BD6 My Journey With Starting TPN...
Ao today is Tuesday 5th of September 2017, I have just arrived home from a doctors appointment in Leeds. Today I had my first adults gastro appointment with my new consultant in Leeds, it was such a good appointment although some not so great news so I thought I would do a little update as i plan on adding to this to document my journey. So when we arrived we clarked in and sat in the waiting area for the nutrition clinic, the clinic coordinator who is kinda of the secretary and nurse for my consultant (who's clinic it was), she introduced herself and explained how the clinic works. We got bloods done and then saw the dietician assistant who did my weight, height and other measurements such as strength and mid arm circumferences. We then went in to my appointment, there was my consultant, the senior dietician and the home PN nurse too (PN standing for Parental Nutrition which ill explain later in this post). We were in for an hour and a half and just had a really good in depth appointment. She was so lovely and very thorough and so was the dietican. But unfortunately after lengthy discussions they decided that my digestive tract is no longer functioning well enough to continue with my feed through my tube into my bowel, im not tolerating it anymore and getting just under 300 cals a day and its not been absorbed meaning im now underweight and very malnourished and im also chronically dehydrated. The decisions has been made that i need to began on TPN, TPN stands for total parental nutrition, its a type of nutrition that is given through the veins avoiding the digestive tract completely. I wasn't expecting this outcome from today at all, i feel very shocked and quite upset really i feel like ive failed which i know i haven't its my body failing but its still quite a hard thing to come to terms with, TPN is a complete last resort and has a lot of risks which im so scared about!
So today is Friday 29th and yesterday I had my Hickman line fitted, im feeling very sore and uncomfortable today but I'm ok I'm just having a chill day and take it easy. A hickman line is a line that enters the body on your chest and is then tunnelled into the large veins near your heart, it is used to delivered long term medications and fluids and for me is what is going to be used for my TPN to be delivered through. You can see in the picture that it is very bruised and you can also see the stitches, the stitches are left in for a few weeks whilst the skin heals around the line, then just becomes a part of you!
So its now ben 3 weeks since we saw Claire in clinic and were still waiting on a bed! I'm top off the urgent list but still could be a few days as the ward I'm waiting to go on has a lot of long-term paitents so we shall just have to hang tight. I'm feelimg really poorly ive not left the house in days as I'm so weak, even getting out bed is becoming a challenge, I just keep thinking about how much better I'm gonna feel when I'm on TPN.
So today is Friday 6th October and we have finally have had a phone call to say that there's a bed!! Although due to it been Friday they wont start my TPN till Monday as the team isn't around! The ward is amazing everyone is so lovely and it has too be the best ward we've ever been on just little things when I'm asking for pain relief they're here within 5 mins and I know its only a little thing but it makes a difference.
Today is Thursday 12th October, I started TPN on Monday and omg I have and still feel so poorly. I'm still on 24hr fat bags, Fat bags are the white coloured bags and the calories are made up from Fat. They have slowly been increasing my rate and making sure my bloods are staying stable as your body can go into shock when it suddenly gets nutrition when it hasn't had it in so long. I'm struggling quite a lot with feeling sick and have got a lot of pain under my right rib which is where the liver sits, they are going to do an ultrasound to just make sure that everything is ok as TPN can be toxic on the liver but that usually would take along time to happen but they're just going to make sure. I feel so poorly I've got loads of the deep bone pain I get and just generally feel very weak, I did think that I would feel better instantly but I think its just gonna take longer than I think which is ok but I just wish that it would hurry up!!! We are also starting our TPN training tomorrow. We have to be trained on how to care for line and how to administer the TPN at home, its quite daunting if I'm honest the thought of been at home with no doctors and nurses around and having to manage it all ourselves, we only need to make one mistake I could end up with sepsis, a life threatening blood infection and it is just very scary.
So they have been wheening my hours down and I have finally been having some breaks from the hospital, they may only be for a few hours but it makes such a difference!! My bestfriend fran has also been admitted onto this ward and has also started TPN too. Its nice to be able to watch films in the GORGEOUS family room together and just have some teenage normality, weve been using the family room since day one and its been so lovely when I'm feeling rubbish to sit in a lovely non-hospital room. Me and Fran have also been dragging our mums into town so we can have some retail theraphy together, lets just say two wheels chairs trying to go round primark is a challenge in its self but totally worth it to get some retail therapy.
Today I have finally been signed off to do my TPN on my own!!!! Meaning I'm one step closer too home! Today is Friday and we are hoping to be home next Wednesday as they still need to sort out my TPN bags as bloods are still changing and also need to stabilise my blood sugars. I'm still been really poorly on the fat bags but isn't too bad as that's only two nights a week and the other 5 I have glucose bags where the calories come from sugars. I also feel really poorly when my sugars drop they go from 6.2 when my PN finishes then 15 mins later they're 2.9 and it makes me feel horribly poorly and so they're then running IV glucose in my break. They have said that it should improve as my body gets used to it and I build up some sugar stores aswell so we shall see.
Its now Monday and ive had a really bad weekend unfortunately I had a fat bag Saturday and bad sugars day sunday so feeling quite worn out but tomorrow we are seeing the home care nurse here and the hospital and then HOME WEDNESDAY!!!! I'm so scared to go home, the pressure of infection, doing all my own TPN on top off all my medications and everything else and not making ANY mistakes as it can be life threatening!! Its just so much to take on, I've been having nightmares where bugs have been climbing down my line into my heart like a visualisation and its freaking me out!! Although I'm seeing the head nurse from the homecare company so will be nice to ask her questions about having TPN at home and the way it works with support and deliveries etc.
Today, I am going home, we have seen the doctors and there ok for us to go home but be managed closely on blood sugars and my adrenal failure and things but I'm just pleased to be going home even if we have to see the community team. It was really good to meet the homecare nurse as she could answer questions more directly about how the company works, when the nurses are coming and what they do and how there's the 24 hour helpline that has a nurse at the end of the phone all the time for help and questions. She was so lovely and has put mine and mums minds at rest. My nurse is going to meet us at home and help us sort out the deliveries as she has said it will be overwhelming. I'm going to talk about deliveries and like the fridge and stuff in a future post, this one is far to long and want it to keep to just the starting on TPN.
So I am finally home and we have just done my first connection. I'm in bed as I'm exhausted and it has been a very emotional day. I got very upset when we got home as the realisation of it been my life now and not just been a hospital treatment, it is my life and its scary how I've declined to now needing complete intravenous nutrition and fluids. Although it is going to give me a lot more energy and should then mean I can do more normal teenage things making all the medical stuff seem worth it, rather than all the medical stuff and still been able to do nothing like I have been before been admitted. I'm going to go and have my first sleep back in my own bed and without loud nurses coming in and out and look out for a future post all about my TPN routine and how I set it up, basically all things Home TPN.
I hope this post has been informative and maybe helped anyone out there that's starting TPN and it has helped explain what the process is like and for others has shown what the process was like. And also hope you like the pictures below that help to explain all the info ive talked about:)
I hope you are enjoying my Blogmas so far and are looking forward to all the rest off them. Remember 6pm everyday:)
Evie x
