At long last, it's arrived, his appointment for his first infusion after many many months of pure pain and agony. As it's not my story to tell, I won't say everything, just to say that he's had the first one.
The Unit is fantastic and they look after him so well (apart from taking off his wrist splints and hitting his hand to find a vein!). He flinches if I even touch his hand by mistake when shaving him or something!
I know that sounds odd, I don't shave his hands obviously, just his face!!! We have to do a lot for him as he just can't do it himself, it's not his fault. The same as all of us, there are things we can and can't do and if the others can't help then it has to wait until we can find someone who can help, or it just doesn't get done.
Fingers crossed it starts to work soon, he's had way too much pain.
Keep everything crossed for him everyone, we NEED this to work for him ASAP.
These appointments come around quick don't they. Phew.
We went through my results, not looking good as they're still going the wrong way. Although he's pleased with my blood pressure which is good news!!! Also the combined kidney/diabetes medication seems to be helping some of the results.
However his face kind of changed then and he said....
"I think it's time you need to see the Renal Nurse to discuss Dialysis".
Boom!!!! Just like that. It was scary. I obviously knew it would be coming at some stage, but not now. It's something that has always kind of scared me. I remember seeing a patient we used to take to London who was having dialysis every other day, come what may, holiday's, Christmas, you name it and he had to go in and have this dialysis.
This time last year I saw all the other patients in the ward having dialysis too. I'll admit to being a bit scared about this. Hopefully it's just the unknown, fingers crossed it's just the unknown that is so scary for me.
Out little Domi had her 21st birthday!!!!! She is going to have Tea Party at the weekend bless. She's still doing well.
She has an untreated thyroid and has some tumours in her liver, she is blind and almost deaf, but she is doing really well. Her vet says he has no problem with just looking after her, but it is palliative care and not looking for a cure. He said as long as she's happy, then so is he, and she is.
She had to go in for some fluids though, she's been drinking a lot, but not enough. He was going to check her with an ultrasound too, but after the poking and prodding she wasn't too keen. He said she was "Feisty" but not that she harmed anyone. Just let me know she didn't want any more poking and prodding (now why can't we do that as humans?!??!?!).
Battersea said she was "A feisty old bird" when she wouldn't accept a new cat into the house. He was half her age at the time.
She's such a sweetie and is still lively and loves her treats and being spoilt. Well she is 21 so deserves it.
Mind you, it was so funny really, but it took three of us to get her from behind the sofa and into the box. She just wouldn't come out, just that little bit too far out of reach!!! Little madam.
So after twenty five minutes I had to ring the vet and tell them we wouldn't be on time for our appointment. How embarrassing!!!! They have had it loads of time with different animals though so said don't worry about it. We made an appointment for later in the day.
That time she was in the kitchen so I just picked her up and put her in the box. Easy!
Well she only weighs 2kilos, so is not heavy and once she starts to know where she's going she's fine, if a little vocal at times. As she's now almost deaf she can't hear herself so she shouts sometimes! She's even started having a little growl if her food isn't down and ready within 2 minutes...LOL!!! Still such a sweetie though!!! She gets away with murder and loads more than Bertie ever did that's for sure!
After the cancellation, I'm now at the Lympoedema Clinic. It's run by a lovely lady called Jennie. I've seen her quite a few times now.
We chatted about some issues I've been having. She is concerned at the amount of fibrosis on the reverse of my leg (and so am I to be honest!). Whenever I lean it on something it leaves an imprint in it! Quite funny at times.
She also said that I'd need to up my Compression Stocking level to 3 which is the highest they do. She did mention some sort of wrap method too but that needs doing every day so I asked if I could try to Level 3 stockings.
It's not going to be easy as I struggle with the Level 2 ones most of the time. She said if I'm to have Dialysis that would make my legs worse and we'd need to discuss this further when I know what is happening. It's all going wrong isn't it. Still I should be used to it by now shouldn't I.....
I tried to get up the stairs tonight and and couldn't put my foot down, it hurt so much as if there was something stuck underneath. I was wondering if it was the Pomphylox thing (sorry if it's spelt wrong!) or if it's one of the CRPS lumps.
