Destiny.

I have always believed in destiny. Accept when things happen, it was meant to be and know that it was for a reason. I was meant to have my transplanted kidney removed this Tuesday just gone. As it turned out, I happened to get the most severe attack of gastro I’ve had in a long time on Sunday night which started around 2am. Consequently, I didn’t sleep much after that and was so sick the next day my husband had to call dialysis to say I couldn’t come in until the afternoon. I could hardly walk from the cramps in my belly and went to see my GP who wanted to send me straight to Fremantle Hospital E.D as I was in such a bad state. The renal doctor on call there said to wait as I didn’t have a temperature or high blood pressure. I knew this was bad news for the surgery. A few hours later we got a call from the surgeons rooms saying the surgeon had slipped a disk in his back and has to cancel all his operations until further notice.

I don’t really know how I feel about losing my kidney. I know for sure that I feel really sad as it is my mums and knowing what she went through to give it to me. She insists that she would do it all over again and wonders if there could be a chance I could give her this one back then she could donate her other one. What can I say, a mothers unconditional love. The docs tell me that as it is no longer working it will be better for me once its out as I get to stop taking the yucky anti-rejections drugs including steroids. The other thing is, transplanted kidneys hide anti-bodies. Anti-body levels is something they check to match potential donors so it is vital that they get a true reading to be able to get a closer match. I know that everything that they are doing now is all for a more successful outcome.

The plan is to remove my transplanted kidney at the same time a peritaneal tube is inserted. This form of dialysis will give me the independence of having dialysis at home. I know I will appreciate not having to into hospital three times a week for treatment, but not sure how ill go with a tube hanging out of my belly. I love the beach and I pretty much have a pair of bikinis for each day of the week. You could say I have a passion (or obsession) for beach fashion. I can swim in the ocean with that form of dialysis but just need to make sure I change the dressing as soon as i get out and keep the wound area dry. For now, I must be grateful that dialysis is keeping me alive, even if it means tubes hanging out from my body. I know how lucky I am as I have my legs, arms, sanity, a beautiful home and loving family. I just cross my fingers someone’s kidney comes along to save me sooner rather than later. I know I will be able to cope but not knowing for how long I will have to live like that is the scary part.. Happy Haloween people.

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5 thoughts on “Destiny.

  1. Hey there! I just found your blog and thought I’d let you know that I’m kind of going through the same situation you are! I’m in my 30’s and have had kidney failure for 2 years and am currently also waiting for a transplant, although this is my first one. I’m blogging about my wait as well to keep my friends and family up to date on what’s going on. I’ve been doing peritoneal dialysis for almost six months, and although I can’t stand having to do it (or having the tube hanging from my belly), I am extremely thankful that I am not having to do dialysis like you were! Stay strong! I’ll follow you and cheer you on! 🙂

    • Hello there. Thank you for your message. It’s nice to know that there are people in the same situation. I am due to get a peritaneal tube on the 28th of this month so cross fingers it will work for me. I am not sure how I’ll go with dealing with the tube itself but if it saves me from coming into hospital three times a week, it will be worth it. I was on heamo 6 years last time so I am happy to try another way. All the best for you too and hope a kidney comes soon. I think you have a better chance of getting one over there than you if you were waiting over here. Organ donation is in such a sad state here. Does that mean you have to pay for your treatment and also when you actually get a transplant? Luckily our health system is very generous! Maria x

      • Hi Maria!

        Where do you live? Guessing by some of your terminology, I’d say England? (I guess you can tell I’m in the US… Texas to be exact.) Our health system is helping out with a majority of the treatments and the surgery, but I do have to pay for a good portion of it. It’s one of the main reasons I’m still working full-time! Without my job and the health benefits I get from it, I’d be screwed!

