Wythenshawe Hospital just called to say that I won’t be undergoing any more tests as I am not a suitable candidate for a Transplant.

The Osteoporosis in my spine is too bad to go any further.  End of the line.

Apart from the devastation I feel right now facing a life without hope, I don’t know what I can do.

I don’t have an appointment to see my Doctor here until October, so I will just have to carry on.

A life without hope.  Not a great prospect facing the rest of my life like this.

Maybe this Blog will end right here.  I don’t see what else I can add.  Maybe if you are in this situation, you could start where I have finished and tell your story.  I will certainly add Your blog link here for others to follow.

Katie was introduced to me when I first visited the Transplant Hospital in June to meet with Dr. Leonard for the first time.  She is the Co-ordinator of the patients and Transplants etc and was very busy when I came.  She was only introduced to me as I was about to leave after my Appointment.  Nice Lady.  I knew instantly yesterday when she phoned me saying she was ‘Katie from Wythenshawe Hospital’, exactly who she was.

She was asking me if I ever had the Pet Scan they talked about me having,  as there had been no results forwarded to them.  I told her when I had the scan etc and she said she would investigate for me.

I have just received a second call from her today and in less than 24 hours, she has now got the Pet Scan results in her hand.  It really makes a difference when you know you have people on your side.  I had the scan a month ago and they assured me that the Doctor should have the results in 48 hours.  They just didn’t get passed on.   In future I will let the Hospital know myself when I have had tests and they can save me a month of waiting and wondering each time.

Dr. Leonard is on holiday until 4th August and Katie told me that she would show him my results as soon as he returned.  Dr. Leonard has a Clinic the following week, so she has assured me that she will ring me to come in that week to see what will be the next stage in my testing.

Happy Days.

PET-Scanner

Another test completed successfully.      Another step closer?

I have now been for the PET Scan as prescribed.

I was told to fast for 6 hours previous to the scan.  That meant NO food or drinks for 6 full hours.  I was told to drink only water and to try to drink  4 – 5 glasses of water both before and immediately after the test.

They injected Radio Active Sugar  (tracer)  into my vein and I was told to lie down and relax for an hour to allow the injection fluid to be absorbed into my body.  Then I  lay down on the scanner bed.  The Scanner machine was much like the CT Scanner I had already had so there was no mystery in that.

I was maneuvered back and forth gently for approx 25 mins while the scanner took its appropriate pictures.  This was to examine my lungs and see the damaged caused by years of smoking.  Results should be with my Doctor within 48 hours.

After the scan was completed, I was able to go straight home.  I didn’t need to be accompanied.  I was still going to be Radio Active for approx 8 hours following the injection and was told NOT to come into contact with Pregnant Ladies or very young babies and infants.

Not a test to fear or worry about at all.  It was very relaxing and there are no side effects from this procedure.

PET stands for Positron Emission Tomography.  It is to produce images of the lungs in my case to show how they are functioning.

Hopefully now, my Doctor will send these results to the Transplant Hospital in Wythenshawe, Manchester and they will send me a further appointment to go one more step closer to being accepted for a Transplant Operation.

As always on this journey, any one of these tests may exclude me from being a Candidate for Transplant so each step is an important one.

I seem to have hit a Brick Wall on Day One from the Manchester Hospital.

I waited over an hour for my first appointment.  Couple that with the hour early I was to make sure I found the place and got there in one piece  (1 pm) and I was finally called in to see the Doctor at 3 pm.  Seemed like a long time to me.

I had a 40 minute talk with the Doctor and he explained everything I had heard from the others in the Medical  Team previously.

Then it transpired that my referring Doctor had omitted to pass on the information that I have Osteoporosis!

Now the whole process is to be held up.  Osteoporosis doesn’t bar one from having a Transplant Operation, but it will depend on the severity of the disease that I have.  Dr Leonard explained that after a Transplant Operation, the patient is given large amounts of Steroids.  This will cause the bones to become weakened.  If the Osteoporosis is too bad, then the extra weakening wouldn’t be a good thing and will surely disbar me from having a Transplant Operation.

I now have to go for a  PET SCAN.   This will give more detailed information than a CT Scan.  In layman’s terms, it was explained to me that a CT Scan can see through tissue, but the Pet Scan will not see through but highlight the bones.

Image of a typical  Positron Emission Tomography  (PET)  facility.

And so we wait!   I have no idea how much of a delay this will be although I have been told that Pet Scans are done by a Private Company rather than a Hospital and they are relatively fast.

Talk about having the Bubble Burst!  I was sooo disappointed, but I will update as soon as there’s any news.