I know whichever one it is it hurts like hell. I'm back on two crutches again and feeling ill. It makes you feel so sick with the pain. My lower back aches too.
Another early start, had to get there by 8am but with the bad legs, John and his bad body and the traffic it just didn't happen. Mind you at least it was one of the lovely ladies in the Clinic who was on and she said it's not a problem.
I was sure John had to have a blood test today ready for his next infusion but he said no, it's Thursday a week before. Oh well, at least we can sort out some other things too. Makes a change not to have to visit a hospital or clinic for one or the other of us!!!
It's kind of usual, kind of worrying. My INR goes up and down a lot and since I was told about all of the things I would have problems with it's more worrying. However I don't feel able to mention it to the Clinic after the last mention when I was made to feel like a four year old being told to go to the Naughty Step!!!!
It's my life that is in danger here, I've fought too long and too hard to lose it now. Lots of things are going wrong and I'm trying my best to ensure that I'm not making things worse. More of that later......
They called and wondered why they'd had no results. John should have gone yesterday. Oops! I didnt' like to say "I told you so" although I did think it...LOL!!
I've not been sure before, but I was wondering if I'd got some blood in my urine so I've been keeping an eye on it. I asked John and Mum if they would look with me. I know it's not nice, but when you're not sure another pair of eyes can help.
So today I went for another night time wee (they stopped my tablets but it's not helped at all) and thought as I've managed to get there in a not panic mode with two crutches and a painful leg and foot, I managed to get a container to see.
It was definitely pink!!! I showed Mum and she agreed. However I couldn't ask John as he just didn't wake but just made a noise when I spoke to him. I tried a few times and gave up.
I rang the surgery and asked what I should do as I don't have a form but with my health history and being told about dialysis I was concerned. They said to get down before 11.30am and it would go off today.
After calling a taxi I managed to get there in time. It isn't easy trying to get out of a different car, with two crutches and a painful leg, foot, back etc.
Still at least it's there now and I just have to wait to see what happens next. Why can't just one thing get better or disappear.
Domi is also unwell and I've got to wait for a call from the vet. It's all waiting for things.
Again, keep everything crossed for me and I'll let you all know when I know anything.
After doing some research on the net regarding dialysis and foods etc, I've since found that some of the things I've been eating (healthy things like certain fruits etc) can hasten the failure of kidneys. This has deeply upset me as I asked for so long to see a Dietician to ensure this is what I WASN'T doing.
This is not the first time I've mentioned something and NO ONE has listened to me and it has made things worse. WHY does no one take notice? WHY does no one listen? WHY do we have to go through these things just because NO ONE LISTENS.
Sorry for shouting there, but it annoys me that in the end it's me that is suffering and if only ONE person had listened. It wouldn't be as bad as this is now. Arggggggggghhhhhhhhhhhhhh!!!!!!!!!
As I hadn't heard anything I was getting more confident that it was nothing to worry about. Phew....how wrong was I...!
When I called, they said "There is no result as they it was unclear". What was unclear? The sample? My writing on the bottle? What????
It turns out they couldnt get a result from the sample given and I would need to get another sample to them that day. Not easy when you can barely walk let along anything else and the sample was needed in a couple of hours.
More dashing around, if you can call it dashing when I can barely stand let along walk or even....dash!!! LOL!!!
Anyway we managed to get John up and ready and then went to the Surgery. We had two minutes to spare......but I got there in time and handed it in. I've now got to worry all over the weekend and wait to hear back next Tuesday or Wednesday.
You see these adverts on the TV telling you to "Be aware of cancer" and with my history who wouldn't be....and then......I get ignored.
As you can tell I'm not feeling too pleased with the way things are going at the moment. It's another one of those blips that happens to me. Of course, it's always me isn't it....!!!
