Tuesday, March 29, 2011

Goodbye to Hospital, free and clear, for now

I have escaped the confines of hospital for the present.
During the morning I recieved a visit from Richard Burbedge @AwoogaBurbs
who had been called back to clinic that day with similar problems of lowering of respiratory function and ended up being admitted to the downstairs ward as I was getting  the chance to leave.I felt for him and tweeted him all the best and hoped it would not be a long stay
It took till the later part of the day before the results of my Bronchoscopy biopsy  was returned and was found to be clear of anything abnormal. I was sent to the lung function room and had my FVC1 and FVC checked again. There was a bit of a increase in both values this was enough for a discharge summary to be prepared.
I rang my wife and let her know, packed up my stuff and had some food while I waited for her and my son to arrive.It had only been a short stay but the whole process had taken it out of both my wife and me
 I noted the new set of bruising on both of my arms from the IV steroids that had been started  over the weekend  and the failed blood tests that I had done.My arm have still not recovered from the previous stay in hospital and finding a place to site a cannula is becoming increasingly hard for the doctors.

The one thing I was not happy about was the large amount of steroids I will be on for the present I started a reducing dose starting at 70mg and dropping by 5mg daily until I get back to the normal dose of 10mg that I use, in several days time. This has left my feeling unwell and has upset my digestion, and has encouraged hamster look to my face and  bloating of my waist.
It took no time at all to get home and I enjoyed the drive as the motorway was clear. We dropped off at the local Mac burgers to get some food for my son on the way home. We got back late evening. The plan was to return to clinic in two weeks and I had a appointment to attend the Churchill Hospital the next morning as a follow up to my stay at the end of January

This is not how things worked out as when I got up today I was totally unable to get up. The combination of steroids causing my upset digestion, pain and general tiredness caused me to cancel the appointment and make a new one for next week. I then spent the rest of the day resting in bed until the pain was better.
Never mind tomorrow is another day I hope that I will be more recovered then:)    

Sunday, March 27, 2011

Hospital stay nothing yet?

Spent the last three days in Harefield Hospital came in on Thusday at 10am and had a CT scan which I found hard work as laying flat is still hard for me.
Then Friday I got up early and went for a bronchoscopy I was happy that I was one of the early ones and so was back on the ward for medication. I went for a X ray then the doctor informed me that all had looked okay and no infection or secretions were noticed.
Because the biopsy results would not be available till  Monday they would start me on IV steroids in one gram doses for three days then I would go onto a reducing dose till I get back till my normal dose of 10mg daily to prevent any rejection before it started,and to help my lung function improve.
On the whole the stay has been all right but quite painful due to the lack of usable veins for IVs and blood samples.My arms are covered in bruising from attempts made to site cannulas for the medicine.
It has been nice to see some of the nurses on the ward again though and today I went out to the village of Harefilds for a walk for a couple of hours so I thoght I would add some pictures taken on my phone as I walked to give a flavour of the day as it was a great day with nice weather

Harefield Hare

Lake on the hospital grounds

In Memory


I am hoping for good news tomorrow regarding the test results and with any luck I will be able to go home watch this space and keep your fingers crossed for me I have had enough of hospitals for the moment:) 

Wednesday, March 23, 2011

Recovery Investigated, Back to Harefield Hospital

It seems that I may have spoken too soon!
We attended the Transplant Clinic at Harefields on Monday 21.3.11 and was happy to meet up with two twitter friends at lunch time one was @LamLungArtist  (Justine Laymond) who had dropped in for a while. She was telling me about her latest venture.
She is training for the Clipper round the world race.She is going to do the last leg (8) which sails from USA, Canada, Europe, Ireland and back to the UK. This involves,4,000 miles, 22 days at sea, with 4 races in total. If you want to know more check out her blog http://www.justinedoublelungs.blogspot.com/ I noticed that she also had a piece in the Harefields Transplant club news letter.
I also met up with another lung transplantee @AwoogaBurbs (Richard Burbedge) he was transplanted back in June and under went a new procedure. The new minimally invasive lung transplantation differs from established lung transplantation because it doesn’t require surgeons to cut through the sternum to open the entire chest. Rather, the organs are replaced through incisions at the side of the rib cage, vastly reducing scarring and dramatically improving patients’ recovery times. You can read more here
He has had a good recovery and has been able to start to go swimming again recently, something that I hope I will be able to do soon.It was great to talk about how they were doing and I was encouraged listening to how long it had taken to reach their improvements as I felt that I should have been doing better by now, but with my CO2 problems I have been slowed down in my recovery.

