Unwell Again

From 1998-99 onwards I had difficulty climbing up the hill to the office, and felt I was getting really unfit and putting on weight. I left Wang New Zealand Ltd for The Lawlink Group Ltd in November 1999, just after my exams, and continued to work late into the evenings, and felt very tired all the time. This I put down to lifestyle. I was doing a lot of national flying at the time, and the increased oedema I attributed to elevation.  I had also commenced "Adult Learn to Swim" classes November 1999 at the local pool, and I got an ear infection (Staphylococcus Aureus). This, after numerous visits to the GP, antibiotics and eardrops, had still not cleared up.

Saturday 18th March 2000 the Auckland Museum was re-opened by the Prime Minister.  My boyfriend at that time, Ivor, and I went there and wandered through from the Official Opening until 3pm. At that stage, I said to him that I just couldn’t walk another step, because my legs were so swollen (fluid was leaking out the pores) that I had to go home and lie down. That Sunday I went to the Emergency Doctor. I wondered if maybe I was anaemic, as I was looking jaundiced and pale. I had blood tests done, but still flew to Wellington on business on Tuesday and Wednesday. 

Arriving back Wednesday evening I remember distinctly the odd feeling that as I looked out the window at Auckland, there was not a single landmark that I could recognise, which was most disconcerting, as I have flown into Auckland countless times. I also couldn’t find my car, even though it was parked outside the Terminal, and I spent 10 minutes looking for it. I don’t even remember driving home.  (Apparently I was talking to Ivor on my cell phone, which I can't recall at all).  Once I got home I had no energy to even get my briefcase ready for the next day. I went straight to bed. 

I woke up at about 3am, as I was shivering with cold, and couldn’t breathe. I was so so cold, and I had no energy at all. I was desperate for a blanket, and I couldn’t reach one or get out of bed and make a hottie or anything. It took about 5 minutes for me to gather enough strength to reach the phone next to me, and ring my mother (who didn’t answer), Ivor (who didn’t answer) and then my brother-in-law (who, as a Doctor, had to answer).  He told me to immediately call an ambulance. By the time I got to A&E at North Shore Hospital I was running an extremely high fever and I was in Resuscitation. I had my briefcase and cell-phone, still expecting to go to work that morning – however I have never returned to that office since that morning.

At this stage I was transferred to the New Zealand Liver Transplant Unit, where the specialists fought valiantly to isolate the acute infection (Staphylococcus Aureus in my ear and blood) and treat it, and then started to deal with the acute liver failure, including Level 1 progressing to Level 2 Hepatic Encephalopathy. I presented with unusual side effects. The liver damage had caused massive pressure in the heart and lungs, with right heart failure and tri-cuspid valve leakage and severe pulmonary hypertension. The liver also had a blocked portal vein.

To detail the time from going into hospital on Thursday the 23rd March 2000 until my liver transplant on the 15th August 2000, the e-mails that Ivor sent to my friends and family describe what happened clearly.  Here they are.

DATE:

Sunday, 26 March 2000 10:23
I am not sure if you will have heard the news, but Bethli was admitted to hospital on Thursday with liver failure. For a while it looked as though she would not last long, and even now she is not nearly out of danger, although she has stabilised. She has a few complications, and did have a serious fever, so has not really had a good time of it.

If you want to visit, she is in ward 7B of Auckland Hospital, room 4. If you want to know more my contact details are below, and I read email here and at work every day.

DATE:

Wednesday, 5 April 2000 10:21
Just a brief update on Bethli. She completed the tests on Wednesday. They were longer and more traumatic than expected and she is currently tired and quite sore.

The situation appears more complex than could be diagnosed straight away and so the results are now not expected before Friday afternoon. Until then Bethli is hoping to try and get lots of rest and recover her strength to help her through the next stage.

If you are planning on visiting over the next couple of days, she would be pleased to see you, but please plan to keep your visit short as she has yet to fully recover her facility to chat continuously.

