Orthopaedic appointment, 6th September

Today, I went back to the hospital to see my orthopaedic surgeon for the first time since I saw the plastic surgeon. He said he wasn't expecting the referral to have gone through so soon but that he was glad it did, and was pleased to see me. I told him that I was unsure if I'd understood the plastic surgeon's plan correctly (I really felt like I was just nodding in the right places). Since my orthopaedic surgeon is going away on Saturday, he said that he would receive the letter from his secretary via email and send me a message to explain everything to me. I really thought that was lovely, since he's supposed to be away and enjoying work-free time but he insisted on writing to me.

We talked through various things and he definitely put me at ease about going forward with the surgery since it's the last chance I have. We're both not entirely sure what's going to happen (due to my poor explaining!) but I'll find out and be sure soon. He advised that even a 10% success rate is worthwhile, and to maybe only reconsider if the success rates go below 5%. However, he did say that it would be hard to estimate as this approach is rather new and given the state of things at the moment, nobody can give an accurate guess at the chances of success.

I am worried about going ahead, but I trust my orthopaedic surgeon more than anybody else involved in the matter. The cost will be astronomical but I can only hope that this is the last time I will have to undergo surgery. My last overnight stay cost around £2,400 and this can only be more, since it involves two separate operations and the use of new stem-cell technology. However, I am excited also - and relieved that so many people are at last on my side. I cannot explain how glad I am to have changed my main care over to my orthopaedic surgeon - I've known him for three years, and more has been sorted in the last six months with him than in the time before this.

He gave me plenty of drugs and dressings for the time that he's away and I'll be seeing him when he gets back. I just wish that he could carry out these two operations - but I guess we can't have it all!

Plastic surgeon referral

After a few days feeling all hung up about the possibility that I may never get to see this new plastic surgeon, I got a call yesterday whilst on the way to the hospital from someone mysterious. She had the same name as me and I thought she was prank calling me - because I was on the train, the signal was bad and I was pretty convinced that it was a joke. I called her back after I'd gotten off the train and turns out it was the plastic surgeon's secretary. I had an appointment arranged for today, and saw him today.

And it's good news! Well, for now at least. As pessimistic as it seems, I want to remain a realist, and as such not get excited about prospects before they prove true and viable. Now, in the equation we have a dormant vascular surgeon, my orthopaedic surgeon (whom I see every week) and the plastic surgeon I met today. He was a little persistent with going for amputation and termination but I was very adamant that I had thought about it and that I wasn't prepared to go down that road in the foreseeable future. I had explained that this was not the first time amputation was suggested to me, and that I'd considered it carefully every time someone had brought it up in the past. 

He said that performing a cross flap was not really an option since the remaining tissue is very unhealthy and it's highly unlikely anything will take on it - hence the worthlessness of grafting too, since I'll have a donor site for nothing. Instead, he decided that we would use Integra, a synthetic skin base-type produce (I think) and that he would extract abdomen fat and use those cells (he said stem cells?) to embed the Integra into my skin. So, I get a tummy tuck AND there's potential for a cure! Later on, if that works, we'll have to go in for more grafting since there will be a more viable bed for the graft to take on.

There's only one hospital in the private system that he knows of with the special stem cell machine in London so I don't have hospital choice but that's not a problem at all. Better still, he said he wanted to get this done ASAP, so he'll talk to his secretary and I can book another appointment. Then we can go ahead. Lots of steps still, but I'm making small steps in the right direction. 

Post-op week #1

Was back at the hospital to see my surgeon and my favourite nurses yesterday! It was really nice to be back with people who knew me and knew how to care for me. Trish did my dressing, and the plaster nurse, Glenn came to help with dressing choices too. We are still looking for a dressing that is very non-adherent but also has a very fine mesh so as to disallow any overgrowth of unwanted tissues. They are going to speak to tissue viability over the weekend and on Monday and I'm back there on Tuesday to see what they say and see whether they have any new ideas.

Still no news on the plastic surgeon though. I think I may have found the right person online but I obviously don't want to go and book anything because I could be as wrong as I could be right. My orthopaedic surgeon was supposed to text me last night about booking the appointment (as he'd forgotten the guy's name) but that never happened. Since he wants me to see this plastic surgeon next week, I hope he texts or calls me over the weekend so that I can book in to see the plastic surgeon and then my orthopaedic surgeon as he goes away next Saturday.

The wound has remained relatively similar but is filling up very quickly with the unwanted tissues - granulation tissue and proteins as well as fluids. I have continuously been sick since my surgery and I really have no idea why. It's proving difficult for me to keep my weight up because I've lost my appetite and am vomiting on top of that.

I have been on a huge shopping 'trip' this week, off the internet and am still waiting for my things to arrive. My parents have bought me two pairs of Ugg boots, a purse from Ted Baker and plenty of clothes and so I am super excited to get my parcels next week!

I am so desperate to see this plastic surgeon, especially with my orthopaedic surgeon going away at the end of next week. Hopefully when my orthopaedic surgeon writes the referral letter, he remembers to let me know the name of the guy so I can book my appointment. Otherwise I'll be back seeing my orthopaedic surgeon next week to demand his name! On second thoughts, I need to get a new prescription for my anaesthetics anyway...