First Clinic of 2013 - Happy Easter

Went for my first transplant clinic visit this year on 11th March.
This was going to be a quick check up and a early return home I thought, but fate was conspiring against me and the day took longer that I had anticipated!
The day started poorly with the bloods, my veins were giving the clinic staff some problems and it took a few attempts to get sufficient blood out of me to test,so I left the room with a few holes more than I thought I would!
On a  more positive note my blood pressure was good as was my Oxygen saturation, but my weight had gone up slightly despite my efforts.I did have a chance to pass the time with a couple of the people in clinic while waiting and was glad to here about one man who was celebrating 10 years since his Tx he was telling me about how things had changed since he had been coming to Harefield with the new clinic building, the Anzac centre, being the centre for transplant outpatients now.One of the great things I find about going to Tx clinic is the chance to meet and talk with others who have gone though the transplant experience.
I had my X-ray done and  was booked to see the kidney consultant in the afternoon I just had to complete the dreaded Lung function test. I had very little worries about this as I had got back to swimming regularly and had just completed 60 lengths of the pool on the Sunday before clinic.But when I went to blow it was apparent that my FEV 1 (The amount of air expired in 1 second) had dropped quite a lot from my last reading before Christmas, I tried not worry too much but was disappointed as this could be a indicator of infection or a early sign of rejection.

When I got to see the kidney consultant I was glad to hear that he was happy with my progress and told me that my kidney function was good at about 66% and that I shouldn't worry about problems with my kidneys he said he was happy to see me in another years time, good result!
The Transplant doctor was less happy she was concerned about the drop in Lung function as there were no infection markers in my blood to indicate why.She also told me that my Tacrolimus level (Anti rejection drug) was high and would require a dose reduction, this was good as these tablets upset my body a bit and lead to problems with the kidney, but I was a bit worried why the levels were up after so long stable.I was told to get a repeat blood test in a week for levels at the GP, and come back to clinic in a month.
On the way out I sorted out some 0.5 mg tablets for the reduction in the dose levels through the pharmacy and got on the road home. Little did I know that the day had a little more in store for me before I would pull up outside my house that evening.

The journey home was going well and I was quite tried so I wasn't hanging around I was nearly at High Wycombe when the car started to loose power then loose speed I moved from the fast lane across to the first lane and found that I couldn't get anymore than 40mph out of the car!! I was just approaching a junction so I decided to exit the motorway and just as I pulled off I saw a large Tesco store and managed to pull in
and park. I rang the RAC to attend and luckily they turned out quite quickly, the guy was great, the car was running so he decided to take it for a drive to see what the problem was.while I was waiting I went for a Costa in the Tesco  as I was parked outside.When he returned he said the car was okay and that the diagnostic computer had shown up no faults. He suggested that a sensor in the car engine had put the car into" Limp Home Mode" and had most likely reset its self while I had been parked, the cause was uncertain but he felt that it was better again and shouldn't give me anymore problems.

I took him at his word and set off again and had nearly go to my turn off when it happened again!!! I decided that this time I would just head for home and keep going but my luck was not good and as I left the motorway I found that my route home was blocked, the road was closed by the police for a accident !!! so right at the end of my reason I returned to the motorway and went to the next turn off at 40 mph :( Drivers on the motorway were not impressed, after another extra 15 miles travelling at similar speed  blocking all the traffic on the way I made it home.
When I turned on the engine again it ran fine but as I was pulling out my hair about the break down on the way home.So I called out the RAC who took it to the garage where it has stayed for the last two weeks. It had some work doing that was left form when it was serviced, but try as they might they were unable to find the fault so it has now been returned to me with the hope that it will not go wrong again!!

Finally home and with my car returned I have felt a bit under the weather and a bit breathless at times but I have continued to go swimming to maintain my lung function my  Tacrolimus level (Anti rejection drug) results  came back still at the same level as it was at clinic so I have had another does reduction to 2 mg daily and I will get a blood taken after Easter with the hope that thing will have settled down by then.Then I will be returning in mid April to clinic

To all you waiting for organs I hope you get the  new life you wish for:) 

To those who have had a transplant wish you all the best of health! 

