Donnell so sorry to hear that. Your not the only one though, i also had to quit my job and now dependent from my husband. Im fighting with anxiety and depression due from physical restraints and pains. Wish all the best for you!
1 Like
Hi Hanna,
Hope you donāt mind, but I thought iād give an update on my appointment last Thursday. Dr Shovlin was brilliant, she really explained things and put my mind at ease, so to speak. So, I need to have the embolisation done, which they are hoping to do around the end of May (Scary)She said that the weird symptoms iām getting - neck/leg could be down to the AVM and low Sat levels. My Sat levels were at 85. so it is all sounding positive at the moment, I just need to try and stay positive, which for me is difficultā¦iām a real worrier. Ah at least I have some answers. Take it easy M x
1 Like
Thank you very much from this information. Great to hear that you have met a good doctor and got some answers. I wonder was the case that your saturation was near 100 when measured normally from finger but it was low measured some other way? I heard such thing is possible in HHT.
1 Like
Hi Hanna,
My sat levels were tested from the finger:
10 mins led down
10 mins stood up
Pulse was lower, sat levels slightly higher at 90 led down
Pulse higher and sat levels lower when stood up.
They also did other breathing tests that showed much the same.
The doc said that in patients with HHT and PAVM the body has adapted over time so as to allow us to breathe relatively ānormallyā as anyone else with sat levels around 87 and under would possibly have to be on oxygen to help them breathe. Even though my levels are low I can still exercise (running and Yoga) and the doctor encouraged me to carry on doing so. She is quite sure that once iāve had the operation my breathing will be far better and that I will be up and running again within about 2 weeks (perhaps I might just run that marathon soon!!!) M x
1 Like
I was in competetive sports training 5 times a week plus all weekends with saturation of 72. But i did loose my hair, my skin was in terrible condition, had weird swelling in my face and ankles and couldnt focus, had this,weird cloudy feelinf in my head. After lobectomy it took two years to recover but after that it was time of my life. Im sure that lpbectomies and coilings do make us feel better.
1 Like
Hanna,
Hi! Just wondered how you were doing. I was chatting with the moderators yesterday and we were talking about you. I hope you are doing OK.
Lots of love,
Richard
Just a BIG PRAYER for all of you here!!!
Lisa