Two weeks to go until Surgery....

I can't believe how time has flown since I visited New Cross Hospital in Wolverhampton back on 10th July. I am now being admitted for remaining pre-operative assessment checks, to go through all my medications, to discuss with my anaesthetist my post-operative pain plan and anything else that has not yet been covered. I will then be admitted to a ward for overnight. Whether I then return to that ward post-operative will depend upon whether I need an interim admission to High Dependency or ITU, post-operative.

I am now starting to prepare for hospital. Making sure my freezer is stocked with the right foods for when I return. Whilst I am away there is some internal building works need to be done in my hall and bathroom, and they also need to get scaffolding through my house to do some work further up the outside of the house - all because of subsidence. The work is expected to be completed before I return, and the company doing the work are going to pay for my cleaner to do a deep clean for before I return home. I absolutely hope that this all works out and that the work will be complete so that I can come back home to a restful and quiet [and clean] environment.

In addition to food stocks, I am making sure I have got all the right medications that I need for hospital, and for here, and things like books, magazines. I have also treated myself to some new tracksuit tops and bottoms and a new 'V' pillow which everyone says is really helpful for post-operative recovery. I am also trying to organise for my carer to come in daily, possibly for up to two weeks, to ensure that I can properly manage once home.

In terms of how I am feeling about the surgery itself, I am starting to feel a little nervous, but that is totally understandable. It is a major surgery, and I have never had one like this.

I have already now met my new physio, and he is absolutely lovely. He actually thinks that I should respond really well to the surgery, and is very pleased that Mr Garnham is going to add botox to my pec minor muscle, rather than simply remove it. This should also relieve my pain. We will be working very closely together once I get back home.

It is a big deal for me going to a hospital I don't know, that is two hours away by train, with no hope of visitors, and to manage to the journey by train back home in a lot of pain, so I am quite trepidous, but also hopeful that things might eventully improve after the surgery. Then I have to go through it all again on the right side.

In terms of the D-Dimer, another surgeon reviewed my levels and said becasue I am a neurological TOS patient, it was OK that they are a bit high - but I never got that confirmed directly from my own surgeon, although he was made fully aware. The very worst thing that could happen now is that my surgery would be deferred or changed, but I hope that they will prioritise me as I have had to wait a few extra weeks because of the summer holidays. I will do some video postings when I am in hospital.

Problems with blood clotting 'D-Dimer' Levels

One evening in mid-July 2019 I had chest pain. It really felt quite scary and as if I had been kicked in the chest. Since I had both PoTS and a condition called Thoracic Outlet Syndrome [TOS] I wondered if it could be related to either of those, and then I had another wave of severe pain and felt that it would need to be a 999 call. The operator said that there might be a long wait, but an ambulance turned up in 5 minutes. Although I apparently looked pale and clammy my observations and ECG were both normal. However as I begun to tell the story of my medical history the ambulance crew felt that I definitely needed a trip to A&E.

Whilst at A&E I had repeat Obs and ECG which continued to be normal. It took three people to get any blood samples from me, and this significantly delayed things. Fortunately my bloods were normal and especially the cardiac ones, but there was a blood clotting factor called 'D-Dimer' which was abnormally high in me and so they had to do a CT scan to rule out the chance of a blood clot in my lung. They never considered that my subclavian artery is occluding both sides, as per my TOS, so they might have not got an entirely accurate picture. Anyway, the CT scan was normal, and I was sent home. It was thought important to tell my TOS consultant about the D-Dimer as a normal result is below 250 and mine was 470. I was asked to do a repeat test which had to be done in ambulatory care - an area where you go if you are able to walk and have problems that can be dealt with in an outpatient situation or setting. Unfortunately the next test showed that my D-Dimer had increased to 650, so I was sent back to A&E and made contact with my surgeon's colleagues as he was away, and in the end the outcome was that I wouldn't need blood thinners [as I had thought], as the CT scan was negative and because my problem was neurological.  Nevertheless it was worrying because there was no other proof that I didn't have or not have a blood clot elsewhere. A D-Dimer can also indicate infection. I had a chill which lasted 24 hours and I was then fine. I had never recalled having problems with my D-Dimer, but after some considerable emailing and trying to find out answers, I did find out that the surgeons were not concerned by the high D-Dimer, and that this would not affect my surgery, which was my main concern. However it all took far too much of my time and I often felt at cross-purposes with the medical team and doctors not listening to my concerns about my occluded subclavian artery. They maintained in the end they were treating me for neurological problems. I sincerely hope that my arteries are OK.