To those of you who have yet to sign up to the Donor register click HERE

Hope everyone has a Great Easter

Enjoy your  Easter eggs

    

Good Results At Tx Clinic

Despite my negative view about the cause of my pain in my last post it seems that the doctor was right about the cause. It was a case of muscular pain which can be worse after you have had shingles he informed me.
Therefore I have decided that I will restrict myself to just I mile (64 lengths) per session of swimming and a max of three times a week for the present. I aim to build up my stamina by adding more crawl in each session.This allows me to do my sessions in about 1.5 hours.

This last week I attended Harefield Hospital for a check up and was seen by Dr Carby. 

I had the usual blood tests,lung function, X-Ray and an additional ECG done. I am now over two years transplanted this was to check my heart was functioning well.

He was very happy to hear about my progress with the swimming and I asked him about holidays, his advise about long haul flying and destinations that I might need to avoid should I travel.He was very supportive and said as I was doing well he had no problems with most places.Food poisoning would be the biggest risk I might face due to my immunity being reduced. He advised me that good travel insurance that would fly me home quickly if things went wrong would be a must.In Europe most people had no problems and some don't bother with insurance. But my thoughts are for far distant lands, America, Japan and Australia so I will have to plan well.The staff at clinic provided me with advice about vaccination and provided a list of travel insurance firms that others had use in the past which was great :) 


How did I do?
My Blood pressure was normal which is good as it had been high.
My Weight had gone down by another 2 kg
My Blood tests showed normal levels and were stable.
My Tracrolimus levels were 5.0  ng/mL  an ideal range.
My ECG was normal
My Lung function was up (due to the swimming I'm sure)
My Xray was normal



I was given four months off clinic and am due to return in March:) The only thing that didn't go well was the weather which was lousy there and back raining constantly, the whole process left me worn out but happy!!

After the Storm

Talking about that we had another competition at the camera club this month. 

The subject was "Weather"

 I put a couple of pictures in as digital entries, but they failed to gain many marks due to the high level of some of the entries. The highest score was 14 for the  picture above taken from Glyne Gap looking toward Beachy Head Eastbourne . This was taken during the summer when we had our holiday in Sussex.

This is a picture that represents for me the end of a storm in my life that was my illness and then my transplant.

I am finally now feeling like life is settled again. 

I am looking forward to a great new year and what it may bring

Finally things have been sorted out with my mother's estate and my brother is in the process of sorting out her house to rent. The financial issues have completed and I will be moving into the new year with less money worries. It will be so hard to spend my first Christmas without her this year and we are both feeling the loss now that everything is over with.
I just know that she will be with us watching over us and our families this festive season and although financially things will be easier now we will still be missing her a lot and I will be attending church to light a candle in her memory over Christmas.

I will also  light a candle for my donor without whom this festive season would not have been possible for me or my family.  

Stuck, don't know what present to give this year  

Give the gift of life 

Sign up as a organ donor Here

March on To Spring

Went to my clinic appointment this week and despite my cold leaving me gasping for breath , I have succeed, with my reduced immune system in overcoming it. My lung function has returned to a stable level and I am feeling more confident that I will not have any more problems now.
I saw Dr Carby who was happy with my progress I had lost a small amount of weight since my last visit and although my lung function was a bit reduced he was happy for me to leave Three months till the end of June until my next clinic visit!!
The only slight issue that arose was my kidney function once again was a concern.
I am back on the 26th for some advice from the dietitian, so he requested that I do another blood sample then to check my Creatinine levels then decide what must be done. He suggested that medication change might be on the cards, but I am hoping that things will have settled by then with any luck.
When I questioned him about the cold he said it could take up to six weeks to get over completely and I should carry on with the Ventolin till I was sure I was better.     
This was the first bad cold that I have had since having my transplant and I must admit it scared me,it brought back memories of what it felt like when I was breathless before transplant and having nebulisers of ventolin reminded me of my asthma attacks in the past.

