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Thread: Jessalyn's Health Issues #2

  1. #73

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    Shannon, it's very grounding for me to read a real message, rather than a "Pollyanna" style message that glosses over what you're really feeling.



    There's a lot I could respond to, and I know that Jessalyn has some other health hurdles to jump apart from the liver one. Maybe I can just focus on the liver angle?

    This will be disjointed, but I have a few points to mention after reading your post and the lovely ones that followed.

    First, regarding what you've said about biliary atresia being chronic, incurable, and life-shortening. I know that those words are hair-raisingly frightening, and I went over them time and time again in the early days of Rose's experience. I used to also find myself repeating the words "biliary atresia" over and over again in my head at night, so that I felt I'd go crazy.

    Can I say though, that I have to disagree with the second two words as accurate descriptions of this disease? I say this, because of transplantation as a treatment option - it's not pie in the sky: it's very real. They did the first paediatric liver transplant in Australia in about 1988, I think. Before that, unless the families could fly overseas for a transplant, then maybe "incurable and life shortening" were words applicable to children whose Kasai had failed. But today, a successful transplant means that the child no longer has biliary atresia, and there's no evidence that a child with a successful transplant will have a shorter life. (Obviously, transplant hasn't been around long enough for us to know what the life expectancy is. As one of the gastro doctors at the RCH said recently at a seminar, there's nobody around who had a liver transplant 80 years ago, so we dont know!

    Second, regarding the liver transplant waiting list: rest assured that if there's a very sick child on the list, they go straight to the top, across Australia and New Zealand. There are different levels on the waiting list, and I can't remember exactly what the categories are.

    But Rose was on the waiting list for just 3 weeks, and she almost received a liver on day 21 (there was a problem at the last minute, so the transplant didn't go ahead that time). A few days later her priority was upgraded. This meant that she was (possibly, I'm not sure) number 1 on all the lists across all Australian states and New Zealand. She received a liver transplant the very next day, exactly 4 weeks after first being placed on the list.

    Re the "living-related donor" option, we went part of the way down that road while Rose was on the list, in her last week of waiting. Shane was ruled out because of some arthritis medication he'd been on for a long time, so I began to be "worked up" as a possible donor. It was a bit iffy, since I'm no spring chicken, and had also been rather too fond of white wine over a number of years. Still, the doctors agreed to begin looking at me as a very last resort - Winita actually said that the doctors are a superstitious lot, and any time in the past that they had had a parent start to be looked at as a donor, a liver donor had come along.

    We were told that in Australia, while they have done living-related transplants in the past, transplant teams do prefer not to go the living related donor way these days, mainly because of the risk to donors. The transplant teams meet every year to discuss their policy on living-related donation, and so far, the consensus is that there are far more advantages in using donated liver tissue from deceased persons.

    In my case, they vigorously tried to discourage me from being a donor, because I'm already a mother to older kids. They mentioned the risk of me not surviving the operation, or of ending up with a liver disorder myself as a result of damage during the operation. Evidently some living-related donors have gone on to require a liver transplant. All this stuff we were told was a bit discouraging, but they said to us "Don't worry, we reckon a liver will turn up."

    And it did! That's how the priority system works - really, the transplant team have faith in the system for good reason. Kids on the list get blue-ribbon treatment, for example, they'll be offered the livers from the youngest possible donors, receive the best "plumbing" (arteries, veins, ducts, etc.) I'm not saying that we don't need a much higher organ donation rate in Australia - of course we do. Then those who are not so seriously ill could also have access to transplants earlier, and get on with a normal life.

    You're such a long way from that, and every colourful poo is a sign that her digestive system has what it needs to process the food, and for Jessalyn to grow.

    OK, we're packing to go up to NSW for a few weeks, so I need to wind this up for the moment. I'll have internet access though when I'm away, so please, hit me with any questions!

    BUT one practical idea I have right now is that I have a video of the head of the Victorian Liver Transplant Unit, Bob Jones, talking in April to our support group, all about paediatric liver transplantation. The video shows him giving a talk, then fielding questions from parents in the group. Also in the seminar were the RCH paediatric liver specialists Arnold Smith, and our own Winita was there for a little while. It's quite a long video, going for almost 2 hours, but my goodness, it's so positive! I'd be so happy to post it to you if you'd be interested in having a lend of it. I bought it last week when I was in at liver clinic (they charge $10 for a copy, just to cover costs). Maybe you could one day order your own copy, but in the meantime, I reckon it could be just the ticket for you to listen to Bob talking about outcomes for these kids. He was the one who did Rose's transplant, and we got to know him very well in the months leading up to her transplant. He is simply a beautiful and wise and talented man. I'd love for you to see what I mean, so please, send me a quickie reply if you'd like me to bung the video in a postbag.

    I'm leaving tomorrow, but I'll bring the video with me on our trip, and I'll keep a check on whether you've left me an address to send it to, and post it. (Just email me your postal address. My email is [email protected]) Maybe you can then just bring it back in to liver clinic one day - no rush though.