DATE:

Wednesday, 5 April 2000 11:01
TO: Joanne
Looking forward to seeing you. Let me know if you need transport, especially to/from the airport, while you are here.

I guess if you have talked to Robin you will know that they are finding Bethli's case very complicated, and are certainly not wanting to make any decisions without really careful consideration of all the evidence. Whatever happens, I guess it is going to be pretty major.

Bethli was very sore, and quite distressed, when I left last night. However, she had been without sleep for over 48 hours, and had had to lie very still for nearly the whole day, so considering that she was in remarkably good spirits. I have not been able to talk to her this morning yet, but hopefully she will have got lots of sleep and so should be feeling better - although probably not much happier. I am going to try and get in lunchtime to find out.

It's now a case of having to wait until Friday and then take it from there.

I will make sure I keep you up to date as things develop.

DATE:

Thursday, 6 April 2000 18:18
Thursday 6th 5pm

Bethli has managed to get some sleep over the last 24 hours, and although she is still very tired she is looking and feeling better than she did following the tests on Monday.

Tomorrow [Friday] the specialists are due to return to discuss the results with her, around the middle of the day, and I would suggest that it would not be a good idea to plan a visit at all on Friday. I will try and get out an indication of how things go later in the day, and hopefully at that point will be able to indicate whether she will be able to cope with visits on Saturday or Sunday. Certainly at present she is finding that she is tiring out quite quickly, and not able to cope with extended visits or large groups.

During the time she has been in, she has received an incredible amount of flowers, so much so that they are occupying every flat surface in the room. Bethli is extremely flattered by the many kind thought and wishes that have been flowing in, and really surprised by the volume of flowers. In true Bethli style she is cataloguing everything, and will be contacting everyone as soon as she is better, but in the meantime has asked that I extend sincere thanks to everyone for their generosity.

Sorry this has gone out so late in the day. I am not sure when I will be able to send an update tomorrow but will try and ensure that information is sent round before the end of the day.

DATE:

Monday, 10 April 2000 11:04
Hi to everyone,

I am sorry that there was no update since last week. The reporting of the test results was delayed a couple of times and we eventually were given the news late afternoon on Friday, too late to get out an email. I will get to the results soon, but a report on Bethli's current state is in order first.

On Saturday she went home for the day, and was reunited with her cat for the first time in 2 weeks !! She spent the day entirely without any medication or other support, and was still cheerful and active at 9pm, although naturally a little exhausted. For those who had seen her earlier in the week this was a big improvement. On Sunday she spent a quieter day receiving visitors, and generally recovering her strength. The hospital had said they were obliged to maintain the space in her ward, and so had removed many of the flowers that had been occupying every surface.

As to her underlying state of health, the results of the tests done last week indicate that she is not at all well. I will quote her own words –

"I have chronic liver failure, a chronic heart condition and lungs too. I am in Auckland Hospital at present, but am being moved to Greenlane this week for heart and lung tests.

They have already worked out that I can not have a liver transplant, as my heart is in such bad condition that they say I would not survive the operation. At present the prognosis is without any operation I would have most likely a maximum of 2 years to live, but any infection I got would kick the liver to oblivion completely. They are now wanting to investigate the possibilities of a lung - liver transplant or a heart - lung – liver transplant."

As you can see, there is still some testing to be done, and I have just heard that Bethli is being transferred to Green Lane hospital this morning [Monday] where the cardiac team can get to know her. It is my understanding at the moment that all further work will be done there.

As soon as I find out which ward I will let people know. She still has her cell phone with her and is happily receiving calls.

DATE:

Friday, 14 April 2000 10:09
Last breaking news - Bethli is at home for the weekend!

Having completed some extensive and exhausting tests at Green Lane, Bethli was suddenly released into the care of her cat late yesterday. As of this morning cat and patient are doing well :-)

Bethli is expecting to be at home until Tuesday morning, when she has been asked to return to the liver unit in Auckland hospital. At that stage I assume she will be given the results of the latest round of cardiac and respiratory tests, and the next stages in the process will be mapped out for consideration.

