Introduction

[Ildivolover]

Hello everyone,

I am new to this site so let me introduce myself I live with my husband on the outskirts of Llandudno on the North Wales coast. I am very fortunate that both my children & grandchildren live locally. We have a 2 year old cavapoo who together with our 2 year old grand-twins provide us with hours of entertainment & happy times.

My health conditions started in 2000 & have steadily increased over the years.

After suffering with cold hands, feet & aching joints for some time I was diagnosed in 2000 with Raynaud's & Scleroderma. I was fortunate to be under the care of Professor Maddison who was carrying out research with several Doctors from different countries. I was diagnosed with both localised & systemic scleroderma which was considered quite rare at the time, & the Prof wrote a medical paper about my case.

In 2004 I was diagnosed with stage 3 breast cancer, I had a mastectomy & started a 6 month course of chemotherapy. Three months into chemo I developed septicemia & spent 12 days in ICU followed by 3 months on the cancer ward receiving intensive physiotherapy.

During the later weeks of my stay in my local hospital I was diagnosed with endocarditis (a fungal growth) around my triscuspid heart valve as a result of my hickman line getting infected.

In January 2005, I was released from the local hospital & admitted to what was then known as Broadgreen Hospital, now known as The Liverpool Heart and Chest Hospital, for open-heart surgery to replace my tricuspid valve with a bovine valve. The op was successful, but the infection left me with congestive heart failure.

The SS has got steadily worse over the years, increased pain in joints, tendons, ligaments, etc... GI tract involvement (literally from top to bottom) pulmonary fibrosis & telangiectasia.

My bovine tricuspid valve was replaced in 2023 with a prosthetic valve in a keyhole operation at LHCH. A two day keyhole surgery operation, no pain whatsoever, absolutely incredible!

I feel I have been very fortunate that I have received excellent care from both my rheumatology & cardiology consultants, but rather unlucky with infections picked up along the way.

Looking forward to following this website.🙂

[cowhide]

Welcome to the group lldivolover.

Goodness me what a bad card you have been dealt, you have been through so much it puts some of our minor whinges to shame. I admire your resilience! I hope you have had a good supportive friends and family network as well as your medical team to help you through all this.

Hopefully the worst of your cardiac problems are behind you and your cancer does not return, as the scleroderma is enough for anyone to deal with.

[Ildivolover in reply to cowhide]

Thanks for your kind words, I am very fortunate to have great family & friends who are very supportive. Although, they will say I am quite stubborn as I like to be as independent as possible. As I am sure you know yourself it is very frustrating when you cannot do things like you used to be able to.

[Clangerscat]

welcome you certainly haven’t had an easy time but on a positive you live in one of the most beautiful places, real food for the soul.

[Ildivolover]

Thanks for your welcome. Llandudno is a lovely place to live & we are spoilt for scenery with coast & mountains on the door step . Although a little less rain would be good, we have days & days of it!!!

[OldTed60]

Greetings from Scotland. You certainly have had a rough journey - the cancer and infections sounded hellish additions to suffer on top of systemic sclerosis. Hopefully you won’t have any more as sounds more than enough to suffer during a lifetime. I’m glad you have received such good care though. I hope today is as bonnie down in Wales as it is here - after some very heavy downpours between intense moments of sunshine. My Raynauds has been having a party!!

[Ildivolover in reply to OldTed60]

Thanks for your kind words. I wish it was as bonnie here in North Wales, but no another grey rainy day!!! After a wet winter, I was hoping for a good spring, but so far only had a handful of nice days. This wet weather certainly plays havoc with the SS.

Enjoy your day.