The statistics that you are quoted before transplant are not encouraging 80% 1 year survival 50% 5 year survival and my consultant said something that stuck in my mind "If you get seven years from a lung transplant we would consider that a success." People think that a transplant is a cure, it is not you are swapping one condition for a new one one that needs constant vigilance, monitoring, medication and positive attitude to manage.Add a large dose of humour and faith in your God and your transplant hospital and you can help the stats in your favour. You can never beat the odds completely but I hope to have a good go!!!

I read a story this week about a woman who has become the longest surviving single lung transplant patient. She celebrates the 20th anniversary of what was the first ever operation of its kind. On May 18th, 1988, With only days to live, Vera Dwyer, Carrowcrory, Keash, had the history-making surgery in Harefield Hospital, London.
You can read the article here   
 Transplant can be such a tightrope to walk at times and some of my friends have slipped and fallen! This illness reminded me of this, how grateful I am to still be doing well.

Even though I was not feeling well I have enrolled in a gym. One of the trainers is a physiotherapist trained in cardiac rehab and I had my first meeting just before my Harefields appointment. I will start my attendance when my cold is completely gone.
The other thing that I have done is to get a new appointment with the Churchill to find out about my Bi Pap and if I still need to use it.That will be coming up in April and I am hopeful that I may stop using the mask each night if my CO2 levels are stable now.

While I was in clinic I was lucky to bump into Kerry Maletroit who was  looking good and still recovering well after her trip back to Jersey for a family reunion recently. She had a successful day at clinic and her lung function continues to improve.
One of my other friends was also in clinic, Dawn Bostock she was hoping for a bed to sort out some problems she had been having. She is now getting sorted out in Harefield, but due to the amout of people with  colds and bugs she had to wait for a while for a bed. I am sending out all my best wishes to her for a quick resolution of her problems and a swift return home :-)

Finally I had another competition at the camera club and although the picture didn't score well I thought I would include for your veiws it it is a local landmark and one my contributions to the "Industrial landscapes" competition,please let me know what you think of it. 

Sunset over Didcot B

  You can also see another of my winning pictures at the website for the club now that has been posted, it scored 20/20.

It is a typical Oxford picture looking out on Magdalen College bridge where the Oxford May Morning Celebrations happen. The view is taken from the Oxford University Botanic garden.
If you what to see the photo it is Here

Happy New Year to All

After my last post I was able to sort out my medication by Christmas day I had started to feel a bit better.

My stomach had settled and I was able to have a great Christmas dinner that I was able to cook all by myself and it turned out great:-)
I was reminded about how things were last Christmas and how I was still recovering and only able to help with the cooking. I was also to suffer a setback in January that nearly lead to my death due to CO2 problems this all seemed like a distant memory but I was still concerned about how long I had low levels of anti rejection medication in my blood and was that going to be a problem?
I was very happy that after a repeat blood test was sent yesterday I received confirmation today that the levels in my blood were back to a acceptable concentration to prevent organ rejection developing.

I thanked God.Then thanked the clinic staff for the information.

This Christmas was the first time that I had let alcohol pass my lips since the transplant.I had a beer with my Christmas dinner and although it nearly put me to sleep I loved it!

I will now be repeating the experience for New Year and while doing the weekly shop, I stocked up with a few cans for a celebration over the New Year weekend!

The other thing that happened today is that I had my last session of pulmonary rehab at the gym and because of the last six weeks I am starting to see muscles on my arms again! I am keen to continue into the new year now I have got a start on my fitness.
I hope to get back into swimming as one of my sessions each week as this was a particular favourite of mine in the past before I got unwell and I miss the freedom it gave me.
I hope that it will help me condition my legs as I am still finding it hard standing for any length of time without cramps and pain developing. My long term hope is that I will be able to loose the weight I have put on and walk much further than I can at present.

