Marianne's Transplant Journey | Interest
Marianne's Transplant Journey
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25.01.2022 URGENT UPDATE!!!! 12/08/2020 Marianne has deteriorated over the past couple of days. She went into hospital with a bacterial blood infection. She then was told she had pancreatitis as well which caused unspeakable pain. She had one day where she was a little better but yesterday she was very unwell and the high fevers started again. This morning I was called by one of the doctors from ICU telling me they would be taking her to ICU where they could keep a closer eye on her. I... can’t even put into words what I’m going through right now and also the rest of the family. No visitors so I can’t see her. I know she would want me by her side but this can’t be because of Coronavirus which has stolen so many lives around the world and left loved ones grief stricken.!It doesn’t discriminate. There are, doctors and nurses trying to save as many lives as they can. I’m not going to criticise these frontline worker’s because I could not do what they are doing and work the hours so many of these are doing. We just pray Marianne will get through this. I’ll keep you updated. See more
24.01.2022 14/9/20 Further to my previous message - When I’m not there when she is so sick I wonder what have I missed? I only found out tonight from Marianne that she was taken straight into trauma when they got her to emergency. Then I worry what her bloods are doing...especially her lactate right now as that is an indication of how sick she really is. They are urgently wanting to try and get this infected PICC line out. They have to have 3 canulla’s in to run everything. They got 3 in and then one tissued before the doctor even went....sigh! When she’s well she takes everything in herself of course but I’m used to being right there when she is so unwell and I can be her voice and ears.
22.01.2022 Hi everyone I’ve just uncovered a new site selling hand sanitiser to consumers. Its available immediately but no guarantee how long stocks last as it looks like they sell to industry too so this new opportunity for consumers should be acted upon quickly I suggest. Currently no limit per person on purchase numbers. What’s interesting is its available in a concentrate as well as ready to use a new formula developed for hospitals so it can be diluted at home giving all of u...s really good quantities really cheaply. I see its approved by the TGA and EPA for use against coronavirus, and other viruses plus many other worldwide certifications and all that information and certificate numbers etc. are on their site. The website address is www.yarravalleycleaningco.com.au Oh and also - I managed to get a 10% off coupon number from a friend which is not restricted to one buyer ( but I don’t know how long it will last) but if you type in C-FS009 in the coupon box when you order you will get 10% off. See more
18.01.2022 17/8/20 - Sorry to be so behind on the updates. I did get a Marianne home around 5.30pm tonight. It was touch and go as to whether she could come home but it worked out and the doctors were happy for this . She will continue the IV antibiotics at home She is very weak but hopefully she can gain strength at home. Thank you again to everyone for your thoughts and prayers and for following us on this journey which has many twists and turns.
17.01.2022 We got the results this afternoon for the COVID-19 test that Marianne had and thankfully it is negative. A huge relief but don’t know yet if it is a blood infection which we are suspecting it is. It is actually a dangerous situation for someone that is so immune suppressed to be in a hospital situation. There is more protection when they think you may have it. We would appreciate your prayers for Marianne and particularly her situation which she finds herself in.
17.01.2022 1/4/20 - What a journey! We are on a journey of our life right now! The doctors found out today she has another fungal infection in her blood. They don't know which bug it is yet but have her on anti fungal antibiotics. They said the Hickman line will need to come out again and she'll need to have a temporary line put in and then try to get another Hickman line in when all the infection is gone. This is a huge concern as to whether they will get another line in as it always i...s. The last one they put in the Vena Cava and she has had a lot of problems with the flow as a CT showed it was quite narrow in some sections and this caused side effects which were a concern. Something has also showed up in her right lung on the CT. Not sure what it is but when I spoke to her on the phone before she seemed to be struggling to breathe. They said they didn't want to worry her about the lung as she had enough to deal with atm and then 2 senior consultants come in and tell her anyway! Lol. Her phosphate is dangerously low. They aren’t even giving her TPN tonight as they have to run so much phosphate. She hasn’t had this happen before. I know so many people around the world are fighting for there life right now. May they find relief from this terrible COVID -19 virus that has the world in its clutch. My heart goes out to all those that are suffering physical and emotional pain as a result of this. I felt it would be remiss of me not to mention this as so, so many are suffering...not just us.