We also had a phone call from Domi's vet and he said he will arrange for some antiinflammatories to be left for us to collect. He said "You know it is palliative and not curative" which we do. He is quite happy that as long as she is fine and still eating and enjoying life with us then he is happy too. He said if she gets worse or something is not right to bring her in, but at the moment she is fine, happy, eating loads and drinking loads. She is very thin, but that is the thyroid not working properly. She's such a sweetie, so spoilt too.
Since they've taken me off some of my tablets, I've been getting up six - ten times a night. A right pain when you can't walk without crutches, so everyone knows and hears me struggling and swearing!
I've had some major foot pain again lately. The return of the Pomphylox again as well. However I didn't have the white/black spots come up under my foot so it wasn't that. Was it the Complex Regional Pain Syndrome? It seemed similar. I couldn't walk at all without two crutches and a lot of pain and swearing under my breath....
Then I had a thought...I wonder if it's a DVT again? Can you get them under your feet? I don't know....I'll have to ask tomorrow....
So here we are at the DVT Clinic again. Not quite so early in the morning this time. I put on the Response Form where we can add comments that I've had bleeding gums and blood in my urine. Normally I don't get any response to comments so have given up putting them on there. However I thought I'd give it a go this time and see if anything is different.
I mentioned to the Blood Lady who is lovely and helpful about the lump under my foot and she said "With your history you should go to your GP to get it checked".
"I have to wait six weeks to get an appointment with my own GP!".
"With your history you need to go to A&E then, or if there's a long wait (we normally wait five or six hours at least!) then go to the Walk In Clinic".
So off we went to A&E to check on waiting times. Luckily there was only another two people in there so I booked in and sat myself down.
To cut a long story short, I was called to Triage, all details taken and blood sugar and blood pressure taken (extremely high for me, never seen it that high before!) I was asked if I was allowed any pain medication would I like some? YES! I'd love some I said. I wasn't sure what to take with Kidney Failure and thought it best to take nothing until I'd been checked. I then went back to sit down again, then went to the toilet, (think my name was called) but when I came back no one said anything, so I sat down again, name called and I was taken into a small room.
I was then plugged into an ECG machine, and he kept asking me if I felt OK. Did I feel sick? Did I feel dizzy? Did I feel odd? Nope, none of those! He then asked me which was my left hand and I raised it and he said "Oh, I've put some of them on the wrong side" and then changed over the wires.
I won't mention his name, but it was funny once I'd realised what was going on!!!! I said "I know it's not flatlining and I'm not dead" whichi s a good sign! LOL!!! I was then jabbed with another needle (my second of the day) and he asked where I'd had the first one and I said the DVT Clinic. He asked about my INR and raised his eyes when I said the variations I have. Then after that I had to go outside again and sit down.
The Nurse came out to give me some pain medication, at last, it was easing a bit which was great. Then I continued to sit until my name was called again.
By sending you to these different places it puts the clock back to zero so it looks as though you're not in there as long as you really are IRL. Clever thinking there!
Finally I was called to see the Doctor and he looked a bit frazzled. There weren't many on and a machine kept calling different Doctors names to go to Resus.
He went through my history and discussed different things. He examined my foot after removing my compression stocking. He pressed in different areas and nothing, although I did tell him he was getting close and then he touched it in the wrong place and I yelled!!! I did apologise and said I was so sorry but it really hurts just there!!!
He then said "I'm sure it's nothing serious" which was good news to me after the problems I've been having lately.
"What you have" he said "Is Plantar Fasciitis" (sorry not sure of spelling!). He showed me some info on the PC and he was spot on!!! No pun intended!
He said to get some really good trainers, loads of gel inserts, and wear them every day. He couldn't tell me how long it would take to go, sometimes it comes back (I've had it before on my other foot, but nowhere near as painful as this one so didn't even think of that!).
He knows a lot about this, as he's had it and still suffers with it. It took seven months for his to calm down and he still wears his trainers to work! I don't blame him with this.
So I'm now off online to find some inserts. If anyone has any recommendations just email me if you can....!
All help appreciated.
I then left A&E and hobbled back to the car. Nightmare or what. Life is at the moment, what can I say. Fingers crossed things improve soon!!!