Thursday 23 June 2016

Pain: Is it as bad as everyone says?

I read a lot (like A LOT) of blogs in the run up to having my thyroid removed and one of the things I was fearful of was feeling pain. My pain tolerance is quite high, in my opinion, but I hate feeling it and just the thought makes me shudder. Obviously everyone feels pain differently but in honour of officially being 3 weeks post-op, I decided to give my own account of the pain I felt in regards to my thyroidectomy.

I'm just going to get stuck in and say: I didn't feel a thing - it was numb from the moment I woke up. The only thing I felt was some stiffness/tightness of the skin which I would consider an uncomfortable feeling rather than pain. I was given two 500mg paracetamol tablets and one naproxen tablet regularly to help with inflammation and to stay on top of the pain for the two days in hospital but I didn't think I needed it. They issued me these tablets on my discharge but I hardly used them - only when the uncomfortable feeling was getting on my nerves.

For those that don't know, I did have a small plastic tube in my neck to drain any excess fluid from the wound. I knew there was a possibility I would get a drain tube and read a couple blogs with people's accounts of having one. In one particular blog, however, the writer described it in such a way that made me soooooo scared that I would get one too, and I was praying I wouldn't need it. In her blog post, she recalls that she cried when it was being removed so it's safe to say I was p*ssing myself. Honestly though, I didn't feel ANYTHING - and I'm not just saying that. As I said I was taking paracetamol regularly during my stay but to me, I didn't need it. The only thing was that I did roll on it a couple times during my second night but that also wasn't painful; instead it felt more like a tugging sensation rather than pain. Once I fixed it I was fine and went back to sleep again. If anything, the drain was simply annoying rather than painful, because it had to come everywhere with me and I felt kind of bad for the other patients having to see me walking around with drainage fluid in a container every time I had to use the toilet.

The only time I did feel pain was when they removed the tube but it wasn't that bad (maybe 5 or 6/10) and it didn't last - the tube was stitched into my skin so cutting the stitches was painful. The actual process of pulling out the tube wasn't painful but quite uncomfortable because I could feel the end moving inside my neck which wasn't a pleasant feeling. The worst part wasn't the pain but was that, because UCLH is a teaching hospital, I had to hear the nurse explain to a trainee what it was that she was doing at any given moment. That made me anticipate it and I really didn't like that.

All in all, I would honestly rate my pain at 0/10 as to me it didn't hurt, there was only an uncomfortableness when trying to move my head and neck.

I hope you found this helpful and, of course, leave me a comment if you have any questions or if you want, Tweet me @StaciahGreer

Take care! x

Sunday 19 June 2016

My post-op appointment

So, yesterday I had my post-op appointment with my surgeon, Mr Tariq (I finally found out his name! ). He wasn't very concerned except where my parathyroid glands were concerned; they still aren't maintaining a good calcium level. I had stopped getting tingly hands and feet so thought I didn't need to take my Sandoocal effervescent calcium tablets anymore. However, I kept getting muscle cramps and a weird sensation in my hand (kind of like it was seizing up), which I thought were also cramps at the time. When I saw my doctor yesterday, he told me I must be getting these symptoms without me uttering a word. He knew this because of how low my calcium levels were. As a result, he upped my Vitamin D dose to two tablets a day, and I also need to take my Sandocal twice a day as well. According to him, my Grave's disease meant that my bones are lacking calcium so when I consume any now, it goes straight into my bones and doesn't stay in my blood. Hopefully I can get this under control soon.

Another thing he mentioned was the amount of glue still on the skin around my incision. I'm really squeamish so I haven't been much inclined to clean it - even removing the tape was a challenge. I've also been avoiding getting it wet when I shower as well which probably is the reason behind there being still so much glue on the skin. I've been wiping it with damp cotton pads and bit by bit the glue is coming off. The wound itself isn't sore but I've never been one to have people touch my neck so the sensation of touching it to get the glue off is weird and I can't do it for too long.

I did forget to ask him if I can start rubbing oil or cream on it, I think I can from the information in the booklet I got before surgery but I still want to be sure. Also, I want to know if I can use coconut oil which they didn't list in the booklet but I think it will work just as well and help to get the glue off my skin. I will call the office on Monday and ask a member of staff about it.

He didn't mention my TSH or T4 levels so I'm going to assume that they were okay. As usual, I will update my blog with any new information.

Staciah x

Friday 17 June 2016

Two weeks post-op update

This past week has been much better than the first and it's about time; I'm happy to report that I'm pretty much back to normal.

