[bernard]

Hi all

I've written in the family thread about the lack of support our doctors has given mum and have further questions there. This is more about clearing up my confusions!

My mum has SLE, she's got the kidney problem, thrombosis, skin rashes etc.....no good news from the doctors yet. It's taken them 18 months to actually open up to the fact it could be lupus, now they know it is and she's going for a kidney biopsy in the next 6 weeks.

However, I want to know what I can do to help her. She's nearly 60 and I've got 2 kids of my own. From what I can gather one of the worst things mum says is not seeing the kids as often as she wants. They're 1 and 4 and are like illness magnets! But they are her only grand children so she wants to see them as much as possible.

• She has to stay away when they're ill so that she reduces the risk of her getting it. Will this be the case for the rest of her life?
  
• Is there a specialist we can go to in the South West (somerset/devon area) for Lupus (even if it costs money)?
  
• Could the delay of 18 months accepting it's lupus have worsened her condition?
  
• Why are the doctors so reluctant to agree it's lupus?

 

[debatat]

Hi I have responded to your other post. Docs are reluctant to diagnose lupus as it is a serious illness and it does take time to confirm. The most important thing is that treatment is started. Did your mom have any treatment during that 18month period?

I hope the kidney biopsy goes well, I understand your anxiety. Things are treatable though.

As to seeing the children, the most important thing is hand washing reguarly. That helps kill a lot of germs. You do have to be careful, but I would imagine it would do her good to see the children unless they were actually ill.

Try asking for a recommendation of a doc in the section or call your local lupus support group. Otherwise London Bridge is a private lupus centre in London which is excellent.

I hope you get things sorted.

Deb x

 

[lazylegs]

Hi Bernard,

When my family can't get together we get on Skype. We each have cameras on our computers so we can see each other. It is much nicer to be there, but this is the next best thing. A friend of my mom's reads a bedtime story to here grandchildren this way every night.

Doctor's want to make certain they are treating the right thing. A misdiagnosis could mean treatment with a medication that could do further damage in the long run. I know it is frustrating when everything is pointing in one direction but it is best to be safe. Have you considered getting a second opinion?

Take care,
Lazylegs

 

[KitKat]

I have many friends with children and I decided that I would rather see them regularly and risk getting ill than miss out on the joy that they bring. I believe that there is an element of managing stress and mental health in coping with Lupus and seeing the children in my life that make me laugh and smile is important to that. Even when they are pouring with snot!

The only time I stay away is if I have an infection because I have history of picking really rare and unusual infections that I would never forgive myself if one of the people I love caught.

In theory when the medications are all set up right for your mum then she should have a normal immune system because the drugs should reduce the over activities caused by the Lupus without making it too weak to fight off normal infections.

I would honestly talk it through with your mum and see what she wants. If she is very concerned about infections discuss what she wants to do but if she isnt enjoy that fact that there is a great relationships with you and your kids.

Hope all goes well
K

 

[KitKat]

Oh yeah... hospitals.

The closest hospital to you with a specialist Lupus Unit that I know of is Southampton General in Hampshire. Also Bath has a Specialist Rheumatology Hospital.

K

 

[KarolH]

Checking in with your Bernard, how is your mum?

 

[bernard]

She's ok thanks.

We've got the date for the biopsy so she's nervous about that. Thanksfully it's within 2 weeks so she won't have to wait long.

Lets hope that at last someone can provide good news....

 

[dmb 123]

Hi Bernard. First of all I think it's great that you are being so thoughtful and supportive towards your Mum, good for you.

I have Lupus with organ problems and because of the immune suppresants I take, I can catch a virus easily, like most of us do on here. My advise would be to listen to your Mum and take the lead from her. By now she will be educated enough to know the risks of picking up infections. I have a lot of young family members too, some the same ages as your children, and find it harder to not see them as the stress of being isolated from the people we love can make our illness a lot worse than catching a bug.

Your Mum is going through a lot of changes in her life and will be finding it difficult to adapt. From experience, I know that spending half an hour with the people we love can let me forget about what is going on and feel normal for a bit.

Good luck with everything you are all adapting too, it does get easier and it does stop being the very focus of life.

Take care of yourself too.

 

[bernard]

well this lupus and the medical staff competency with dealing with it is almost laughable if lupus wasn't so serious!

Mum had her kidney biopsy and was told she's at level 2 of 5. So that's fairly good news....we thought.

She's had really bad diorreah and swollen ankles, swollen wrists, swollen face etc and she's feeling rough all the time. So she's been to the doctors several times (again). They were reducing her storiod strength in hope of her coming off them and going on to something else (please excuse me - so much has happened, so many drugs, checks etc that I'm baffeld beyond belief!) that surpresses the immune system. I believe it's what patient who have had chemotherapy have?

Anyway, the latest doctor/hospital visit has said been a complete let down. They're now not sure what's going on and want to perform a coloneposcimy (probably spelt wrong) as they're not sure what's going on and to put mum on these new drugs may do more damage than help. They also want to go back to the docotors who examined the kidney biopsy as the doctor is sure that the lupus has started to attack mums organs. They've also said that it's rare for mum to go from one type of lupus to another (i think she was DLE to SLE?)

I can't believe that the doctors are sooooo confused and just can't help mum - is this normal? it's ruining her life? We had a chat on the phone last night and it's left me really emotional and really worried about my mum.....she's worried too, I can hear it in her voice but she would never say as much.

Sorry this post is a bit all over the place and lacking detail, but I'm really struggling to control myself at the moment. I just want to grab the ****** medical staff and bang all their heads together. No one has a clue what's going on, the doctors don't seem to be talking to each other, and they're certainly not doing their best by my mum.

Is she entiteld to a 2nd opinion somewhere? Somewhere that has a good reputation with lupus patients....I live in Plymouth and believe there's a good lupus doctor there. How do I get her in? We also need to get my brother checked out as he's had similar symptoms as mum but has been diagnosed as having ME. My mum isn't convinced that they have got it right - like they did with her!

 

[Vina-Del-Mar]

Hi Bernard,

Wish my daughters were as supportive as you are to your mother - so touching to see that.

Sorry to hear about your Mum. I also agree that it may do her good to see her grandchildren if they are not ill. I have two daughter and although they are adults, they work and still catch things of other people, Im just careful.

Don't quote me on this but understand that if your mother was referred to that hospital by a GP and she wasn't asked as to whether the hospital would be her choice then she can request to be sent to another hospital and can state her reasons for being unhappy. Yours local Patient Liasons Advisor (PALS) can also give you some advise if you are unhappy with the medical treatment she is receiving. Hospital have PALS but think they only deals with their own hospital staff. Plymouth would also have and independent PALS - try them for advice.

Hope your mother feel better soon sending ((((( hugs ))))) to her.

Take care x

Eve