Day 1 of 2nd trip to Leeds

I’m writing this from my ‘hotel room’ in the hospital. I came back up to Leeds yesterday afternoon. Missing most of the hot sun sat on the train. Typical. Luckily the sun was up here too and has been really nice all day today.

This is my second trip to Leeds and the plan was to meet with the Psychiatrist, Dr Hosker, today and then have CT and MRI scan tomorrow. And work from my hotel room in between. The hotel is provided for patients free of charge and a small fee of £35 per night for those visiting patients. To be honest when you are staying in the hospital and not paying stupid prices for hotel this £35 seems really reasonable. The rooms are spacious and comfortable. If the surgery does go ahead then they have said since I live a fair bit away from Leeds, once I have been discharged they will put me up in the hotel for a few days before I go back home. Just in case anything happens I am nearby. Not all hospitals are equipped to deal with living donor complications.

So. My appointment with Dr Hosker was at 9.30 this morning so I met with Katie (on of the coordinators) at 9am to catch up and go through some bits before hand. We went through what would probably come up in the meeting with Dr Hosker and also through the list of potential risks that come with the operation and after. I don’t know if I mention these stats before but they are two they mention a bit, I’ve noticed. Fatality is 1 in 200. Touch wood, no deaths recorded in the UK. About 1 in 5 have minor complications after surgery such as a chest infection or wound infection. Now this next stat I’m not sure if I’m remembering correctly but hopefully I am and not mixing it up with another. After the op i will have a number of tubes coming out of me for the first couple of days including one that will go in my upper body which they (if i remember correctly!) say there is about 15% chance of this nipping the lung and causing it to collapse. Good news is they know how to rectify it if this happens. Katie also told me about injections that they would give me the night before and for about 6 weeks after to prevent blood clots.

Next up was my meeting with Dr Hosker. He was really nice. His mission is to find out if potential donor’s are stable enough to make an informed decision. You go through your back ground, which for me includes depression. How you came to make the decision to come forward. The possibilities of post op pain and recovery triggering depression. They say there is a link between the post op and depression but this can be for a number of reasons including when the transplant doesn’t work out for the recipient. This isn’t relevant to me since I am altruistic and I don’t hear the outcome, but if you are donating to a family or friend it could be hard to deal with a negative outcome for them. Another thing that seemed really key throughout his questioning was my ‘support’ network. I never really though about as a donor needing a supportive network around me. But I have great friends who I know be helpful! If they aren’t I will blog about them :). back to the post op state of mind we decided it was best that i continue my medication throughout the surgery rather than stopping to avoid any relapses.

After I’d finished with Dr Hosker, I went back to meet with Katie who needed to retake my blood as they weren’t able to process my blood group from the last lot. I’ve never been squeamish to the point I could be sick. Until today. My vein decided it didn’t want to play nice and we had to wiggle the needle around quite a bit to get the flow going. For some reason I decided to watch and then continue to watched as the blood flowed. Never again. By the end I was flushed, my forehead was sweating and I was about to vom. It probably didn’t help that i’d not had breakfast. After I went to eat a fry up. Because what else do you eat when a fry up is on offer!?

Later in the morning Katie called to let me know Dr Hosker had given the ok. (I’m taking this as I’m certified not psycho!) Which meant tomorrow’s scans would still go ahead.

Then around lunchtime Katie called again to tell me they had my blood group back. A negative. Apparently there is only 6% of us A negs in the UK.She also decided to add some more tests for today and tomorrow. Chest x-ray this afternoon. Then in the morning, an ECG to check my heart and Spirometry test to check my lungs. This test looks to see if their are any current problems or the possibility of a problem happening in the future.

Whilst the hotel part of the hotel is nice. Not like your normal hotel. Just being here 24 hours feels like longer. You see some of the same staff, patients and visitors over and over again and it’s weird to think I am in here 24/7 for a couple of days and I’m not poorly. It can also be quite a boring and lonely place. So couple that with being unwell must be quite exhausting for the patients. I wish everyone I saw today a speedy recovery.

p.s Congratulations to my friend Natalie for running the London marathon the other week. Absolutely amazing. She looked knackered at mile 19 (sorry Nat!) but when we saw her again at mile 25 she looked great. Then in the pub she looked as if she hadn’t even run! If you fancy donating to PSC Support through Nat’s page please visit here

Post Marathon in the pub

And here she is crossing the finishing line

First Trip To Leeds

My 6 month (post tattoo) wait is up and on the 8th April Julie from St James’ was in touch to confirm they still wanted to see me. So my appointment was booked for Friday 15th April and I’m currently awaiting results from my bloods to determine if we go to the next stage.

