Hello @ninimurphy

I just read your most recent post and was touched by all you have been through over the past few years. I was also touched by your attitude and the fact that you expressed gratefulness for your medical team in the way they work so well together.

As you are now experiencing heart failure and your doctor is suggesting that you be put on the transplant list, I would encourage you to join the Transplant discussion group here on Mayo Clinic Connect. There you will find the Members much like yourself. They have amazing attitudes and gratefulness for all the help they have experienced. So many of them have been transplanted and are feeling so much better now. I believe that you will find encouragement and help as you face the next step in your healing. Here is the link to those discussions, https://connect.mayoclinic.org/group/transplants/

I would also like to tag the Mentor of that group, Rosemary (@rosemarya) to this discussion. Rosemary has been double-transplanted with a new liver and kidney several years ago at Mayo Clinic. I would also like to invite JK, (@contentandwell) who also received a new liver at a hospital in the Boston area and @jodeej whose husband was recently transplanted at Mayo. They are all living (and smiling) examples of how good life can be post-transplant. I'm sure you will enjoy getting to know these courageous (and thankful) ladies.

Will you keep in touch and let me know how you are doing?

@ninimurphy, I am a liver/kidney recipient, and I can recall the moment that I found out that I would need a transplant. So, I and the other transplant folks, can understand the many thoughts and questions that consume your mind at the present moment.

I want to personally welcome you to the Transplant Discussion Group, as @hopeful33250 has suggested. If you see a topic that interests you - jump right in and ask as many questions as you want. Or know that you are welcome to begin a new discussion. If you need help with that, let Teresa om me know and we will be happy to help you with that.

You are indeed fortunate to have a cardiologist and a pulmonologist who are working together to provide you with the best care.

Whenever you are ready to talk about it, How can I best help you?

An insightful message. I was diagnosed of HoCM in February 2022. I started taking medicines like Concor, Atorva + Ecospirin, Ivabrad, Jardiance to prevent the stiffness of heart LV. The further diagnosis resulted into the prognostic significance of AL Amyloidosis Cardiac. I was diagnosed of AL Amyloidosis in July 2022 and started Dara+ VCD* ( July 2022 till May 2023) with not getting normal with the free light chains especially Lambda and the treatment regimen got changed to Dara+ VPD ( June 2023 till November 2023 ) with no changes in Lambda and owing to worsen heart health the treatment regimen again changed to Melphalan + Dexamethasone ( December 2023 till February) 2024 with bimonthly maintenance doses of Dara. My heart health has deteriorated with LVOT gradient 37 & 60 Valsava . I have no idea as the cardiac medicines with Chemo + have started affecting my kidney with 1.05 Creatinine and 47 eGFR. I am in a real soup as Haematologists and Cardiologists are not able to follow any coherent approach on deciding the treatment regimen. My heart health and haematologic health are not in sync. I am in New Delhi, India. Even Dr. Saji Kumar of Mayo, Dr. Vaishali of BU or Dr. Vechalekar of UCL ,UK are not able to provide any definite guidance. I am sad to experience the casual approach of Doctors across the borders in appreciating the severity of the disease and be humane towards providing support and proactive guidance .
chandra@2023
Prof.( Dr) Satish Chandra
Facilitator of Amyloidosis Support Group of India ( ASGI) ,New Delhi India 🇮🇳