22 July 201
I had an MRI on 16th July 2012. Doc called me with results but I haven't seen him yet so will only give a brief update here. The tumour has not changed much in size since my previous scan approximately 14 months ago, although the doc said it is "a little smaller". He has made it abundantly clear that it will be too risky to operate right now and says we should continue to just monitor. The tumour is in a really tricky spot in the middle of all the major veins/arteries which distribute blood to and from the heart, so operation to remove not recommended. Will write more soon. Had a tough weekend because on Friday I had unexplained severe chest pain. Went to hospital, but pain stopped and the people in the emergency room didn't think it was anything to worry about (allergic reaction to food or indigestion??). I am just worried because the pain was so severe, in upper chest, crushing pressure like pain also shooting into my back (mom thought it might be after effects of the MRI??). I've felt on and off weak, nauseous and just unwell this whole weekend... maybe it is unrelated or I am coming down with something like the flu?? not sure? I am going to try and arrange an urgent appointment with my liver surgeon and will let you know how it goes.
12 May 2012
A long overdue update: It is almost my 37th birthday. I was meant to have my next scan in Feb (2012), but that never transpired. I was reluctant to have another CT scan because I have read that one shouldn't have more than one a year due to radiation exposure. I was having more than 1 a year up till now. So I asked my doctor if he could rather arrange an MRI at the public hospital (discounted rate). The waiting list was not surprisingly long so my next scan is now set for 16 July 2012. Lately, I have been experiencing some bad days. The indigestion has increased accompanied by burping and nausea, an empty stomach feeling, constipation, inexplicable chest and colon / tummy pain, etc etc (very similar to the symptoms experienced when I came out of hospital). I seem to have spells that occur about once a month (last 2 or so months) for a few days at a time (about 3 or 4). The rest of the time i still experience the indigestion systems and nausea, but not that bad. So, I guess I have been a little bit worried, but so much. I am just eager to have my next scan to see what the heck is going on. It seems to be more of a digestive system problem so not sure if it is even related to the HA, although I somehow think it is. I still experience liver pain from time to time but it is pretty mild. I am starting to keep a diary of my symptoms to see if I can puzzle together the pieces of what is causing it. Perhaps it is my diet? I have been 'letting go' a bit over the easter holidays, i.e. eating richer foods and drinking one or two glasses of wine on Friday and Sat nights. So, I guess I am just going to have to pay more attention to my diet again and see if that helps. Although the above sounds bad, I am otherwise okay and coping well with work and very strong, mentally and physically. It is just on those bad days when I am down and out... about 3 to 5 days in the month. I am also wondering if there is a link with my menstrual cycles and this. I am a believer that everything is linked, especially when it comes to issues of the liver (the organ that regulates hormones in the body).My menstrual cycles have not been as regular, arriving later than usual lately. So, yeah, something is changing inside, but like my hubby says, I must 'roll with the punches'. Sometimes we have to feel worse before we get better. Will keep you posted. xx
30 December 2011
I turned 36 in June. I had one more CT since the last one listed below. I must dig up to check what the date of that one was. I was meant to have one in October 2011 again but I've asked doc if we can postpone until Feb 2012. Will let you know how that one goes. I've been feeling fine and still get pain once in a while, but I am a 'healthy' weight again and my menses have returned and are much heavier now. I find that when I am stressed, my pain returns so I know that stress must be avoided! When I do get a pain, it is really not that bad. It just makes me worry, that's all.
06 January 2011
I am now 35 years old. It has been nearly a year since I was diagnosed as having an hepatic adenoma (was aged 34). I never knew I had it until it ruptured causing an emergency situation in which I had to be rushed to hospital.
Today I still have the tumour inside of me. My next scan is scheduled for 11 April 2011 and will then be able to give you more news regarding further progress.
Last CT Scan was on 26 August 2010:
The tumour is now 8cm x 8cm, so looking back, here is the progress:
At 26 August 2010: 8cm x 8cm
At 6th May 2010: 15cm x 12cm x 11cm.
At end of March 2010: 16cm x 13cm x 13cm.
This means it has shrunk by approximately half its size since end March (in 5 months). [in terms of volume, one fifth of its original size!]
