Friday, 7 June 2013

Well, what a day this was! Blood tests, A&E and shocking blood results!!!

So, today I went to Basildon hospital for a routine blood test ready for my appointment on Monday and I ended up in A&E having an ECG, being attached to a heart monitor and having a chest x-ray!! :shock:

I went to get my routine blood tests done today and as Mark had the day off as well, he came with me to have a blood test as well (blood group). As I was advised by the dialysis nurse to avoid taking blood from my arms because my veins are rubbish, the phlebotomist, tried in my left hand and got nothing, then tried in my right hand, again, got nothing. I was fine at this point and she said she was going to get another lady to come and help.

As she left, I started to feel a dizzy, I put my head down between my knees, she came back and laid the chair down for me. I started to feel much worse, feeling hot, sweaty, struggling to breathe. I then had an overwhelming sense sickness, I was given a sick bowl and began to seriously wretch, it was agony! I had the most horrendous pains in my chest, I was doubled over in pain. The next thing I know my renal consultant walks in with another lady who shouts out "I have made the call!" The consultant took one look at my and said "Oh my, you are an awful colour!" my reply "It's all your fault!" he felt me and said I was extremely clammy.

After a few more seconds the teeny, tiny blood test room was filled with several people! By this point the pain had subsided, the doctor asked me some questions and then said to the staff behind him "I am certain it is not a cardiac issue, but I want her in A&E for tests!" I was wheeled to A&E in full view of the whole waiting room, I was so embarrassed! I was put in a side room and given an ECG and had a cannula put in, I was then attached to a heart monitor, BP monitor and was waiting for a chest X-ray .

By this point I was feeling fine, embarrassed, but fine. The lovely husband then told me, while I was in the room, there was people running about shouting "MOVE OUT THE WAY, CARDIAC ARREST!!" :shock: :shock: :shock:

Thankfully, it was nothing serious! It was very scary though... On a plus side, and slightly confusing, my husband casually asked what my GFR was and it was 36... THIRTY SIX??? :D I am a bit confused, but I am sure not complaining! Not sure what will happen now with regards to a transplant.

Wednesday, 22 May 2013

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!

Friday, 17 May 2013

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!

Thursday, 9 May 2013

Back to the gym!


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!

Thursday, 2 May 2013

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.

Monday, 29 April 2013

New Clinic Appointment

Today I have been to see Dr Barton at Orsett Hospital, I have also met "Nurse Sue" and the dietician.

We talked about the symptoms I have been experiencing. One unusual symptom in particular, pins and needles! On Sunday, I had a terrible onset of pins and needles, it started in my tongue and around my mouth, then progressed across my face, down my neck and then my left arm. It was a horrible feeling, but apparently it was set off by anxiety!

The itching and tiredness are a direct result of my kidneys. I have been prescribed some cream to help with the itching and some tablets if the cream does not work, as for the tiredness... well, nothing to be done, but hopefully the cream to help the itching will stop me waking at night, meaning I am getting proper sleep so hopefully, feeling less tired.

We briefly spoke about dialysis and the differences between Peritoneal Dialysis and Hemodialysis. Dr Barton said, if he was a kidney patient, he would go for Peritoneal Dialysis (PD) first then on to Hemodialysis (HD) afterwards. He did explain why, but my mind is a bit of a blur at that point!

After talking about dialysis, we touched upon transplantation. It was discussed that someone with a different blood group could still be a living donor, as they would do something with my antibodies, again, can't remember all the jargon, by this point I was just nodding and smiling like the Churchill dog! "Oh yes!" If I was to get a living donor, they would look at starting the process now, as it is a very long drawn out affair. My next clinic appointment is in 6 week and he said he would do the referral then, I am not entirely sure of the process, but I will soon find out!

During the appointment nurse Sue came in for a chat, she was lovely. I now have to wait to get an appointment to see her to discuss all my options about dialysis and such like. It is all a bit overwhelming!

After speaking to the doctor and the nurse it was then on to meet the Dietician! I have been advised that I can have 55g from protien and have to limit my potassium intake (although my bloods were OK, prevention is better than cure and better to be on top of it from the start!)  I am also now limited on how much dairy and eggs I can have, and I have to make sure I eat 1600 calories a day!

So there we have it! Next stop, seeing nurse Sue!

Thursday, 18 April 2013

The Harsh Reality

 My previous two posts have now brought us right up to now! Thursday 18th April.

This week has been a massive wake up call to a harsh reality!

So my appointment on Wednesday did not go how I expected it to. On the Monday evening I had another blood test done so it could be compared with the one done on Thursday the previous week. I was really hoping that the Thursday's results were wrong, a fluke, a mistake, a rouge number just messing with my head! But that was not the case!

I was so pleased to be seen by a doctor that has followed my care from since I was pregnant the first time, he knows me, my situation and what I am like at receiving news. Not that stupid doctor from December.

We discussed my results and he just looked at me and said "You know we are looking at progressive kidney disease don't you?" I just smiled and choked back the tears. He asked if anyone had ever done a graph of my results, which they had not. So be began to look through my blood tests from 2007 and dotted them down on a chart. It did not look good, you could very clearly see the downward path my results were taking.

He has said that based on the trend he was looking at, he estimated I could end up with End Stage Renal Failure within the next 4 - 5 years or so. He did stress though that was based on historical readings and there is a slight chance with extra close monitoring that could be prolonged and it is not set in stone. But also that it could go one way or the other.

So there it is... the 10+ years I was originally told, has literally been halved! We started discussing living donors as my husband has been very keen to know whether he is a match or not. It was discussed that if my husband was a match, or I was able to get another living donor they would look at a preemptive kidney transplant in the next couple of years. I am not really sure how I feel about a living donor, it is such a huge thing and so many risks. This is something that will need a lot of thought.

My care has now also been transferred to a more specialist clinic, known as a Low Clearance Clinic (please note the link it not for the clinic I am attending, but some general information on what a low clearance clinic actually involves) My next appointment is Monday 29th April, I have to have another blood test before and I also have to monitor my blood pressure.

I have been so up and down the past two days, feeling it is not fair, why me. I am eating healthy, I exercise, I am trying to do everything right, but it all seems like it has backfired!

I know I have a long and bumpy road ahead, so... Buckle me in and let the journey begin!