I mentioned last year that I didn't know what I would do with my health improvements and what I would do with my life.This last year was a long one and it has taken me a lot of the year to get settled and start feeling like my self again.

I am confident about my health again but for a long while I was not.

I felt that my body wasn't my own any more, and a large part of me is not my own but someone else's that I am doing my best to look after and nurture. 

This gift that I carry in me makes me so humble. 

 I was offered this second chance at life I want to do the best I can with it.

I have decided to look into voluntary work that I can do and see how my skills can be put to good use within some sort of charitable organisation. I hope that I can continue to work with the support group at Harefield Hospital. I will continue to support others still waiting for a transplant through social media like Twitter and Facebook and continue to develop Transplant News on G+ .
I will be attending a speakers training session in the early part of January organised by LLTGL I hope that this will enable me to share my story and so promote Organ donation registration.

Future is looking bright :-)

 

 

Finally I would like to wish all the readers of this blog

A Great New Year in 2012

  Health, Happiness, Dreams & Hopes fulfilled

Bloody Christmas post

Christmas is approaching quickly and I am rushing to get things sorted before the day arrives.
As I mentioned in the last post I had concerns about my blood levels of anti rejection medication nothing that I could put my finger on, but I felt it needed checking since I stopped taking medication for the bout of shingles.

So I went to my GP surgery as I was advised by Harefields transplant clinic and provided a box and a form for them to use to send the sample.
The bloods were taken by the practice nurse who had experience of sending bloods in the past and they were sent to Harefields to be checked and reported or were they.......??
I rang the clinic on the Friday after the Thursday they were taken the blood had not arrived I was asked to ring on the Wednesday following,still no bloods.
I was most annoyed, I contacted the GP surgery to find out that the staff had no idea about what had happened and as the nurse who had taken the blood was away there was no way to find out I was informed.
I took issue with the head receptionist and asked who had sent it to the post office as it was an important sample and poor levels could compromise my transplant.I was informed that it had not been sent to the post office but it had gone in the Christmas post sent from the surgery! Mixed in with the Christmas cards and presents being sent around the country at this festive time of the year.
As you can imagine I didn't feel very festive about the prospect.

I made a appointment to have the bloods repeated the next day with the same nurse, and I made a complaint to the practice manager.I secured a reassurance from her that the blood sample would in future be sent by registered post for next day delivery. It seems that it costs extra to send, and because no one was authorised to pay it was just put in the normal post by the staff.
I was shocked and astounded!!

I just hope that some poor child doesn't come down an Christmas morning to find, instead of a present from Santa, a plain brown box addressed to Harefields immunology with a second class stamp on!!         

The blood arrived on the Friday and it was bad news.
As I suspected the levels were below the recommended minimum to prevent organ rejection!!
Thanks to the swift attention of the staff at the transplant clinic I was able to adjust the dose up to improve the levels in the blood to the therapeutic range with a daily 500mcg tablet addition. Then it was a mad rush to get a repeat prescription to order to get some more to cover the Christmas period.More bloods will be needed for levels before the year is done but I hope I can breath easy once more just in time for turkey!!

On a more positive note I had been contacted  on twitter by a lady wanting to interview someone with information about organ donation and experience of transplantation.I was happy to answer her questions about my experiences and pointed her in the direction of LLTGL and NHSBT for further information and other resources such as Donna's Dream a group campaigning for a opt-out system for organ donation as she was interested in this,due to the current debate on the subject.
She has now published her report on her blog and is encouraging people to sign the register.
This is being shared around The University of Central Lancashire in Preston and will form part of her work as a student of Journalism
I would encourage people to read it  

The lady is  Emily Childs and her blogs is "Someone had to Say It"

 

Please share it so that more people will become organ donors in the future!