16.01.2022 7/4/20 - A team of doctors met today to discuss a plan for Marianne moving forward. There was the Liver/Transplant team, Surgical, ID, 2 senior Radioligists. The Consultants of these teams are all involved in Marianne’s care one way or another. The following was conveyed to us by the Liver/Transplant Senior Registrar:- So it was said at the meeting that what they were doing was not working. They have really run out of vein access in her chest. The last Hickman line (still in)... they put in the Vena Cava vein, which is the main vein going to the heart. This is where the clot is and the fungal (yeast) bug is adhered to the clot. They are going to do the TOE test again. It is where they put an ultrasound transducer or probe down through the oesophagus to have a look at the heart. Something did show up last time on one of the valves of her heart but they didn’t think at that stage it was of concern. They are doing a lot of the tests again to make sure it hasn’t gone anywhere else as the cultures are still positive. Mostly after a few days of antibiotics they start getting negative cultures but this is not happening this time. They are going to take the infected Hickman line out tomorrow and hopefully use a few canula’s to get her through for 24 m/36 hours in the hope that the infection may have cleared somewhat. They will then put a PICC line in her femoral vein which is in her thigh. They will probably leave it in for 6 weeks or there abouts. We just hope it doesn’t get infected as well. So now the Consultants have decided to do a Trans Hepatic line which goes through the Liver and into the bottom of her heart. There has only been 2 or 3 previously done in Australia. There has been 1 other done at the Austin Hospital. It maybe a Hickman line that they will use.The other Hickmans have always gone in at the top of her heart. The Vena Cava will need to be used for transplant so they are hoping this clot with the infection adhered to it will clear. The Doctors have taken a lot of time to hopefully get the best possible outcome for her now and then following on with the transplant. So could you please continue to pray for Marianne with all she has ahead of her. It is a lot to take in.
15.01.2022 15/9/20 Marianne doing a bit better today. A bacterial bug has grown so we hope that is all. Fungal bugs take a lot longer to grow. They must have tried about 20 times today to get canula’s in. This one in the photo is on the right side of her neck and it is still working thank goodness. They had tried 2 others on the left side of her neck but they tissued. Another Anaethatist came a little later and put one in the right side of her neck. I hope that is still working. They tr...ied so many on her arms, legs, feet. Most of the doctors didn’t even make it out of the ward before they tissued. This is the situation now with all her veins. Because they have been used so much over the years her veins are mostly tissued and clotted. They are keeping the main veins for transplant. As she had an infection in her PICC line they want to give it at least 2 days before they put another main line in as if they put the new line in straight away the infection would just transfer to the new line again. So this is just another day in the life of Marianne. She is feeling weak and vulnerable right now. She really does need this transplant urgently. COVID has had an affect on multi organ transplants. They haven’t been doing them over this time. See more
15.01.2022 3/2/20 - Marianne got home Friday but had to come back early Saturday 31/1/20 as her body seemed to go into shock and her temps and heart rate went sky high. 3/2/20 - Adam, the main transplant consultant has just been and he feels she can go home as nothing more has grown from the blood cultures and her obs and everything seem ok. He is not sure what caused this episode but the general feeling is her body which is very weak and fragile went into shock and started to shut do...wn because of the extreme conditions (42 degree heat) on Friday. It's hard to imagine and scary that the extreme heat could have caused all of that. I have seen her in a lot of pain but Saturday took it to a whole new Level. It was very cruel for her but watching on and not being able to do anything to alleviate it was so hard. We will be forever grateful for the pain doctor who just sat with her until they got it to a level where she could just cope. He came up to the ward too a few times over the weekend just to check on her and see how she was. Typical Marianne style when she was feeling a bit better and her pain controlled she wanted them to stop all the extra pain relief. The doctor said we need to do it slowly as we don't want it coming back. I wish there was an easier way to be able to cope with watching on. See more