An appointment has been made for me to see both of these Doctors 

Dr C T Leonard  and  Dr M Aloul  in their Joint Review Clinic in the Transplant Centre on:

Tuesday 10 May   at 1-45 pm

I have been reading about the Hospital and the Doctors and the Transplant procedures today in readiness.  Also, gathering as much information as I can will also empower me to ask the right questions for myself or ask for clarity on something that I later don’t understand.

Here is the link to a short  (3.44)  video presentation about Lung Transplant from the Hospital.

http://www.nhs.uk/conditions/Lung-transplant/Pages/Introduction.aspx

Another thing or consideration in all of this is that should a Transplant be made and satisfactorily, then all being well, I should be able to breathe more normally and possibly to go back to work.  I should no longer be classed a Disabled and therefore be entitled to benefits for the disabled.  That will include the Motor Car I have through the Motability Scheme to help me to get around go for Hospital appointments and for shopping etc.  ‘New life’ effects all aspects, the good and bad side.  Hey, I’ll be able to walk and even carry the shopping in the future.  YAY!!

Motability can be found here  . . . . .     http://www.motability.co.uk/main.cfm?Type=HHSW

First of all I went into Ward 37 in Arrow Park Hospital for a Full Lung Study.

This was like a spirometry test in which I had to breathe into a computerised machine doing several different breathing techniques for them to measure my Lung Capacity.   As this was so close to me seeing Dr. Corless the following day, they allowed me to take my results away with me.  I am always in awe of how much the medical staff are so helpful.

Following day I was booked into Victoria Central Hospital in Wallasey for the final session of my Pulmonary Rehabilitation course.

Then finally, a run up the motorway to Clatterbridge Hospital to see Dr. Corless for the results of the 3 main tests he had ordered.  CT Scan of the Lungs,  CT Scan of the Heart and the Lung Study.

Looking at the three results, Dr. Corless showed me my CT Scan on-screen of the Lungs.  There is a small white mass showing that Dr. Corless thought to be scar tissue.  I suffered a  Spontaneous Pneumothorax (Collapsed Lung) in 1980 and Dr. Corless thought this to be as a result of that.  He said that if I was well, he would do further tests on this, but as I wasn’t well enough, he decided to go with his gut feeling on it.  He didn’t think it was cancerous or malignant – Thank Goodness.

Taking all of this into account Dr. Corless was happy to refer me on to the Transplant Team in Manchester (50 miles away).  He told me that it would take up to three weeks for him to do the referral with the forms etc that he had to submit.  He said I should get an appointment in a couple of weeks following his referral.

The next step for me now is to see the Specialist in Manchester at Wythenshaw Hospital.  They would admit me for about 3 – 5 days for extensive testing.   This would include psychiatric tests to make sure I could handle such a major operation.  The results from those tests will determine the treatment from there.  Maybe I could have an operation to cut away the parts of my Lung(s) that are not working, maybe I could have a transplant involving One Lung, or finally, the possibility of needing Both Lungs replaced.  If I do need a Transplant, it will be at this stage that I will be added to the Transplant List to wait for a suitable Donor.

So great news for me this week.  Feel like celebrating the fact that I have overcome this hurdle and I am being referred to the next stepping stone on this amazing journey.

The following day I went back to Victoria Central Hospital (Wallasey) to be assessed for the results following the 12 sessions of the Pulmonary Rehabilitation.  That assessment was poor.  I didn’t benefit as much as I had wanted to from the course.

Senior Physiotherapist   Miss LISA MURPHY, informed me that before such a major operation, sometimes the Doctor might refer me back for more Pulmonary Rehabilitation to ensure that I am as fit as possible to face the ordeal.

Hope you stay with me?  Add your e-mail address on the left-hand side and be updated as soon as I have more news.

This is a twice weekly series of exercises in very controlled surroundings for the next six weeks.

Physiotherapists are on hand to guide the patients through a series of mild exercises.

When a patient has Pulmonary problems, COPD, Severe Asthma or Emphysema for example, then everyday activities are usually very difficult.  Things such as walking, washing and drying after bathing.  Simple housekeeping tasks etc can all result in the patient becoming very breathless.  Once the patient is at this stage, the simple tasks are too strenuous to do and so as a result, the patient tends not to do anything to make them more out of breath.  Over a long period the patient does less and less and spends more and more time becoming very inactive.

Pulmonary Rehabilitation is to teach the patient how to move and to cope better with everyday movements.  It is designed to build the patients muscles and stamina and to allow them more freedom of movement.   Taken seriously, there are dramatic improvements in the tasks we are able to do and daily exercise can only help.  It is not designed to ‘cure’ the lungs or the breathing, but to allow the patient to be able to tackle more movements and with less effort.