Those of you wanting to contact her, she should now be reachable via her home email, as well as on home phone and mobile, and I'm sure you could arrange to visit her at home if you want to. She is currently tiring quickly, but otherwise very much her old self.

DATE:

Thursday, 4 May 2000 13:35
Just a brief update for everybody on the current situation. Bethli is currently at home, and in herself is OK. She is working from home when she can on her firm's web site [check out http://www.lawlink.co.nz]. She is trying to get out and about, and although she tires easily at the moment, she has been provided with a high tech. green walker with brakes, padded seat for resting on, steerable wheels, in fact everything the trendy walker could need. She can be contacted almost any time either via email or home phone. She also has work email etc. so if anyone wants further contact details try emailing her or me.

Yesterday she went into Auckland hospital, hoping to be told what the team had decided to do. Unfortunately the decision is proving difficult to make and so no update was available. She is now scheduled to return in about 2 weeks, when they are promising that the issues will have been resolved and they will be able to tell her something further. In the meantime she is at home taking various medications, including a high protein drink which she is gradually growing to like[?!?] She is unable to get out much and so I am sure would enjoy the occasional visit if anyone is passing by.

The major problem she is currently battling with is WINZ [Work and Income New Zealand]. In true bureaucratic style they have decided at this late stage that they are going to withhold payments for a while. It seems that they do this where people have been earning a 'reasonable wage', so beware!!! In keeping with their system everyone is extremely nice, but "it's really not their decision to make and they are very sorry" - you know the sort of thing.

Still, other than that she is sounding and looking well, and looking forward to hearing that the doctors can come up with a good solution in the not to distant future. More news to follow when it is available.

DATE:

Friday, 26 May 2000 21:25
A brief update of the current situation.

Since the last update Bethli has had more news from the team of doctors looking after her, and continuing frustration from WINZ.

Earlier in the week she went back into Auckland Hospital briefly for a check-up. There she learned that a multi-organ transplant is currently thought to be high risk, and therefore the preference is to go for the Iloprost treatment with a view to stabilising the system and then replacing the liver.

Therefore a combined submission has gone into the HFA [Health Funding Authority] from both the liver and the heart/lung unit to this effect, and the response is expected sometime soon.

In the meantime she is at home with various treatments to ensure that her fluid content is kept down and her protein levels kept up. She is generally well in herself, although needs regular rest as well as regular food intakes to keep her energy levels up.

She is none the less keeping herself busy. She is active in the development of sections of the Lawlink website - http://www.lawlink.co.nz - and asks me to particularly point out the 'hot news' section which she updates very regularly.

She is also spending some time researching issues on the web. When not actively working on line, she is doing some intricate tapestry work, and also about to start off on some lace-making.

For those of you who may be passing, she would like to point out that West Auckland in general, and Henderson in particular, are not so far away, and she will always welcome visitors. As she is not always there, it is well to check first, and she can be contacted at home.  Even if you are not intending to visit, please feel free to phone for a chat as she is not getting out much to visit people and really would like to keep in touch with you all.

She can also be contacted by email, using the address at the top of this update, and regularly checks for messages.

To those of you who missed earlier updates, please contact me if you would like to know more details, or contact Bethli who is always ready to answer questions about how she is and what she is up to.

As to the WINZ reference above, they are still unfortunately of the opinion, apparently, that as she has had such good jobs she must have been able to stash away some savings, and so they have yet to start paying her any sickness benefit. This has made things very tight for her, and the expectation is that this 'stand-down' period will end very shortly. In the meantime the local health authority and various other groups have been very good, and she is getting regular home help with things such as cleaning, shopping etc.

That's about it for now, but more news will be circulated as it becomes available.

DATE:

Thursday, 8 June 2000 14:05
Two significant events to report at this stage.

Firstly, although Bethli is at home right now, she was re-admitted to hospital over the long weekend, very short of energy in considerable pain. She went through numerous tests and had lots of blood removed. Her blood sugar level was low, and has now been brought back to normal. However, there is, as yet, no real indication of what caused this particular setback.