13.01.2022 6/4/20 - It is the same fungal bug that has come back for the 6th time. She has still got the infected Hickman line in and so she is not really picking up. They are going to put a PICC line in her femoral vein and keep that in for a few weeks. She is still getting positive cultures so they will take the infected line out, put in canula’s for a couple of days and then put the PICC line in. They don’t want the infection going to the new PICC line. They seem fairly sure that thi...s fungal bug is inside a clot on one of the valves of the heart. I really hope and pray that they can get rid of it this time. This particular fungal bug is a very hard bug to get rid of. ID said she will need to be on the antifungal antibiotics for a long period to hopefully clear this. Could you please keep her in your prayers. It is such a worry her being so sick and a low immune system and having this COVID-19 around. She is only allowed 1 visitor per day and for only 2 hours. This is really tuff for her. She is also in a 4 bed bay so you don’t have any control over who comes in and out. We were hoping the Hickman line would be taken out tomorrow but the nurse in charge just told us there isn’t anything written in her chart. It is really frustrating, particularly at the moment, and I just want to get her home away from this COVID-19. We just pray that Marianne and I won’t fall victim to this. I just want to thank you all for your kind thoughts and prayers at this time. See more
13.01.2022 She waits and waits for that call that they have the organs she needs. It will be a mammoth transplant operation and will take many many hours involving many teams of doctors led by Professor Bob Jones, an amazing and gifted surgeon who has performed these multi organ transplants that have changed the ulives of those that suffer from small bowel failure, and also involving other organs of the digestive area. The nutrition that is needed to keep them alive is killing the liver at the same time which mostly leads to them having to receive a new liver with these transplants. Her Hope and Faith keep her going though some days even that seems just too hard to keep enduring.....when you can’t see the end in view. I feel privileged to have been chosen to be her Mother and walk this journey beside her. 4/4/21
12.01.2022 9 years ago today Marianne flew to Melbourne in an air ambulance for a transplant which she still is waiting for..... she is a strong soul who patiently struggles each day. Xx
11.01.2022 31/3/20 - One of my worst nightmares has come to pass......Marianne having to go to hospital during this whole COVID-19 dilemma! Marianne had to go to hospital yesterday morning 30/3/20. She had high fevers, migraine, heightened pain and all the other things that come with it. She had to go to ICU last night but is back in the ward now. She is very unwell. We think it’s probably another blood infection. They have tested her for COVID-19 and we are waiting for results. We are ...both in lockdown till we get results and if she has it.....well we will be in lockdown for 2 weeks! The hospital has been very thorough in dealing with it. She is in a room with double doors, no TV that is working, no computer as I wasn’t allowed to go out and get it from my car in case it had the virus!!!!! .....if either of us is infected well then a possibility of it having the bugs on it. She has the ‘house party’ app, so if anyone has got it they can go on and chat with her. A virtual experience that is really good I think. If she is too unwell she won’t feel like talking so don’t be offended...just try at a later time. See more
10.01.2022 And 9 years later our gorgeous girl is still waiting! She is a fighter. She has defied all medical reasoning. Her days are filled with weakness and suffering and running life support machines to deliver enough nutrition to keep her small body alive. but through all that she is there to help others through their journey. She waits and waits for that call that they have
10.01.2022 29/1/20 Marianne did get a new PICC line in today. We just hope they can keep on top of all the infections now. Hopefully the PET scan will go ahead next week and we hope and pray that all the yeast and bacterial infections will have gone. She will probably need to be on antibiotics for longer.
10.01.2022 Late update 11/12/20. Since I last posted tonight she had taken a turn for the worst. She has very high fevers again and very sick. They have started her on anti fungal antibiotics now as well and also they have taken fungal and bacterial cultures. Could you please keep Marianne in your prayers.
10.01.2022 18/12/20 Update on Marianne. She came home late Wednesday after having her PICC line changed on Tuesday. She did have that 2nd infection but it was another bacterial bug that wasn’t sensitive to the same antibiotics as the first bug. We are so thankful it wasn’t a fungal bug. She will continue IV antibiotics at home. Thank you everyone for your kind thoughts and prayers. To everyone......I hope you have a blessed and healthy Christmas and holiday season and a much better year ahead.
