Interview with Susan on living with Liver AVMs
We have been very lucky to have the opportunity to talk to Susan , an HHT patient who lives with the challenges of Liver VMs daily.
1. Susan, at what age were you diagnosed with HHT? I was 55 years old.
2. Was the diagnosis of HHT due to symptoms related to the liver, or did these symptoms appear later? If so, at what age?
My liver issues appear later, at the age of 66-67 years.
3. How did the presence of Liver VMs (vascular malformations) manifest? Did you have any of the following symptoms- high heart rate upon minor physical effort; heavy feeling of the right arm; heavy stomach pain after dinner; vomiting; depression; pain in the back/neck; tingling of limbs?
My symptoms were:
Shortness of Breath & increased heart rate with minor activity.
Abdominal pain and swelling.
Swelling in the legs and ankles.
Pale stool color/Diarrhea.
Fatigue.
Nausea or vomiting.
4. Did you get the impression that the affected Liver made nosebleeds (or digestive bleeding) worse?
No, because I was already having very heavy nosebleeds as well as digestive bleeding every few weeks at the stage of diagnosis of liver AVMs.
5. What support have you received from experienced HHT physicians (diagnosis, treatment indications, surveillance, support in major decisions, other)?
Very little, as most of my physicians know very little of HHT.
6. What treatments, if any, have been beneficial for the liver condition? (name the type of treatment, including any complications, the effects in the short & long term)
In 2013 I had a liver transplant due to the large amount of AVMs and at that stage there was no other option. In the last 3 years new AVMs have developed on my esophagus and intestines, but thankfully I been able to access Avastin, which helped me greatly. I get this treatment in Letterkenny University Hospital under Dr Vikrant Parihar, Consultant Gastroenterologist.
7. Were you ever offered supplementation of Vitamin B12, Vitamin D and/or Calcium in the treatment of your Liver HHT?
No.
8. What impact has HHT of the liver had on your personal life: family, relationships, work, physical activity, psychological effect?
It has been very hard on myself and my family being so sick and limited in my everyday life. I’ve gone from being the main carer of my family to being the one being cared for, by my family. Also the uncountable trips to A&E and overnight stays in hospital (on weekly and sometimes daily basis) – due to my AVMs bleeding and needing blood transfusions. My mood suffered also because of this. I was unable to work and also some of my family gave up work to become my full time carer. Also, other members of my family changed their working hours to help look after me and this also had a impact on their own family and social lives. But thankfully I am doing much better now.
9. Based on your experience, what advice do you think is most important to give to other people (usually women!) with your condition?
I think it is very important that if you have any symptoms then get tested and if you know you or a family member has HHT, It’s important to stay in contact with your nearest HHT Centre or support group. Also, do as much research that you or you family can do. It will help you to build your own understanding and knowledge of HHT as still very few GPs/Drs have a good knowledge and understanding of the condition.
Thank you Susan for taking the time today to talk to us about your experience of living with HHT in the Liver.