So on Friday I got the train from home into London and back out up to Leeds. I’ve never been to Leeds before and to be honest I only saw the station, the outside of the shopping center, some main roads and then the hospital. And then the same in reverse order.

My appointment was at 2pm at Bexley Wing but I arrived at 1.45 where Julie was already waiting at the reception of Surgical Outpatients. The name is a little daunting, but Julie was really welcoming and first up I had to pee in a jug. Yep, a 500ml jug. Not the standard little pot you get at the doctors. Luckily you don’t have to fill it

The Julie introduced me to Professor Peter Lodge (an Eminent Liver Surgeon). I should probably mention Julie is a Transplant Coordinator on the Live Donor Liver Transplant Programme at St James’. All three of us chatted through my initial questionnaire answers. The reason I came forward as a potential donor. The Risks. Next steps etc.

Risks are something I have done my research on but it can be a little daunting when you are sat there with a surgeon and the words are spoken out loud. As with all surgery there are risks. DVT, blood clots, death. Unfortunately the fatality rate is 1:200. **Touch Wood** there have been no fatalities at Leeds Hospital or in the UK. So this is a positive and Leeds have a strong track record. There is also on the flip side something calming about speaking to a surgeon. After all they are the ones who perform the operations.

We went on to discuss how everything would work. The operation is around 4 hours long and I would be in hospital for 5-7 days after. Because I live a fair distance from Leeds they have said they will also put me up in the hospital hotel for a few nights once I’m discharged just in case and that someone could come stay with me. The care of the donor is as much a priority as the care of the recipient.

There would then be follow ups post op too.

I feel like I’m jinxing the whole process by talking as if this is definitely going to happen. In the meeting we also discussed that only half of people who test to donate actually go on to donate. There are tests and hoops you have to get through to decide whether you are in fact able to donate.

During the consultation the Prof Peter Lodge also did a physical examination of my abdomen and listened to my lungs and heart through a stethoscope. I’m using a vape now as I can’t go cold turkey but had had a couple of cigs that week. We spoke about how on the ecigs you can go down in nicotine strengths which I am doing to eventually come off the vape completely. Smoking can cause a few issues during surgery as if can affect your breathing, and cause infections.

After the consultation I went down to have 9 tubes of blood taken. The tests included looking for viruses (including HIV) and DNA make up. I thought was quite cool to think they are looking at my DNA. I don’t know much about blood work ups so this could be a common test. I’ve had bloods taken a lot but don’t tend to question what they are. The guy who took my blood was really friendly and we spoke about his work. The most tubes for one patient he’d ever done in one go was 23. One of the girls also joined in and said the most she’d heard of was 30! We also got onto the topic of costs. There was one tube among mine which she had read costs £125! Make’s you realise the importance of the NHS. When people are poorly and need these tests the last thing you want to do is be paying all that to find out what is wrong.

Next steps, with my bloods coming back ok is to book in with the psychiatrist and have some scans done; MRI, CT, chest xray. These scans will allow them to see the condition of my liver and if I am able to donate. Something like my vessels going in the wrong direction could stop me. This morning Julie emailed to say they had had some of my bloods back and so far all good. So in the meantime they are going to start booking me in for the scans and to see the psychiatrist.

Because I am far away they are being really helpful and trying to arrange for them to happen on the same day to limit the number of trips up and down to Leeds I have to do. Another handy thing is that they run a reimbursement scheme for travel expenses. For my day return trip it cost me £78 and I’m not the richest of people to it’s great to know they have the scheme available to help me cover costs. There is also a hotel at the hospital which I will likely stay in when I’m next up since it will be a full day of tests.

It’s also important to note that at any time, a donor can change their mind and pull out. Just because you start going through the process and ticking all the right boxes, you are in no way obliged to continue. If at any point you decide you no longer want to go ahead they are understanding. It isn’t an easy decision to make. I thought about it for a year before contacting the hospital. And there are potential risks involved. From experience so far the staff are there to support and answer any questions on the way.