06.01.2022 28/1/20 - update - Marianne is booked to have her PICC line out tomorrow which is infected. They are going to put another PICC line in for now to make sure all infections are gone before they put a new Hickman line in. She has still been in a lot of pain. The PET scan will be done next week to make sure all the infection is gone. She has still got to have a special CT scan to do the vein mapping as well which was to be this week but may have been changed.
06.01.2022 8/4/20 - Just when you thought things couldn’t get much worse! Many tears today. We were told today if they can’t get rid of this fungal blood infection that they think is in the Vena Cava, they can’t do the transplant. She is on antifungal antibiotics and will be on them for 6 weeks. They don’t want any lines put above her heart at the moment. The Interventionalist/Radiologist wasn’t at the meeting yesterday so they spoke with him today and he doesn’t want to do the Transpla...nt Hepatic line, which would have gone through her liver, as he said if it did get infected and they had to pull it out she could bleed out. So he suggested they put a PICC line in the femoral vein and change them regularly to hopefully avoid anymore infections. There is a femoral vein in each thigh so the doctor said they could even rotate from one to the other. They need the Vena Cava for transplant as they need this large vein to be able to take a line with 5 lumens from above her heart. So the Doctor said they may not even know till transplant if the vein is able to be used to take this. If it can’t we would only find out then that the transplant can’t go ahead. There is so much involved in getting to the point of transplant. I think this would break anyone in this situation. There is a Worldwide Fast on Good Friday from all denominations for those across the world that have been affected by Coronavirus. If you are choosing to fast and you know someone that is ill, could you please include them in your fast. It might be a Mother, Father, Sister, Brother, Grandparents or a friend. There is such power when so many come together to fast.Many blessings come from it. See more
06.01.2022 UPDATE 14/8/20 - Marianne is so much better today. She got a new PICC line in this morning. All her bloods are negative, which is really good. They did a test on her heart but I heaven’t heard the results of that. They often check this after a fungal blood infection. She is still in ICU because her blood pressure drops as soon as they turn the adrenaline off. They had to give her 3 times the amount through the night. They are going to try her on another adrenaline drug. She’s trying to get them to let her go back to 8 West but they won’t while her blood pressure is continuing to drop. Thank you so much for all your kind thoughts and prayers. Just hoping her blood pressure will stabilise.
06.01.2022 9/8/20 - UPDATE -The hospital called this morning and said Marianne had a turn for the worst. She had high fevers (40 degrees), high heart rate etc. The nurse held the phone so she could say a few words. She said her pain and nausea was worse. She sounded dreadful. The nurse told me they had done a MET call. They are fairly sure it is a further sepsis infection. They had done blood cultures and had put her on stonger antibiotics. Her voice was so weak over the phone and it tears me apart that I can’t be there with her. She was also diagnosed with pancreatitis. Could you please continue to pray for her. Thank you.
05.01.2022 9/4/20 - What does a day without another trial feel like?Marianne had a PICC line put in her femoral vein which she had under general anaesthetic. She then had to go down and have a CT of her veins. I was with her around 6.30pm when she said she was going numb down her right side. She panicked and so did I. It then spread to her left side and she couldn’t even hold her head up. Things were racing through my head....I was so worried and I could see how distressed she was. A do...ctor did some tests and said they were going to take her straight down to have a CT of her head. They didn’t even wait for a wardie..... The doctor and a couple of nurses took her down for the CT. A neuro doctor came and had a look at the results and then came up to see Marianne & I. He said it wasn’t a stroke and all her blood vessels seemed normal. She was getting some feeling back by this time but wasn’t back to normal. Over the next hour a lot of feeling came back which was a huge relief. Her right side seemed to take more time. I did ask him what he thought could have caused it. Of course he wouldn’t have known for sure but he said sometimes even a lot of pain could cause something like that. What makes things so much harder at the moment is that you can’t have anyone with you. You have got to do it alone. Thank you for the many prayers and fasts today. See more
05.01.2022 29/2/2020 - A bit longer at home this time! Unfortunately Marianne had to go back to hospital late Friday afternoon 28/2/2020 with another blood infection and is back on antibiotics. She is booked to have a new Hickman line in next Tuesday 3/3/2020 so we are hoping they can still go ahead with this as the PICC line she has now in the femoral vein really needs to come out before more infection shows it’s head.
