my daughter was diagnosed with mpgn
April 11, 2008 9:35am CST
mpgn is chronis kindey inflamitory disease, and my daughter has it. boohoo she has to have injections 2 times a week and take 3 pills every other day ontop of taking an iron pill and blood pressure medication on a daily basis. Im at my whits end i cant take many more days off work (im allowed 12) and she has dr appointments once a week 2 hours away from the town i live in. If i miss work tomany more times i will be with out my job and if i go to work i will be with out my daughter. I cant loose either i dont know what to do any ideas?
• United States
11 Apr 08
Wow, you are in a spot. The government put FMLA into law years ago. Do you not fall under that? You would have to get a paper filled out by the Dr.. It should give you 12 weeks to work things out. You can take one day at a time or as long as they think you need to, to take care of her.
11 Apr 08
Be with yourdaughter its where you need to be, will work not understand? Maybe see your own doctor to get a note for work to help your case. I have this type of kidney disease also how old is your daughter? Mine was only found through routine tests while pregnant and then officially confirmed under a biopsy that was the worst bit to go through i truely wouldnt wish that on anyone. If it helps the medication I am on is working well and while it wont ever go away it is maneagble for years with little or no side effects depending on how severe it is. xxx
11 Apr 08
Hiya this might be a little long so bare with me. I didnt have any sickness as they have caught mine relatively early, the only reason they knew anything was wrong was when I went to my first check up at 6 weeks pregnant and they realised I was losing protien in my urine. Having suffered with pre eclampsia last time this was their first but quick and thrown away thought. I had a million blood tests which showed nothing and this is when they mentioned the inflamed kidneys but said to me I would only know with a biopsy which I refused while pregnant for obvious reasons. We were told at 8 weeks we might lose our baby and it sort of continued that way with me having contant checkups and they eventually induced her. After she was born it was more blood tests and such like with a renal consultant but because I was suffering with severe sciatica and couldnt walk most days they put off my biopsy until my daughter was 9 months old as he didnt think mentally I would cope im glad they waited really. I had the biopsy which I can tell you i would not wish on anyone it was the worst experience ever having it was ok it was afterwards I dont know how your little girl was after but it made me really ill. Thats when we found out what it was although it took 2 months to get the results so I was diagnosed about 16/17 months ago now. I am only blood pressure tablets to help protect my kidneys against further damage I refused steroids as I wasnt happy about taking them for several reasons. So far im doing really well although like I say they have caught it really early and my consultant said this is always a good thing. Things are going so well we are planning another baby in a couple of years which I have to come off my meds for but my consultant said it wont be impossible, he said any problems may occur in the next 20 years or after the worst case scenario meaning a transplant but thats really extreme and the meds they have for it from what ive found so far are really really good, my protien loss is right down to what it was and I can assure you id never think of another baby unless we thought we could get through it with minimum risk. It varies from person to person what has her doctor said what tablets is she taking etc? I really hope things settle down for her if it helps any I recently saw my consultant and apart from upping my medication he was so pleased he only wants to see me once a year, like your little girl though tostart with I was there every couple of weeks especially while pregnant but as I got my diagnosis and medication the time between appointments has got larger so things should improve work wise for you soon so I would definatley see your doctor to see what help they can offer you about work. Sorry its so long but if you have any questions please dont hesitate to ask xxxx
• United States
12 Apr 08
Hi pretty...I am so sorry to hear about your daughter..This has to be very tough on her and you..It is hard when you have to make a choice...I was thinking that the days you have to take off, maybe you can make them up later in the day or another day perhaps...You could talk to your boss and explain the situation and hopefully he/she will be willing to let you do this...Not really sure if that helped...Hugs to you and your daughter...