    Hope to hear you say "yes" - and I hope you get to meet Bob one day so you can feel some of his positiveness about biliary atresia. But today, you're SUCH a long way off all that! Jessalyn's pooing in colour after all! Rose never did - they're very different kettles of fish.

    I'm not saying "buck up", by the way - these teary days are very important - I cried rivers and rivers, and I cried again when I read your words describing your love for Jessalyn. Yes, that's exactly right: we love them SO MUCH! Let's wallow in this love - there's nothing on earth like it, and the intensity, while it hurts sometimes, is something non-parents miss out on terribly. You're doing your job brilliantly - love and cuddle that gorgeous little girl.

    Much support,

    Lynne (PS Shane is also very concerned about you all. He keeps popping in and saying "have you mentioned this. . .?!" etc.)

  2. #74
    *Yvette* Guest

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    Hi Shannon. Just reading through & seeing where you're at. Hope the positive signs continue, & I'm so pleased to see you getting such great support. Pleased to see you allowing yourself to feel everything you need to feel too. Thinking of you!

  3. #75
    Bloke D'Yvette Guest

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    I'm having trouble trying to figure out the way they report the bilirubin levels, on some US sites they talk in figures really low like 1.2 and such, but hers was 128 when she left the hospital (up from 120 after the op), I assume it is a different measure, I've really got to find out.
    Hi Shannon
    Lindsay here........Yvette's bloke
    Just to give you a bit of an idea about normal serum bilirubin levels and how they are reported :
    The units here in Australia are usually in milligrams per decilitre (mg/dl).......so a figure of 12.8 would be 12.8mg/dl.
    This is milligrams of bilirubin per 100mls of blood.
    You may also see it, as you mentioned, written as 1.2.......when it would be 1.2Grams per Litre......which is exactly the same as 12 milligrams per decilitre, but just a different way of listing/reporting it.
    The amount/level is exactly the same, but, of course, it wouldn't be right for them to not try and confuse us all the time!!
    The levels you mentioned for Jessalyn are actually pretty good, under the circumstances.
    To give you some idea, an infant is said to have hyperbilirubinaemia (too much circulating bilirubin being on-board) with levels of greater than 15 (>15)mg/dl, in a full-term infant.
    With prematurity, the levels are >10mg/dl.
    At 12.8mg/dl, things are looking pretty good and it's likely that those levels will be improved upon with time. In fact, under the circumstances, those levels are outstandingly good.
    You are all more than overdue a little more good news and Yvette and I both remain full of admiration for you all at the incredible way in which you're all handling things. I wish you all strength and resolve to come through the other side.......always know that there are many people who are with you. You don't have to do it all on your own.......I just wish there were so much more that we could do in a direct sense.
    I hope this info helps a bit and please, don't hesitate to let me know if theres anything at all I/we can help you with.
    take care and look after yourselves well
    all our love and warm thoughts
    Lindsay, Yvette and family.

  4. #76
    Bloke D'Yvette Guest

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    Okies........
    That strange 'y'-like symbol means 'micro'..........micromoles per litre in this case. The symbol looks like a 'y' but with the 'stick' part hanging-down on the opposite(first) side. I think that's what you are recalling, Shannon.
    Many levels within Australia are additionally listed in mmol/L (which is millimoles per litre), as distinct from micromoles ........it gets incredibly confusing and to try and explain just what a mole is would not be easy. It essentially is concerned with molar/molecular weight and concentration per known amount of a substance........blood, in this case. One might well run away with the idea that they don't want us to understand it too well!
    There are 1000 micromoles in a millimole.......so if the reading of 128 is in micromoles it would read as 1000 times smaller if written in millimoles, that is 0.128mmoles/Litre.
    The danger lies in bombarding you with way too much information.......something I certainly don't want to do. I realise that all you need to know is what's normal and what isn't and what indicates a good or bad response.............what a shift in these levels actually means, over time.
    The 20 that you mention is, I believe, referring to the detected bilirubin level at blood test being greater than 20% of the total bilirubin, this being significant to indicate possible billiary atresia.......this is, of course, at the diagnostic stage and I'm not sure if it has any real use subsequent to diagnosis in the monitoring of levels. I feel that they will use other parameters and I need to find out what they are here in Australia.
    I'm sorry that I can't get any precise info right now, but I will find out and in language that can be easily understood. I have a good relationship with my GP and I'll be picking his brains regarding exactly what units are being measured and just what a level of 128 really does indicate.
    I certainly don't want to give you erroneous information..........bear with me
    take care
    Lindsay

  5. #77

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    Shannon there is not alot more than what has already been said. But it is a difficult time and also early stages. You just have to give yourself permission to be upset. At the moment everything is 'new' and there is so much focus on the BA. But as time goes on and things become more normal, it does seem better and those days of crying get less and less.

    There is some positive things Lynne has mentioned. Hang onto those types of stories Shannon. They are the ones that keep your head from going crazy. And there is no reason why Jessalyn shouldn't become one of those stories aswell.

