I know I’ve been away from the blogging world, which is not a sign I have been writing or editing. I’ve been busy and very distracted. As the title states, I had major surgery Mar. 28th of this year. I got less than a weeks notice and jumped on it because I have been waiting for some sort of relief of pain since Nov. 2011 when I was first diagnosed with Focal Nodular Hyperplasia (FNH), a benign tumour, in the right side of my liver.
Since I was diagnosed with this I had to stop exercising, started taking strong pain medications, clearly had to stop drinking and it basically altered my way of living, which caused my hubby’s way of living to change as well.
The surgery went great as far as I know. The morning of was tough, had to be there at 6am to check in. My mom showed up, started to cry and laugh. Somewhat out of fear, but mainly out of joy. Seeing her cry made me cry. We’ve all been through a lot, not just family but friends and coworkers of both my hubby and me. It was a relief.
I was brought into the OR just after 8am feeling confident. I received an epidural about mid-way through my back. Absolutely amazing thing. Yes, I was a little high, but still I made people smile and was reassured because everyone was confident.
My surgery was roughly 5.5 hours. I lost 3 litres of blood, causing me to get several blood transfusions. Otherwise, the surgery went great. I lost my entire right side of my liver, roughly 60-70% of my liver, my gallbladder and only 1 out of my 3 main veins, originally it was supposed to be 2. The believed cause of my pain was the FNH was pushing on my one vein and several nerves.
The only hospital complication I had was my epidural malfunctioned several times, causing me to cry in agony the day after surgery, otherwise it went pretty well. The nurses were amazing and they let my hubby do a bunch for me to help out. I was released from hospital Apr. 3rd and then complications set in.
On Apr. 7th, when my hubby and I were changing some of the falling apart medi-strips or steri-strips, like we were told to do so bacteria doesn’t set in, part of my incision on my right hand side opened up. We called the surgeon and was told to put more strips on it and place gauze over it and to wait to see him on Apr. 10th.
We saw him Apr. 10th, where the wound was roughly 5cm long and 1cm wide. He informed us this could happen and is called wound dehiscence. It was nothing to worry about and sent us on our way.
Within 48 hours (Apr. 12th), we had a close friend over and she noticed one of my strips around the bandage placed over my wound looked strange. I lifted part of the bandage to get a better look and saw that it looked green. I peeled off the bandage to check and saw that my wound was severely infected. She rushed my hubby and me to the hospital I had surgery at (roughly 1 hour away from my home). We had called the surgeon twice with no call back. Luckily I got seen by several of his interns. Unfortunately, they had to poke and prod and told me they could see to my muscles in one small hole, but it was not infected internally, only topographical. The wound had grow to 10cm long and 1.5cm wide at the widest point (the rest of the incision on my right hand side had split open). They cleaned me, patched me up enough to be sent home to receive homecare after it was approved by my surgeon.
As of now the infection has cleared and I am getting great treatment. I am sorry about the graphic photos but this is what I’ve been dealing with personally and my family and friends have been witnessing. Honestly, without such great people helping me stay positive I wouldn’t be doing so well. Yes, my scar is going to be bigger and uglier, but I’ll be better and they won’t judge me. For those suffering with FNH it’s a struggle to get treatment and the recovery is just as hard. Other than my wound I feel fantastic, better than I have in over a year. This is my struggle as a Canadian, so I hope it helps others from Canada and around the world.
Anyone struggling with FNH or wants more information feel free to email me at: meganheld@live.ca
Once again, I cannot thank my hubby, family, friends and coworkers of both my hubby and me. Amazing support, laughs and positivity. Without any of you this would not have been as easy to deal with. My recovery is going great because even if it hurts, I still laugh and smile. I owe you all so much…even if the mocking has come to an end (I was really moody/hormonal) I knew it was out of love and to make sure depression never plagued me.
11 comments:
Hi, my sister just had this sugery, she had her surgery on September 11, 2013. She has had a setback regarding her recovery a week after surgery, it was an infection. They had to re-insert the drainage tube. Now the date is October 2, 2013. She is still on antiboitics, her last dose of that was today. She still feels awful, its been 22 days since her surgery...is this normal ? She still has zero appitite, shes down to 100 pounds. She just is so frail and not feeling any better.
Lack of appetite can happen. What is best to do is try doing small meals more often. If there is the option to have drinks such as Ensure (nutrient and protein rich drinks) that should help her gain some weight back. In order for her to get better she needs to eat and get up and move around. Start off with bland food: oatmeal, yogurt, eggs, rice, toast/bread. Sorry for the delay.
Hello Megan,
I was recently diagnosed with FNH (2 tumors.) I'm wondering what size your tumor was? Why did you decide on surgery? Was the surgery based purely on symptoms? I'm nervous about having surgery and wondering if it is worth waiting 4 months to do another scan to see if it's regressing, growing or maintaining size. I do have pain daily, the levels of pain change day to day. Just hoping I can open up and find out more from your experience.