So that many more people can enjoy a new life 

 

I would just like to say ✞ Happy Christmas✞ to all my readers

 

My prayers and respect go to my donor and his family 

who allowed me to celebrate this year in good health.

♥

Good Times and Support

I have been very busy over the last few weeks
I have been out to the gym twice a week for my pulmonary rehab course and am finding it great to be able to push myself again. I am finding the leg exercises are the hardest on me but am slowly making friends with the treadmill and exercise bike although I think that it will take sometime to get fitter after the inactivity since having shingles. The people on the course are great and I am enjoying getting out.
I have also been successful with another picture in the most recent competition at the camera club the subject on this occasion was Doorways and Gateways and I scored 20/20 for a picture taken looking out of Oxford Botanical gardens towards one of the Oxford colleges while two bikes were passing a typical Oxford sight I was very happy with this result and I have included the picture for you to see.

Gateway to Oxford Life

I did put another picture in but it scored less well but got a good response from the audience the judge felt that the doorway itself was not interesting enough to warrant a high mark It was of a piece of local graffiti which has since been painted over but impressed me a lot with its Oxford connection.

Alice was here

 

  Please let me know what you think?

The other thing that I did this last week week was to attend Harefield Hospital for the second meeting of the Harefield support group.I have been involved in. 

Nicola Langlands who runs Look beyond the Heart is the driving force behind the group has worked with Harefields management to organise a meeting room. With support from Harefields Nursing staff, patients who have been attending clinic appointments plus patients on the transplant wards have been able to share their experiences in a informal setting and also been able to give feedback about their transplant experiences this has allowed people at all stages of the transplant experience to ask questions of others, network and make new friends

To allow the communication to continues between meetings and as a place to share information and support online Nicola has set up a Facebook page 

Harefield Transplant and Look Beyond The Heart Focus Group

I am one of the administrators and at present the group is a open group so people can join upon request.
It will be open to all people who have contact with or experience of the UK transplant services we hope that it will grow into a valuable resource for everyone to share information and offer support to one another so please join us soon :-)

While I was at the support meeting I was able to meet a several people. two whom I have mentioned in this blog in the past.
  The first one was Justine Laymond
She was up for a clinic appointment and will soon be sailing around the world on the Clipper Around the World Race as part of a crew of people raising awareness of transplantation.
She is the first double lung transplantee to ever attempt this gruelling race.But as a multi medal wining Transplant games participant she is looking forward to the challenge.
The second person I was able to meet after following her progress for so long was Victoria Tremlett
after a four year wait I was so very happy to hear that she had got the lungs that she had so desperately waited for. She had returned to clinic as part of her follow up care and I was able to to have few words with her and wish her well with her continued recovery.

I also took opportunity to get some bloods taken and sent of to check the levels in my blood with Christmas approaching I wanted reassurance that I would not need to attend until the new year.
I had a small amount of swelling in my legs but I was happy to find out that my blood work showed improvement since the last sample had been taken. I am presently waiting for a result from my anti rejection medication levels but feel much happier to breath easy for Christmas, can't wait!!

Extra pressure on Clinic day

Had a Clinic day on Monday most of the day was positive.
I got to Harefield hospital a bit late because the wet weather caused the traffic to build up more than normal. I got my blood taken then had a appointment for a ultrasound of my kidneys prior to meeting with a new doctor in the afternoon.
My last visit the doctor had reduced my tacrolimus due to the fact that my kidney function was being affected hence the need for kidney check.I hoped that the results would be better than my last tests taken by my GP's that indicated a few abnormal levels in my blood .The last level of the tacrolimus was lower after the reduction, at 9.1 but not by much.

After the ultrasound and X- Ray was done I went to get some food and some coffee from the league of friends   before my lung Function test as I found that a drink helps, I also needed to take my morning medication.My lung function was okay, not great but,similar to my last clinic visit .I am always worried that something will cause concern for the doctors and most recently this has been my lung function tests!
I was told to come back at 13.30 and spent the dinnertime with a toasted sandwich, a tuna roll, Daily mail and a copy of Micromart magazine. I thought I might have bumped in to someone I knew but on this occasion  it was just me, by the afternoon it was all I could do to stop my self nodding of while I waited for the transplant doctor.