I’d also like to take the time to plug my friends donation page. Nat is running this sunday at the London Marathon and any donation you can make will be greatly appreciated. She’s worked so hard training and we are already so proud of her before she’s even run. She is running for PSC Support – a great charity who don’t get enough attention so please also take the time to read up here

Nat’s Virgin Money sponsorship page here

Thanks for reading!

GOOD LUCK NUTBUNS xxxxxxxxxxxxx

 

 

 

 

Update from me

So I haven’t posted for a little while. For those who haven’t seen or heard, I’ve been off travelling around Australia for a month.

Whilst I had every intention to go cold turkey quitting smoking and alcohol intake, I have failed miserably. The smoking more so. But now I’m back I’m more determined having failed.

My alcohol intake has reduced a lot so hopefully in a week or so I’ll be gong cold turkey properly on the smoking front.

I just wanted to write a quick post, firstly to be honest about the above – it could delay my process unfortunately. But secondly to say that whilst I was away it reconfirmed exactly why I have decided to try and become a living liver donor.

Everyday of my trip I experienced or witnessed something new. Something I never thought I would have the chance to. My experiences were held back by fear, money, time etc but it made me realise just how important being a donor of any kind is. Some people don’t have the chance due to illness, but donation will (hopefully) eventually give them the chance to take similar experiences (and completely different ones!) to those I had in Australia.

I’ve seen just how much it can transform someone’s life, in my friend Maxine. Enabling her to go out and live her life now.

A new post on Blood donation will be coming soon – with some guests on there.

But in the meantime, if you don’t have anyone to sponsor for the London Marathon this year, or have some spare money to sponsor someone else…. Please sponsor my friend Natalie who is running the London Marathon for PSC Support .

Click here for her VirginMoneyGiving page.

Here she is after a training session! GO NUTBUNS!!! xxxx

 

 

Why Me? 

It’s a question the majority of us ask ourselves frequently. Whether it’s your parents asking you over your brother to wash plates after dinner, getting a flat tyre on the way to an important meeting or being squished on the tube. The latter I’ve decided to no longer question and unless I start wearing heels, I will forever be as malleable as a cat when it comes to being in rush hour on the tube.

From posts and articles I’ve read numerous ask ‘why me?’ When they are dealt negative news about their health, or ‘why Tom?’. I definitely thought ‘why Maxine?’ especially when her clock started ticking a lot quicker and the need for a liver donor got closer and with her health deteriorating pretty badly. Maxine (that’s Maxine in the pic… not me!) doesn’t smoke, has lead a pretty healthy lifestyle, keeping fit and active dancing, she stopped drinking when diagnosed with Primary Sclerosing Cholangitis (PSC).

More often than not, I think most people believe liver diseases are caused by heavy drink and/or drug use and unless you are an alcoholic, then you are pretty safe. My views until i met Maxine were pretty much the same. There are 101 and more reasons to better our knowledge about donation and becoming a donor, why people need transplants and blood transfusions, the causes that lead to these and the support systems in place.

I’d like to point out here that all posts written by myself are in fact just that, written by me. I am no expert in all this (including writing a blog!) and am still learning myself. I hope even if only a handful of people read this blog it helps to make a difference in one way or another (and hopefully drive a few more donor registrations in the process!).

So back to Maxine. That’s where i guess my journey really began. PSC had really taken its toll on Maxine and she got very ill and had been placed on the transplant list. There is no fast track on the donor list. You could be at the top but without a match, and the world definitely doesn’t stop and wait for your match to come along. It’s a waiting game and one that makes having a strong support network so important. Family, friends, transplant co coordinator, other people waiting for their gift to come along, freddy the cat or even the smiley man behind the counter in the corner shop. Then there are special support groups, complete strangers, who, from speaking to Maxine and seeing her online social interactions with these people become very close friends. Even those you never get to meet. In a separate post I will talk more on support networks etc.

So back to where it started… Maxine is waiting for a transplant, it comes to my attention that you can donate part of your liver whilst you are alive… Wait, what?! Maybe I didn’t listen enough in biology or maybe it’s not common knowledge but healthy living people can donate up to 60% of their liver (yep, whilst they are still alive!) to someone in need. For obvious reasons you can’t just stick anyone’s liver into another person. Several factors play a role to be a ‘match’.