    I personally only listen to happy, positive stories. Maybe I am kidding myself, but I refuse to spend day after day wondering if Alana will make it to her 30th birthday.

    You are doing so well Shannon. Your doing exactly what every great Mummy should be doing. Big Hugs!

  6. #78
    Debbie Lee Guest

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    :hugs: Shannon.... I can only imagine what you must go through on a day to day basis. You are doing a wonderful job!

  7. #79
    Bloke D'Yvette Guest

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    Have had a bit of a chat with my Doctor re: the bilirubin mystery. It is measured in umol, as you seemed to recall, and has an upper limit of 20, also as you stated...........thus 0 - 20 is the 'normal' range. This doesn't mean that since Jessalyn's levels were 128 that they are extremely high.........merely that they are elevated above normal levels, normal for those of us without any interruptions to our Liver/Billiary system.
    I would say that it's of much geater significance to measure the levels from the baseline of what her level is and, of how this level may fluctuate and (hopefully) improve, not worsen significantly.
    Another thing to consider, is that often with these tests, the figures can appear astronomically high.........many of the enzymes that are measured with Liver Function Tests often return in their thousands without being of massive significance.
    I don't want to go on at great length, especially when it's possibly telling you guys things you're already principally aware of, but I do feel it's important that you jot all of these little queries down and present them, one by one, to your specialist/gastroenterologist. It's very important that you are both fully conversant with the terminology........something which, I'm certain, you're both becoming very adept at!!........but that you understand about these baseline test measurements and exactly what the significance of a shift in the numbers within these tests means.
    I guess what I'm trying to say.........and not very well...........is that large numbers aren't always scary in reality. Doctors are quite often far more reluctant than I at releasing medical information that might scare people to bits : depending upon your own doctor specialist, you may have to 'prod' him/her just a little to coax them out.
    Enough of all that already. I hope my long-winded approach hasn't totally discouraged you from ever asking for any future advice and want to repeat that I will always be happy to help in this small way, should you ever need me to.
    Thinking of you all
    Lindsay, Yvette & Family.

  8. #80
    kirsty Guest

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    Can't do much more than send hugs your way Shannon & say that I think it is great that you are getting so much support & information from people who know what they are talking about or whom have been in your situation.

    Hope that all with Jessalyn is still improving & that every day it just gets a little better.

  9. #81

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    Shannon... I admire your & your families stregnth & love for your darling wee girl.... I dont think I would cope in your position....

    My thoughts are with you & I hope that every day wee Jessalyn improves bit by bit

  10. #82

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    Shannon- I am sending you the biggest hugs the world has ever seen, I wish there was something I could do, but I am always thinking of you and Jess and things sound good. Lynne is a great resource and has some terrific stories.

    You are definitely going to have lots of down days but I am sure that there will be just as many up days. Looking at your darling baby girl's smile shoudl help to brighten your day. As much as it is hard I guess it isn't the best thing to think so far ahead, living each day as it comes and making every day as good as you can is important. And getting as much info as possible will help you I'm sure. the 8 week wait is a long one, but so far so good, keep your chin up. I know sometimes you must feel like things are so dark but I like Lara's attitude, looking at the positives will keep you going through those times. None of us know what is around the corner.

    I feel so glad top be here for you and I think it is important that you get out the negative feelings as well as thwe positive. Try to catch up on some sleep, thinking of you
    Michelle

  11. #83

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    Shannon I'm so glad to hear that Jessalyn's operation went well and she is now at home.
    Big hugs to you and your family. I'm sure you'll find the strength you need to help her overcome what the future brings.

  12. #84
    katanya Guest

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    That is excellent news that things are still looking good, I understand you have to wait but if your feelings are positive then hopefully that intuition is at work

    It is great news that they are keeping it through the children hospital, in my expereince I find it more enjoyable there than my local hospial, apart from the fact it is easier for Friends to acess it! They have great resources at the childrens~!

    Good luck at the appointment tomorrow, seems like everything is going ahead as planned which is excellent news! \/

  13. #85

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    That's great Shannon- I hope things stay that way. I agree it is best to stay in the one place for all Jess's stuff, cos at least they are knowledgable about her history then, and the children's is the place to be....!

    Best wishes michelle

  14. #86

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    Great news Shannon! Keep being positive!

    Good luck with the app tomorrow.

  15. #87
    tiggy Guest

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    Shannon,

    I have been keeping up with yours and Jessalyn's amazing story of strength and courage.

    I want to send you both my love and wishes for a bright and happy future, thinking of you both.

  16. #88
    Debbie Lee Guest

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    That's great news, Shannon! What a little trooper your baby girl is

  17. #89

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    hi shannon just letting you know im still thinking of you, your hubby & your gorgeous girls - you are an inspiration & i hope everyone is going well for jessalyn

  18. #90
    *Yvette* Guest

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    All wonderful news, so long overdue, Shannon.
    Keep strong & take care
    Lindsay, Yvette & Family.

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