My current situation…

So today is day 15 of my current stay at hospital and this has been the life changer. 

I was due in hospital on Friday 14th August to have a routine renal biopsy, so that the doctors could try and see if there was anything wrong with my kidneys when I wasn’t going through an episode. From the Wednesday I had had a slight temperature and felt flu-like but didn’t think anything of it as my tonsils had been removed so I just assumed it was nothing. I went into hospital ready for my biopsy, only to be told that my temperature and heart rate was sky high and that my kidneys were leaking proteins again. Here we go again! This time was a lot worse though. Ordinary people never leak proteins if their kidneys function correctly, but I normally leaked 80-120. On my admission my protein was over 500! The doctors were very worried as my kidney function also dropped to 5% of what it should be! These kind of numbers are the kind that require dialysis and the doctors were unsure if my kidneys were going to be able to recover. The doctors pumped me full of antibiotics and fluids and organised a renal biopsy as soon as my temperature and heart rate was stable. 

The biopsy happened on Monday 17th August and revealed that I had a problem with something called complement, which was causing my kidney to attack itself. The doctors gave me a working diagnosis of having C3 glumeronephritis. It was a small reassurance to have a possible diagnosis, but the doctors still didn’t know what caused this or why this was happening. By the time I got the biopsy results, my protein was over 680! The doctors needed to take drastic action if there was to be any chance of trying to save my kidneys. They started me immediately on a high dose of steroids – the bane of my life! The weight gain and side effects did my head in but if I wanted to try and save my kidneys, it was steroids or nothing. 

This time steroids wasn’t going to be enough though – the doctor suggested I started another two treatments to try and bring my kidney function up. The first was cyclophosphamide injections and the second was having plasma exchange. 

Cyclophosphamide is a drug that is used in chemotherapy but was going to be used in a lower strength. The possible side effects were horrible – nausea, vomiting, hair loss, fertility problems to name a few; but none of this even entered my head. I just wanted the treatment. I had my first cyclophosphamide injection on 20th August. Normally patients are given ovary protection prior to starting to drug but due to the urgency required, I’d have to wait until after my treatment for the protection. 

The second treatment was plasma exchange. The blood is made up of cells and plasma. The plasma is made up of antibodies which fight disease. The doctors wanted to replace the plasma in my blood with donor plasma, in the hope that the new plasma would replace any faulty antibodies I had. In order to do this I needed to have a tesio line inserted. This is an internal line into my blood vessels. The line would be stitched into the top of my neck and then two tubes would come out of my chest. The line was inserted under a local anaesthetic. I had the line inserted on 20th August and I was ready for my first plasma exchange treatment on Friday 21st August. The process was 2-3 hours and I was having twelve bags of donor plasma replaced each session! I was honestly so frightened before my first session. I just didn’t know what to expect. Thankfully the process was pain free. I just lay in bed listening to music while modern technology did its thing. The doctor requested I have about seven of these plasma exchange sessions in the hope of some improvement in my kidney function. 

Over the last week, my protein levels have miraculously started to fall a little so something seems to be working! The doctors are cautiously positive, but one thing is now clear – at the age of 25, I have a chronic renal condition and my life will never be the same again. 

13 thoughts on “My current situation…

  1. I am glad you found my blog. My first trip to the rheumatologist was at 21. For several months I had been experiencing quiet a few unpleasant symptoms. (by unpleasant I mean anywhere from annoying to agonizing) It took about a year to get my first diagnosis and it was a relief to have something to call it. I already felt pretty sure it was Lupus so I felt validated and I was able to tell people what I had so I was treated as less of a hypochondriac. There are some things peculiar to getting sick young. People will tell you that you are too young for…whatever it is. Personally I still think I’m too young to have arthritis but I have had it for more than 20 years.
    It is good that you are writing. Writing will help. Finding people with similar issues, like a support group online or in person, helped me. In my experience (and this has been validated by many people with a variety of issues) the first year is the hardest. At 25 a year may seem like a very long time. But it will get easier. That is not to say it will be easy, just not a awful as it seems now.
    So hang in there. It sounds like you are getting good care from the doctors and nurses. Word to the newly sick, be as kind as you can to the hospital staff and any medical professionals involved. They are the ones who take care of you and they will often go the extra mile for a patient that is nice to them in part (in the hospital) because most of the patients are not. That is not to say that you should take a bunch of crap from anyone, doctors included. I have some essays I wrote several years ago that I plan to post in the coming days I hope you find something useful in them.

    peace, hope and being well,

    writeslikeagirl

    Liked by 1 person

    • Thank you for your comment. It was lovely reading it and definitely made my day. The doctors thought I may have lupus but I wasn’t showing all the markers so they couldn’t diagnose it. I know it will get easier. It’s just getting used to things I guess. Take care and keep it touch šŸ™‚

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    • Another fellow arthritis sufferer! I am nearing 25 myself and seem to have had it from the age of 16. Luckily, I have not suffered from Lupus but I am currently under investigation as to whether or not I actually have arthritis. Ugh! Anyway, it’s so great to know that there are others I can speak to and relate to. So glad to have started blogging!
      HP xxx

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  2. I am so sorry this is happening to you. To be honest, I’ve been close enough to being in your shoes to know how impossible it is to truly know how you’re feeling. It’s overwhelming, I know. It’s such a shock to the system when something so horrifically wrong happens overnight. I’ve been caring for my disabled mom since late 2010. One moment I was a regular 20 something gal going about building my career. The next moment my dad was in the hospital from drug abuse complications. When I stepped in to care for my mom while he was in the hospital, I found out he’d been abusing her. At about that time, her health tanked and she went from being fairly independent to needing round the clock care.

    Nothing’s been the same since, and our lives now revolve around hospitals, medications, test results, and medical appointments. It all happened so fast, and I was just numb with disbelief. I didn’t know how or why things were happening, and worst of all, no one seemed to understand. Friends began to drift off and it became harder to connect with people. Illness can be so isolating, but I hope you find some community support here.

    Any time you want to talk, just give me a holler. My email address is GiveUsThisDayOurPBJ@gmail.com if you ever want to reach me directly. My blog is also going to be doing a Bible study via email soon, if you’d be interested. It’s another way for people like us to stay connected when medically everything goes to hell. I’ll be posting details tomorrow. In the meantime, please know that I’m praying for you. Have been all day, and will continue to do so. God bless you. Audrey

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  3. Thank you so much for having a read of my blog posts and for following! It sounds awful what you are going through, it’s so scary when you don’t know what is happening. It’s great that you’re writing and that you’re sharing, I wish I’d began documenting my journey earlier. I hope things start to get a lot better for you, I would really love to stay in touch as I feel that, whilst I was fortunate not to have to have a plasma exchange, I was turfed in and out of hospital and also put on drugs given to cancer patients. Here’s wishing you the best of luck with this new treatment.
    HP xxx

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