[Bear in mind that much of the shrinking, up to this point, is as a result of the disappearing/dissolving of the old blood from the internal bleeding that took place when rupture took place. I am not sure what size the tumour was before rupture/internal bleeding took place.]
Here is my story:-
On 8th February 2010 I was rushed to hospital with severe abdominal pain and a distended (raised) tummy/abdomen. Prior to this date I was a healthy 34 year old female living in South Africa.
I had to undergo many tests that night and the following day before the doctors diagnosed me with a ruptured hepatic adenoma. A hepatic adenoma is a benign tumour on the liver and in most cases (90%?) it is associated with long term use of the birth control pill. In my case, this was most certainly the cause as I had been on the pill for about 15 years of my life.
What had happened on that day was that a blood vessel inside the tumour ruptured causing internal bleeding (within the tumour). This caused the tumour to expand like a balloon filling with blood [internal bleeding] (hence my large tummy/abdomen and severe pain). Prior to this event, my tummy/abdomin was flat and I had no idea that I had the tumour.
The doctors had to perform an embolisation to stop the blood supply to the tumour. I also had to receive two blood transfusions due to blood loss. The embolisation procedure was successful. Now that the blood supply to the tumour seized it was now possible for the tumour to shrink in size. I still had to be in Intensive Care for two weeks so that they can monitor me daily to ensure that the bleeding had stopped, etc and to ensure that all my blood tests (liver function, white blood cells, etc) started returning to normal. While in intensive care I underwent lots of other struggles which I will not elaborate on here (severe reaction to pain killers and antibiotics, lack of appetite/weight loss, sleeplessness, etc).
Finally, they found a painkiller that I didn't react to and my recovery started. After two weeks in ICU, I was moved to a normal ward where I stayed for one more week before I was released from hospital to continue my recovery at home.
The tumour casing (including the blood filled area) was huge (18cm). The doctors at the hospital I was admitted to said it is the largest they have encountered. They decided it was too risky to operate and remove it straight away and rather opted to do the embolisation and to give the tumour time to shrink (and for all that blood to dissolve).
19 June 2010:- I am still at home, doing much better, but I still have not had the operation. My last scan to see if the tumour has shrunk was in the beginning of May. That scan showed that the tumour had shrunk to a size of 15cm x 12cm x 11cm [the previous scan done in March? 2010 showed the size as 16cm x 13cm x 13cm]. The doctor said that he was going to consult with other doctors overseas about the way forward (wait longer to operate or operate now?). We now await feedback from the doctor, but we assume that it has been decided (for the time being) that it is in order to wait until the tumour shrinks further. I will phone the doctor next week to follow up.
When I came out of the hospital I stayed in bed for the first couple of weeks just sleeping alot. I had lost lots of weight and needed to get my weight up again. I've never been that much over weight (maybe just 5kgs), but now I needed to put back that weight that I had lost. This has been pretty difficult. I have gained a few kgs over the past few months but am still not at the weight that I used to be.
I am working again and have been working for a long time now (started working very soon after I was released from the hospital). I am blessed enough to be able to do most of my work from home.
I have changed my diet slightly, although the doctor didn't say that I had to. I am 'juicing' now about 5 times a week (I make juices from fresh celery, apples, beetroot and carrots, etc). I also have reduced my meat intake. I've also tried to incorporate light exercise atleast 5 days a week.
You are probably wanting to ask me now about the pain. Well, aside from the excruciating pain I underwent on 8th February and in the hospital in the days that followed, the pain has not been so bad otherwise. The biggest struggle for me has been the emotional/mental side of it (and the reaction to the painkillers!).
As for the emotional and mental side of it, I get my good and bad days. The bad days are REALLY bad. I can't describe how bad it is but to put it mildly it feels like the end of the world and that there is absolutely no reason to carry on. If you have gone thru a similar experience and you feel like you are going crazy, know that you are not alone and that you are not going crazy. There are small things you can do that will help. I didn't want to share my anguish with my hubby because I had already put him thru so much hell with this. But finally, I agreed to start talking to him more about how I feel from day to day. He said that he would rather know what I am experiencing than not know, no matter how terrible it is. This has been such a great help. If I feel a certain way one morning, I tell him. This helps so much. Talking to other people also helps. People that care, of course. And it especially helps to talk to people who have also been in hospital or who have also had a traumatic physical experience. It doesn't matter if it was a different type of illness because on the emotional/mental side of it, the symptoms/experiences can be very similar. Another thing that helps is prayer. I felt that I completely lost my faith in G-d and I am still struggling with this. But over the past few weeks it has been a bit better and I pray every morning in bed before I get up. Also, my dad has given me a new motto to live by. He calls it "Odaat". This stands for "One Day At a Time". The key is to stop thinking ahead or looking back but to rather just live in the now (read Eckhardt Tolle's books). When having a bad day, just remember this saying and also know that no matter how bad it feels, it will end and it is just a feeling. Also, the biggest help is to have people in your life that love you unconditionally. I am very blessed in this regard. I just need to get over the guilt of putting them thru this.
