I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: bluesgirl on March 15, 2011, 03:59:38 AM
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Hi! 30 year young woman from Swden here. Diagnosed with glomerolus nerfphritis of unknown cause in june 2010 now down to about 13% or slightly lower in function and being prepared for dialysis ( av-fistula it seems if possible.) Hating all of it and am coping but not feeling at all well psychologiacally.
Hoping to find a support community as I'm feeling quite alone, and also hoping to find other young people with kidney faliure as all I see in waiting rooms and hospital are old people. feel free to pm me if you fit any of the above or if you're from Swedenand feel like talking.
Other than that I'm a owner of 8 cats and 8 birds and 3 guinea pigs love animals and acting/directing and the theater.
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Welcome from a former high school English and theater teacher. I'm old - 47 - but I'm here for you! I've been on dialysis for three and a half years, waiting for a transplant. You are not alone!!!! :welcomesign;
P.S. We had an exchnge student from Sweden stay with us for a year back in '81.....
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:welcomesign; to IHD. Where you're at right now is a particularly hard time for those of us with kidney disease. Feeling sick, waiting and dreading what's to come. I felt much better once I started D but the whole journey is one that nobody would willingly choose.
I hope you'll find all the info and support here that you need or want and I look forward to getting to know you. We have young people, old people and ageless people here.
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Hello Bluesgirl and welcome to IHD. I'm not sure we have anyone from Sweeden on here???? But, welcome!!! I'm so glad you found us. You write very good English.
You need to enjoy your life right now. When you are not in waiting rooms... smell the roses and have fun. We will help you through dialysis. You will be fine.
Rerun, Moderator :welcomesign;
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Hellos, Bluesgirl!
The wait for dialysis is hard! If it helps you at all, my husband felt ten years younger once his treatments started! He had no idea how bad he had been feeling until he started feeling better!
Stick around! You aren't alone and this is a good place for community!
Aleta
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Welcome to the group, bluesgirl. Lots of good information and friends here. Glad you found us!
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Hi Bluesgirl and I also welcome you to IHD. There are quite a few younger members here so I hope you'll feel right at home. This is a great place to learn all about kidney disease and dialysis. And, you will find support and friendship here also. Sorry you have to be here but I hope you'll find out that even though dialysis will change your life, life is still good. :welcomesign;
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thanks for the warm welcome :cuddle;
I hope you don't mind me venting a bit and tell you a bit more of why I'm a bit depressed and worried (although most of it I bet you have heard before.)
:rant;
It all started more or less about a year ago, in dec 09 or jan 10 when we found out my father had colon cancer. At first they said it would be all right, he would have surgery to create a "stomi" ( not sure what you call it in english) and then get radiation and then get the bit of cancerous bowl out.
Well, just after the surgery, his heart got injured or "failed" so now we were told they didn't know if they could do the radiatoin, eventually they did it anyway and all things seemed to go well. When it came time for his second surgery, to remove the tumour, it looked as though the tumour hadn't shrunt very much and so it pribably wasn't very sensitive to radiation, but as my dad now had a weak heart they didn't know if he would be able to handle chemo, they decided to try anyway. Right around that time, they found out about my kidneydisease, I was estimated to have about 30-20 % left and spent 12 days in hospital. My dad's oncologists decide d they would try the chemo in spite of everything and it went fine for a while but the one day my dad got a stroke with, among a few other issues dysphasia as a result, also he had a wound that would not heal and still hasn't. the same day I foudn out that my dad had a stroke, while I was in the hospital, I found out that my half-sister who I hadn't seen in a long time, but still love very much had cancer in her uteris and would need treatment.
All things graduall went to pots while my kidneys got worse and worse and I got new inof and new rules and meds to stick by and new symptoms. We also found out during a check-up that in a biopsy the doctors made, there were still cancer cells in my dads body, or so it seemed.
