GFR and clinic at Hosp A

Today (18th Oct 2010) I spent most of the day at Hosp A. I'd asked for two appts to be on the same day so we could save ourselves a 60 mile round trip. It made it into quite a long day though. I am aware I've used some medical terminology in this post but I hope I've explained everything ok. If there's anything I need to explain but haven't, just let me know in a comment :)

We set off in plenty of time this morn (which meant me getting up at 7.45am, eek!) and left ourselves an hour and a quarter to travel the 30 miles to Hosp A as that usually works out fine. The hosp is in a city and we have to use a few major roads to get there which is why it takes so long to cover 30 miles. Unfortunately there was a traffic accident on our route this morn which delayed us and then the traffic just seemed very heavy at a couple of other places on our route. So I had to ring the department up and let them know we'd be a little bit late. Think I was about 15/20mins late in the end.

When we got to the hosp we nipped into the main toilets in the concourse and weren't impressed to find that only 2 out of 5 cubicles had toilet roll. When I was there last Thur only 3 out of 5 had. When we returned to the toilets about an hour later we couldn't believe that only 1 of the 5 cubicles had toilet roll so we complained at the reception desk. The lady there said she's already phoned up about it but phoned again. When we called back later there were toilet rolls in all the cubicles :)

I then headed to the nuclear medicine department for my kidney function test, known as a GFR. The antirejection medication I take, Tacrolimus, can damage your kidneys so they have to keep a close eye on mine. I had this test once at Hosp B in the 4 years following my transplant but my consultant at Hosp A suggested I had it 3 monthly. I persuaded him to make it 6 monthly, but if my results from today's test come back fine I'm going to ask him if I can have it annually. The test consisted of an injection of radioactive material into one hand and then blood taken from the other hand (via a cannula) 2, 3 and 4 hours later. So lots of waiting around.

I was a bit nervous about the injection and the cannula because sometimes phlebotomists struggle with my veins. The doctor I had for the injection didn't seem very friendly but she listened to me when I told her which my best veins were and said she'd be fine using veins in my hands (as the ones in my elbows are rubbish, but sometimes phlebs won't accept my word from that and want to try them). So she inserted a butterfly needle into my right hand, flushed it and then gave me the radioactive injection. As she gave me the injection I felt the cold liquid and then felt a bit hot and slightly faint. I didn't think anything of it as I sometimes feel a little bit faint after blood tests, but I took my fleece off and told her how I felt.

Then things got a lot worse and I felt really really ill. I've felt a bit faint after blood tests before, but not like what happened today. I felt like I was boiling up, my heart was pounding, I felt really faint, my hearing went funny (everything went echoey), everything seemed really distant and it was really scary, I was terrified. I'm not entirely sure what happened next but I think I was helped onto a bed and was wheeled to a different part of the department. Mum said it was all over quickly but it felt like a while to me.

I gradually started to feel a bit better and could sit up. Most of the radioactive team were away on a training morning so there weren't many people around, just the doctor who'd given me the injection and two nurses. We spoke to them a bit and apparently there isn't anything in the injection that people can react to and no-one had ever had any problems with it before. They seemed to think that I'd just felt funny after having an injection, but I know it was more than that.

Mum thinks my body has problems with adrenaline because often I seem to get extreme reactions to relatively harmless things. Apparently the radioactive material is seen as a waste product by your body so I think mine reacted to that for some reason. Although I'd had the test at Hosp B once before I don't know if they used the same radioactive material. I felt back to normal within about 20/30mins I think, but I don't really know what length of time it was. I felt light headed and my hearing went funny on a couple of occasions over the next few hours but it wasn't too bad. I don't understand my body! :P

The waiting around between blood tests wasn't as bad as I expected. There is free wireless Internet in the concourse, so I surfed the Internet on my iPhone and listened to some new music I'd downloaded last night. I decided not to have a cannula inserted just after the injection but to have it when I returned for my first blood test after 2 hours. We hadn't been told we had to return to a different reception so were waiting in the wrong place for a little while! I told the doctor which was my best vein on my left hand and she said it wouldn't take a cannula. But it did! :) I thought their way of protecting the cannula was funny, they didn't bandage it like Hosp B used to do, they just put a tubigrip over my hand :P That was much more comfortable once a nurse suggested cutting a thumb hole in it :) The cannula was fine for my first and second blood tests and just lasted for the third one, phew!

