I’m physically frail but a spiritual warrior.

The last few weeks have involved lots of me gritting my teeth.

I eventually stopped throwing up every evening but I was still spiking a temp. Sometimes it would go up to 37.9 but never over the magic 38 which is an automatic trip to hospital.

I’ve been really struggling to eat and drink and of course that in turn has made me feel extremely weak and fragile.

In the end I felt so awful I contacted the hospital. I went in for a review to the day unit. They were their usual brilliant selves. My long suffering partner managed to walk into a lamp post after dropping me at the main entrance. She phoned to tell me this and my lovely nurses said for her to come to the Unit and they would sort her out. They cleaned and dressed the wound and even got a dr to assess her. What a brilliant service. They are worth their weight in gold. She is now the proud owner of several steri-strips and a bit of a black eye. What an eejit! Lol.

Getting back to me, the bloods showed the infection and inflammation markers were coming down. Sadly my HB was also falling. The doctor thought I had reacted to the antibiotics and that made me feel bad on top of whatever virus I had. She wanted to see me again in a week.

Since I saw the doctor my temp has settled and I no longer have been having those spikes. I’m drinking better and have slowly increased my food intake. It’s still not back to normal yet but better than it was. I guess the dietician will have something to say in clinic this week.

One of the things that has persisted is very itchy skin. It drives me to distraction. If I dare scratch it, it makes it 10 times worse. I’m sure having to wear all these extra layers to keep warm isn’t helping. I’ve been given a tablet but it’s not helping. I wonder what on Earth is causing that.

I need to concentrate on getting my strength up because I’m as weak as a kitten. I also need to work on increasing my food intake. I’m working on the little and often method just now. That seems to be helping. It’s such a weird feeling when nothing tastes right and you just don’t fancy dinners. I still struggle to find drinks I like the taste of too. I’m very pleased I can drink water again but I can’t take my tablets with that because I can taste them. Every morning and evening is a real struggle to swallow a plateful of medication. I so can’t wait to reduce all this medication. I’m sure that will help with the nausea.

Before I had the transplant I was thinking about all the things I’d be able to do once I recovered from the transplant and got back to normal. Now I’m 16 months post transplant I’m wondering if I will ever feel normal again. It seems to be dragging on and on and on.

I guess the important thing is that I don’t lose hope and I keep going. I’m sure at some point things will change. In the meantime I have to be patient and just keep putting one foot in front of the other.

Thank you to all of you who are in my corner and who offer me words comfort and support. It means a lot and makes a difference. I may Be physically frail but I am a spiritual warrior. I might not be able to do loads but I can still listen and I can pray and I can hold hands and I have an endless supply of hugs. As you think of me, do let me know if I can do anything for you.

Saved by the NHS again...

Hi Everyone,

Isn’t it wonderful that the days are getting longer? 

I’ve had a very strange week. Since my last post I’ve spent 5 days in hospital. It all started at 3am on Sunday night. I woke up with an awful headache and even though I know I shouldn’t take anti-inflammatory drugs, I took some Ibuprofen. At 6.30am I was desperate enough to take one of my partners migraine tablets. 2 hours later I took another. I felt dreadful. My head was pounding and I also felt like I had a vice around my chest. The pain was really intense and went into my shoulder and up into my jaw. It was made worse by breathing in. 

Of course when my partner rang my haematology team for some advice, they said we had to ring an ambulance. We did this even though I objected and said it wasn’t necessary. When the paramedics arrived, they were a lovely team. They did an ECG and,  as I thought, discovered I wasn’t having a heart attack. My BP was sky high though at 185/95. I’m usually a 90/60 person but it’s been creeping up because of the ciclosporine and steroids I take. A couple of weeks ago I was started on some low dose blood pressure medication but obviously the pain I was in was pushing it up again. 

The paramedics said I needed to be seen and they would take me to the local hospital. I said I’d rather go to the team that looked after me and would go with my partner to Kings in the car. 

