Being on the transplant list has taken its toll this week again

I’m so damn tired! Mentally and Physically

Christmas is around the corner – 16 days to be exact

I’m turning 40 next month

Planning a birthday party and realizing dressing up and staying awake is going to be a big deal hits you in the guts

Making plans for Christmas is making me nervous because I already feel like its too much

Too many people and too many conversations

Do I bring my pillow?

Digesting food has become a major issue lately, I’m missing meals and feeling sick after eating. I dread eating at the moment

I’m getting more aches and pains in my chest, back and legs

Fluid is a daily thing now – instead of every few days

Salt is a major problem and I have had some new pains in the right side – Liver related

I’m missing events because I don’t have energy to attend – I missed my sons graduation this week and that was a hard call to make

While my husband and son were at the graduation, I laid in bed convincing myself it was the right choice

After feeling desperate for answers laying in bed, I stayed up that night looking up support groups.

Lung Transplant groups.

I found some and requested to join

I desperately needed to speak to people who understood the sadness, the anxiousness, the fear, the despair

Find people who know what I’m talking about and are gasping for air sitting by the telephone also

I spoke with my cardiologist on Tuesday and updated him on my cough, my deterioration

He has no answers. He was listening and sorry to hear it, but had no answers

No organ available = No transplant

He suggested I join a support group

One step ahead Doc

He told me that it was time for me to talk to some people who were in my shoes

This morning I realised I had been accepted into a Lung and Heart Transplant group in Sydney that had alot of people from the same hospital that I’m with

I typed a message as a new member into the group hoping for the best

I had nothing to loose

This is what I wrote

Hello

I’m new to the group.

Ive got pulmonary hypertension and I’ve been in right heart failure since March this year.

Many hospital admission to St Vincent’s all year.

I’m on the waiting list for double lungs.

I have been on the list since September, I didn’t get on sooner because I was so scared.

My health has declined and I feel like I’m just existing but not living.

I don’t do much. I need more naps. A shower exhausts me.

I use to be so busy and despite being on oxygen I lived a really hectic life.

Now I’m in a body that is shutting down slowly and I’m tired and aching all the time.

Is anyone waiting for double lungs? Any tips on how to survive the waiting period?

My support group gave me all sorts of answers

Gratitude hit the spots that were filled with sadness on graduation night

I was written to by people that have had a transplant and living their best lives

I received messages from other people on the waiting list that feel the same way I do

One lady has been waiting since February

One man told me he had his 2 years ago

One girl I shared a hospital room with in June recognized me and said hi which was nice

I had advice on consuming milkshakes and smoothies as a form of eating while deteriorating

Low salt diet is a must as another told me

The need to stay active was highlighted by a few

One told me he was in a hospital bed for 2 months before his organs came

I was told declines are out of nowhere and rapid, so I realise that at the moment I have the signs for another dip in health

I was also informed about a zoom session thats taking place on Friday where people on the list or no longer on the list meet up and chat once a week

I found my people

I found my tribe

Its a reminder, no matter what you’re going through, there are others out there. You are not alone

Find your people

Until next time x