My kidneyd continued to get worse and then recently, in january this year, I found out that my half-sister had died. Kidneys are still getting worse and now they are beginning to prepare me for dialysis, it might be in 6 moths a year, but it will come. I also have unexplainable fevers which now come at an interval of a few day/nights a week and sometimes every/ every other night of the week, making me very tired and my body sore and exhausted the next day, and having spina bifida and being in a wheelchair since birth that is hard, I also have incontinence because of the spina bifida and have now got terrible dihorea from either the meds or the condition itself, which is also had to handle.Needless to say , perhaps, I'm tired and sad and having a bit of a hard time, since it seems that every time something good happens or it's calm for amoment or two, something else happens that makes everything worse, and you get new rules, meds and diets to live by.
Still there are things left to live for (I have the cats and I am trying to get back on my feet and start up with the theater directing again) and I don't give in too easily, but right now life is though.
There. Rant and self pity over for the moment. ;D :P
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G'day, bluesgirl and :welcomesign;. You've had a rough time but, at least, you've joined us and found a lot of new supportive friends. There is a thread about pets; how about showing us photos of your menagerie. I have had up to 4 cats (only one now). I reckon 8 would be a challenge, especially combined with the birds and guinea pigs.
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Oh my God...you have so very much on your plate. I'm surprised you have the will and energy to post here, but I am so glad you did. I hope we can help get you through what must be a truly challenging time in your life. There are so many members who have multiple challenges (as if kidney failure wasn't enough). You come here and vent any time you want. We've all felt that self-pity at one time or another. There's no great shame in that. :cuddle;
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:welcomesign; bluesgirl. I'm so sorry that all of this got thrown at you in such a short space of time. You've come to a wonderfully supportive place.
*huggles*
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just had another major blow. Have been to the vein-mapping today which went fine, but this morning my neph called to say that she had taken some allergy tests ( without telling me) and it turns out I'm allergic to my birds, so now she wants me to get rid of them and probably the guineapigs. I broke down completely. The last 2 days I have been feling rather optimistic and though that maybe I can do this whole thing but of course it couldn't last, I had to get anotehr kick in the gut to make me fall down again.
The one possitive thing is that I said I can live with finding new homes for the 2small" birds, the cockatiels ( 6 of them) the budgie and one of the large parrots who has found a partner and "girlsfriend" in one of the cockatiels, if only I can keep the one tame parrot Joppe, whom I really love. So my neph siad that we could give it a try. I find new homes for the other birds and the guineapigs, and move Joppe out from my bedroom and into the kitchen, she'll prescripe allergy pills and we'll see if it can work that way.
What scares me to death though, it the thought of developing an alllergy towards the cats, because I'm not sure I'll survive without them, or will want to.
I suppose I shoul stop sleeping with them in bed at night, but it's a quallity time for us and I feel safer with a cat in my knee-folds, so what to do?
So confused and exhausted right now.- Why does all of this need to be happening to me? What I have i done wrong to deserve this? Will things never get better? Will I always get kicked to the ground as soon as I try to pick my self up?
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Welcome to the family. :waving; It's a lot to take in and you are still relatively new to all of this. It should get a little easier once you learn more about what's happening to you mentally, physically and emotionally. We're here for you. :grouphug;
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Kidney failure can certainly make you feel out of control of your life. All of this stuff is happening to you so quickly, and it is easy to feel overwhelmed. Add to that the fear that you may have to give up something that brings you such pleasure, like your cats, and it easy to see why you'd feel so depressed.
It seems that we are always having to cope with a new reality, a new "normal". OK, you finally learn to cope with the idea that you have kidney disease. Then comes getting ready for dialysis. OK, you finally wrap your head around that, and it's time for surgery. OK, you heal from that, and then it's time to actually start dialysis. It seems like every time you look up, you have to get used to something new. You've had to get used to a lot of new ideas very quickly. You've found new homes for some of your pets, and you are now getting used to their absence. You still have your cats, and I hope you won't have to "get used" to their loss.
But cats are different from birds, and just because you are allergic to one doesn't mean you will be allergic to the other. Try not to panic just yet. With fewer pets in the house along with allergy meds, you may well be able to keep the cats. If your doc understands how important they are to you, I'm sure she will do everything that she can to make sure you can keep them.
