email from Lung Clinic Specialist Nurse

D emailed Rachael to say that she has faxed a prescription for the salbutamol nebuliser to Rachael's GP. 

D has also asked Rachael's GP to prescribe a low dose citralopam, an antidepressant. D thinks that Rachael should consider taking this because it will help to manage the underlying low level anxiety that she thinks Rachael has. She has discussed this with Dr B who agrees that it may help Rachael.

D explained that chronic illness can lead to a debilitation of natural chemicals in the brain which can make it difficult to cope with anxiety.

D said that she will leave the decision about taking this medication to Rachael. It will take a couple of weeks for Rachael to feel any effects if she does decide to use it. There should be little or no side effects with this medication.

email from Lung Clinic Specialist Nurse

D emailed Rachael to tell her that Dr B would like her to try using a salbutamol nebuliser to see if it helps with her airways and any spasm that may give the sensation of mucus plugging. Dr B would prescribe a low dose of 2.5 mgs. which would be administered in exactly the same way as the saline nebulisers were given.

D said that there is a chance that Rachael may experience mild side effects with the salbutamol. She could have mild palpitations or shaking in her hands, similar to the effects some people experience with caffeine. She said that not everyone has these side effects and that they would be temporary if they did occur.

She will fax a prescription for this to Rachael's GP.

D also asked Rachael to try and track down the name of the funding commissioner for Dr B.

email from Lung Clinic Specialist Nurse

Rachael received a follow up email from D. D has tried to get in touch with the Cystic Fibrosis nurses but they are not available yet. She will keep trying.

D has spoken to Dr C about Rachael's secretions and mucus plugging that they had discussed at their meeting. Rachael had said that she felt better after taking Lorazepam even though this does not affect the mucus. D said that mucus can cause laryngospasm and Lorazepam can reverse this as it relaxes the tracheal/laryngal muscle.

Dr C said that Rachael should not worry about taking Lorazepam as she is on a very small dose and it has positive physiological benefits. Dr C recommends that Rachael doubles the dose of Lorazepam if she needs to.

D went on to say that that Dr R is not in work this week but she will speak to him about the Riluzole when he comes back.

email from Palliative Care Nurse

C emailed Rachael to ask if she had managed to arrange a visit to the Hospice.

Visit from Lung Clinic Nurse and Senior Physio

D and DG came to visit Rachael. DG brought the new cough assist machine, the NIPPY Clearway, for Rachael. DG showed Rachael and her PAs how to use the machine. DG said that the new machine will be easier for her to take out with her as it is lighter than the one she is using now. He said that he will look into the possibility of obtaining a battery for it as it only works on mains electricity at the moment.

D brought the NIPPY 3 for Rachael and three different nasal masks. She demonstrated how to use these and she advised Rachael that she would need to get used to the nasal mask gradually. Rachael can use her usual face mask or the nasal mask.

D and Rachael also discussed Rachael's drugs and their effects. D said that she will ask Dr R whether Rachael needs to continue taking Riluzole.

email from Lung Clinic Specialist Nurse

D emailed Rachael to ask her for a contact number for her social worker or whoever arranges her funding. 

D wanted to arrange a visit to bring the Nippy 3 for Rachael and to try the nasal mask for her NIV.

She also said that DG would come to do some training with the new cough assist machine, the NIPPY Clearway.

visit from Palliative Care Nurse

C came to visit Rachael. Rachael and C talked about Hospice Care. C attempted to communicate directly with Rachael using the Megabee. This was appreciated by Rachael but she found it very tiring.

C agreed to mediate with the District Nurses and to look into Hospice at Home.

visit from Dr R, Dr B and Lung Clinic Specialist Nurse

Dr B, Dr R and D visited Rachael to discuss a possible trache with her. Dr R was delayed so Dr B and D discussed Rachael's continuing breathing, coughing and swallowing difficulties. 

Dr B made some adjustments to Rachael's NIV to try to reduce the volume of air going into Rachael's stomach.
He suggested that Rachael should try a smaller nasal mask instead of the full face mask that she currently uses.

They then discussed Rachael's drugs. Dr B was happy for Rachael to continue taking 0.5mg Lorazepam PRN with at least eight hours in between each dose. He said that Rachael should back this up with use of her NIV.

When Dr R arrived he discussed in detail the pros and cons of the trache.

After lengthy discussion Dr B and Dr R agreed with Rachael that they would make further inquiries into funding and training of her staff and that this was necessary before Rachael could make an informed decision about the trache.

D said that she would come back with the new cough assist machine, the NIPPY Clearway, and she will also try out the new nasal mask with Rachael.

email from Palliative Care Nurse

C emailed Rachael to arrange an appointment for a visit.

Catheter change at Wy Hospital

Rachael attended her catheter change appointment at Wy Hospital. Stuart said that Rachael should bring her own catheter to the hospital when it is due to be changed. This can be done through Rachael's GP. The yellow catheter slid out more easily and there was less cuffing. Stuart inserted Rachael's usual catheter. He said that if there was a lot of cuffing and difficulty in removal it will be best to use the yellow ones in future.

Appointment at H Health Centre

Rachael attended her appointment at the Continence Clinic. We gave the questionnaire and the survey which we had completed at home prior to the appointment to M. We read through the questions and filled in an additional questionnaire. M queried the number of pads that we were using daily but then agreed to put us back on the system. The next delivery will be next week.

visit from Prism Medical UK

N came to see Rachael to service all the ceiling tracks and hoists. Everything was fine for another six months.

visit from Lung Clinic Senior Physiotherapist

DG visited Rachael to train her PAs on a new cough assist machine. The PAs who attended were SA, CL, ZL, RM and MB.

DG apologised because he had not been able to obtain a NIPPY Clearway cough assist machine, they are out of stock at the hospital. However, he did bring a saline nebuliser for Rachael. Hopefully this will help to loosen any mucus from Rachael's lungs before a cough assist machine is used.

DG showed all the staff how to set up the machine and they all handled the saline fitting to see how it fits together. He then demonstrated how to use it on Rachael.

When the saline dose was completed, the mask was removed and the machine was switched off. DG then demonstrated the cough assist and the suction machine.

Rachael asked DG if he could suggest anything that she could use to moisten her mouth. He said that sponges or something similar would be helpful. He said that he would contact the District Nurses to see if they could supply them. Rachael also asked DG what would be the best thing to use to moisten her lips. He told her not to use Vaseline along with the nebuliser or the NIV machine as there is a fire risk associated with this. He suggested using lip salve, E45 cream or emollient cream.

Rachael told DG about the problems she has been having after taking the Mucodyne. It makes her feel hot and puffy, emotional and scared.

DG said that he would speak to Dr C to see if there were any alternative medications available.

DG will visit Rachael when the NIPPY Clearway machine arrives in stock and he will accompany Dr R and Dr B when they visit next week.