Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Fingers crossed…

on November 23, 2012

Tomorrow (Thursday)  I go to hospital for an operation to get a supra pubic catheter in… Just now I have the urethral catheter and have had constant kidney infections which of course makes everything with MSA seem a 100 times worse. It has taking a long time to get here, at first the anaesthetist refused to consider it the operation as its normally performed under a general anaesthetic but the risks are way to high with someone with MSA.

It’s taken a long time to get the neurologist, urologist and the anaesthetist and to agree we can do the procedure under a local….At this point I would have done it with no pain relief, the catheter has been without a doubt one of the hardest thing for me to come to terms with.

May sound stupid to people but its such a huge personal invasion on your life and at 38 it has impacted on me massively. I want to have as normal life as I can and be able to snuggle up with Andy without constantly being aware of this horrible tube…I’m sure you understand without me saying it out loud….I feel massively unattractive with the catheter, it has reduced me to tears on many occasions.

So now today I can’t eat anything which isn’t really a massive issue as I choke often anyway, so I’m sipping on fortisip (yum) and waiting till tomorrow. If I’m honest right up until today I’ve been fine about the op, but now all of a sudden I’m very scared….It’s a very simple procedure done zillions of times but not on me and not in my hospital and not with anyone with Multiple System Atrophy (MSA), so its new for us all.

I want to be in, out and home in time for I’m a celebrity…. Back with my hubby and my daughter. So although I will still have a “catheter” I’m hoping, praying and hoping again that the infections will be less frequent and I’ll feel just that little more feminine.

We as a family know that things have changed very quickly, very dramatically in a very short time but please, please, please let tomorrow go fine and we can look forward to Christmas with my incredibly special family.

Mum goes to hospital tomorrow (Thursday) for a “minor operation”. Everyone in the house is trying to pretend everything is ok, there’s been a constant stream of visitors to see mum, her best friend Anna and her other best friend Tricia, both of whom have been really really good to me…

My granny has a cold so I know my mum can’t see the person she really want to just in case she gets her cold. 😦

When everyone went away Andy, me and my mum went through all the motions of a normal night but when bedtime came I couldn’t help squeezing her as tight as I could.

Today is Thursday so it’s the day of the operation. OMG I’m soooo scared but when I leave for school I tell mum I will see her after school and I love her. She texted me right up till she could and then when the texts stopped, so did my breathing, was she ok? what was happening?

Sitting in maths I started to cry and one of my teachers made me a cup of tea and really helped me. Andy kept texting me funny texts trying to be his ususal self. Please god, let her be ok, let her just have a break. I felt sick, my mouth was dry and I wanted my mum more at that moment than any other moment.

I knew something wasn’t right because it was taking so long, so when Andy texted me to say mum was back in the ward, she was ok after some minor complications I swear I think I started breathing again at that moment. The complications weren’t so minor because with MSA there is nothing minor, it was because her blood pressure dropped and they had to get as much fluid into mum as possible.

My mum is the the strongest person I know though, she said NO to staying at hospital and arrived back home at 7pm. She looks tired, she’s very sore but she’s my mum and she promised before she left she would be back and today she still hasn’t broken her promise.

11 responses to “Fingers crossed…

  1. Sam, I will keep you in my prayers. I was diagnosed with MSA and have a catheter and swallowing issues as well, so completely understand how emotional you feel. As a young mother of two I wonder where this Journey will take us. Stay strong!

  2. Jim Dunlap says:

    Keep fighting the good fight. we are with you and watching, also getting strength for our journey from you. Jimmy D.

  3. Hi Sam
    I send you all my love and prayers that tomorrow goes as smoothly for you as it possibly can, I know we’ve never met and probably never will but you will be added into my prayers, I thank you for being brave enough to do all of this as such a young age in trying to make as many people aware of this vicious disease as possible. My husband Geoff has MSA, we have been married 35 years in April and I cannot believe he is the same man I married, this disease takes so much, but I will pray that the healing angels surround you today and for ever more to give you the strength and courage to keep fighting this thing,
    Love and hugs Carole xxxxx

  4. Debbie Hoad says:

    So glad to hear you are back home Sam and hope you are a little less sore today. Fingers crossed for less infections. My husband had to go in for day surgery for a hernia before he was diagnosed with MSA and he was in a terrible state after the surgery. The nurses gave him a really hard time because they thought he was putting it on and I had to really fight hard for him to be kept in overnight! When he was diagnosed with MSA all became clear. I realise now that I could have lost him that day. Hope you have a great family weekend – despite the weather! Take care.

  5. annaw53 says:

    so strong we were worried for a while but knew you would make it home very strong willed love you xxxxxxxxxxxx

  6. andyc2204 says:

    That was one very long stressful and emotional day, thank god all went well,aside for a few hiccups with sams blood pressure, samantha you are my star, look forward to you feeling better hunni, love you xxxxxxxxxxxxxxxxxx

  7. Lana Schimpf says:

    My husband was DX with MSA in Aug. 2005. He had a supra public cath placed in 2009. Surgery is tough, but one of the best things with this awful MSA that we could have done. He did in and out cath every 2 to 4 hrs. before that, very painful. I pray you will have the same great results he has experienced. Lana caregiver of Larry.

  8. Tanya says:

    Hi Sam. I had my indwelling catheter placed three months ago and have had infections all the time. Is there really a big difference with the suprapubic? I might consider having one because of the infections and also because it is indeed the ultimate passion-killer. Not at all sexy. I wish you the best with this choice and hope you are well again in no time.

  9. wilma0750 says:

    You samantha are a truly amazing daughter and im so glad your mine the stregth and courage you show even on the crap days are asstounding i am sooooo proud off you . its a mums job to make there children better and i would give my life for u if it would make you better no ones listening tho cos ive asked an asked so sumphy all i can do is to be there for you and your amazing wee family luv u infitity the video is heartbreaking but amazing xxxxxx

  10. Praying for the whole family. God be with you all, loving you and giving you strength.

  11. My mom has had MSA for 18 years now … it is a hard journey but I can see you are a beautiful family. All my best … J

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