Wednesday, 27 February 2013

emails exchanged with Lung Clinic Specialist Nurse

D emailed Rachael to let her know that a date has been arranged for Dr R and Dr B to come and visit Rachael to discuss her care. 
D suggested that Rachael prepares some questions for the doctors prior to their visit. 
D will not be able to come on that day but DG will accompany the doctors.
D asked about Rachael's meeting with the Macmillan team and whether Rachael had asked about what hospice provision is available in her area or has she already considered this option and decided not to investigate it any further. 
Rachael replied that the date that has been arranged for the doctors to visit will be suitable for her.
Rachael then went on to say that the Macmillan team did not stay long enough and that she still wants to ask that question.
D replied that she will speak to the Macmillan Nurses to try and sort something out.

Tuesday, 26 February 2013

email from Occupatiional Therapist

D emailed to let Rachael know that she will be moving office and her email will change from 1st April 2013. Both email addresses are in use at present but only the new one will work after the 1st April.

Monday, 25 February 2013

Visit from GP

Dr G came to visit Rachael to see if she could help as Rachael has been feeling hot and puffy for the last few days after taking her drugs. Dr G has prescribed Cetrizine, an antihistamine, to see if that improves things.

Friday, 22 February 2013

email from Senior Physiotherapist at Wy Hospital

Rachael received an email from DG to arrange a time to visit her to trial the new Cough Assist machine. An appointment was arranged for next week.
DG then said that he will send out the Lorazepam and the Mucodyne in a taxi so that Rachael can take it from this evening. He will bring the nebuliser and saline out for Rachael to trial when he comes to visit.

Thursday, 21 February 2013

Letter from Dr E

Rachael received a follow up letter from Dr E after her attendance at his clinic on the previous day. He referred to the difficulties that Rachael has been having with her breathing over the last few weeks. He also mentioned Rachael's daughter's awareness of Rachael's current condition.
Dr E then said that Rachael seems more comfortable with the new setting on the NIV machine, the humidification and the increased support that she is having.
He then listed Rachael's medications. She continues to take Riluzole, Pregabalin and Baclofen. She has found benefit from Mucodyne. She takes Lorazepam as required and 5 to 10mls Oramorph per day. She also takes an iron supplement.
Dr E then wrote about the discussion he and Rachael had had about the practical implications of moving to invasive ventilation. At the moment Rachael is waiting for a date when someone from Wy Hospital will visit her to discuss this with her. Dr E said that Rachael would like to consider this option as her life is still fun. He said that Rachael knows that he is not particularly an advocate of invasive ventilation in MND but he sees that his role is to give Rachael the options so that she can decide. He is happy to help her with this along with his colleagues from Wy Hospital.
Dr E said that they had touched on the complexities of invasive ventilation during their discussion. Rachael had said that she was quite concerned about comments that she has heard regarding the risk of dementia in patients on long term ventilation. Dr E understands that this does not happen in every individual but he was not able to give her any hard facts at this point. He explained that as communication becomes more difficult in people living with MND it is often very difficult to see whether people have cognitive impairments. He has no concerns about Rachael's cognition now.
Dr E finished the letter by saying that Rachael wishes to be fully involved in the discussions and said that only if she was no longer able to communicate decisions about her care should be deferred to Dr E and Dr B.

Wednesday, 20 February 2013

Appointment at Clinic at SR Hospital

Rachael attended her appointment at Dr E's clinic. Rachael discussed what has been happening over the last few weeks with Dr E and S, the MND Nurse. Dr E and S read through Rachael's medical notes. Dr E discussed tracheostomy with Rachael. We also talked about quality of life. Rachael said that her quality of life was still fun. 
Dr E arranged for Rachael to be weighed. S sorted out a room so that Rachael could use her bipap and rehydrate. Both Dr E and S were in awe of Rachael's new MegaBee.
Another appointment was arranged for three month's time.
Rachael then spoke to C the dietitian. Rachael told C that she has changed her feed but she is still feeling hungry. Her new feed is called Nutrison Energy Multi Fibre. The dietitian asked whether Rachael had changed the time of her feed. Rachael told her that she still has her feed at night and sometimes during the day when she is not using her NIV. C suggested that Rachael may be able to use a bolus feed and top up with the Nutrison feed or other high calorie drinks. C said that she will contact Rachael's local dietitian. Rachael's weight was 55.4kg.

Friday, 15 February 2013

email from Dietitian

Rachael received an email from C with an email address that Rachael can use at any time to contact her.

Thursday, 14 February 2013

email from Senior Physiotherapist

DG emailed Rachael to say that he has heard from D that Rachael is still having difficulty with her Cough Assist machine and ventilator.  He is hoping to come and see Rachael next week or the week after to trial a new Cough Assist machine with her. Hopefully this will be easier for her PAs to use. He is awaiting delivery of the new machines, known as the NIPPY Clearway. As soon as they arrive he will email Rachael to arrange a visit.

email from Senior Physiotherapist

Rachael received an email from DG, the Senior Physiotherapist at Wy Hospital. DG said that he was pleased that the humidifier had improved Rachael's experience with the NIV. He has collected a nebuliser for Rachael and he has picked up a prescription from Dr C. He will collect the medications from the hospital and deliver them to Rachael when he visits her next week.