Today I began the first session.  My exercises were specific to me and the Physiotherapists walked me through each of them.  Three physiotherapists are on duty and there were 7  patients on today’s session.  Only three were new,  as I was.

Today’s session began with a simple warm up session for a few minutes.  We only had to do the amount we were comfortable with.  Any time it became too difficult we were at liberty to stop and rest.

The pattern was to tackle one exercise for three minutes and then to sit and rest for three minutes before moving on to the next piece of apparatus or exercise.  We are to count how many repetitive moves we do of each task and in our three minutes rest time, record the number completed on a clip board.   Over the following twelve sessions we should be able to see a gradual increase as our tolerance and stamina builds throughout the completed course.

I have eight exercises to complete each session.  They are:-

1/  Steps . . .  We have a small step placed in between parallel bars.  For three minutes I step up with one foot, join with the second foot and then step down, a foot at a time, holding on to the bars for safety and comfort/support.

2/  Arm Curls . . .  Sitting in a chair, I was given light weights in each hand.  The object was to keep the elbow close to the body and to raise alternate arms to the shoulder with the weights.

3/  Static Bike . . .  Three minutes riding a bike was sooo strenuous for me.  I was wiped out at the end of the three minutes, but I did complete the three minutes.  I just couldn’t breathe enough to even get off the bike at the end for a little time until I relaxed and regained my breathing.

4/  Winder . . .  This is a piece of apparatus which looks like the foot pedals on a bike.  It is placed on a table I used my hands on the pedals.  It is to exercise and strengthen the arms.

5/  Sit & Stand . . .   As this one says, it is simply sitting on a fairly lowish seat and then standing straight up.  To strengthen the knees and legs generally.

6/  Punches . . .  Back to the weights.  This time, still sitting down, but reaching out the arm in front alternatively in a punching motion.  Obviously to strengthen the upper body/arms.

7/  Step To . . .  Similar to the Steps, but this time just touching the step top with the toe and placing it back on the floor and then repeating with the other leg.

8/  Treadmill . . .  I actually like this one.  I have got my own Treadmill at home now, so I do enjoy this one.  There are so many settings and speeds and inclines for the Treadmill.  Today I started off slowly and on the first level.  I will build up as the sessions progress.

I haven’t disclosed any of my totals today, but I will at the end of the course let you know the starting levels and the finishing levels of all the exercises so you can see my amazing progress.  I hope it will be amazing.

These exercises are specific to each patient as to how much they can cope with.  Upon closer inspection of them, you will notice that they alternate between exercises for the upper body and exercises for the lower body.   Designed to evenly exercise you without tiring the legs or arms in following tasks.

Once the class had all completed the series of tasks, we all had a wind down session to stretch the warmed muscles.

This was followed by a drink and a biscuit and then a class on the Pulmonary features of the body, the diseases and the medical outcomes and medicines for each.  Stretched over the entire twelve sessions we will be greatly educated about what is wrong with us, why and how the Pulmonary Rehabilitation is helping.   Also we are expected to repeat these simple exercises as much as we can in our own homes – daily – to increase their value and to improve ourselves more.

The photograph below is of my Physiotherapy Team.  They are taking me through the twelve sessions of Pulmonary Rehabilitation.

Pulmonary Rehabilitation Team

In the centre – in white – is Senior Physiotherapist   Miss LISA MURPHY

Flanking her on either side is  JANE CASSEY (left) and  WENDY FRANKS (right) Physiotherapy Assistants.

21 December was the day I went to the Hospital for my  Echocardiagraph.

An   Echocardiagraph is a Heart Scan (cardiac ECHO) with sonar equipment similar to that used to monitor an unborn fetus in pregnancy.  You can see the results live on a TV monitor.

The testing itself took a little less than 15 minutes and that concluded the two tests Dr. Corless had ordered.

Now the only thing to do is to wait for 2 months before my next appointment with him.

I asked the nurse doing the Heart Scan how long it would take to get the results to the Doctors Office and she informed me that they would be there in about two days!

Nothing for it then, but to try for an earlier appointment than the end of February.   This next two months is just dead time, so I will contact the Hospital and ask to be placed on their Cancellation list for an immediate appointment on the day someone cancels.

My Community Matron also told me that she would be trying to get an appointment sooner as well.  I am really pleased with her, and how she kept in touch all over the Christmas period by phone to check on me.

Two rides to the Hospital in an Ambulance and today in a taxi, but no more free of pain than the last two visits.

