggy' body, I'll be 73 in July…I don't like it being there, but I can live with it.
I pray you'll find the right outcome for you and find some relief.🙏💚
@kathycaudle, I want to believe that you are feeling some relief after getting a similar response from the surgeon and your PCP. And I also suspect that you feel some disappointment that this will be an ongoing issue. I think that you are extremely fortunate to have a PCP who knows you and your transplant history.
You don't like it being there, but you have already learned to live with it, and will continue to do the same while living your life. Kathy, now that you have had both doctors giving you the same response, have you felt encouragement to do anything different with your day-to-day activities.
What did either doctor tell you to do if you develop, vomiting, or fever?
Do you have any long term plans, that you delayed due to the hernia diagnosis, that you want to 'reactivate'?
Hi Rosemary…yes I have alot of trust with my PCP. Should I start feeling any pain, fever or vomiting immediately go to the ER…period. As with everyone else in this 'covid' world I'm trying to adjust my life, doing the best I can to live as normal a life as possible, yet stay safe so I can live. My family is everything to me…blended family with 7 children, 4 in laws, 16 grandchildren, 3 great granddaughters…they are the reason I live.
Kathy, I like the plan. I especially like the time with family! That is my favorite, too. I think you and i could easily sip tea together on a nice afternoon. But in the meantime, we can enjoy time together here on Connect! Where do you want to meet next- Which discussion group looks like a good place to share our experiences and support others?
@gaylea1, Another thing that I remember, is that you were interested in diamond painting (I think that is what it is called). Anyway, I got a small kit for my granddaughter last year for Christmas. It was a bit too 'controlled' for her as she is a free spirited little darling and wanted to do it 'her way. Her mom eventually finished it! It is very pretty. Did you ever stop trembling so that you could complete one?
I want to continue our conversation by saying that I hope that you will be provided with some pain relief. Do you know when you will get in to see a surgeon? Is he/she going to be in collaboration with your transplant team?
@rosemarya I haven't done any diamond painting since 2019 😌The trembling did eventually stop though. I have a consult with the surgeon (a woman yay!) on Mar 30th (I am on a cancellation list though). My transplant team is aware of what is going on. All surgeries aside from emergencies have been put on hold due to covid and lockdown. They said take tylenol for the pain. I bought a hernia belt to wear and it helps to a certain degree. I was supposed to gave an MRI this morning but we got hit pretty hard yesterday in Ontario with a blizzard and I'm snowed in until the plow comes.
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