MY MESSAGE TO MEDICAL PRACTITIONERS
I thought it necessary for me to include a post, specifically addressed to medical practitioners, regarding my experience with doctors prescribing contraceptive pills / hormone therapy as, not only birth control, but also a treatment to regulate menstrual cycles and to treat acne. Every doctor I met promoted the pill in a manner that makes one believe that there are no side effects to be concerned about. The doctors never asked how long I have been on the pill or never checked contra-indications with me. They never told me that it is not advisable to take the pill for long periods of time. I know it is our responsibility to read the fine print on birth control packages, but I still feel that doctors have a certain responsibility to warn their patients about the risks. Some of the pill inserts state that side effects are very rare (1%), but I am sure that this figure is inaccurate based on the high incidence of HAs occuring in women using contraceptive pills over extended periods of time. I could not find any inserts which warns against long-term use of the pill.
My history with doctors prescribing contraceptive pills
I started my menses at the age of 12 and had no problems up until after I was 16 years old. At the age of sixteen, I became sexually acvite. At the time, I was living in the United States and it was very easy for me to go to my local "PP" to obtain free birth control pills. Shortly after this, still in my teens, I started experiencing galactorrhea. I went to the doctor and the doctor found that I had elevated prolactin levels. I stopped taking the pill to see if this would resolve the problem. I then started experiencing amenorrhoea (menstrual cycle ceized/stopped). I was then told by the doctor to start taking the pill again. When I was 18, a doctor diagnosed me with 'indirect evidence of a micro-prolactinoma' and prescribed [...] and stated that I should go for a follow up scan in a couple of years time. After reading up on it, I decided not to take the [...]. I had a fair amount of acne as a teenager and as I hit my twenties, my acne became worse. I consulted another doctor who suggested I change the pill I use to another type which will help with my acne. I did so and continued taking this pill (or the generic version of it) up to the age of 30. In conjunction with this, when I started this new pill I also underwent brief treatment with an anti-androgen drug. I eventually had two more scans following this (one CT scan and then an MRI several years after I stopped the pill). Both showed no evidence of a prolactinoma, although my prolactin levels remained elevated (fluctuating), but not as high as before. When I stopped taking the pill (30 years old), I waited almost two years to see if my menstrual cycle will return naturally. It was hell coming off the pill - I think I can compare it to going through withdrawal. When my cycle did not return, this was the time when I had an MRI scan which confirmed no prolactinoma. The doctor suggested that I go back on the pill to help re-start my cycle. I refused to do so. I then read up on some natural alternatives and through changing my diet slightly/vitamens, I was able to get my menstrual cycle to return. About a year and a half later, the HA ruptured. At no stage in my medical history did a doctor examine me to check for the possibility of an HA.
There is no denying that up until now contraceptive pills have largely been promoted by the medical fraternity in the same fashion as condoms and topical acne creams are being promoted. I would like to plead with medical practitioners to exercise care when prescribing contraceptive pills. Advise your patients about the real risk of taking contraceptive pills for extended periods of time.
I would like to end by thanking all of the doctors that played a roll in saving my life when the rupture took place by making the right decisions during that critical time.
I have started this blog to share my experience with other people who may be going thru the same thing. Also, to warn women who are taking the birth control pill that there are real risks associated with long term use of the pill. IF YOU HAVE BEEN DIAGNOSED WITH A HEPATIC ADENOMA, PLEASE CLICK ON 'FOLLOW THIS BLOG' AS WE ARE TRYING TO START AN INTERNATIONAL SUPPORT GROUP.