Arrowe Park Hospital

At least it was Mission Accomplished today.  I had the CT Scan I had been waiting for.

Lying in bed this morning and trying to get up, it took me 45 minutes to get out of bed.  That was after much preliminary movements to try to  ‘loosen’  the pain and  ‘loosen’  the spine  somewhat.  Using my arms and hands for leverage, I managed to get up without using the painful muscles in my torso/back/spine to take the weight.

When my name was called today I couldn’t walk the few steps from the waiting room to the Scan room.  (Approximately 25 – 30 steps in all).  The nurse saw my difficulty and shouted for a wheelchair.  Once in the Scan Room, they gave me Oxygen to help with the breathing, thus reducing the heavy breathing caused by the exertion and the excessive pains in my back.  Vicious Circle!

The nurses were very concerned with the state of my health today and told me that maybe I should report in to A & E to let a Doctor check me out.  I really was worse for wear and could barely walk,  certainly couldn’t straighten up and was in tears with the pains in my back on moving.

The CT Scan itself was over very fast.   It only took 5 minutes and the whole of my neck and chest were X-Rayed in that little time.  Amazing technology these days.   It took 2 nurses to lift me up from the lying down position on the bed and again they were concerned by the amount of pain I was in.  One of the nurses took me to the Main Entrance in a wheelchair and ordered a taxi for me.

Once at home I continued to take the prescribed Nebulizer – 2 hourly along with my normal inhalers and the Oramorph medicine to cope with the pain.  Oramorph Medicine is a Morphine based Medicine which tends to make me drowsy.  So Yes!  I am definitely getting lots of rest.  Hopefully there will be significant improvement so that I can begin the Pulmonary Rehabilitation Course I had to postpone from last week.  Fingers crossed!  ‘-’

I began with Dr. Corless last month (October) with an X-Ray and Blood tests.  Dr. Corless told me he would order a CT Scan of my Lungs and one for my Heart before assessing those results in February.  That would be the point when,  based on the test results he had, he would refer me to the Transplant Hospital in Wythenshaw, Manchester for more extensive testing.

Today I had the first appointment for the CT Scan of the Neck and Chest.  It is really important to me right now to attend all test appointments punctually and also to try to maintain a fitness level that will not hinder my progress on this journey.  I don’t know that anyone could imagine the disappointment I felt today when instead of driving to the Hospital for the CT Scan, I rang 999 and arrived at the Hospital by Ambulance.  I was on Oxygen and in pain and barely able to breathe pain-free.

Yesterday I had a pain when breathing fast or heavy seeming to come from the base of my right lung.  The pain was concentrated in my back and was very sharp (in my back).  It was also there when I moved so I thought it could be a muscular pain instead of a lung/breathing condition.  This morning it was a constant pain and the slightest movement caused it.  I knew I needed to get medical help with this.  My own Doctor couldn’t see me for hours and I anticipated that he might send me to the Hospital for tests, so I rang the magic 999 number and had myself admitted to start the process.  I knew I wasn’t right.

I had lots of unexpected tests done today and missed out on the very one I had been waiting for.   How ironic!

Blood Pressure seemed normal,  (mine is always on the low side).

I had more Blood tests taken, in fact they took 5 vials of blood for various testing. White Blood Count verified that there wasn’t any infection in my system and the other tests were normal and fine.

I had a Chest X-Ray, the result of which was that there were no signs of infection and in fact my lungs had not deteriorated since my last X-Ray on file in 2009.

I had a good ECG test done today.  Steady heartbeat of  78  which they were pleased with.

The Doctor examined my chest and stomach and all seemed well.  Her diagnosis was one of two things that could be wrong.  Firstly she told me that the symptoms I had suggested that I could have Pleurisy.  The other option was that I have pulled a muscle.  She said it was easy to rest a muscle pulled in the leg or the arm, by immobilizing the leg or arm, but in the lungs it was more difficult to rest as it is being used constantly so would take a little longer to recover.  She prescribed pain killers that I already had and I went home.

First job at home was to ring the CT Department and reaffirm my cancellation and ask for another appointment.  I wanted to reassure them that it was a genuine reason for missing today.  They will send me one in the mail and it shouldn’t be too long away.  Relief that I won’t be penalised and put at the back of the queue for not turning up today.  The A & E Department did ring  this morning to let them know I had been brought in.

Tomorrow I was due to begin a twelve session course of Pulmonary Rehabilitation, but I have cancelled that for tomorrow and I will try to start the course later this week depending on when the pain goes.  Early night for me tonight.  Rest,  Rest,  Rest!!