The wonderful paramedics phoned Kings and spoke to my team and said they were happy for me to travel in the car as long as Kings were happy too. So that’s what I did. 

When I arrived I was told I would need to be admitted. Fortunately I was taken back to the ward where I had my transplant. The fantastic staff on Davidson Ward made me really welcome. Sadly I was feeling so crap I couldn’t talk to them properly. My head was still burning and pounding and my shoulder and chest still hurt. Also my tinnitus was going wild in my ears. 

Again in the middle of the night I got worse and I started to throw up. The staff had to give me IV anti-sickness to give me some relief. By the next morning I began to feel human again. I saw the amazing Austin. He is a wonderful doctor but doesn’t do the post transplant clinic so I don’t see him so often these days. He told me that my infection and inflammation markers were high. He arranged a chest and shoulder xray and a CT scan. He also started some high dose IV antibiotics. They make you feel really sick but are a necessary evil. 

The CT scan showed some damage from the recent virus I’d had and signs of active virus. The shoulder scan just showed arthritis but they wanted to do an MRI in case anything had been missed. 

Austin also wanted a rheumatology opinion on what could be going on. Fortunately I had an outpatients app booked for Friday any way. 

During the course of the week my HB was dropping like a stone even though I’d only had a blood transfusion a couple of days before I came in. In the end I had to have another blood transfusion. 

I saw the rheumatologist, who was a new consultant to me, hailing from Limerick. He was quiet and thoughtful and very thorough. So often doctors are stuck in their own specialism and think that’s the world. What impressed me about this man was that he said he would liaise with Austin as he didn’t want to put me through unnecessary tests. How refreshing is that? He said he thought it might be worth doing a PET scan and some specialist blood tests. He also said there was a lot of inflammation going on and def something autoimmune. He wasn’t clear what it was but was willing and happy to work with Austin to see if they could put together the pieces of the puzzle. I was really pleased by this response. 

Back on the ward the lovely Ionna was waiting for me. She is Austin’s junior doctor and comes from Greece. Thank goodness for our EU workers. She was very apologetic but said she had to do another bone marrow biopsy. She said not to worry as she had a lot of local anaesthetic with her. We both laughed. I said to her that one day we would say “how barbaric” about the way we take bone marrow samples. She agreed and said she hated doing them as she knew how much they hurt. 

Despite giving me lots of local, the biopsy was really hurting, lots more than normal. Ionna was great she kept putting in more local and giving it time to work. I said “don’t worry I’ll just grit my teeth as I’m used to it” She was horrified at this suggestion. She said maybe because there was so much inflammation in my body was the reason for the extra pain. Eventually she got the right spot and got her sample. It bled lots and has been extra painful over these last 24 hours. I’m sure it will calm down. 

That same day I also saw an oral medicine specialist to advise on the sores in my mouth and the exceptionally dry lips. I saw 2 doctors in that department and they both gave me the same advice so I’m hoping that will help. 

The final test was another lung function test to see if the damage to my lungs had gotten any worse and if it could be reversed in any way. 

I’m now happily back home and having a duvet day. I’m back to the haematology clinic on Tues but have a gut CT booked on Monday. I then have ECP Weds and Thurs. Finally a pre op assessment for my ingrowing tie nail which is a complication of the transplant on Friday. 

I have extra antibiotics to take for a week and the medics will reassess what to do next once some of the results are in.  

Wow what a lot of attention from the NHS which was working at its finest. Thank you so much to all the fantastic nurses and doctors and support staff who helped get me back on my feet. You deserve far more recognition than this blog can give you. 

If you see good practice people, please do say so. We are often so quick to complain and more reticent to compliment. Our NHS and it’s embattled workers need our support at this time. They do such an amazing job under such difficult circumstances. Let’s big them up. 3 cheers for the NHS and thank you. 

You are one in a million.