The wound itself has a large scab over the top and has been like that since I took the tape off of it. The soreness disappeared quite quickly after my operation but on Sunday my cousin came over and I laughed so hard that under the skin in my neck around the incision became sore to the touch. That soreness went away after a couple of days and the only thing I feel is a bit of stiffness when I swallow but that isn't as bad as it used to be either. Also, the skin just above the incision is numb but that too has lessened over the course of the week. On the plus side, I've got most of the movement back in my neck and can look in all directions and over my shoulder without any discomfort.

I've been taking my Levothyroxine tablets (I'm on 100mg daily) and I've been feeling quite well. From reading blogs prior to going into hospital, I convinced myself that I would feel crappy but I've been feeling like my old self. I had a lot of fatigue last week but that has gone now; I'm still not sure why I was feeling like that but I'm happy it's over. I'm not sure if my doctor will change the dosage but so far I feel really good so we'll see.

I was also worried about gaining weight as I've been thin my whole life and from reading blogs, I found that a lot of people who had a total thyroidectomy reported weight gain in the months following. I did gain about 5lbs right after surgery but about 4 days after, I went back to my starting weight, 136lbs. I'll continue to monitor it, but it's been two weeks and I've not seen any change in my weight so fingers crossed it stays that way.

Other than that, there's really not much to report as I'm feeling quite normal. My post-op appointment is tomorrow, Saturday 18th, so we'll see how that goes. I haven't been rubbing anything on my wound at all so once I get the all clear I'll ask my surgeon what I can use to moisturise it. The area around it can be a bit sensitive occasionally though so I'm not sure how that will go but I'll update my blog on that too in the coming weeks.

Also, I know I haven't posted any photos yet but hopefully soon I'll get a progress post up. Possibly for my one month update.

Thanks for reading!

Stace x

Wednesday 15 June 2016

NHS health care experience

This post is going to be dedicated to the care I received from the NHS after being diagnosed with an overactive thyroid in 2013. I know in recent years that the NHS has come under scrutiny and many people have worries about receiving heath care from it - I know I did. So let's get into my experience of receiving care on the NHS.

When I was diagnosed, I was lucky in that my GP got every test done quickly and I had a diagnosis only two days after seeing her. At the time, my local hospital, Whittington, had a very long waiting list to be referred to the endocrinology department but UCLH had a much shorter waiting time, which is why I went there. On a whole, the care I received there, in my opinion, wasn't good. After a couple of months, I was no longer being seen by my consultant but by more junior doctors who did not accurately record our meetings so I was being told different things every appointment and I honestly felt that my best interests weren't being looked after. Even when I stated to these doctors that someone else had told me something different to them and I was worried about certain issues, I felt dismissed and that they just called me in to change my dosage and get me out the door.

I told the last doctor that I saw that my eyes were getting worse (I suffer from thyroid eye disease) and he responded with "they look fine to me", which I thought was disrespectful as the whole appointment was him refusing to listen to my concerns. I had seen my face change slowly for the worst for about two years at that point, longer than the consultant had told me I would have to struggle with my thyroid in the first place. I told this doctor this and he said "well, I could refer you to an ophthalmologist". He said it like I was asking for too much but according to NHS direct, anyone diagnosed with thyroid eye disease (which I had been) MUST be referred to an ophthalmologist asap! This was not the case with me, I had to beg for it and he didn't even fulfil his promise. After calling the hospital and going in to see them, I was met with the same rudeness and total disregard for my wellbeing from the receptionist.

At this point I was very discouraged but my GP reassured me that she was looking out for me and referred me to Moorfields Eye Hospital herself. She also raised a complaint with the hospital but the result of this has been made unknown to me. However, the care I received from Moorfields has been good in my opinion; the doctors have given me more than enough information on my care and even alternative options to control the symptoms of my eye disease. I am still a patient there and will be seen in August to discuss the next steps to overcome this but from what I am aware of, my eye symptoms were made worse by the fluctuations of my thyroxine levels as a result of my endocrine team not being able to stabilise my thyroid.

In regards to my thyroidectomy at ULCH, after having my surgery scheduled, I was pretty much left to my own devices. It was only after having an accidental appointment booked by the hospital to see the surgeon that he noticed no one had checked my thyroxine levels since two months prior. It was a blessing in disguise as I wouldn't have been able to have my surgery done with an unchecked thyroid. In addition, there were problems I received on the day of my surgery which I spoke about in my surgery story, but my overall care from the nurses during my stay was top notch. They checked on me often and made sure I was comfortable. If I had any questions, they answered it to the best of their abilities and made the effort to reassure me that I would be okay. I even started crying on the last day (I was very emotional) and my nurse made sure to calm me down and try and reassure me that my symptoms were normal and treatable. An issue I had was my discharge process as my surgeon told me I could go home but the nurse seemed to have other information and told me another doctor, who was not in charge of my care, had to come and talk to me before letting me go. Again, I talk about this in my surgery story so I won't go into it in too much detail, but I was sitting around for hours. Also, I was not given much information on how I should care for myself at home and, having waiting around for hours, I forgot to ask many questions to my nurses.

