[Richyrich]

Hi all,

I last posted on this site about a year ago re. my mother who suffers from Lupus.

She has had symptoms on and off all her life, however things took a turn for the worst about a year ago when she developed renal and lung involvement. Over the past year she ahs been treated with high dose steroids, immunosuppressant’s and more recently chemotherapy. Her kidneys now appear to be under control however her breathing has never really improved. She has marked inflammation of her lungs with some signs of lung fibrosis.

She was seen by a chest consultant yesterday who explained that the chemotherapy wasn't working (she knew this anyway) and that they are starting to run out of options. They plan to try a course of Rituximab next but this is the 3rd choice of medication for her and non of us are too hopeful it will have any real beneficial effect.

Her only option there after is for a lung transplant. I'm concerned that she won't be a viable candidate for transplant due to her having a systemic illness such as Lupus but also that she has previous renal disease. She only 60 so her age isn't a factor yet (well not in the uk anyway). Her consultant explained that without transplant she could only expect to live for a further 1-2 years, but what sort of an existence would this be for her? Housebound and permanently attached to oxygen?!?

I'm at a loss really to know what to do next. Has anyone had any experience with advanced lung disease related to Lupus?

Thanks,

Rich.

 

[melissar]

Hi Rich,

I'm sorry your family is having so many problems. I'm not familiar with the lung fibrosis part of the disease, but my mom is end statge renal failure and on dialysis and has been for about 7 years now.

For the most part, they won't do transplants on Lupus patients (at least here) because the disease will most likely also attack the healthy new organ they put in. But until you get the official "no", I wouldn't give up on it!!

Being on oxygen isn't an ending to her quality of life. The bigges thing is to be positive and strong but also to be ready for her delcine. It's an odd line to walk, but she will be looking to you and your family for strength, love and any smiles that you can possibly bring to her. Remember that so much of fighting any disease is her attitude. If she gives in and the family gives in, the quality and length of her life will probably be shorter. (People think I'm nuts, but I play stuffed animals with my mom because it makes her laugh and smile...I don't care what anyone else thinks.)

One difficult conversation (if you haven't had it already) is her advanced planning directive. My mom is only 62, so I can relate to how hard it is to think about her life ending before anyone would want it to!! But it's hard to look at someone you love hooked up to all sorts of tubes and machines and try to make a decision as to what's best (I struggled with this, and after making the decision NOT to disconnect her from life support, I spent a couple of years wondering if I made the right decision!). If that decision is already made, there is no question that her wishes will be followed.

Even if she can't get out much, her life can be full of love and family - and that is more important then getting to go shopping or whatever.

I wish there was something I could say that would be of more help to you. My heart goes out to you and your family. Just love her, hug her and kiss her every chance you get!

 

[LolaLola]

Dear Richy Rich, I am sorry this is not something I know about so I can't be useful here. I can imagine that you are going through a hard time. Melissar is very right about Advance Medical Directives, I am a lot younger than your Mum but I did mine and lodged copies various places. My Doc. thought I was being a bit depressing but these things need doing. It took me five years after a bad health scare before I actually completed the decisions.

Whatever treatment your Mum gets I sincerely hope it goes well for her.
I hope others here will be more knowledgeable than me about Lung matters and can help you.
x Lola

 

[elle-co]

I'm sorry I have no advice to give you. But I just wanted to say that I hope everything works out for your Mum and you.
Sending you lots of hugs and prayers.

Take care
Elle x

 

[forever hopeful]

i'm so sorry to hear about your mom. i agree with the advance directive but also don't forget to make sure that both you and your mother are financially prepared in case she doesn't pull through. last year i was in similar predicament but not as dire. my dad, who has lupus, almost lost the functioning of he kidneys and he ended up getting a blood clot into his lungs at the same time. it really mortified me. i dunno bout you, but i've always have been mentally preparing myself for my either of my parents passing. every now and then i have nightmares of my dad passing away. i guess it's my mind preparing for the inevitable. but nonetheless, regardless of what happens, try to spend as much time with her as you can. you never know when someone's time will be up. i wish you all the best in this tragic situation and i hope your mom will get the medical treatment that she needs.
oh by the way, i know of a lady who is on oxygen and she's an inspiration to me. she doesn't really let the oxygen tank get in the way of her life. she still goes to the country club several times a week, goes out to movies and shows, and visits with her family. with the right attitude, that oxygen tank, won't keep your mom from enjoying her life.