        Wow! 6 years?? Do you have a shunt in your arm? Does it hurt? I’m absolutely TERRIFIED of having to go through hemo, that’s why I chose to go with peritoneal. Based on what you’ve been saying, I think you’re going to really like peritoneal. At first, when you are doing “manual” exchanges, it will feel like you are constantly having to do them b/c it’s everyday… four times a day. But each session is pretty quick and you can go about with your life! Plus, I’ve never been wiped out like you have been with hemo. I do an exchange at work (I also do the cycler at night), and am totally fine afterwards! Eventually, I’m assuming that you’ll be able to move to a cycler, which will do your exchanges for you at night while you sleep, so you won’t ever feel a change to your day-to-day routine. Life will feel almost normal again. 🙂 You and I are way too young to be sitting in a hospital everyday! 🙂

        The only thing you might not like, other than the dangling tube, is the whole swimming issue. Your doc said it was ok for you to swim, but mine said it was off limits. She’s also very strict and doesn’t want us taking any chances with infection, but if you’re careful you can totally avoid that issue!

        Roberta

  2. Hi roberta. I live in the very beautiful land of Oz, Australia! I live in a region surrounded by vines called the Margaret river wine region and it has the loveliest coastline and forest you have ever seen. So I have just over a week before I have the pd tube put in. I am trying to visualise it in so I don’t get a big shock. Apparently it is not safe to swim in pools but the ocean is fine once the tube has completely heeled. I am very much looking forward to the day I can jump into the sea as I am a beach babe at heart. My hubby is a keen surfer and as summer is coming, our life is all about the sun and surf. I work at a shoe store and love my job but have had to cut back since starting heamo. Another reason I am looking forward to pd. I have a great life and I had an amazing 13 years with my last kidney topping it off with a trip to Hawaii in march for our 10 year wedding anniversary. It was so beautiful.

    I had a shunt/fistula for the first 6 years but had it removed after I got my kidney. I was only 18 when I first started dials and it suited me back then as I could go there, get it done and feel normal when I was home. All I wanted was to be like envy one else and somehow I coped. I’ve only been back on 3 months and already so sick of the driving to dials, the time it takes and how I feel after. So many positives to change to pd. I am hoping my belly will be fine and I get sent a cycler. In my spare time I love to cook, hang out with my friends kids, go to the beach with my hubby and playing with my beloved dog Karri. She is a an Australian breed, very similar to the dog in ‘red dog’ if you haven’t seen it, you should! What do you like to do in your spare time? Where do you change your bag at work? Xxmaria

    • Hey there! Just read your latest blog… keep your chin up! Life is full of set backs, it’s all about how you deal with them that effect you. You sound like you have a strong and positive attitude…keep that up! It’s challenging, but only you can make that happen. Your surgery WILL happen… if you have to miss a concert, I’d think your life is worth it. 🙂 And Christmas will be where ever you make it, so you won’t ever miss it. There’s a possibility that I might be spending my Christmas in the hospital, and if that’s the case, I just told my mom that they better bring a mini tree to brighten the room! LOL!

      Your area of Australia sounds beautiful!! I’ve actually always wanted to visit Australia… I can tell that it’d have a lot of similarities to the US, but enough of a difference to keep it interesting. 🙂 Who knows, maybe one day I’ll make it out there and I’ll have to look you up! At that point, we’ll both be with our new kidneys, and living large! haha… I’m like you, in my free time, I love to cook, hang with my friends, travel…but there’s no beach to enjoy, so you’ve got one up on me there. I’m as pale as they come (Irish background) so it’s probably a good thing that I’m not a beach babe. Wish I could be though!

      At work, we have a designated room where women who just had babies can go to pump their breast milk…it’s not a big room, but it’s private, so I do my manual exchange there. You can get some cool looking bags (that have insulation for sodas, etc.) and I use that as my “dialysis” bag, since you have to keep the dialysate warm. It does a pretty good job. Btw, instead of loading up our replies on your blog for everyone to see, here’s my email address… nachomama311@gmail.com. We can move our convos there if you want…

      Roberta

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