Hi everyone
my hubby is 2 years post stem cell transplant and is currently in metabolic remission he’s having treatment now to try and get his graft vs host disease under control.
during the past 2 years he’s been in hospital for bad infections he’s had covid twice pneumonia twice rsv, aspergillosis which nearly took his life.
he never shows any signs of these infections they just happen and obviously we phone triage and they see him but the speed he declines and needing oxygen is scary thankfully he never remembers these events. But I’m now on constant high alert and can’t seem to switch off especially at night can anyone relate, or have any tips or advice
Hi ragdoll and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and my husband has been in hospital 3 times in the last couple of months. It's a very scary time but I do manage to switch off when he's not in hospital.
The online community is divided into different support groups so I'm going to recommend that you join the carers only group as you'll then connect directly with others who are supporting a loved one with cancer.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your husband's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi ragdoll and welcome to the Community but sorry to hear about your husband’s post Allograft Stem Cell Transplant (Allo SCT) challenges.
I am Mike and I help out around our blood cancer groups as well as our Stem Cell Transplant group.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well…… as I have had 2 Allo SCTs……… I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
Allo SCT is a significant journey and can be a big hit on the body. Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated with my first SCT in June 2014, I was told this graft failed on Christmas Eve 2014 so went back for my second Allo SCT in Oct 2015 (See my story) but I am coming up to 11 years out from my last treatment, I turned 70 last Nov and I doing great.
But like your husband I have had some significant challenges post treatment including…… GvHD: 2 Trips to ICU, 5 times back in hospital (38 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia 3 times, Neutropenic Sepsis 2 times, A Fib and three months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin…… I had a heart attack in April 2022 and now diagnosed with Prostate Cancer…
My wife and I have learned to recognise the signs and able to take the right actions…. I have 2 sets of on the shelf antibiotics that I have on repeat prescription and am free to take them at the signs of infections developing…. last Nov I again developed Pneumonia but did not land up in hospital….. a testimony to how the body eventually recovers and being on edge reduces significantly.