 

[KarolH]

Hi Rich and sorry about your mother. She is in a tough situation. You have gotten some good advice here. I am not very familiar with PF yet my girlfriends husband had it and became very ill.

He was not a candidate for transplant due to other health issues but your mom might be. Since Lupus can attack organs then the flip side here is she may not be.

I do think getting paper work and things in order is a good idea just in case your mom does not pull through this. I will say a quite prayer for her, and for you.

Best of luck to you and your family. Hold your mom close this holiday season.:wink2:

 

[Richyrich]

Thanks for the replys and kind words. My Mum's very matter of fact about all this and has already sorted out her will. She has a living will already prepared in case her condition deteriorates further. She has stated that under no circumstances is she ever to go near a care home (which I totally understand and would never put her in one) and says that she'd rather end it all prior to that. I know it all sound a bit morbid but we do laugh and joke about these things so she's keeping positive.

I've recently become a father for the first time so trying to juggle my own family life, working full time, studying and being there for my Mum is tricky.

I was round for tea last night and her condition isn't great, climbing a few stairs is enough bring on coughing fits and breathlessness. She a stubborn one tho, all offers of help were rejected with comments like I'm not dead yet etc.

Anyway I'll keep you posted.

Rich.

 

[KarolH]

Rich,

Congratulations on the baby and becoming a dad. Yup, it is not a easy job trying to juggle all you have on your plate.

Love your moms attitude. She is one fiesty woman!!!!:lol::lol:

Keep us posted and well wishes for a lovely holiday.:wink2:

 

[melissar]

hi Rich, your mom's attitude sounds great! It sounds like she's got her head on straight and making sure her wishes are known.

My mom's doctor tells me all the time that my mom will be alright, she's too fiesty not to be!

Congratulations on becoming a father! I'm sure that brings her a great deal of joy.

I hope your holidays are peaceful for all of you. And remember that you can only do what you can do. Be kind to yourself.

 

[roxie_P]

hi am really sorry about your mum being ill

am in end stage kidney faulire and have been on dyalsis for over a year now ive not had really bad lungs apart from fulied builed up but i did have really bad heart involment and had rituximab about a month ago for this with really good results witch did supirse me as id also had chemo with no good results,

you can be considerd for a transplant if your lupus goes in to remission or after the rituximab shows inprovement for at least 6months as am waiting now to have my dad kidney,,

good luck and all the best xx

roxie

 

[nicky00]

Hi Richyrich

I have seen somebody close to me decline and eventually die due to a lung condition called fibromysing aveolitis. Nothing related to lupus although it is an autiommune disease and she was eventually attached to oxygen.

Im not aware of the medical implications of a lung transplant and any other medical complications such as lupus so cannot comment. I also realise you wanted experiences answers re lung/lupus involvemnt.

This person was so fiesty and her beliefs and directives ; generally in life, and espically in those circumstances that one of my concerns was her potential inability to take in what her options where because of her attitude. The attitude she adopted seemed at times naive in some ways because she remained ridgid in her beliefs. I realised that it also kept her on top of life and was her way of dealing with anything and everything and that needs of course to be ultimately respected.

I did'nt want to feel guilty that I hadnt done something and regretted any decisions etc. Its is hard it really is.



The only thing I can say is that her wishes and directives are so important, but so is the important medical advice and any experiences you can explore to truely weigh up the options and much you listen and hear what she is saying.
Then what do you do with that knowledge and not knowing the outcome and the possible quality to life.