On a much brighter note, she heard this morning that the HFA have given approval for the Iloprost [a vaso-dilator], which is the drug that will hopefully pave the way for a successful liver transplant later in the year. There are various arrangements that now need to be made, but I understand that she is expecting to be admitted to Green Lane sometime in the next couple of weeks for treatment to begin.

Therefore, the expectation is that she will now be at home, and contactable via email or home phone, for the next week or two, and that she will then be moving to the same sort of section in Green Lane that she was in earlier, for an as yet unspecified period.

I will of course update everyone as events unfold.

DATE:

Monday, 26 June 2000 18:33
As many of you will realise, Bethli is still at home, waiting to hear what is going to happen next. I have just heard that there has been some further delay with the starting of the Iloprost, and that she is not now scheduled to be going into Green Lane Hospital before July 5th. Until then she must wait patiently at home, and keep herself fit and healthy.

Today she is somewhat tired, and has been resting. She had a good weekend, with a few visitors, and managed to achieve quite a lot, which may account for today's need to rest. She is also understandably a little frustrated by what she feels is a lack of progress, and is anxious to get started with the Iloprost as soon as possible.

As soon as I have a firm date for her admission to Green Lane, I will let everyone know. In the meantime she is continuing to work on the LawLink website, and regularly reads her emails. She also is keen for people to call, although please bear in mind that she can sometimes be quite tired and so may not be able to chat for long.

DATE:

Saturday, 8 July 2000 20:37
It has been a while since the last update, and lots has happened so I am taking this opportunity to get some news out to everyone. News is likely to be changing rapidly over the coming days and so I will try and make sure I keep up!

Firstly, welcome to the many recent additions to the list. In response to some enquiries, Bethli's personal email address is the one at the top of this email [in the To: row] and she welcomes email from you all at this address. Just at the moment she is not accessing her mail, as you will hear, but she will hopefully be back to it shortly.

To bring everyone up to date, I will start with a brief recap of the situation. Bethli initially suffered almost total liver failure a few months back, and then in the subsequent investigations there were some further heart and lung complications discovered. These meant that, although she was in urgent need of a liver transplant, the risks added by these complications made that option almost impossible, and so she began a steady decline, as many of you who visited her will have seen.

However, with a combination of drugs and some excellent support from the many specialists involved, the decline was arrested and she has been living at home for the last several weeks, generally tired but well able to look after herself.

The main problem with the transplant option was seen as the excessive blood pressure somehow existing between her heart and lungs, which would have made the taking of a new liver extremely unlikely. However, it was proposed that a new drug called Iloprost be used in an attempt to reduce this pressure to an operable level. The is an extremely new drug, and it has rarely been used in a case such as Bethli's, never here in Australasia. It is also extremely expensive and needed HFA approval before being used. These and many other hurdles were overcome, and on Tuesday Bethli went back into the cardiac unit of Green Lane hospital to be prepared for this drug. First she had to undergo some unpleasant and very invasive cardiac testing to measure the current situation in the heart. To make matters worse this had to be done without any anaesthetics due to the lack of a functioning liver.

None the less she came through the ordeal well, and on Wednesday afternoon had her first dose of Iloprost. This is delivered directly into her lungs using a device similar to that used by asthma suffers, except it is larger and electrically operated. She has been started on a small dose, which she has to have every 4 hours. So far the signs appear to be encouraging, although in true Bethli style there is no overall consensus at the moment amongst the specialists as to exactly what is going on, and so they are holding the dose steady pending a case conference on Monday. Once that has happened I can hopefully issue an update.

Therefore, at the moment she is in an 'isolation' room in Ward 6 of the cardiac unit in Green Lane hospital. She is able to see visitors, although she is generally quite tired and has to have Iloprost every 4 hours which causes headaches and drowsiness amongst other things. She does have her cellphone beside her and will talk to people for short periods on that.