It seems that I was to have a few more investigations before I would be sure things were better for me.I was seen by the Doctor in the afternoon who dropped a bit of a bombshell.  He was concerned that my lung function was less and that I had gained weight since my last appointment.He wanted to admit me for tests!
I had noticed the weight increase but felt that my lung function was generally good but hadn't improved since my last clinic appointment. I didn't feel unwell and was quite fed up with the thought of admission.
I resigned  myself that it would be useful to find out how things were in my lungs and that a Bronchoscopy ,Biopsy and CT scan would give the doctors a chance to investigate properly.
So I will be getting admitted to Harefields Hospital tomorrow and hope that the tests that I have done will be able to show that things are progressing well with my transplant recovery I hope that I will be able to go home on Friday if the test show no problems:)

Wednesday, March 16, 2011

Recovery confirmed

I continue to recover from my brush with CO2 poisoning recently,and attended a check up at the Churchill Hospital where I was fitted with my Bi pap machine after my discharge at the end of  January.I have been wearing the mask every night since then .I was hoping it was removing the CO2 in my system overnight,but I had not had confirmation of that fact and was feeling a bit worried.
I was seen by one of the sleep nurses who offered to answer any questions that I might have about the equipment. I mentioned that I had broken part of the mask after a week of  using it and she kindly bought me a new mask and suggested methods of cleaning the water tank that humidifies the mask .

She then stuck a needle in my ear to check my capillary blood carbon dioxide level,which sounds bad but on the whole it is painless compared with arterial blood sample from the wrist which is one of my pet hates.
It look very little time to check that the Bi Pap was doing its job well and my CO2 level had been reduced to normal levels.This was great news and I felt relieved that I was not in danger of a collapse again.I have another appointment with the doctor at end of March so I hope to find out more about the long term plan then.But on the whole I was relieved and went home happy!
With this recovery confirmed  I decided to start doing more exercise. Sunday the weather was good I took opportunity to walk to the local shops for a paper and some bread, it was much further than I had tried to walk before and as I set out I felt quite a lot of apprehension. Would I be able to make it? I started to get worn out at the half way point, but I resisted the urge to stop and continued on.When the shop came into view I was over the moon and was able to catch my breath while in the shop I searched for a paper for my wife and a loaf of bread.

I bought a sandwich and sat on a bench near the shop and ate it before I attempted the return journey.I didn't have any food before I left and I have found that if I don't eat after my anti rejection medication in the morning it upsets my digestion. I started back home but about half way the road was inclined slightly up and the bag of bread and the Sunday paper was quite noticeable on the return journey and I felt myself slowing down.when I did get to my house I was breathing heavily and it took a while for my breathing to return to normal,but I had done it,I felt great.

I had thought that I should be able to do the walk easier than I had, but then I was reminded that in the last five years the prospect of a walk to a shop down our road was beyond me, so I felt happier and I resolved to do much more walking as the weather gets better and as my strength increases, and  look into other ways of building myself up again as I gain fitness such as swimming and maybe some weight training.  

Walking to the shop for the Sunday papers is not a big deal.

But I am reminded by this walk to give thanks to my donor who has given me the chance to walk again!
If you haven't signed the organ donor register please consider doing so.

Give someone else the chance to walk again please
You can follow the link at the top of the blog on the left hand side, the flashing heart !
It is sad to remember that still only less than 30% of the population have signed the register

Wednesday, March 2, 2011

Visit to Clinic results in one month off !

I attended the transplant clinic and was given a clean bill of health by the doctor, he was happy with my lung function and X ray and stopped one of the meds that I had been on since the transplant, also cut the water tablet that I had been taking since my collapse.Then he said that he was happy for me to wait one month till the next visit!
This will be the longest that I have gone between clinic appointments since my transplant.It was great to leave knowing that I would have some time to make plans and make the most of my new lungs between visits.I drove home with a fresh sense of freedom but also a slight worry about how things would go.

I got back home and my worries proved groundless and things have been going well I have started to cook again and was able to cook roast dinner for the family on Sunday and clean up afterwards which to some may not be much, but before I was transplanted I was unable to deal with the cooking fumes without breathlessness, I am really enjoying helping out again.

I put some pictures in the latest competition in my camera club and scored 17/20 for one even though I entered  at the last minute with little preparation I was happy but will try to enter some prints in the next competition as well.

I also took advantage of a nice day and went to Oxford to the local Jessopes  camera shop to look at the latest 60D Canon.It was so good to be able to walk to the shop with my son that I never was able to get to pre-transplant. I was impressed by this new camera but another model is being released soon that I want to see before I make a decision about which to buy.

I was also able to get to Oxford with my wife and daughter and walked around for the afternoon getting to many stores I had not visited for ages and not having to worry about stairs and if there is a lift available.we finished the day by going to Blackwells bookshop and I took my daughter to the basement room which is vast so that she could look at law books she was amazed and surprised about the amount of books there.
So many time over the last couple of weeks I have done things I couldn't do before and I find myself  doing things that would have left me a heaving wreck before. I am so grateful to my donor and I hope I can honour the gift of life that he gave me!
Finally I got confrontation of my status as a healthy person when the oxygen company came to collect the oxygen machine and my portable cylinders. They have been part of my life for so long  that in some sense I was sorry to see them go! They had been my means to carry on with life but also like a ball and chain that I was forced to carry  they tied me to a status as a disabled person when I was forced to use them.
Now I get breathless, but I know that I will be able to catch my breath without a tube up my nose and have joy at the experience of breathless bought on by exertion without the panic that I was cursed by before my transplant.

Please remember those who are still waiting

Sign the register if you haven't done already. The donor I received my gift from was only a bit younger than me ,we never know what the future holds but you can leave a legacy that lasts a lifetime.