It is not an easy decision.

Its a huge responsiblity to feel you are doing the best for somebody you love, even though its not a responsibility if that makes sense.

I really hope you find answers.


Congratulations on being a dad..

Nicky

 

[onetay]

Hi all,

I last posted on this site about a year ago re. my mother who suffers from Lupus.

She has had symptoms on and off all her life, however things took a turn for the worst about a year ago when she developed renal and lung involvement. Over the past year she ahs been treated with high dose steroids, immunosuppressant’s and more recently chemotherapy. Her kidneys now appear to be under control however her breathing has never really improved. She has marked inflammation of her lungs with some signs of lung fibrosis.

She was seen by a chest consultant yesterday who explained that the chemotherapy wasn't working (she knew this anyway) and that they are starting to run out of options. They plan to try a course of Rituximab next but this is the 3rd choice of medication for her and non of us are too hopeful it will have any real beneficial effect.

Her only option there after is for a lung transplant. I'm concerned that she won't be a viable candidate for transplant due to her having a systemic illness such as Lupus but also that she has previous renal disease. She only 60 so her age isn't a factor yet (well not in the uk anyway). Her consultant explained that without transplant she could only expect to live for a further 1-2 years, but what sort of an existence would this be for her? Housebound and permanently attached to oxygen?!?

I'm at a loss really to know what to do next. Has anyone had any experience with advanced lung disease related to Lupus?

Thanks,

Rich.

Rich,
I am so sorry that she is having so many problems and that you seem to be her strenght. I do not know much about the fibrosis, but Her quality of life is not home bound by oxygen. My mother was on dyalisis for 20 years with no kidneys at all the last 10 years of her life. I have an aunt that has copd and has had oxygen for the past 18 years. Both of these family members lived as normal lives as they could (the aunt is still alive)(a fall and a broken arm took my mom not any of her diseases). It is no different than having lupus, cancer, a heart attack, you adapt and do what you have to so you can have a good life with what god gave you. I know it seems unfair right now, was there with my mom but I now see that it made us have a special relationship that had she not had the problems she had and needed me so much we would of lost very very special time together. Take everyday with your mom as a special gift that you both have been given and know that she needs you by her side.
Tammy

 

[peonyprincess]

Rich,

I wanted to take a moment and tell you that I am sorry that you and your family have found yourself in this position and that your mom has endured so much. She is obviously a very strong person to have dealt with everything that she has had too. I do wish you and your family the best.

I have been on 4 liters of oxygen for over a year. I am a 39 year old mother of 4 and a granddaughter. I still attend parent-teacher conferences, Christmas musicals, softball games, go out for dinner, attend New Years Eve parties, the birth of my granddaughter, yes in the delivery room. I have always had a great time going shopping on Black Friday and this year was no exception. I grocery shop, take vacations both in and out of the United States. I guess what I want you to know is that just because I was started on oxygen, I didn't let it slow me down. I only have 49% of my lungs and they are even scarred. I have had Lupus since I was in the 6th grade. No, it hasn't always been easy and yes I have had some very bad scares. I personally do not want to know how bad is bad. As an RN, I have a good idea and quite honestly I chose not to always obey doctors orders. I want to enjoy my kids, my granddaughter, my family and friends and my life. I know its hard to be positive because there have been days that I am not and there have been days that I feel sorry for myself and don't even get out of bed. I know my family worries and I try to minimize that, but they are only human, as are you.

It is natural to worry about the health of your loved one. I understand your concern and what kind of life this will give her. One thing to look at is she is alive and with you. Make the most out of what you have been given. You never know, the docs have give you an estimate, but take a positive look at things. Doctors have been wrong and maybe if everyone keeps a positive attitude it will help and encourage her to be positive and there have been cases where that has changed everything. Not to say that will happen here, but you have nothing to lose. Enjoy your time with your family. And we will all be here for you if you have any questions or want to vent.

Good luck and kisses,
Nancy