I've suffered a lot with UCLH over the period of 3 years and I'm not happy with the overall care I received from the hospital. However, the NHS on a whole I think took care of me well as my GP and the doctors at Moorfields all explained things very well to me.

Friday 10 June 2016

One week post-op update

This past week has been a struggle, I'm going to be 100% honest with you. But I'm going to break it down into a summary to help anyone about to go through the same experience:

Day 1:
The night after my surgery was tough as I threw up three times so I was attached to a drip the entire night and I had oxygen in my nose. But when I woke up, I was surprisingly okay. Besides having no voice at all, I felt okay and there was no pain except for a cannula they had put in the side of my left wrist while I was asleep that KILLED. I asked my nurse to take it out for me because it was really painful and it wasn't even being used. I ate only a bit of my porridge in the morning but with every meal I ate a little bit more until I practically finished my dinner.

Also, although the drain in my neck didn't hurt, it was leaking throughout the day so my nurse stuck some extra gauze next to it so that there was at least something to absorb the liquid. That night though I got no sleep from sleeping in an uncomfortable position and rolled on my drain a couple times which surprisingly still wasn't painful.

Day 2:
Despite feeling nauseous and being unable to eat from the painkiller they gave me, I was fine. The pain was almost non-existent and my voice was coming back slowly, which allowed me to actually speak to my surgeon instead of whisper. My drain was removed and so was another cannula and I was discharged but that night, I woke up with a bit of pins and needles in my hand so I drank a glass of milk and went back to sleep.

Day 3:
This day was quite uneventful. I had some mild pins and needles but I would drink a glass of milk or my Sandocal calcium tablets and be done with it. There was no pain, my voice was coming back more and was starting to sound less raspy and more like my own.

Day 4:
For some reason the pins and needles got worse and I ended up calling my hospital at about midday as I was getting worried. The lady at the desk told me that the calcium symptoms would get better during the course of a few days (something I wish my nurse would have told me). Also, as the nurse on the day of my discharge instructed me to do, I drank milk whenever I got a tingly sensation. THIS WAS THE WORST THING TO DO! You CAN consume too much calcium and that's what happened to me. My tummy was in knots and I was pretty much sick the whole day. I was drinking milk, plus my Sandocal, plus eating yoghurt and other calcium rich foods which threw my body out of sync.

Additionally, I started feeling increasingly weak during this day and got up to use the toilet and one point and almost fell as my legs pretty much gave way.

Days 5 & 6:
I've grouped these two days because they were pretty much the same. The fatigue I felt on these days were immense. It seemed that when I sat down, my legs forgot how to work by the time I went to stand back up and I would have to slowly stand up. To be completely honest, my whole body was exhausted and I had no energy to do anything. On Day 6 I even had to take a shower whilst sitting down because it was just that bad. I'm not sure why this was happening; my mum spoke to my great aunt (a veteran nurse of about 30 years) who said that it's not uncommon for your body to be tired after a surgery and so not to worry too much, but I never experienced tiredness like it and I hope I never have to.

On Day 5 I removed the majority of the tape covering my incision but one end was stuck so my great aunt suggested saline solution which my mum got on Day 6 and the last part came right off. It was painless. I got pretty much all of the movement back in my neck, but I still couldn't look over my shoulder.

I did actually get some swelling on Day 6 - probably from laying down 24/7 and not keeping my head elevated. It wasn't too painful, just really uncomfortable.

Day 7:
I woke up in the morning with more energy than I had done in previous days but that diminished throughout the day. However, that was basically the only issue as the pain was almost undetectable and I didn't suffer from any pins and needles. Around the wound did get slightly more swollen in the evening for a while.

Sunday 5 June 2016

The day of surgery

It's been 3 days since I had my total thyroidectomy. I'm doing well today so it's about time I update my blog on the process. It's going to be a long one so get yourself a cup of tea.

So, my mum and I arrived at University College London Hospital at 7:00am and checked in. I was surprised that we were told to wait in a TV room instead of being taken to a bed, which is what I know my mum went through with previous surgeries she had at the same hospital. There were quite a few people in there all waiting for surgery too. First, I was called in to meet my anaesthetist, Pam. She was really sweet and told me she would give me numbing cream to put on the back of my had so I wouldn't feel the IV (not that it helped but I'll get onto that later). I then went back into the waiting room and was called in by a doctor. I didn't like this method because there was a lot of waiting around.

