Hi Pat,

Glad that you have now been able to accept the likelihood of a SCT. We are both in the same boat as it were. I too have increased protein leakage with my Light Chain Deposition Disease. The NAC calculated 3.5g. My potential treatment of HDT & SCT is fast approaching, w/c 11Aug. I managed to negotiate a postponement for the whole of July,…[Read more]

Hi Rebecca,

I am smiling at the thought of 150 Primani Pants in all their glory !! Only a fellow girly would do that…….LOL

Once again how nice to hear from someone who says it IS doable and that you have had a positive result. As for the ice, I’d would probably be the one sucking on it for over 20mins. During and after my rather lengthy i…[Read more]

Hi,

Megan- thank you, I too am currently in receipt of ESA, and have been since my initial diagnosis of CKD since last June> as its contribution based they have pretty much left me alone, but I guess it will all change in Sept when it runs out, as they will have paid the max of 365 days. As for the SCT its good to hear, as Eve has said that its…[Read more]

Hi Eve,

Thank you for your thoughtful and sensitive post which gave me some much needed comfort. I am also sorry to hear about your husbands difficult journey…….

Sorry I haven’t replied sooner. We are all getting to grips with the enormity of the decision ahead. Also beginning to worry about finances. I plucked up the courage to ring M…[Read more]

Thankyou so much Eve for even replying. I do not feel quite so isolated asI did when I originally posted. However, I did mention to the consultant at the NAC yesterday, that no one had replied to my post….

I do now  have some more info and clarity regarding my diagnosis after my visit. After a highly organised and busy couple of days, a SAP Sca…[Read more]