[PhoebeParticipant]

My husband was diagnosed with MGUS in 1994 aged 34 following a routine blood test which indicated high levels of paraprotein. He had a bone marrow biopsy and MRi and no other problems were found, which was good news and he was monitored every year. We knew very little about the condition at this time and put it to the back of our minds as he was not ill and we had a very young family. He continued to have had no problems except for skin rashes/blisters in the winter months. In 1999 he was diagnosed with Cryoglobulinemia a rare condition in which blood thickens at low temperatures, which was probably the cause of the skin rashes.
Life continued as normal and he experienced no other affects. However, in Dec 2010 our lives changed when he contracted bacterial meningitis (Meningococcal septicaemia)and he ended up on life support for almost 3 weeks. We were told to expect the worst and he was given 10% chance of survival and listed as DNR. However, he proved the Drs wrong and pulled through but suffered severe tissue damage which led to multiple amputations of his lower legs, right hand above the wrist and all his fingers and thumb on his left hand.
After 5 months in hospital my husband returned home with his prosthetic legs and we slowly came to terms with this twist of fate. Within a few months and following another BMB and MRi we were informed that his MGUS had progressed to Asypmtomatic MM. He is now monitored every 3 months and I have to administer G-CSF injections twice a week as his Neuts were extremely low at 0.4. They have since improved but his Consultant insists that he remains on the G-CSF injections and has been having them for over a year. He is currently very well and has just completed a half marathon at Silverston last weekend on his prosthetic legs. He also trekked the Great Wall of China to raise awareness and funds for the Meningitis Trust.
I often read your discussions on your various blood counts particularly the neutrophils which fight bacterial infection. In 2010 my husband had been neutropenic for some time (0.9) just before he contracted meningitis so just wanted you to be aware of the signs and symptoms of the disease, as it affects adults too, not just children which most people relate it with. The Meningitis Trust have an excellent web site which describes the symptoms which you may find useful.
Sorry for the long message but I look forward to chatting with you all.

[EvaParticipant]

Dear Phoebe,
What a incredible story….. And how kind of you to think of us and to remind us of meningitis. It's also astounding that your husband has been able to accept vast physical challenges in spite of his amputations. He truly is behaving in a way that's deeply inspirational.
I am glad that he had so many years before his illnesss got worse. In that time your family would have grown up. It doesn't make it any easier though.

A couple of years after my transplant, when I thought I was in remission, but there was something hatching in my arm, I was trundling a heavy suitcase around China. The trip was a wonderful experience as I got to see my son in Shanghai, to visit a place called Suzhou, as well as Beijing. Some time after I got back my humerus broke, but at least not in the middle of China. I loved visiting China- we were there ostensibly for The Bookworm Arts Festival. I was very surprised how different the place was from my preconceptions. There were parts of Beijing and Shanghai that were just as full of shopping malls and designer goods as Dubai. One amazing experience was that my husband got to address a group of children of migrants in a school that had been set up by a British Iranian woman as a charitable venture. These children were not allowed to register at a normal school because their parents had come from the country to service the huge building boom. There was no heating in the school and the pupils had almost no books. It was a great privilege for me to make that trip and see those children. Life can and does go on after myeloma. Am including some photos I took at that school.
Please tell us more about yourselves.
Eva

[VickiParticipant]

Phoebe,

What can I say, you guys are inspirational and you are both a great team

Vicki and Colin x

[tomParticipant]

Wow Wow And Bloomin WOW

What a venture you and yours have and are going through and I raise my hat to you all (I do wear one he he)

Your Story is inspirational 😎 and your strenth will carry you through the MM Journy Good Luck and Love the Post

Love Tom Onwards and Upwards xx

[bandityogaParticipant]

Your story has given us hope. My husband is still in rehabilitation after 4 months in hospital for spinal operations as he has partial paralysis. He is has just finished cycle 2 on CTD and we get his results tomorrow.

Fingers crossed the treatment is working and we can get him home soon.

Maureen

[feaseyjaneParticipant]

Hi Phoebe

Thanks for sharing you incredible story.
Good luck to you both on this long journey
Stay strong for each other

Jane xxxxx

[EvaParticipant]

Dear Phoebe,
I can understand you not telling the family yet. Your husband may remain asyptomatic. I hope that your children will gain strength from how you've both dealt with adversity. It's a great privilege to be a parent – today I was able to speak with one of my sons on the phone. I've only seen him a few times in the last few years because of some of his issues with depression, but I felt that all the treatment I've had had has been worth it, so that today I was here for that conversation and that I could try and reassure him and be there for him.
Eva

[PhoebeParticipant]

Thank you all for your lovely messages. I have read many of the posts on the site and believe each of you are inspirational in your roles as patients, carers and family members. Its been very helpful to gain such a wealth of shared knowledge from reading the threads, especially the logs regarding treatment which describes the process and what to expect.

Eva- I have a daughter who also experiences depression and appreciate some of the effects this can have on the individual and as a parent. Its great that you can provide him with reassurance and be the 'rock' that all children need no matter their age.
Phoebe

[mhnevillParticipant]

Dear Pheobe,

Like the others, I would like to thank you for your inspirational story and to wish you and your husband many more years free from full blown MM.
All these stories of infections are so scary. It is interesting that the Government is now taking the subject so seriously that they are encouraging the development of new antibiotics. Let us hope and pray the scientists are successful

All best wishes.

Mavis

[Author]

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