Matthew came home from the hospital on a Wednesday, so Wednesday became “check-up day”. With the first week at home being a “no go zone” for visitors, the first trip back to the hospital was Matthew’s first excursion post transplant, and he loved the idea of seeing people again. I jokingly asked him what we were. Aliens?
One of the key parts of check up day is always the blood tests, which are done at 08:00 in Matthew’s case. It is amazing how important it is to keep to a routine so that the doctors can compare the blood tests against the baseline they have from before he left hospital. The key blood tests he has are the level of the anti-rejection medication in his blood, a full blood count and of course a U&E to check kidney function. The kidneys and many other functions in the body can easily be damaged by the medication if this is not checked and controlled regularly.
To avoid the traffic, which I detest driving in, we do the 06:15 drive from home for each appointment. For the first couple of weeks while Matthew was still really battling to walk we delivered him to the Trauma entrance. Matthew felt like he was back at his second home – he sometimes even calls Busamed Gateway Private Hospital “my hospital”!
At our first weekly check-up, standing at the sliding doors was Cindy, togged up with a white coat and stethoscope – and pleased as punch to see him! Cindy took Matthew off to the clinic to do an ECG and a few other clinical checks. Matthew was put on the scale and it was found that he had lost 12 kg post transplant! His SATS were 100% on normal room air – we had never seen that before. Then at 07:50 the sister came to prepare to take bloods at 08:00.
After each clinic check up, it is up the elevator to see his cardiologist, Dr Asherson. First up is an echocardiogram to check on the functioning of Matthew’s heart and then it is onto the examination bed for a clinical check up. It is amazing to see Matthew’s heart, a normal size, beating in perfect rhythm and the valves working perfectly. The only thing Matthew has said he misses is the fun he used to have watching new doctors listening to his chest with a stethoscope. The doctor would listen, and then you would see their expression change to “WHAT?”. After seeing the cardiologist, it is off to the Press Club restaurant in the hospital for Matthew’s new found passion – iced coffee! I drank copious amounts of these whilst sitting in the comfort room waiting to visit him post transplant.
Then of course comes Matthew’s favourite part of any hospital visit – a chance to visit and chat with everyone he knows. He always wants to know if Cindy is around and he goes back to visit all the people who cared for him in SICU – and anyone he can find along the way! He often comments that people must think he is contagious as often they move out of his way. He is after all masked whenever he goes to the hospital!
I must admit that each hospital visit brings with it a combination of joy and anxiety. Joy to see how chuffed everyone is with his progress, but my heart is often in my throat as we wait for the blood tests to tell us that things are still in order at a blood level. We now have to rely on Matthew to let us know if he feels different or strange or ill, because he looks so well. Previously, I would pick up that he wasn’t well before he even mentioned feeling ill, simply by the look of him.
It has been during these visits to and from the hospital for checkups that I again realise what an integral part of this experience Matthew’s transplant coordinator was and is. Cindy has been an encyclopaedia of information for us, she has encouraged Matthew to no end, told him what to look out for, and often calmed the nerves and explained blood results and how to improve them. One thing that has never wavered has been the doctors’ pleasure at seeing how well Matthew is doing and how well his heart and lungs look and sound.
At a recent check up, Matthew was found to be slightly alkalitic and Cindy said that he should just put some lemon in his water. Transplants recipients drink a lot of water! Now Matthew does not do acidic in any form! So to make this easier on him, I solved this by telling him he had to drink a can of dry lemon (which he knows I love) twice a week. Matthew could have won an Oscar for his performance of disgust at the taste of the dry lemon! We should film his facial expressions – as they are priceless!
What started out as weekly checkups, have now become every two weeks. The time between checkups will continue to lengthen as Matthew’s blood results remain stable or improve and any medication changes are effected successfully, without too many side effects.
I am still often overcome with emotion as I think about what has transpired over the last couple of months. Last year was an exceptionally difficult one as we watched Matthew weaken, almost on a weekly basis. Then as we knew time was running out for him, he received this incredible gift. It is time to look to the future with expectation …