Wednesday, 13 February 2013

email from Lung Clinic Specialist Nurse

Rachael received a follow up email from D. She is going to refax the referral to the Macmillan team and telephone them to make sure that they act on it.
D then said that DG, the Senior Physio from the Lung Clinic, would like to come out to do some cough training with Rachael's PAs. He is going to bring a different machine, the Clearway, which is simple to use and may make it easier for the PAs to use on a regular basis.
DG has also suggested applying for a nebuliser kit for Rachael to use which may help loosen secretions. 
D is going to send a humidification kit, with instructions, to Rachael, to be used with her ventilator. It is easy to use and may help.
D went on to say that she will confirm the Mucodyne dose and any alternatives as soon as possible. She has also arranged for a Consultant, Dr C, to visit Rachael with her, to discuss tracheostomy and other end of life issues.
D will investigate the support that is available for Rachael's daughter and she will contact S the Specialist MND Nurse at SR Hospital with regard to making sure that Rachael's PAs know who to contact and when.
D finished by saying that Rachael should contact her if she needs anything. She will be on leave next week and DG will be the person to contact until she returns.

Tuesday, 12 February 2013

visit from Lung Clinic Specialist Nurse

D visited Rachael to discuss with her some options to help with the breathing difficulties that Rachael has been having recently. 
Rachael also wanted to discuss her Mucodyne dose and the problems that she is having with her bed. She would also like to contact the Macmillan team.
D adjusted the pressure on Rachael's bipap because her throat was closing due to the pressure being too low.
D talked about some end of life issues with Rachael. She will arrange for a Consultant to visit with her to talk to Rachael about a tracheostomy, however she said that the clinic has never provided an MND patient with an elective tracheostomy before.
Rachael also asked D for  some information for her PAs so that they know who to contact and when.

email from Palliative Care Clinical Nurse Specialist

C (Macmillan nurse) emailed Rachael to arrange an appointment to visit her as she has received a referral from Rachael's GP, Dr G.

Friday, 8 February 2013

visit from Dietitian

Rachael has been finding it difficult to have her feed and bipap at the same time. Rachael was worried because she wasn't getting much feed, averaging 250ml over a twenty four hour period.
The dietitian came to discuss Rachael's options. One suggestion was a bolus method in which Rachael would have 100ml of feed in ten minutes. This raised concerns as Rachael gets stomach problems if the rate is more than 95ml per hour on her feed pump.
In the end Rachael agreed to a more concentrated, high energy feed that will fulfil her nutritional requirements in less time. The dietitian will arrange with Nutricia to deliver this as soon as possible.
The dietitian advised Rachael to carry on as she was over the weekend, with increased water flushes, fitting in as much feed as the use of the bipap will allow. 
The dietitian also said that she will contact the speech therapist about the problems that Rachael is experiencing with her mucus and her Mucodyne prescription.
Rachael was also advised to telephone her GP if her diarrhoea continues, to see if he can prescribe some medication for this.
The dietitian will phone Rachael next week.

Wednesday, 6 February 2013

visit from District Nurse

The District Nurse visited Rachael regarding the problems that Rachael is having with her bed. The bed that Rachael has at the moment does not give her enough support, and this affects her breathing. 
The District Nurse is going to contact an Occupational Therapist about the bed. She has also ordered an airflow mattress for Rachael to try.

Monday, 4 February 2013

visit from Specialist Lung Clinic Nurse

D and a physiotherapist from Wy Hospital visited Rachael. The physiotherapist spoke to Rachael about the use of Mucodyne, he told her that it would be ten to fourteen days before it begins to have an effect.
He then discussed Rachael's use of the Cough Assist machine, he suggested that the pressure should be increased. This was then tested on Rachael and a setting of 29cm H²O was recommended. This can be increased to 32/33 if Rachael requires it, but if it exceeds this the physiotherapist should be contacted and he will come to see Rachael before the pressure is increased any more. He also suggested varying the routine and using two sequences rather than three.
Rachael was feeling very unwell when D arrived. D said that this was probably due to a combination of the effects of the Oramorph and the lack of use of the NIV. She said that Rachael should take half the dose of Oramorph until she becomes used to it.
D also adjusted the NIV so that it breathed in sequence with Rachael's natural breathing cycle. This was a great improvement for Rachael as she felt she no longer had to fight the machine.
D then gave Rachael a second NIV machine which has an internal battery so that she can take it out of the house and use it without needing a power supply.
D said that she will visit Rachael again next week with another NIV machine that will fit on the back of her wheelchair and also has an in car adaptor. At the same time she will discuss the later stages of MND with Rachael.