What a day it was!!!!! It began at 8.00 as I was wheeled upstairs to get into my gown and the very lovely (not) hospital nickers! I wasn't even given time to say goodbye to Colin, a chair appeared, I was told to get on it and then I was whisked away with the speed of lightning. As I was sitting just waiting in my gown I must admit to feeling a little nervous, though I never at any stage wanted to back out of the procedure as we had talked about it all again the day before with Alex and we put our trust in him totally.
Alex came to see me and asked how I was feeling, the answer was excited as I so wanted to see if this was a game changer in the world of people living with pulmonary arterial hypertension. He was joined by another person and they walked me into the theatre. So there I was, I had the main man, Alex and the main event was to begin. I had been told the theatre would be full and so it was. I was introduced to all of them but I admitted that I would not remember their names, It was a pleasure to see Faith was in the theatre too as well as Katy who was the research co-ordinator and the many many more. Alex told me not to get worried about there being so many in but as have said before as an ex member of my local theatre I loved an audience. This made them laugh and I immediately felt I was in good hands.
Geting all ready took a long time. Obviously there was all the sheet covering etc but the biggy was getting the sheath and all that was necessary into my neck. The machine being used for this procedure was designed and made in Israel which is why there were a few people from there in the room as they were doing part of all this, the burning part, which was done by a machine behind me by pressing buttons. but it was Alex was the one by my side and moving the catheters into the correct position. This does not sound much but honestly a tiny slip and it could have been disaster for me so it was very time consuming. There was an awful lot of machines taking readings and a lot of talk going backwards and forwards as to what the readings were. Most of this went over my head as I just lay there and thought about what was about to happen. A Professor Jud lifted the cover of the sheet to say hi but I couldn't see him. He is a very well respected man and I hoped to at least see his face afterwards.
A hand appeared under the sheet and Katy held a mask in place and I was then breathing something, I don't know what but nitro?? comes to mind, may be totally wrong and again another reading was made. At last we were about to begin, Alex squeezed my shoulder and told me to prepare for the first one. Did it hurt, in truth yes it did, the burn began slowly and built up to a crescendo not just where the burn was but all over both lungs and up into my throat. I know I groaned, did'nt mean to but I could not help it. Alex asked me if I was ok and I said yes. I knew I had to do this, had to give it my best shot. I was in a very privileged position being the 8th person in the world to be offered this and I knew there was no way I was backing out. I also knew that two of my Facebook friends had had it done, one I knew personally so this helped, I had to do this.
Before it began Alex told me until he got into my lungs he could not say how many he could do but he did say he had a plan. Again I trusted him. So on it went, readings being taken all the time and everyone doing the job they were in the room to do. Each and every time a burn was made (actually we were told not to call it a burn as what they were doing was damaging the nerve) I was given huge doses of heparin to prevent blood clots forming. Through all of this I needed to remain still. I had a great team and all worked together to achieve a hopeful result, even taking my socks off as my feet got too hot!
The sheath placed in my neck to allow all this to take place was a third bigger than the one used for our right heart catheters. In truth it felt like I had a cucumber stick down my neck. It felt weird. The TIVUS catheter was placed in the main, right and left pulmonary arteries and ultrasound energy was used to damage the nerves. I was told that the number of treatments sites in the pulmonary arteries would depend upon each patients anatomy but the number of treatment sites in the right and main pulmonary arteries should be between 2 and 8 and no more than two in the left pulmonary artery. In total I had 7 done so I am truly hoping for a difference in my levels. I overheard them saying that my levels would not be tested until 4 months so this is the milestone I am working towards now. I know one of the catheters failed halfway through so this had to be taken out and removed. I do remember Alex telling the guys from Israel he would give it back to them, I suppose to see why it had failed.
When it was all finished, four hours in total I saw the trolley coming in to take me to recovery. I asked if I would now be doing the bum shuffle to get onto it and was told in no uncertain terms that I was doing nothing, I was being chauffeured everywhere today and a pat slide was used to transfer me onto the said trolley. Once on it they lifted up the back so I could sit up and oh the joy of this, I groaned with pleasure this time as four hours in one position is very trying. Before I left the theatre I called out a big thank you to each and everyone of them who had taken part, I knew I owed them a huge debt. Smiles were all around me and I felt such relief. I heard the banter that was going on now it all was over, I know Alex came into some stick from the mess he made around the theatre bed, I think it would be blood as he had to do so much work in my artery. I felt truly happy at his stage.
