Introduction: I'm new here

[Kanjee18]

Hi my name is Jay and I just wanted to introduce myself. My husband has vasculitus which has aggressively attacked his kidneys so he will need a kidney transplant once the condition is under control. At the moment he is on dialysis 3 times a week. We only found out how ill he was in November 2021 so it's been a lot to take in. I just wanted to say hello and make contact as I've been finding it tough to accept the new reality. I thought it would help to reach out and talk to people in similar situations.

[Main1234]

Welcome to this friendly supportive group ( a group you never wanted to be in) Have you been in contact with the vasculitis uK web site, they have an excellent help line as well. There is also a good face book page and one of the ladies is very knowledgeable on vasculitis and kidneys involvement.

It’s certainly a steep learning curve. Are you being seen at a centre with knowledge and experience of vasculitis?

As a partner it can be a lonely journey ( my OH has GPA, diagnosed 5 years ago) look after yourself as well and ask as many questions as you need to.

[Kanjee18 in reply to Main1234]

Thanks for your reply. I'll take up your suggestions. Thankfully Matthew is being seen at a centre that is a teaching hospital and he is under the care of a very good consultant.

There has been a lot of information to take in and most of it I understand. It's the emotional side of it I've found tough and as a first step it does help to have joined this group.

[May7]

Welcome Jay, I'm not surprised you are finding it difficult to accept the new reality. It IS difficult. You will find several people on here who have a partner or family member fighting this disease, as well as people like me who have the disease. For my own part, I accepted vasculitis itself until I realised that it had damaged my lungs and kidneys permanently. This I find difficult to live with. But my kidneys are nowhere near as damaged as your husband's, and I do so sympathise with you both. You will find that vasculitis affects different people in different ways, and our respective medications will be different, each with our own personal successes and allergies. There is a long road ahead, and we will all wish you both well. Keep in touch and share your questions and news. Best wishes from May.

[Kanjee18 in reply to May7]

Thanks for your kind reply. I do appreciate what you've said. It is a long road ahead and I'm starting to realise this. I took some time of work in December and just taken a couple of weeks off this week. It's given me time to realise that I need to start taking more constructive action rather than just bottling things up and trying to muddle along.

[Grizzly-bear]

Sorry you’ve had to join this group. I’ve personally found it incredibly helpful with my own vasculitis journey (all very new to me too, was diagnosed in August). We all have different stories and experiences yet all of them feel relatable and whenever I reach out to people in these support groups I feel understood. People are very good at responding to queries or concerns or just listening. I wish you both the best of luck with navigating this new diagnosis.

[Vqueen]

Hi, I was diagnosed in December 2020 after 2 years of being past back and forth. I was told I had GPA and treatment started immediately. Even now it still doesn't feel real but like it's happening to someone else. The support from this group is incredible and always there to answer those questions that pop into your head the minute you leave the hospital 🙈For me I've come to realise that your own little family bubble is the reason you keep fighting. It's the little things i never noticed before that now are the most important. Stay positive, stay safe and always keep fighting 💪

[Chipper03]

Welcome Jay, so sorry to hear about what you and your husband are going through. I’ve always found this group so kind and understanding, and tips and ideas here have helped me so much over the years. Getting a major diagnosis and being very ill is a shock, give yourselves lots of time and understanding to deal with that aspect too. Looking back to 2009 when I was diagnosed after years of illness, I wish I’d spoken to doctors more about the emotional side, how difficult it was getting my head around the new reality. The understanding and adjustments do come, I found it helped to understand what the illness is and how it manifested in me. I can’t comment on the kidney aspect, sorry, vasculitis has affected my lungs and nerves mainly. Wishing you both very well, take care and keep asking questions.

[Mooka]

Hi JayWelcome to our group. Firstly I should say your husband is lucky to have such a supportive partner. Please head over to the vasculitis U.K. website where you’ll see knowledge is power over this disease. The Lauren currie twilight foundation website is a good source of information too. The round of treatments and hospital appointments are quite daunting to start with but you soon get used to it. Come back here to ask your questions or just rant. If we can’t help we can usually point you in the right direction. I hope your husband is soon on his road to recovery.

[AndrewT]

Welcome to this Friendly Group, you are In The Right Place, I had a Kidney Transplant, way back, in July 2013, so if you Need ANY Support- or just want to 'Talk' please feel free.

Please give our Collective, Very Best Wishes to your Hubby.

AndrewT

[Kanjee18 in reply to AndrewT]

Hi Andrew

Thanks for your reply. Matthew's consultant has said he will go on the transplant list in December if his vasculitus stays under control. I'm not suitable to give a transplant so we'll have to wait for a donor from the list. Did you have to wait long for a transplant and how have you found life after the transplant?

Jay

[AndrewT in reply to Kanjee18]

Dear Jay,

sorry to be a bit 'long' answering you.... Don't Ask!.....

The 'Average Wait' for a Transplant- well pre Pandemic anyway- was around Three To Five Years, according to the Literature. My Transplant was, almost exactly, four years (June/ July 2009 until July 2013). I honestly don't know what, if any, difference Covid has made but- purely Guessing- I'd add 'around' another year minimum to the Waiting List.

Life after Transplant is, can I say, 'Much Better In So Many Ways'- without having to be too specific? Obviously you don't need Dialysis any more, assuming All Goes Well.... in itself a Major change. You can Drink, FAR more, and also eat many different foods (so your constipation Will improve, definitely something to 'look forward' to!). I found myself Trying 'new' recipees, almost Daily.... Ok Weekly.

Can I 'finish' by sending Matthew, and indeed you Jay, ALL our 'Love & Best Wishes' and a Prayer for you're Futures.

AndrewT

[Kanjee18 in reply to AndrewT]

Thanks for your reply. I know Matthew's consultant is keen for him to have a transplant asap but I didn't realise it could be from 3-5 years. I know the law has changed so that you have to opt out of being a donor so I don't know if that has paved the way for more transplants to take place.With all the side effects Matthew has it will be a relief when he is off dialysis. He does get terrible cramps in his hands and feet mostly.

Thanks for your prayers and best wishes. I really do appreciate that.

Jay

[Dot1958]

Hi, my partner also diagnosed 2021, September. He was on dialysis but stopped now as kidneys have improved from 6% to 26%. Hope all goes well for both of you x

[Kanjee18 in reply to Dot1958]

It's nice to hear some good news. I'm glad your partner is off dialysis. With Matthew his kidney function went down to 5% and I think now it is probably lower. So he's on dialysis 3 times a week and will go on the transplant list hopefully in December fingers crossed. It's just been a lot to take in. He's always been the tough one so I'm having to step up and be stronger!

[Dot1958]

Bless you both, it’s difficult to get your head round it all. Keith had 7 x plasma exchange and dialysis 3 times a week for 3/4 months. They did say at first that sometimes kidneys wake up and sometimes not. Hope you get some positive news soon xx