Information overload!!!

Well after almost 2 hours of chatting with the nurse about all the options, my head feels completely full to bursting!

To start off with the the nurse Debbie, talked briefly about why I was there, making sure I understood the reasons, etc. Then she did a slide show with information about all the different dialysis options available and what would happen with each option.

First she discussed the difference between Peritoneal Dialysis and Heamodialysis which I mentioned in my previous blog. Then we looked more in-depth about each one.

Peritoneal Dialysis

This is where a bag of solution which is put in to the peritoneal cavity via a tube, the solution attracts the water from my blood, bringing all the toxins with it. After a few hours, the solution is drained off and more goes in. I would need to have an operation to insert a tube to my abdomen, this will require an overnight stay in the hospital and about 2-3 weeks healing time. Once that is done I will have training on how to carry out the procedure, depending on which one I opt for.

Continuous Ambulatory Peritoneal Dialysis - CAPD

This is done 4 times a day, everyday and takes about 20-30 minutes each time. I will basically drain the fluid that is already inside, then once that is drained I will attach another bag full of solution and "fill myself back up". The other option is...



  


Automated Peritoneal Dialysis - APD


This is similar to above, but done during the night and by a machine. This is the option I think I am going to go for first. It seems like the less disruptive to my day to day life. If I do reach dialysis stage, then hopefully with this option I can carry on working. I have one of the nurses coming to my house on Friday 7th June to discuss this further and to ensure I have enough space in my house to accommodate all the equipment.

The only issue I may have with the PD is the fact I have a scar on my abdomen from my kidney operation when I was five, also I have internal scar tissue from my endometriosis. I will need to discuss this further with the actual surgeon.

With the Heamodialysis there is an option to have a home Heamodialysis machine, but this is something that I would not consider as it would mean me having to stick needles in myself!!

If I am unable to have PD then the next option is Heamodialysis, for this I would need to have a fistula made. This would involve an operation where they join a vein and main artery together, this would need to be done some months before actually needing it to give it time to fully heal. Because there is a chance I may need this in the future and the fact my veins are completely rubbish, I have been advised that blood tests ideally should be taken from my hand now because my arms are "special" and I need to preserve my veins.

All of the above is something that is not certain, I may, with any luck avoid having to have any form of dialysis depending on when and how I get a new kidney.

Kidney Transplant

The best option for me is to have a living relative donate a kidney, luckily for me I have my Mum and Dad, both willing to go for all the relevant tests to see whether they are a suitable match. I also have Mark and his step-Dad willing to go through the tests. This is the best option as the Kidney would be in the best condition.

If none of these are a suitable match for me, then there is the option of going in to the paired-donation scheme. Lastly, I would go on the waiting list.

On Monday 10th June I have an appointment with Dr Barton who is my renal consultant. He said he would be looking to do my referral to Guy's Hospital to have tests to make sure I am a suitable candidate for a kidney transplant. He will also be advising them I have four potential candidates to be living donors.

I am so scared of having someone I love go through such a massive ordeal just for me. But I am so scared of not getting a kidney and having to go through dialysis.

I have got so much information given to my by the nurse I feel I have brought a library home with me, but at least I know there are plans in place and now I feel a bit more relaxed and at ease, I now have contact with the nurses, so any questions or worries I have, I can give them a call and put my mind at rest.

So here we go, I have now been strapped in to the roller coaster, just getting ready to start the ride!

Feeling anxious about Wednesday!

So, I am sat on the internet doing some research in to Kidneys, donations, dialysis and all the other crap that goes along with this stupid disease! Don't get me wrong, I am not the sort of person who looks on the internet and starts to go in to a blind panic, I just like to know what is going on and being said, so when the doctors and nurses start telling me things, I am not sat there scratching my head wondering why they are talking a foreign language!

I know for definite that I will be having a kidney transplant, that is a certainty. However, how the transplant comes about is not a certainty. My Dad has very kindly offered to be tested to see if he is a suitable match to be a living donor. The only issue is, we are not the same blood group! So if my Dad is a tissue match, it would be a blood group incompatible kidney transplant. If my Dad is not a match then the next step could possibly be the paired-donation scheme.