As a result of being late for my GFR and then having some of my blood tests a little late we were a bit late to my transplant clinic which had been scheduled after that. But I'd already text S, the transplant co-ordinator, to let her know, so that was fine. Mum attended the clinic appt with me and also in the room were my consultant, Dr W, the transplant co-ordinator, S, and my dietician, C. While we were waiting for Dr W to arrive we chatted to S and C. I'm still not sure about S but I really like C :)

Dr W took my dizziness seriously which I was really pleased with. He took my sitting and standing blood pressure which were both exactly the same and within the normal range so that suggests it's not related to my blood pressure. He thought that lying down when I get dizzy might still help though. He said when I get dizzy he wants me to do a couple of things to get some more information about it. He wants me to monitor my pulse and see if it speeds up or is irregular at all. And he wants someone else to look at my eyes and see if they flicker at all. He's also going to contact my GP about me getting a 24 hour tape (where your heart rhythm is monitored for 24 hours at home) done at my local hospital.

Dr W thought my headaches might be tension headaches as they tend to occur in the evenings and are in my forehead. Apparently there's not really anything that can be done though. Amitriptyline sometimes helps but I'm on that already. So he said just to see how they go and be aware that they might be caused by tension, but apparently there's nothing I do to fix that so I'm not sure why being aware of it will be helpful! S thought some gel pads that you can buy from the supermarket for migraines might help. And Dr W suggested it might be a good idea for me to try drinking more, or at least to spread my drinks out more evenly throughout the day, rather than drinking most of them at night, in case the headaches are caused by dehydration.

I told Dr W how my gynaecology stuff is going and asked him what he thought about me trying the combined pill. I'm currently on a progesterone only pill (POP) as I'd been told because I had liver problems in the past I couldn't have a pill containing oestrogen. But my new liver is healthy and has never had any problems. And I'm having trouble with my periods at the moment, which the POP doesn't control but a combined pill would. He couldn't see any problems with me having a combined pill so suggested I talk to my gynaecologist about that when I see her next (on Dec 23rd). So I'm hoping she'll say yes and that'll sort my periods out, fingers crossed.

I mentioned that my abdominal pains are better at the moment, but I'm not sure if that's due to doubling the dose of my amitriptyline, starting some fibre supplements or varying my diet more. Or maybe a mixture of those things. Dr W was pleased with that but wasn't surprised that I'm still getting some pains because my body is still getting used to what's normal for me.

Everyone was very pleased that my weight is so stable, that I'm finding eating easier at the moment and that I'm being a bit more adventurous with trying new foods.

I told my consultant how I'd corrected my sleep pattern for about 6 weeks but hadn't found that my productive time (11pm onwards) came at any other time of the day, I'd just lost it completely. Then when it slipped I couldn't motivate myself to correct it again. He suggested I tried to correct it again but more gradually this time. I've not decided if I'm going to do that yet - it's so hard fighting my body.

Dr W couldn't offer any help for my frequent coldsores so I guess I'll just have to put up with them. He didn't have any ideas about my eye ache and was as puzzled as everyone else has been about the rash I get under my eyes from the sun, but thought sunglasses might be a good idea, so I'll look into them again next summer.

After I told Dr W about my reaction to the GFR he was very puzzled as he didn't think there was anything in it that I could react to either. I told him I was worried about my next one following my experience today so he said before that he'll arrange for me to have an injection of a small quantity of the radioactive material to see if I react to that.

I asked about the results of the DEXA scan I had about a month ago and I'm glad I did because I don't think Dr W would have told me otherwise. Apparently my bone density was -1.9 which is right at the bottom of the normal range. I asked if that could be due to my steroids but he thought it was more likely to be due to things in my body being a bit delayed due to me being so ill. He said they'd keep a close eye on it but wants to start me on a calcium supplement as a precaution. He gave me a prescription for that to take to the pharmacy there but when we tried that they said we'd have to wait 40mins! That would have meant we'd have had to drive home in the rush hour so we decided against that. We were supposed to go back and ask for a different prescription to take to my GP but I've just emailed my GP the details from that prescription and I'm sure he'll prescribe it for me.

Finally I mentioned to Dr W that I'd volunteered him to talk at the PINNT weekend next year that I'm going to speak at. He didn't seem to mind :)

It was nice to head home after a long day, I think we'd spent about 6 hours at the hosp. I've got a 2 and a half week break before my next hosp appt. I'll next be seeing Dr W when I have my annual scope at Hosp A sometime in Dec and I think I'll see him properly in clinic in Jan or Feb.

I'm just having a quiet evening. Alf had some friends round briefly earlier and mum was chatting to one about knitting because she'd started her off knitting last time she came round! Mum also got chatting to two fellow knitters at the hosp today, she must attract them in some way! :P

I've got a few nice plans for the next few days. Tomorrow aft a friend with ME is coming round and on Wed eve I'm going to the cinema with Claire to see Eat, Pray, Love. Then on Sat I've got my first concert of this spell of them - Marina and the Diamonds! I'm so excited :D And next Mon is my second concert - Eliza Doolittle :)