Are you thinking about your liver being cut by 60% and a gaping whole of air in your body? Don’t worry your (healthy) liver will regenerate! Pretty cool. Definitely should of paid more attention in biology.

Long story short (I realise I’m babbling away) I messaged Maxine one day I am up for being tested. She was, and still very much is, crazy but she’s my friend and the possibility of her not being around wasn’t going to happen if there was a way i could help. Unfortunately this never happened, but Maxine received her transplant in October 2014 and we are all forever grateful to her donor. Who by the way is a man. Crazy to think Maxine is part man, but also amazing to know she has part of someone else inside of her. Unfortunately her donor wasn’t a living donor.

So the whole line of events played on my mind a lot throughout 2015. Our lives change so much year by year and we all come against mental and physical hurdles and the more I thought about it the more I questioned ‘why not me?’.

I started digging around on the internet and quickly stumbled across a list of contact details for living donation. And that is pretty much why I’m sat here writing a blog, waiting to donate.

Unfortunately I applied to donate just after I had a tattoo done so whilst I’m already through the first stage of the process I have to wait until April to continue.

 

NHS Donation Information and contact details: http://www.organdonation.nhs.uk/faq/organ-donation-and-transplantation/

Information on PSC can be found at http://www.pscsupport.org.uk

Maxine’s Blog to read more about her story: http://www.maxinimax.wordpress.com

blog 12

 

The Start of my journey

I’ve decided to write a blog to document (hopefully) becoming an altruistic donor or in simpler terms a living liver donor to a complete stranger. Obviously this wasn’t just a spur of the moment decision and I’ll go back to where this all began in my next post.

This post will discuss the beginning of the process.

Disclaimer – i am not the best writer so if you happen to be reading this. Bare with me please!

On the 3rd of November i sent off a couple of emails and made a couple of calls. Unfortunately my calls rang through or went to voicemail. Fortunately my emails were responded to over the coming days. I spoke to a lady called Julie at Leeds Teaching Hospital over email and over the phone. She gave me more detail on what it meant to be an altruistic donor and sent me more details for me to read through to make sure this was something I wanted to do. I already knew I wanted to but I also knew I should familiarise with facts i perhaps didn’t know. I will post links at the end of this blog.

Once I confirmed to myself again that this is something I wanted to do i printed off the Live Donor Health History form. I find forms really tedious, especially long ones and normally want to finish just to get them out the way. This time I was keen to complete it quickly as the sooner I did, the sooner I could send it back to Julie.

The form asks a lot of questions – 9 pages worth! It covers things like family history or different illnesses and conditions, why I wanted to be a living donor, medication, past health and drinking and smoking habits. My job is a social one, where we have a lot of social drinks with colleagues and also with clients. It would be weird if a week went by without some sort of event where alcohol is involved. I also smoke. I was worried both of these were going to get me a big fat cross straight away. Especially when they ask for units per week etc. But I was honest and crossed my fingers. Be conservative could waste everyone’s time. With the form complete I signed and sent back, with a response from Julie that it would be discussed at their next meeting (12th) and she will let me know the outcome by Friday 13th. This date scared me a little for the feedback.

I was on my way back from a client meeting on the 12th when my phone rang on private number. It was Julie. I looked good on paper, except for one thing. I’d had a tattoo a couple of weeks before and they need people to be 6 months post tattoos. Annoying but understandable that these are the rules.

Julie asked me to wait until the 6 months was up and get in touch again if I still wanted to be a living donor. We discussed this would be April/May time. She also asked that I try stop smoking and drinking  between 6-8 weeks before for a smoother process.

So not the answer I wanted on the 12th but not the answer I dreaded; Being told i couldn’t at the first hurdle.

Some helpful documents to read if you want to know more about Living Donation. These are all documents i received from the NHS when inquiring.

Live Liver Donation Education Booklet LRD

I’ve misplaced the Health Form but will try and find it and post it when i do.

More commonly people are aware of donating a kidney whilst alive. Here is inforamtio Altruistic Kidney Donation

Altruistic Kidney Donation-how do I go about it 07-2015

Final NLDKSS donor-recipient info 10-2011

Could I be a living donor- FAQs