When I got to the appointment with the doctor he was happy with my results and informed me that my kidney function had improved, but the tacrolimus level had been 10.2 and so he wanted to reduce my dose again by 1mg a day and asked me to get a check the following week at my GPs' I was happy with this and asked him if he had any thoughts about me going swimming this is a activity I love! He said that it would be okay but not to swim in rivers or lakes as the risk with lowered immunity would be high.

I then went to my appointment with the kidney doctor this was okay but he did have some concerns he agreed that my kidneys were functioning better but he was worried about my blood pressure, was something I had noticed had been higher lately.He told me that this would put a lot of strain on my kidneys combined with the essential anti rejection.
His solution , Blood pressure tablets! I was not keen, but he has put me an a small dose and will see me in three months to review. I was concerned that there would be side affects but at present apart from a sight headache when I started them they seem okay.I am now monitoring my blood pressure daily  and will have to get a blood test at my GP's in a couple of weeks time to check my blood chemistry is not adversely affected.

So now I rattle a bit more due to more pills but as I have been given month off clinic I should be grateful :)
I hope that when I go to my GP I can discuss my need to lose weight and find out if he will help me with a prescription for a gym as a friend of mine at the same doctors was offered this fingers crossed on that

 I am just glad thanks to my donor that I am able to be thinking about swimming again something I thought I would never be able to do again :)

 

Please remember if you have not registered as a Organ Donor please do so by clicking on the heart at the top of the left  hand column of this blog 

Go to the Website   NHSBT  to find out more about transplants 

If you are interested in helping raise awareness of organ donation you can find out more at Transplant week

Results Neutral,Blood will have to flow

Transplantation is a series of ups and downs, I have heard it compared to a rollacoaster!

Today I got some good news regarding my test for gastric reflux I was told that the sensor that I had to carry for 24hours had resulted in a normal reading of PH in my oesophagus and therefore there was no need for any intervention.I breathed a sigh of relief, but maybe a bit too soon as you will see later.

The intervention that was indicated was to lose some weight and become more active! 

This was something that I had realised was a problem as I have seen my weight going up steadily since my transplant, my stays in hospital have compounded the problem. Steroids have also lead to me eating more than I would have done in the past.Losing weight was a better alternative than a possible operation that I thought I might be needing, so I counted myself lucky.


The day was good and despite the fact that I was stuck at Harefield I had a chance to meet up with some people during the day.
The first people I met were @DaisyAngel52 and her husband Dave.He has been having problems with reflux himself ,but hopefully will be getting his operation in the near future.They have been so supportive since my transplant and I wish them all the best and hope that their problems will be in the past very soon.
The second person was @ ClareLauwerys who I have been tweeting with for a while.We managed to meet up with during lunch time at the League of Friends cafe and I had a good chat with her

I hoped to leave quite early after I was given a month till my next appointment by the consultant and which was great. I had seen a surgeon about my scar before I left as a small area of it had become red and so he had prescribed some antibiotics which I had to collect from the pharmacy.
After we got the pills I got on the road quickly as there had been indications that many people might be travelling today for the Easter weekend ,as it was these reports were groundless and we got home really quick.

As we arrived in our village my phone rang and I received a voice-mail from the clinic to tell me that the consultant had requested my next appointment be made a week earlier. Only three weeks till next visit. I was disappointed but reasoned that this would not be too bad.
Then my luck changed, and not for the better. I got another phone call from the Nurse in clinic who told me that one of my blood results had shown problems they needed a repeat blood test to check for CMV just what I needed. It seems that I will be visiting much sooner than I thought in five days time!!

It seems that this rollacoaster after going up for while, has  gone in to a dip again. Hold on to your hats!

Let us see were this ride takes me now?