I hope that has been clear, but don't hesitate to get back to me if you have a question. Sorry if I don't always respond immediately but I will do what I can :-)

[At this stage I was receiving twice daily visits from the District Nurse, Weekly Medlab visits to take blood, night-time caregivers (rostered, 1 night each a week) and daily Home Help for cleaning, cooking and showering.  I was getting to the stage where I couldn't use the microwave anymore, it took too much energy, and I could barely lift a glass of water.  The Iloprost gave me a migraine for 2-3 hours after each dose, including a massive jaw ache, so finding a pain-free time to eat was a challenge.  Owing to dizziness the District Nurses had to assist me back to bed in the daytime, while at night, I had rostered caregivers to assist me - a great bunch of people!]

DATE:

Friday, 14 July 2000 19:33
Hi,

As some of you will have heard, Bethli has now come out of hospital, and is at home, at least for a while.

The testing was encouraging and she was started on Iloprost in the middle of last week. Although it has some significant side effects the feeling at the moment is that it is doing some good and so she is to continue with it as planned. She has to take the drug by breathing it in, and the effects are pretty fast in coming. The following is a quote from Bethli herself as an indication of the timings and effects as they apply at the moment:-

"Re times and when I feel OK. I have to take Iloprost at 9pm, 2am, 7am, 12noon and 4pm. I have a bad headache (migraine like) for 2 hours after. I have nausea sometimes, and hot flushes sometimes too. I have to eat BEFORE the drug, as it also affects my jaw. My diuretic works until about 5pm. (Dashing madly to the loo!). I sleep until 9:30-10am. Breakfast, bath and then time to Iloprost!!"

In answer to when would be a reasonable time to try contacting her, she has the following to say:-

"It may be worth trying me sometimes between 3pm and 4pm. I won't answer when I am on the Nebuliser. I have to make the drug up between 2pm and 3pm, and I won't answer then either as very fiddly."

It has to be said that she is fairly tired for much of the time, so please plan to keep any calls brief.

As can be seen, the drug taking is a very arduous process, and as a result Bethli is finding her sleep patterns very much disrupted, and she is finding it hard to keep up energy levels. In order to ensure that any problems can be minimised, it is necessary to ensure that she is not on her own overnight, and there are regular health service visits planned during the daytime. Bethli's family are co-ordinating a roster of people who can stay overnight, from around 7pm to 8am, and ensure that she is Ok, and that she takes the medications at the appropriate time. This is working will, and helping Bethli to feel more at ease with being at home.

If any of you would be available to cover one or more evenings, or perhaps stay with Bethli for a couple of days sometime, then please contact me and I will pass details on to Robin. Certainly Bethli would like to see people now and again, albeit under such circumstances. She is able to organise and take the medication herself and therefore what is required is really to provide some company in the evening, and ensure that Bethli gets up at 2am and 7am to take the Iloprost.

Anyway, that is enough for now. Bethli's time clock is understandably being thrown about by this and so she is generally able to read emails, as she can do this at any time. As always, her email address is at the top of this message.

DATE:

Tuesday, 18 July 2000 17:14
Since the last update just a few days ago there has been a significant development. Bethli went in for some tests at the liver unit, and they announced that they are hoping to very much shorten the time on the Iloprost.

To this end, she will be attending hospital most days next week for a further bank of tests, and all being well they will be adding her to the transplant list on the Friday - July 28th. This means, in effect, that she would be potentially scheduled for a transplant at any time from then - at a couple of hours notice! They feel that she has responded to the treatment well up to now, and that she would currently have a high chance of a successful outcome, although the operation is at least a 12 hour one, and is therefore clearly not without risk.

She also goes in for an MRI on Thursday, and I will send out any information that comes from that, probably early next week.

DATE:

Tuesday, 25 July 2000 14:35
Well, things are changing quite rapidly at the moment and so this is just a brief news update.

All this week Bethli is having to go up and down to hospital for tests. They are trying to determine if and when they will list her for a transplant. She is having to see a whole range of people from the specialists to the surgeons to the physios, etc.

