Jimmy's Multiple Myeloma Journey: October 2015

2015/10/30

Friday, 30th October

And just like that there was a turn for the worst....

So much for Jimmy feeling so much better on Wednesday. On Thursday morning he woke up saying he was feeling even worse. I took his temperature and it was 38. Prior to remission he had to be taken straight to high care if his temperature reached 37 so I wasn't too sure of what to do. I phoned Sister Olivia at the chemo clinic to ask for her advice and she said she would speak to his Dr (at UCTPAH) and Prof Novitzky and come back to me.

We had to go through to the chemo clinic for a 2:30pm appointment so he could be assessed and advised what to do. By the time we got to the car park Jimmy was too weak to walk so he went in, in a wheelchair. His temperature was just under 40 degrees and his blood pressure was 87/50. They admitted him straight into high care and did chest x-rays and took some bloods. Prof was going to see him later and his diagnoses was a suspected pneumonia.

By 8:30pm we still didn't have x-ray results back or the blood results but Prof had been to see him. He was put on a drip as well as antibiotics to bring his temp down which was still high and put on adrenaline to try and bring his blood pressure up which was dangerously low.

This morning at 3am the sister from high care phoned to tell me that they had moved Jimmy to ICU because his temp had gone up further, blood pressure was still dropping and he was having difficulty breathing. Prof was with him and he saw Jimmy again before 8am this morning and later in the morning again.

I was shocked to see what Jimmy looked like when I got to ICU. He was not in a good space. His platelets were 16, white blood cell count was 0,24 and his haemoglobin was 6,5. His temperature was 40 and blood pressure still low. They ordered two blood transfusions for him and when I left the first bag was going in. They were still keeping him nil per mouth as he was having difficulty breathing and were standing by to intubate him (put a pipe down his throat to help him breath). There was a sister assigned to sit next to him all the time to monitor his vitals on the screen and take his temperature every 15 minutes. They had already put a Hickman line in his neck as his veins are stuffed from all the needles he has had over the last 18months and they had automatic blow up cuffs on his legs for circulation because his blood pressure is so low. He was absolutely exhausted but could not sleep and talking a lot and asking a lot of questions but not really making sense and mumbling to himself all the time.

At 13:30pm the doctor in charge of ICU came to see me. He explained that the x-rays had shown up a small dark patch on Jimmy's lung/s and although there was still no actual diagnoses, as they were waiting for blood cultures, they suspect that his bronchitis infection got into his blood and caused Septicemia. He also said "that there are a couple of things going on here" but I haven't seen Prof myself yet to get a clearer picture. By this time Jimmy's temperature had come down to 37,2 and at long last he had fallen asleep. The doctor said that Jimmy is a very sick man and we were by no means out of the woods yet but he was a lot better than he had been at 3am this morning. His breathing was also holding up on his own but they are still keeping him nil per mouth until they know for 100% he won't need to be intubated.

Seeing him this morning brought back all the horrible memories of when he was fighting for his life in F4 and I have to say walking down the hospital passage and smelling the hospital food being prepared made my stomach turn. Although not a nice place for me anymore (and I am sure Jimmy too) I do know it's the best place for Jimmy to be and as always he is in very good hands. The staff at UCTPAH always go beyond the call of duty.

I phoned ICU just after 6pm to see how Jimmy is and his temperature has come down to 36,2.

A big thank you to you all for all your positive messages and prayers, its amazing how quickly the news spread. This is just another dirt road trip on our journey and we will overcome this one too.

2015/10/28

Wednesday, 28th October

Just a quick update as I have had a few calls from concerned colleagues...

Jimmy has had a chesty cough on and off for the last month and on Monday he went to the doctor. He has bronchitis and also had chest x-rays done on Tuesday but these are clear so no pneumonia.

He is feeling a little better today after being man down since Sunday evening with no energy and should be back at work tomorrow. It is good to know that his body is strong enough to fight the onset on pneumonia.

2015/10/24

Saturday 24th October

Amazing how this blog was such a part of my daily life for a long while and now I find myself having to re-read the last blog to get the mind ticking.

So....it's been a month since I last updated. Jimmy and I went to see Prof Novitzky on the 5th of October for his follow up appointment where we were also getting the results of his latest bone marrow biopsy. I cannot tell you how nervous I was about these results and of course they were due 2 days before my Mom and I left for Europe. But the news was good. Jimmy's cancer burden is still somewhere under 5% which is classed as remission. Prof was also able to confirm again that Jimmy's body is definitely still producing platelets which was also very good to hear. We discussed at length the removal of Jimmy's spleen too. We have decided to sit this procedure out as long as possible until all avenues have been exhausted. Prof explained that there is 95% success rate when having a Splenectomy. The spleen is our largest auto-immune organ in our body and once it is removed the bone marrow automatically produces more platelets to make up for the fact that there is no spleen. Not having a spleen is alright for you and me, it is quite common to have it removed after a eg a motor vehicle accident and the person can live a normal life. But Prof is concerned that we will have problems when Jimmy comes out of remission without a spleen. He will be very susceptible to infection and will have to have various vaccines on a yearly basis to help prevent contracting contagious illnesses etc. So our next step in the process has been to drop the cortisone level further to 6 tablets a day and Jimmy is now also taking Azamun 3 times a day. Jimmy has his bloods done every 2 weeks to monitor any changes in his platelets and Prof will increase/decrease the various meds accordingly.

Jimmy had his bloods taken on Friday and after 2 weeks of the reduced cortisone and the addition of Azamun his platelets have dropped further. As we have not heard from Prof with regard to any changes in medication, I am presuming he will discuss this at our next monthly appointment which I think is at the end of this month. Jimmy's white blood cell count has also dropped slightly and now sitting on the minimum of the normal range.

This is a very long, frustrating road and most of the time the process trial and error and we just have to be patient. Prof also changed his mind about Jimmy being allowed to travel to Japan on business but we have to keep counting our blessings....Jimmy is well and still in remission.

Matric prelims and dance as well as school holidays have come and gone. Loren starts writing her final matric examinations on Monday. Matric dance day was very special and Loren looked so beautiful.... I am such a proud Mom!

Just like a princess

The most dashing young men

And off they go

Dylan and Loren....special friends

Something else that has come and gone far too quickly was our trip to Europe. My Mom and I left on Wednesday the 7th and spent our first two nights in Venice. There are no just words to explain the beauty of Venice. We travelled by Allilaguna (the water taxi) from the mestre (main land) to Venice which was the most beautiful trip right up the Grande Canal...what an introduction to Venice. We stayed near Piazze De San Marco. We then spend 7 nights on the Norwegian Jade with Megan. It was fantastic to spend time with her and see where she works and meet your bosses and colleagues and her boyfriend Cosmin. We visited Dubrovnik - Croatia, Athens - Greece, Kusadasi - Turkey and Split - Croatia. We visited the Acropolis in Athens and Ephesus in Turkey...I must have taken over a thousand photos. Once back in Venice we spent another 2 days in the Cannaregio district.