Will things get better ?

[Carmen11]

Hi , my name is Carmen , I was diagnosed last June 2013. I drove myself to the ER on June 13th after months of sinus problems and which had lead to completely not being able to smell , I'd been very fatigued and depressed , having dizzy spells and a metallic taste in my mouth . I had finally gone to a CVS pharmacy a week prior , the NP there had looked up my nasal canal and said there was no room for me to breathe which she decided to treat with Augmeton . That medicine caused me to have severe vomiting , she changed the meds to another antibiotic which still was causing vomiting , at this point bile. I couldn't even stand up straight at this point and had begun to have mild chest pain as well . After a week of this I FINALLY drove myself to the ER ...thank God ! That is when urine and blood taken and X-rays . The doctor on duty asked me if I'd ever had kidney problems, which I hadn't . They immediately admitted me and I found out that my kidney's were shutting down . Very soon after that lots of doctors were in and out of my room asking me the same questions over and over , I had no idea what was coming ...days later both my lungs collapsed and I was put into ICU and fighting for my life . Two months later I woke to find out I'd been in a induced coma and wasn't expected to live. My family had began to do the unthinkable and plan my funereal but luckily I had AMAZING doctors at Emory in Atlanta who believed in me said I was a fighter , they had put me on ECMO , 17 days later , it worked ..I lived . I'm so happy for that , but now it's been a little over a year and this is the HARDEST thing I've ever had to deal with in my life. I've been on prednisone this whole time , though I am being tapered off , I'm struggling . I've had Cytoxin 6 times and plasmerpharisis , blood tranfusions and still on O2 as needed which lately seems more than usual. I'm in severe pain due to the long term pred. , I have gained 30 pounds and hate how I look , I walk around like a old lady and may need hip replacement surgery in the future. I just want to know it's going to get better ..I used to play soccer and love to dance and flirt and now I'm a hermit stuck in my house feeling left out of life ... Please tell me that this too shall pass ... thanks Carmen

[whatthewhat]

It will, Carmen. I am so sorry for what you have gone thru...you will find here on the forum that diagnosis is often the hardest point of the disease, for a few reasons. One of those reasons, tho, is the feelings of shock and isolation and fear - I think joining this forum helps with that end of things (besides offering a ton of experience and wisdom.) big hug from California.

[Carmen11]

Thank you sooooo much for responding =-) Hugs back to you !

[renidrag]

Yes they do get better and I am sure you will soon see improvement. While reading your story I was reminded of one of our friends, drz, who's story is somewhat similar to yours and he is now a great support and shows what fight and doctors can do. Hang in there.
Dale

[gilders]

Hi Carmen. The future is hard to predict with this illness, but I can pretty much guarantee things will improve for you. What we can't predict is whether you will have relapse(s) (or flares).
When I was initially diagnosed WG was very severe. Although I don't know if my parents actually started planning a funeral like yours, they were told that I wouldn't leave hospital alive. I also had similar treatments as you - plasmathersis, blood transfusions, O2, etc plus other treatments such as dialysis.
The good news is that once the treatment kicked in I did return almost back to full health. In fact I started looking after my health more, so in some aspects I was healthier, playing soccer and cycling.
The bad news is that I've had quite a few relapses and after every relapse my health seems to begin to start to return to the pre-relapse level, but not quite. Therefore after all the relapses I've had over the last 19 years, in total my health is MUCH worse.
But not everyone has relapses. Perhaps I've had quite a few relapses because both myself and Dr always aim to get me in drug-free remission. Other WG patients decide it's best to stay on drugs like prednisolone and azathioprine for life. I don't cope well on prednisolone, so drug-free remission is my choice, even if it increases my risk of relapse.
Some more good news is that although I've had quite a few relapses, the period between each relapse has grown each time.

[mrtmeo]

Hi Carmen,
What an experience, but so common.
You will get better and there are many things you can do to help your body heal from all the toxic drugs.
Number one is get your vitamin D levels into the optimum range of 60-80 ng/mL.
For bones, eat prunes.
There is a study showing that 10 prunes per day reversed osteoporosis and did reverse some of my mom's.
It maybe the Boron in the prunes that helps the bones, but vitamin D, magnesium and calcium are also, necessary for bone resorption.
It takes a long time for the body's tissues to heal.
Most important is to keep a very close eye on your kidney function and using Hemastix (to dip in your urine to see if there is blood) will tell u if you are in a flare.
Some people have had success using Rituximab at flare intervals, but long term treatment safety has not been clinically evaluated, yet.
Good luck and you will get better.

[gilders]

It maybe the Boron in the prunes that helps the bones

mrtmeo, thanks for the advice about prunes and osteoporosis. I hate prunes so did a quick search to see which other foods are high in boron. Came across the following website - Boron | Boron Rich Foods
Raisins and nuts are very high. Just need my Dr to prescribe some Cadbury's Fruit & Nut!

[Carmen11]

Thank you very much for replying , it makes me feel so much talking to people who understand =-)

[Carmen11]

Hi , I can't thank you enough for replying and giving me hope . I'm so glad I joined the forum and truly feel this is helping me already . Hope you're having a great day !

[Carmen11]

Thank you so much for the great advice , I will def be buying some prunes and getting some vitamin D , is that best taken as a supplement ? Aso , where can I get the Hamastix ? Thank you again and please keep in touch ! l