THE FIRST APPOINTMENT
THE BEXLEY WING
The day before the appointment I went on Google Earth to familiarise myself of its location in Leeds and I am glad I did, it is a massive hospital. I did a few print outs and went through what I wanted to ask the specialist surgeon when I saw him. And said all my prayers for help that it would be a good outcome.
I had a poor nights sleep wondering and worrying what they were going to say to me at Jimmys. My own specialist is always talking doom and gloom and so is my GP, telling me how bad my X Rays are and breathing tests etc. However, I am wondering now if my specialist at Huddersfield saw a better picture when she saw my scan recently, because, after pulling me in for an extra appointment last month, she said that she wanted a chat in general about going ahead with the valves and that I really didn’t need to have the operation done. She said, ‘people live for years and years like you are’, (exactly I thought, I don’t want to live like this for years and years), this was a bit of an about turn to how she had been talking to me before! (sorry if I have previously mentioned this in another post). Well back to Leeds.
The journey to the hospital was very easy for me as my Daughter drove, bless her it was only the 2nd time she had driven on the motorway and the first time she had driven in Leeds. Anyone who has driven in Leeds knows that the ring road is a nightmare and the first time I went to Leeds years ago I managed to do a few circuits of that before I reached my destination. I am not good with directions. But, now we have our built in Sat Nav I thought it would be easier for her. But noooo it wasn’t! Poor lass she only got stuck on the ring once on our way home and got really cross with the Sat Nav. When we arrived at the Hospital I was so glad that I have familiarised myself with its lay out because we would never have found our department as it was right around the back of the building. It was great because my daughter dropped me off outside the doors so that I didn’t have a lot of walking to do and she then parked the car up in the multistory, it saved me so much hassle.
The department that I was seen in was Surgical Outpatients and was located on the ground floor so it was very easy to find and they were running quite late so we had to wait for about an hour to be seen.`1
When I saw the consultant surgeon at Jimmys he drew a picture of my lungs and showed me the bits that were not working and it wasn’t as much as I had previously been told! You can’t believe the relief that I felt I could have cried. It is actually just the very top parts of both sides the right side being worse than the left. He explained that the parts not working had developed multiple bullae, which is –
an air pocket in the lung that is greater than one centimeter in diameter (across). Bullae tend to occur as a result of lung tissue destruction and diseases such as emphysema. Their presence in the lung takes up space, causes pressure and blocks your breathing.
I told the consultant surgeon that it felt as though I had a blockage in the top of my lungs when I tried to breath. I said it’s not like I am out of breath, I just can’t catch my breath and its a horrible feeling you panic. Its like being water boarded. He showed me the back of my lungs on the scan and said they were in fairly good condition. SO what is happening I would like to know and he then explained what was going on!
He listened to my lungs and said that a lot of good air was being taken in but very little pushed out. my lungs were running out of space because of these two top bits blowing up like a balloon and there is another couple of bits lower down but not that bad. So if everything goes to plan the situation can be corrected. I won’t get better overnight it will take time but there is a solution! He gave me two alternatives –
- Surgery – they can cut the top bits off my lungs so the other larger part can function correctly (don’t know about this)
- Insert valves that will empty the air out and not let any back in, in time these deflated balloons with shrink allowing my good lung to function, no surgery would be involved with this. However, it all relies on funding for this as its a very expensive process. It sounds better though, I don’t fancy being put under the knife but I would be open to suggestions from anyone who reads this post.
Before any decisions are taken I have to have a nuclear scan to test the actual function of my lungs they are not relying on my lung function test I had at Huddersfield, and I don’t blame them I am terrible at blowing into those things. To get a more accurate picture of my lung function the surgeon said the best way is with a nuclear scan and I will have it done within the next few weeks.
He said that they tend not to operate until the good weather comes in so I shall be having my operation in the summer months, I would imagine some time after March!
I know a lot of people who will read this will think why is she so happy about having all this, bullae, operations and everything, what makes a person so happy to know all this! Well the reason is, I thought I might be so bad that I wouldn’t be able to have any help and I would finish my life off like this, which is not a great quality of life, being out of breath every day. Its like you have to run a marathon every day of the week it makes you so tired.
Anyone who has severe COPD will understand how I am feeling, I have stopped smoking, done everything you are supposed to do, changed my diet (could do better with that) but, I have done as much as I can to help myself and had run out of options. I didn’t understand what was happening to me why was I getting worse when I had done all I had. Well it was them pesky bullae blowing up and stealing my breath, now I understand what is happening! He more or less finished the interview by saying that I had found them through my own volition and they would do what they could to help me.
The Nuclear Scan (link to piece on the scan)
I will be having my scan during the next few weeks and I think the above video is quite good. It explains the process quite well and I will be glad when its over. Another Hurdle will then be over. What was it like?