If that is not an option then the next stage would be when I am almost at the point of needing dialysis, then I would go on the NHS kidney transplant waiting list.

There are so many things that worry me about the whole process. Mainly the immunosuppressants and the increased of infections. I have quite a few questions written down to ask the nurse on Wednesday about it all.

I think I just hate the waiting, knowing something is going to happen, but not knowing when. Also not knowing 100% if I will need dialysis or whether I can get a donation before I reach that stage. Everything is so vague, which I hate.

I am the sort of person who has to know everything about what is going on! When Mark and I had a day in London for his birthday I had meticulously planned every little detail, where we were going, how we would get there, how long it would take... I even looked up on Google maps street view so I knew exactly how to get to a restaurant and noted down some shops so as we passed them I checked them off and knew I was on the right track!! So all this Maybe this, could be that is sheer hell to me!

I feel like someone has told me make my way to Scotland, then shoved me out the door without a car or map! I have no clue how I will get there, just that I will!

Hopefully things might be made a little clearer at my appointment on Wednesday, if I can put plans in place for each eventuality I will feel a little bit more secure in knowing what will happen for each situation.

Ugh, hurry up Wednesday, I need to know!

Back to the gym!

NO MORE SLACKING!!

I have had two weeks of not going to the gym and last night I went back for circuit training. Oh boy did I feel it! I spoke with the doctor about going to the gym and was advised that I can do isotonic exercises, but to avoid isometric. I had a chat with the trainers at the gym and they have been great!

I have another blog all about my fitness and weight-loss, showmethetummy.blogspot From Fat to Fit. I am going to keep up with my training, I do not want to lose any more weight, but I want to get in to shape and be as fit as I possibly can be. At first I felt a little bit annoyed that I had worked so hard on getting fit and healthy, yet my Kidneys still went downhill, but now, I know that being as fit as possible IS A GOOD THING!

Feeling a bit up and down!

Today has been a bit of an up-down day!

I spoke with one of the other renal nurses, Debbie, to make an appointment to go and see the renal unit and have a chat about my treatment plan. She was very lovely on the phone and said the appointment will take at least an hour. I will be shown around the unit, then have the chance to talk about what options are available to me. It also gives me a chance to ask the questions I currently have whirring round my head right now.

What is the process for living donor transplant?
How long does the process for testing a possible match take?
What is the recovery time for both donor and recipient?
What are the risks of certain anti-rejection medication?
What happens after the transplant?
If I cannot get a living donor what kind of dialysis options are available?
What is the process for starting dialysis?
How ill will I feel?
Will I still be able to work?

I am sure when it comes to my appointment I will have loads more questions and even though I will write these down and take them with me, I will still forget to ask them, or forget the answers!! Thankfully Mark has managed to get some time off to come with me.

Today, after speaking with the nurse, I felt quite nervous and have done throughout the whole day, I guess it is fear of the unknown. Also it is starting to feel more real now. Before, it was just a mix of jumbled words, now those words are turning into actions!

I do sometimes feel quite scared when I allow myself to think about the "what ifs" I just can't help worrying sometimes, what if I do not get a living donor match? What if I do, but it does not work? What if I do get a living donor and they end up ill? What if I end up on dialysis for years before getting a kidney? What if I have to stop working? What if something goes wrong? What if I never get a kidney? How will all of this affect my live and my children?

I also sometimes feel angry and why me! I try so hard, I take my tablets, I watch my health and what I eat, I exercise, I have lost weight and doing everything in my powers to stay healthy, yet it is just not working! It just does not seem fair.

When I am done feeling sorry for myself, I do try to look at the positives. I know about my disease and knowledge is power after all, so I can try and stall the progression as best as I can, which is better than if I did not know anything, then one day end up in hospital hit with renal failure. I can plan for the different eventualities and learn about what the journey ahead could bring! I also have to tell myself, it could be worse, at least I can get better, at least there is something that can be done about it.

No doubt this roller-coaster will have some even bigger ups and downs, I am just pleased I have such a supportive family and friends around me. My next appointment will be on Wednesday 22nd May.