I was pushed around to recovery where I expected to stay for around half an hour. How wrong was I. I could see the board opposite me and I was acute care. I needed a one to one care and again how blessed was I. Danny who had been in the theatre came and asked if he could take me on as he had been there all the time and wanted to see it through. Now Danny was a star. He brought me food, I tried but could not eat it but talked to me and made me take my mind off things. I told him I was worried abut Colin as I knew he would be in a panic as I had been away for so long. Without ado he rang the ward and got Colin on the phone. I immediately burst into tears and told him I had been so worried about him as I knew he would be wondering where I was. Danny pulled the curtain around whilst I talked to Colin and then began 4 hours of working on my bloods before the sheath could come out.
Alex came to see me in recovery as too did Professor Jud so I actually saw his face. They were both happy about how it went. I know Alex is quietly optimistic as he has seen all the progress of the others. One guy in Belgium has even been taken off his ph meds.
Blood had to be taken about every 20 minutes and put onto a machine to test its clotting ability. This blood was taken from my neck by Danny and each time we hoped it would reach the acceptable level of 180. Well it just would not go down to this magic number. Once we thought we were very near only for the next lot of bloods drawn showed it had actually risen by about another 50! The reason was the huge doses of heparin given through the procedure that kept on releasing itself into my body. It took four hours to get the number needed. Eventually the number needed was set to go and Danny expertly removed the sheath from my neck, oh the relief.
Another step reached and we were able to go down to the ward where Colin had sat for over 8 hours!!!! He had been kept informed from time to time being told I was still in theatre but all was well etc. Alex had got down to talk to him once I was out and in recovery, as too did Katy. Once again I was not allowed to bum shuffle onto my bed, another pat slide was used. Danny bless him told Colin he had never seen such a brave person in theatre as me, he said he did not think he could have done it being awake and having to keep still for four hours. I gave him a big hug because he was such a big part of keeping me happy and relieved when in recovery.
Alex came to see us and told me he was pleased with how well it had gone. I was given an ecg and my pressures were taken. Alex was given these and was happy. He told me he would be back in the morning, he would be sleeping not far away if he was needed but did not see that there would be a problem.
I knew I could not get out of bed and was busting for a wee. A bed pan was brought but no way could I use it, try though I did. Nothing for it but to just try and hang on another two hours. Eventually when I knew I could get up I did so with the help of Colin, I was wobbly. back to bed and Colin left to go to the hotel. There was a lovely lady opposite me and we had lots to say. She said she knew that something special was going on when she heard people talking to Colin so was longing to find out. We talked about it and she was hoping to friend me of Facebook so she could see my progress. Unfortunately the wifi was not very good so it did not come through.
In the middle of the night at around 1.00 an elderly lady was admitted to the ward, she was 92. She was confused and asked to be moved upstairs into a corridor, The nurse taking care of her was very patient in explaining to her why she was in hospital and why she could not go home. When the nurse left the lady in an undertone said "what a load of f.ck..g b....cks! " I was so shocked I laughed out loud. it was certainly not the language I associated with somebody coming up for 100 years old! So my sleep was not the best but I hoped to be feeling quite well in the morning.
I knew Alex was coming at around 7.00 so I got up at 5.30 in the hope of taking a shower and settling down before he arrived as I knew another ecg was to be taken. I was shocked to the core when I found that I could barely stand let alone take a shower. My legs were like a baby just learning to walk. I washed as well as I could, taking great care to hold on with the other hand to any appliance that was near. I went back to bed gripping chairs, beds and walls along the way. When Alex arrived I told him how I felt and he assured me that it was normal, that it was huge what had been done to my body so again I felt reassured and again the ecg done whilst he was there was acceptable.
Colin arrived and could see immediately that I was not too well but I told him that I also had not been allowed my tablets by the staff nurse so was over two hours late for them. Eventually I got them 2 and a half hours late and this was because Faith, the research nurse got them for me and watched whilst I took them. The staff nurse was not happy about this at all as she said she need to see me take them.
I got up and she asked if I was ok, it was obvious by my face that I was not feeling well. I told her that as I was almost 3 hours late for my tablets by the time I took them it would be affecting my ph. Anyway the good thing was my driver home was Dean, my usual taxi driver when doing research. He was well known by the staff and he made a joke that he always took me to appointments as nobody else would cos I was usually drunk by this time! He took the bags whilst Colin helped me get to the door and into the taxi. I was shocked that I was as weak as a kitten. When I got home it was straight to bed for me and a very restless time but I have woken to a new day and feel so much better than yesterday.
It was so lovely to read all of your good wishes for what was to happen and I promised to write my blog as soon as I was able, so here it is. If you are offered this procedure then I would not hesitate to say go ahead what do you have to lose.
Go well everyone, I was bolstered by knowing that you are all rooting for me, it meant so much.
tons of love to you all