Help, I love someone with chronic illness…

Came across this great article…
http://www.mychronicconnection.com/#!Help-I-Love-Someone-With-Chronic-Illness-What-Can-I-Do/c1i19/55e47bd60cf2c1d1fd65511e

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Ever increasing…

Please just work! Just been told that I will be having some more plasma exchanges this week as my protein isn’t going down like it was previously. Had my mind somewhat set on being discharged mid-week so it’s a bit of a set back but I’m staying positive. I would rather stay in and get treated properly than discharged and have to return. Happy thoughts!  

Frustrated

Last night, for the first time since I had my tesio line put in (which was about ten days ago) I managed to lie in bed and sleep properly! I know it sounds like something so minor but for ten days, because I have had this tube going from the top of my neck to the middle of my chest, sleeping has been very difficult. The first few days it would just throb and then it would like poke every time I moved. Finally yesterday I left like I was getting used to having this tube. The last ten days I have been sleeping sitting fairly straight on the hospital bed so that the tube didn’t poke my neck and I would just lay flat on my back the whole night. The sleep is so unsatisfactory though!

My favourite sleeping position is on my front or my side but I have been too scared to even attempt this. Last night when I was going to sleep I put my bed back flat and lay on my side….and there was no pain! It was actually so comfortable! I even managed to kind of sleep on my front a bit. Ok it wasn’t like sleeping at home but it was so much better than sitting up and in one position!

I woke up many times during the night to pee due to these water tablets which are trying to reduce the swelling in my feet. I seem to be peeing every hour but my feet at still just as swollen! The last time I woke up around 6:30am I looked in the mirror and noticed a HUGE bruise all around my tesio line. I freaked out! What the hell? This line that I have been tiptoe-ing around for ten days and now I have this huge bruise and I have no idea where its from! All that was going through my mind was that I had damaged the line in some way! I mean why else would I suddenly bruise like this?! The doctors have warned me again and again to look after my line as its working well for me and it’s a line that I will have attached for at least a few weeks to come, in case I need any more plasma exchanges. Freaking out! Thankfully one of the other patients in my bay was awake, and she has had a tesio line for years so I asked her for some advice as I was freaking out and there wasn’t a nurse nearby. She looked at it and said that it has never happened to her before but then she said that she noticed that I was sleeping on my side and my front last night and then it clicked! As comfortable and as nice as it was to sleep on my side and on my front, my tesio line does not like it! What a sense of relief to know what the cause was though! I did double check with the nurse when she came round (as I am still freaking out a little that I may have damaged my line) but the nurse reassured me that it looked okay and just to check with the doctors when they come on their ward rounds later in the morning. Fingers crossed that it is just a bruise and that the line is all okay!

When this tesio line was inserted, I didn’t know much about it. As in I knew that I needed it for my plasma exchange, but that was it. I assumed I would have it in for the seven treatments that were originally planned and then it would be removed under local anaesthetic, in the same way it was put in. In the last couple of days, under one of my doctor friend’s advise, I asked the doctor about removal of the line and the doctor confirmed my worse thoughts. He advised that I should keep the line in for a few weeks at least following my discharge, in case my kidney function dropped and I required more plasma exchanges. It made sense – the procedure of putting the line in was painful and it isn’t always successful, so when I have had a line put in and its working well, why remove it unnecessarily or prematurely? But my mind does not think like this. I am 25. I do not want to learn to live with tubes coming out of body. Having to wrap and hide these two tubes every day. Not being able to shower properly because of these two tubes sticking out. I don’t want to learn to live with them. I just don’t. I had purposely tried to avoid coming to terms to showering normally during the plasma exchanges as the line was going to come out. But now it wasn’t. So I will have to learn to live with them, as much as I don’t want to.

I have woken up and am just sad and frustrated with this stupid tube, and now I have to go back to sleeping in the worst position every night! I am not a happy bunny and have a few anxious hours to wait to make sure my line is okay after last night.

Steroids and appetite

Ugh! I am on a pretty high dose of steroids and it makes you hungry all the time! It’s doing my head in! I am trying to control what I eat as you gain weight very quickly while on steroids, but it is so hard when you just want to scoff all the time! I have so far gained about a stone since I have come into hospital. I am hoping at least some of this is water weight that should hopefully start to vanish over time. Hospital food is the worst as well! As I am on a renal ward, the use of salt is pretty much non-existent and my god it tastes so bad! I didn’t mind it too much until I had a taste of home food yesterday. My mum packed me some food for dinner last night and it was like heaven! I could have home food brought it every day because my family would, but I am very weary that the reason the food at hospital lacks the salt is because that is what my body needs so guess I just have to grit it and bare it!

Day 17…

Annoyingly, the only visible symptom I have from illness is swollen feet! But my god are they painful! I know it sounds silly and ridiculous but the pain is unreal! They get worse through the day and then throb in the evening. The reason behind the swollen feet (as far as I understand) is due to my kidneys not functioning proper and therefore water leaking and being stored. Annoyingly when I was first admitted into hospital my feet were fine, but with all the fluids that they pumped me full off, now I am pretty much unable to walk! It took me ten minutes and a lot of pain just to put some shoes on yesterday! It was so bad that I even considered not going out!

Thankfully the doctor has started giving me a drug called frusemide, which should help get rid some of the excess water. I was started on it a couple of days ago, but, even though I am peeing all the time, there doesn’t seem to be any improvement! Thankfully the doctor has doubled the dose today, so hopefully there will be some progress!

My blood pressure has been very high over the last few days too – was 192/95 this morning! The doctors seem to think removing some of this access fluid should help with that too so fingers crossed! Another quite chilled day at the hospital today thankfully.

Not any more plasma exchange (yay!) but have to undergo a few injections for ovarian protection (boo!) due to my cyclophosamide treatment ten days ago. When the cyclophosamide was mentioned and used, I didn’t care about the side effects. I just wanted the treatment done. Thinking about it now, the effects on my ovary are obviously huge. I am a 25 year old woman who has dreamed of having a family all her life – my family mean the world to me and that always will be the most important thing – so onwards with these injections with the hope that it all works!

SHARED – I’m losing so many pieces of …

Sharing this piece from a blog I follow as it summed up my feelings so well. Credit goes to the author. 

I’m losing so many pieces of myself at the moment. My patience, my optimism, my determination, everything that made me who I was – they’re all being pried away from me, and I’m exhausted. I’m just so exhausted, so I just let it happen. I just watch like an outsider peering in. I feel powerless […]

https://illuminatingkate.wordpress.com/2015/08/22/23/

Day 16

Today I finally got a break from treatment. After eight consecutive days of having plasma exchange, today I’ve been allowed a day off! And to top it off, I’m being allowed out of hospital for a few hours leave! Definitely a good day today! 

This is what my plasma machine looks like.  

   It filters the plasma in my blood and replaces it with donor plasma. Thank god for blood donors! Every session I use twelve bags of plasma! That’s insane when I think about it. The machine itself is very peaceful and painfree thankfully. Hopefully I won’t be needing to use this machines again. Fingers crossed!