Clearly Bethli is well known to many of them, but there still have been a few surprises. One of the big hurdles that came up yesterday was the fact that, after the operation Bethli will need 24 hour supervision. For the first 3 weeks this will be done by the hospital, but after that she will have to rely on family and friends, first in the hospital's rehabilitation unit and then at her home. If such cover cannot be found then they are not willing to even list her for the operation ..

Some of us will most likely try and arrange some leave, for a few days or a week, and stay with her permanently. However, there are likely to be gaps which need filling, and any suggestions or offers would be most welcome.

Bethli's mother Robin is facing the daunting task of putting an outline of a list together before Friday, even though we currently have no real idea of dates, and so if anyone would like to offer help or advice perhaps the best thing would be to contact Robin directly on her e-mail. I am sure she would live to hear from people.

Other than that, the tests are continuing today, and it seems that she is to be subjected to a repeat of everything she has ever had, including the dreaded cardiac catheter, and a few that she is facing for the first time. Hopefully they will all go according to plan and the news on Friday will be good.

I will make sure I keep everyone updated as much as I can.

DATE:

Friday, 11 August 2000 14:01
This is a very belated update, as you will see, and I must apologise to those who have known about some of the many developments but not had actual news.

Since the last update, Bethli's tests have been completed. During the week we had both good and bad news, and at one point there was some real doubt as to whether the transplant could proceed at all. [Doubt whether there would be a vein to attach the donor portal vein to, as my portal vein and superior mesenteric vein were not usable].  However, shortly after this low point, a solution to the apparent difficulties appeared, and Bethli was listed for a liver transplant almost two weeks ago. She is still on the Iloprost, and still therefore feeling very weak and suffering head and back pains for much of the time, but at least now has a real goal in sight.

The transplant is subject to no more urgent case being in front of her anywhere in the region [much of Australasia] and also to a real high quality liver becoming available. This could take anything up to 12 weeks, although clearly could come at any time before then.

The following is an extract from something Bethli wrote to someone just recently, which provides a little more detail:

"I appreciate the many e-mails I receive and would like to assure everyone that even though I do not always have the time or energy (owing to the 'iloprost' regime) to answer with long letters, I enjoy reading what you are doing, and keeping up with what's going on in your lives.

I am currently at home again, after another brief interlude in Ward 7B (my home away from home) where I was found to be dehydrated, a side-effect of one of my many drugs. Half a litre of i/v Albumin later, and the difference is remarkable!

For those of you who are unaware, the Liver Transplant team finally "bit the bullet" and decided to list me for a Liver Transplant. This occurred Friday 28th July. I am now waiting for a liver of the right blood type. The week of tests (24th to 28th July) were exhausting, and the Angiogram on the Thursday was a disappointment, as it showed up another hurdle. The difficulties with transplantation are increasing owing to the pressure within the heart (for which I am taking 'iloprost') and not only do we now know that I have a blocked portal vein (therefore this cannot be used to attach the new liver / portal vein to), but the vein the surgeons hoped to use instead of the portal vein (the superior mesenteric vein) is not accessible owing to the position of the pancreas. This would make the operation technically impossible, except for the hope the surgeons have of being able to gain access to the splenic vein and use this instead. So once again, there is a further state of limbo.

I am facing the prospect that it is likely that I will get a new liver, but that if the surgeons can't access the splenic vein, then the best that can be done is to keep the current liver in place, and sew me up again. This would decrease my life expectancy considerably, as the additional pressure on a weak system would be very detrimental.

The surgeons and liver team spoke very honestly and openly about my chances and prognosis, and we are quietly confident that I stand a good chance of surviving, and, as we all know, the alternative to surgery is a grim one anyway."

So, as you can see, the waiting process continues. I know Bethli continues to find the support of you all very uplifting and so please don't hesitate to email her form time to time if you can.

I will have to end it there for now, but will be back as soon as there is more news. As always, please let me know if you have any questions you would like answered.