I hadn't eaten anything since about 10:45pm of the night before but, even though I told the nurse at my pre-assessment appointment that I get migraines when I don't eat, the doctor told me I was last on the list and that I would go into surgery between 4 and 5:00pm. I was MAD because I had made sure to tell them prior to going in for my surgery - and for good reason too. By 10am I had already developed a migraine so they offered me an examination room to sleep it off. That didn't really work since nurses were in and out so regularly. But at about 12:45 two doctors came in and told me that they were moving my surgery up to 2:30pm since I wasn't doing too well. Thank God! So I got dressed in my gown, walked up to the 3rd floor to the entrance to theatre, and said goodbye to my mum. At first, I sat in a waiting room with another woman who I had seen waiting to go into surgery. It was quite relaxing; there was a very wide selection of magazines, a large TV, and comfy chairs. There, a medical student talked to me about how to pronounce my name and other random stuff. She was trying to calm my nerves. Then another anaesthetist came in and got me to walk to the anaesthetic room and got me to lay down on a bed.

It wasn't exactly a scary room but the bed was in the middle and at the end of it were two large double doors with green frosted glass and a red light that said "theatre in progress". My anaesthetists, Fatima and Pam, were really sweet and chatting with me and it worked to get my mind off what was happening for a while but just above the coloured glass was a strip of regular glass, and every so often I'd see a set of eyes peering through. LOL it sounds so freaky right? Anyway, they couldn't find a good vein to get the IV into and even though I had the numbing cream applied to both hands, I could pretty much feel all of their attempts. I was also attached to an ECG machine and had one of those finger pulse counter things on. The surgeon, whose name I still don't know, came in and spoke to me for a bit before Pam told me she was putting something to calm me down in my cannula. It made me a little woozy but I was still conscious and able to respond to them. Then she said she was putting something else in and it was lights out for me.

I don't remember falling asleep but the next thing I remember was a nurse calling my name and telling me I was in recovery. I basically woke up fighting because they had an oxygen mask on me but I felt like it was suffocating me and I just wanted it off. Then I tried to roll on my side (not sure why, I was out of it) and I remember hearing them shout "No, Staciah! Don't do that! You've got a tube in your neck and you're pulling it out!". Someone took off my oxygen mask and put the oxygen tube thing in my nose and I remember giving them a thumbs up. My nurse told me the time, it was about 8pm, and she says "You had a lot of anaesthetic darling. It took you a while to wake up". At that point I was worried that something had gone wrong and about my poor mum who had been waiting for me. Also, I should probably state that I woke up with no voice, so I was scared for that too. When my surgeon came in he reassured me that everything went well and that my vocal chords were simply swollen.

It wasn't long before I was taken up to the ward and I remember seeing the blur of my mum's red coat and reaching out for her. She stayed with me a while but that night was tough. I had a bedpan on my chest from recovery as I felt nauseous as soon as I had regained consciousness, so when I randomly threw up while on the ward I was prepared. The second time, I got up to use the toilet and on my way out the door back to my bed, I threw up again. Then, the final time, I ate two yoghurt pots given to me by my nurse and shortly after that, it all came up. As a result, I was hooked up to a fluid bag all night but luckily the following day was much better. I woke up with not much of an appetite but I was able to eat the majority of my food by dinner time. My drain leaked a bit during the first day so my nurse supported it with more gauze and it was fine for the rest of my stay.

I stayed for two nights and on the day of my discharge a doctor came around and told me that I should be okay to leave that evening and I would just need one final blood test before I went home. I felt quite sick that day and hardly ate a thing until my nurse told me that it was a side effect of dihydrocodine (for pain) so I stopped taking it. My drain was also removed on the final day; it didn't hurt but it did feel really weird. I was happy to get it out as I rolled on it a couple times the second night of my stay. But since I was discharged on a Saturday it took hours to get everything in order. I was actually waiting to see the doctor on call but my surgeon came around to see another patient, saw me sitting on my bed and let me go home.

I'm doing well. My calcium was a bit low but I've been prescribed vitamin D and some dissolvable calcium tablets for if I feel any tingling limbs (which I've gotten mild cases of a few times today) and I've been told to drink plenty of milk. I've also started on 100 micrograms of Levothyroxine and a couple pain killers but I don't really need them. I can swallow and cough without any issues for the most part but I have taken a couple paracetamol and naproxen today when the incision has felt uncomfortably tight. However, my nurse had told me to continue to eat and drink as the continuous swallowing would help alleviate the pain and I think it has. The first day my throat was sore mostly from the breathing tube but it went away by the second day. Also, my voice is 85% back to normal now. It's a bit raspy still but it's stronger than I thought it would be given I could only whisper in the beginning.

I created this blog to give extra information to people about to face what I faced so if you have any questions or if I've left anything out, feel free to comment!

Take care,
Staciah x