Looking forward to your response. Michelle
Hi Michelle,
My tumor size was 6cm by 8 cm. The pain varied by my daily activities. I decided on surgery because I was taking such strong pain medication just to function and my activities were limited because I wasn't able to do as much as I used to. I had 3 MRI's before getting to see a specialist. I had to run tests on the different organs around my liver to determine if the pain was caused by something else. When those all came back negative I was given the choice to have the surgery or not, knowing the risks and there being a chance that it may not heal my symptoms. I even tried changing around my birth control and stopping it all together to see if it would help.
When I had my surgery I found out that it was attached to my right vein and pinching off my middle vein in my liver and that is the reason for pain. I would suggest getting the test in 4 months, but asking your doctor if running tests on other organs can help your chance of narrowing down where the pain is coming from.
Hope that helped. You can email me anytime if you want to know more or share more about your experience at: meganheld@live.ca
Thank you Megan. I'll be sending you an email soon...! Michelle
Hi Megan,
I also was diagnosed last October with an FNH tumour (5.5 cm by 3cm). I've had to stop running and all other forms of exercise due to pain. I had to insist on seeing a gastro doctor since my GP kept saying that liver tumours don't hurt and it's all in my head. Did you have the same experience and how hard did you have to push to get help for you symptoms?
thank you,
Anne
Yes I did. They just thought I was having constant runners cramp until it got so bad they thought it was my gallbladder. When you see the Gastro discuss meeting with a liver specialist. It is difficult to give up a daily routine due to pain. The reason I had pain was because it was attached to a vein and pinching off another one. Talk to the Gastro about running some tests to help make meeting a liver specialist easy and less likely they will reject you (my liver specialist did that until I ran 7 tests). Hope that helps. If not, keep asking.
Thank you very much for the information. Hopefully I can get some help. I lost 45lbs over 3 years ago and running has been very important in maintaining my weight!
Anne
FNH. Hi all. Am in an Australian capital city. Sharing info in case it helps. My tumour 6cm round, pressing on main hepatic artery; difficult surgery, brilliant surgeon. Would have gone cancerous if left. it took decades to find, and was located during removal of ovaries with a laparascopic camera. (Years of orthodox xrays and ultra sounds had missed it.) Was removed April 11, I finally got out of hospital mid. June. Complication with the drain - a staph. infection set in at the point of drain entry.( treated with three 5 day courses of Moxy floxacin; had 1st dose at 3weeks after op; 2nd lot 2mnths after op;). Had a drain for 2 months - am still in recovery and pain on October, but am much healthier and my skin is a different colour. I look healthy now! And I am going to live! Despite not being able to drink alcohol and eating very carefully, I can at last, breath deeply again! Cannot tolerate much sugar or coffee. (Makes me feel like I have a hangover next day). Operation took 7 hrs, removed 6cm tumour, + my gall bladder,+ second apple sized small tumour + 2cm strip of liver.right side. Previously had a lot of food allergies, and have been diagnosed with a range of gastric disorders in the last three decades. Now I find I am able to start reducing the medications I take for my chronic angio oedema ( it was always worse in my abdomen). I required strong narcotic painkillers for two months after operation- I could tolerate Fentanyl in high doses ( neded it in the ambulance when transported back to hospital - ambos gave 225 mg in 15 minute journey) My bile duct leaked after the drain was taken out,(after the first meal) to allow me to go home 10 days after the op.. Wore fentanyl patches at home for 3 weeks to manage pain. My observation is - that people are being allowed to go home after too soon after this very major surgery. When you are strong enough, start to walk because it stops clots, and helps your blood circulate. I could stand for 2 hours 2 months after surgery, 6 months out I can stay up for 12 - 14 hours, and walk almost continously for 1 1/2 hours. I still hate stairs!! Be gentle with yourselves! (When immobile in bed I did Canadian arm exercises from WWII. To keep my blood circulating.) Have this op if you need it, but have a goodback up plan for going home for a couple of months. You may not be strong enough to work for a few months. Good luck!
I may be going under the same procedure. Thank you for the info anymore, abut how the pain was, when you were able to get around well would be great. thank you janice
Sorry about the late response. I didn't get a notification about the comment. Each person deals differently. I was lucky enough to get an epidural to help with the pain. It's more of a bloating, pressure pain I felt.
They required me to get up and start to walk a little within 24 hours in order to move me from the Intensive Care Unit to a regular hospital room. Every day I was required to walk a little more each time between my bits of sleeping. I was lucky enough to be released 6 days after my surgery.
I wasn't able to do too much bending, but I did do a lot of walking. I was able to bend 3 weeks after my surgery. And fully recovered about 12 weeks after.
Hopefully that helped!
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