04.01.2022 Hi to all those who follow this website. I’m sorry for not updating it earlier. I will send some photos and info through covering the last 3-4 months when I can. Fortunately she hasn’t had any admissions to hospital for around 4 months now which we are grateful for. She has been in hospital since Tuesday this week as she was very unwell and another blood infection has shown up unfortunately. It took a few days to show up in her bloods and are still waiting on which bug it is from the culture. It is mostly quicker than that. They have her on broad spectrum IV antibiotics now so hopefully she will start to pick up while they are waiting to find out which bug it is. She has to have the PICC line changed but with holidays things are pushed back unfortunately. She is just needing the transplant and we pray it will happen soon.
04.01.2022 I know it’s been a long time since I updated this. Marianne has been home for a little over 3 1/2 months, which saw us over a lot of the time with Covid but unfortunately she had to go back to hospital last Tuesday 3/8/2020 and has a blood infection. Covid at the Austin right now is the worst it’s been and has 5 Covid wards plus those in ICU. As a lot would know Victoria has entered into stage 4 restrictions. Marianne is. It allowed any visitors. The only way I can speak to h...er is over the phone. She is going through so much physically but also emotionally right now. Could you please pray for her. She is also in a 4 bed ward which is so hard for her. Since my last post on 17/4/20 she had another PET scan and this showed the fungal infection and the clot had cleared from the Vena Cava. This was a miracle and an answer to many prayers. Waiting for the results caused many sleepless nights. Marianne’s main transplant Physician said if it didn’t clear she wouldn’t be able to get the transplant as they need this large vein for transplant. So we had that hanging over us. Covid had made this so much harder to talk to doctors and finding out a lot of things from other areas. I will try and keep you updated often. She was tested for Covid but fortunately it was negative. See more
03.01.2022 14/9/20 Marianne had to go to hospital early hours this morning with high fevers of 40 plus. It is another blood infection but not sure which it is yet. They have started her on bacterial and fungal antibiotics to cover till they find out more. Once again she has been in a lot of pain. Due to restrictions, I am still unable to visit her at all. It is just such a tuff scenario.
03.01.2022 7/3/2020 - Marianne got a new Hickman line in on Thursday. They had a lot of trouble getting one in as there is so much scar tissue. She was away from the ward for about 6 hours. She was in a lot of pain from the procedure. She did get home late Friday and will continue on antibiotics at home. Thanks once again for all your kind thoughts and prayers.
02.01.2022 17/4/2020 - Marianne came home Wednesday 15/4/20. She is very weak and is continuing IV anti fungal antibiotics at home. They want her to stay on them for at least 6 weeks. ID will follow up with appointments and probably tests to make sure this fungal infection has gone in the Vena Cava. The doctors realised late Tuesday that a lot of her electrolytes were dangerously low. Her Magnesium, potassium, phosphate and bicarb were the main ones. They were running most of these thr...ough the night to catch up. The blood tests taken Wednesday morning showed that the levels of these had improved a lot so they were happy for her to come home. She did have to go back to Ambulatory Care the next day for another 5 hours! She is sure glad to be home and in her own bed and not in a 4 bed ward without much sleep. Very hard being in hospital over this time with COVID. Only 1 visitor per day allowed for 2 hours. So 22hours on your own in bed and you can’t go anywhere. It’s higher stress for all the nurses and all healthcare workers. All visitors have to be screened as well. I am glad they are taking all these precautions....you can see it has been a positive outcome across the Country. It does make it very hard for the patients emotionally. Thank you so much for your many kind words and prayers. See more
