Up The Farway Tree

Outpatient Clinic

I am home! They didn't keep me!

We travelled down yesterday afternoon and spent the night at Pat's (mums friend) before heading to the clinic for 7.15 am this morning. We thought we were nice and early but there was already a queue of people waiting! You have to take a ticket when you arrive, so that you get taken in order - it's a very busy clinic and the relatives often get sent to sit elsewhere as there are never enough chairs. The first port of call is blood tests, which have to be taken early so you can then take your anti rejection drugs. Unfortunately my veins didn't want to play ball today and after a few attempts the first nurse gave up and I had to wait on the more experienced nurse to have a go. Another few failed attempts later and I was told to sit with my hands in a basin of hot water to make the veins come up. Luckily this did help and I finally parted with some blood. I have to phone tomorrow for the results but I'm sure they will be fine.

Next it was round to lung function and I was disappointed when on the first attempt I blew exactly the same as last time (75%) when I had the rejection. However after another attempt I got it up to 79% which sounds much better :-) I am still chasing the elusive 80% + which would put me within the bracket for a 'normal' person. It's a target for next time. I then went round to x-ray and since no one commented otherwise, I assume it was fine.

I also had to get an ECG today because my heart rate was a quite fast (12o at rest) and it has been like this since I got my transplant. It was always fast before due to poor lungs and chronic infection, but it should have come back to normal by now. The ECG was just to check that the rhythm was normal, which it was.

We had all this done by 9.30am, so just had to hang about for the next 2 hours waiting to be seen by the doctor. It is quite boring I must admit, but I did have a book to keep me busy. We also bumped into a lady we knew from my old children's hospital and she has had her transplant for 15 years, which was so encouraging to hear!

We finally saw the doctor about 11.30am and I'm sure he wasn't amused when I pulled out my list of 'things' I wanted to ask about! I was concerned about the heart rate and he did think it was odd, but wanted to discuss it with the consultant after clinic. It's not really anything to worry about but they can use drugs to slow it down if it is bothering me. It does bother me at night as I can feel it thumping in my chest as I try to get to sleep - however the drugs to slow the heart down (beta blockers) may also make me tired and I don't want that. We will discuss it at my next appointment.

I also explained that I had been coughing a bit lately and could feel and hear some mucus in my chest - this was worrying me because I had this during the last rejection. He said it could still be due to the healing process and wasn't too worried in light of the fact my lung function was up, and I was otherwise feeling ok. They cannot rule out rejection at this stage but they would not do another bronchoscopy so soon after the last one, so there is nothing else to be done at the moment. If I start to feel otherwise unwell I can contact them but I am due back in 3 weeks for my 12 week bronchoscopy anyway so I will be getting checked out soon enough. I will just have to be prepared for a potential stay at my next visit and if all is well it will be a bonus!

I also have been suffering from terrible sinus pain lately, which is quite annoying to say the least. I had major problems with this pre-transplant but at the time it was the least of my worries - now its really bothering me because I feel so well otherwise. I am still taking all the strong painkillers for my wound and this is hardly touching the sinus pain. The doctor said I have to be referred back to the ENT (previously I was too ill for further sinus surgery so was discharged from the clinic) in case there is anything else they can do. The main concern is my sinus infections causing infection in the new lungs, especially since my sinuses harbour all my old CF bugs. I have already phoned my CF team and they are going to refer me now so that we can get the ball rolling.

My final complaint was acid reflux which seems to have got worse since the transplant. Apparently this is quite common and is due to interference with nerves and side effects of medication. I am on high doses of medication for this anyway so not much else can be done. I am still taking part in a study looking at acid reflux post transplant and will be getting more tests in a few weeks to look at this, so I will mention it then. Maybe I should cut down on the coffee - that's bad for reflux. Let's be realistic though - that's just not going to happen ;-)

Otherwise they were really pleased with me - lung function up, weight stable, sats 99%, blood pressure normal and chest sounded good, so I can't ask for much more than that! Gold star for me :-)