A return visit again yesterday to the renal clinic brought more bad news I’m afraid. Hamada’s creatinine level is now at 530 (eGFR10 ish) and discussion about dialysis did not go well either. As Hamada’s arm veins are now badly damaged from these years of blood work, he will have to have a line (perm-cath) inserted into the neck for the third time, (two ‘Hickman lines before) to manage dialysis, it cannot be done any other way for him. This also can’t be done at Lincoln Hospital only at Leicester, which is a 150 mile round trip. Hamada would then stay until Dialysis is established successfully (if it can be?) then when a slot allows, transferred back to Lincoln or Boston Hospitals for the regular three times per week x four hours routine of dialysis. The big consideration is, that this routine may take some time to achieve and is not of course without danger or risk of infection or bleeding with low platelets, poor blood etc and then the Doctors say how much extra time would this give him?
Many questions and decisions to think about. The problem that has arisen is that Hamada is saying he does not want to leave his home for this perhaps long stay. Both renal consultants have not given much hope for achieving this procedure without problems arising at some stage due to Hamada’s fragile state. This leaves Hamada with a dilemma and a big decision about whether this is the time to retire from the fight and let nature takes it’s course or carry on like the warrior he has always been. I believe perhaps, this is a temporary feeling of despondency. The renal team of course wish to prepare him ready with the line prior to complete kidney failure, which they say is imminent, as it is not wise to be admitted to Leicester as an emergency and not have this surgery which takes 45 minutes and must be done as an elective surgery procedure and ready in place.
This huge immediate lowering in kidney function after four and half years treatment for Multiple Myeloma has come about very suddenly. Hamada regained function from eGFR6 to eGFR17 during the past four years from diagnosis to this time. Has only recently gained a small reduction in Para-Protein on the Multiple Myeloma side and certainly appeared to be slightly improved.
There is no doubt in my mind this sudden reduction in kidney function has been caused by the Revlimid which was started in August this year at a reduced dosage 15mg every other day but it is known to gather in the kidneys and also by the daily use of Aspirin 75mg, which is also known to affect and reduce kidney function – see: Article by Robert P Kimberly and Paul H Ploz on Aspirin-“Induced Depression Of Renal Function†in The New England Journal of Medicine. Aspirin was given to avoid DVT while on Rev.
This will be a most difficult week trying to persuaded Hamada that fighting on will be worthwhile even though the consultants do not believe it will give him much extra time, then of course it is not my decision to make and I will always respect his wishes – we shall see what this week brings. If Hamada decides against dialysis then all further treatment will stop, we will then return to care under our local Doctor and palliative care will start here at home.
Three things will last forever; faith, hope and love and the greatest of these is love. 1 Corinthians 13:13 Hugs, Alaine.
I think you’re both absolutely amazing people, courageous and dignified. You have given so many people inspiration and hope. It is hard to accept the current situation – I can’t begin to express my feelings of despair coupled with a need to not let that hope die. I’m no Christian as you know Susie, so I wish you love light and blessings and will plead to the universe for healing. Xxx
Thinking about you both! Lots of love and hugs Paula xx
Our precious men have indeed walked a similar journey these past 4+ years, dear Susie. I do understand how you are feeling … I was just there myself a couple of weeks ago. This is very, very hard news to hear and when Vern decided to stop dialysis I nearly was unable to deal with it. But it was his decision to make, not mine. He was so very much at peace as soon as I fully understood his wishes and brought in hospice that I knew it was the right decision. Those final days were most precious for both of us. (Note: I have responded to your FB message.)
Alaine’s post brought me a bittersweet smile … that verse was my mantra right from Vern’s diagnosis in 2006 … faith, hope and love … and the greatest of these is LOVE. ♥
I know that together you and Hamada will make the best decision for him. You are both in my thoughts
This is a difficult time for you all Susie. Thinking of you all, you, Hamada, the children, your family and friends.
Sending my love and prayers. Words are inadequate to express how sad I feel at this miserable news, but I will keep praying.
Bad news indeed. Very sorry to hear. Yet somehow, though grim, this news greets me with a certain hope and feeling of well being, knowing that the ability to handle even the most difficult moments in our lives can be done with love, compassion, understanding and peace.
I wasn’t born with this knowledge, it didn’t just appear one day. It has grown over the years, since our paths crossed and I’ve shared your journey. Maybe the distance and casual nature of our friendship makes it so, but I’ll bring this new hope with me in every aspect of my life, and I thank you. And Hamada.
Susie and Hamada;
Thinking of you both dearly; wishing you peace with your decisions.
Hamada and Susie.
This is such a difficult time for you both. Each of us is different, but some things are the same. It is a good time to meditate quietly. Perhaps to read some inspired works (well, Susie, I guess you have written many!) but perhaps some of Churchill’s writings?
In the end, the answer and path is within us all. We just need to be still so we can hear the message.
We don’t know each other, but I guess Hamada, you and I are walking on the same path of life. I am a fellow warrior. I cannot tell you how many times I have wondered … is this the moment to let go? Am I being called to a greater purpose?
Whatever you decide, know that there are many who are here to accompany you at a spiritual level.
My warmest wishes for you at this difficult time. May your decision bring you happiness and inner peace.
Little Nephew John and family thinking of you big hugs and kisses
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Oh, Susie…. just blew back into town and am deeply saddened by this latest news. Although not “religious”, Dom and I have become deeply spiritual and will be sending our best wishes to your/our Hamada.
Please…both of you keep your heads up. Although we’re new friends, you’ve been in our thoughts, kiddo.
Sending good vibes and best wishes from the Deep South… stay tough…
Nan
I can’t get over the speed with which this has happened. It was all sounding so positive. Sending you strength and hope and virtual hugs.
Dear Susie – The pain of this news is just consuming me and leaving me numb, so, I can’t imagine what it is doing to you. This monstrous disease! How I wish I could pray it away and I will continue to try just that. You have a worldwide network of family and friends to support you and I firmly believe miracles happen every day – that’s my wish for Hamada and you. May the love, prayers and friendship from all of us sustain you in these intense days ahead. XOXO Lora
Thank you so very much lovely people x Hamada is very relaxed and seems content having now made his decision NOT to have dialysis. We are off for more blood tests again this thursday. This will once more confirm the measurement of the downward trend and a member of the renal support team from Lincoln is to visit us here at home later this month to discuss more with us both. Many thanks for all your support.
Praying for peace and strength in the time ahead. Though we’ve never met in person, your’s and Hamada’s love story has profoundly touched my heart. Thank you.