I know you hated losing some of your pets, and I don't mean to sound dismissive, but your health, at this moment in time, is paramount; staying well is the whole point of dialysis, and you don't need to have bird stuff damaging your health.
Exhaustion will make every problem look insurmountable. Exhaustion leads to questions like "What have I done to deserve this?" (nothing) and "Why is this happening to me?" (no real reason) and "Will things never get better?" (they will once you get good quality dialysis and begin to live your new life).
I'll bet that right now, you go through life wincing, just waiting for the next catastrophe. I have felt that. It's frightening. But this is a very supportive group of people to whom you can vent whenever you need to. Sometimes we will have answers for you. Other times we won't, but we will have been able to listen to your fears. :cuddle;
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thank you! The animals have yet to move, so right now I'm walking around feeling the loss every time I look into that room. Like I said and aquaintance will take them wihc is nice since the flock that is made up by the birds won't be split up, and the guinea pigs will go on living in the same herd, I think. I also know that she loves all her animals very much and I'm sure they will do well there as the will all be with their respective mates. Sill the thought of walking around in my flat and not hearing the budgies chatter which i love, or hearing the 'tiels and the parrot is awful, some of them were born here at home, and some came in a bad shape or as rescues, and even though only onw of them is tame and one is on the way, you DO build up a realtionship to them. Also as usual with me, it's all about the unknown, how will I feel, will "my luck" turn around at some point. As you said I'm exhausted, maybe not even from the kidney diseease, although that's probably not helping, but also from everything that is and has happened. I never get to rest, just feel happy for any longer period and restore my energy and am starting to feel like ther will never be an end to all the hardships and missery.
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I know that nothing will take the place of your birds and your guinea pigs, but I hope you do feel a little bit better knowing that you really took a lot of time and effort in finding them a new home with someone who will love them as you do. It must be so very hard to have to dismantle these relationships that have given you so much pleasure.
Are you involved in your dad's caregiving? Does he have someone looking after him? I know you must be worried about him, but if you are also having to take care of him, that's a terribly big burden.
I can't imagine having spina bifida and kidney disease at the same time. I think I would react much like you, wondering when would all of this will stop? Sometimes it is really very, very hard to find any pleasure at all in life, so you have to go out and either find it or create it yourself. Tell us more about your involvement in the theatre. Are you working on anything new? Are you feeling well enough to do some more directing?
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the 'tiels and the budgie and the gunieapigs have just gone to their new home. I feel a bit sad, but strangely calm, and tired. Perhaps it helps that I have an awful cold and really don't feel I have the energy to fight it anymore, it's just that everything is so qiuet. I know they will have a good new home though. I'm terribly glad I still have the cats and Joppe to clown around and make me smile at the moment!
p.s It may seem trivial, but for those who pray, please pray for me/ us that the cats and Joppe can stay!!!!!
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I'm praying for you, the cats and Joppe! I know you are used to having a lot of animals around you...lots of noise and activity...but maybe you could learn to enjoy some peace and quiet. There is joy in a quiet home. The cats and Joppe can still be entertaining.
Keep us posted on your allergies! Thanks for the update.
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Hello, bluesgirl,
I also suffer from glomerulonephritis, in my case it is chron. proliferative glomerulonephritis with hypertension, Lupus (SLE) and MCTD.
I know it is very rare and I have been trying to find out whether there has been any positive research
which helps people with glomerulonephritis, but I have not come across any.
I have no nephrologist or any other specialist/doctor to go to, unless I pay lots of money, which I do not have,
and I have been in contact with another person on the Continent suffering from the same disease
and they had every health-care in the world, but it did not cure their glomerulonephritis or stop it,
so it deteriorated and they had to go on Dialysis.
In my case I only could focus on my diet, keep myself slim, and keep my stress-levels down
and my kidneys have stayed at 10-12% without Dialysis for over 2 years now.
My hope is this continues or even improves.
So, whether there is medical healthcare or not, it does not seem to matter with glomerulonephritis.
I am so sorry that you are allergic to the birds, I also suffer from lots of allergies,
perhaps that's connected to the glomerulonephritis?
Best wishes and good luck to you and your cats and Joppe from Kristina.