29 year old almost died out of nowhere

[Jennymfn]

Hi 29 years old it all started bout 5 months ago I had a bad sore throat and was coughing up blood well I thought the blood was from my throat being irritated the bottoms if my feet hurt so bad I could barely walk on them I was pale white as a ghost and couldn't walk to the bathroom in my bedroom without feeling like I couldn't breath.. finally April 25th 2016 my husband came home from work late round 9 pm I was in bed had been all day I couldn't eat I felt so horrible had no appetite.. well I walked into the ER slowly thinking I had strep throat my husband dropped me off cause he had to be home with our kids 10 7 and 18 months I know he was expecting to pick me up in a few hours well I told them I couldn't breath and they did some test and came back pretty quickly and said my blood levels were so low I shouldn't have been able to walk in there ..they were a 5 and 10 started giving me blood transfusions right away put me in an ambulance and sent me to a larger hospital in Oxford Mississippi i was in a small town called Grenada they had a oxygen mask on me I had the nurse call my husband let him know what was going on I was so overwhelmed ..I can't imagine what he was going threw.. I remember waking up the next day in Oxford to my mother in law balling her eyes out and the doctor's telling me my kidneys were failing and they were gonna put me to sleep I had to call my husband on the phone and tell him I loved him and what was going on he was in the car almost to the hospital but they couldn't wait..I was on life support until mothers day I woke up with a tube down my throat... while I was on life support my lungs were secreting blood and they were doing lots of tests trying to figure out what was wrong with me. At one point they told my husband not to leave my side cause they didn't think i would make it threw the night..They finally came up with weagners but couldn't get me to Memphis to do a kidney biopsy to confirm it.. I finally stable enough and they flew me to Memphis so they could give me plasma four Isis and dialysis ... I got lucky and my kidneys came back so I don't need dialysis anymore but I have been doing chemo every 3 weeks I have had both retuxin and citoxin ... I'm hopeing my last treatment of citoxin was yesterday and I will be able to switch from every 3 weeks to every 3 months then every 6.. I am on high bp medicine cause I had a cesure from it going so high when I was in the hospital..I am on Prednisone and a few other pills too .. lately my feet have been hurting again it kinda scares me cause it was a symptom when I was really sick.. I see the doc the 30th

[vdub]

You've had quite an ordeal! From your description, I think the trauma had to be worse for your family than you. There is hope in all this, though. Many of us have been through similar experiences and, eventually, it gets better, but don't set your expectations to high. You will be fighting this the rest of your life... some days will be good and some bad, but you should be able to live a long life (despite what you read on the internet) and raise your 3 kids. Good luck and feel free to join us on the forum to ask questions, answer questions, or to just rant.....

[Dirty Don]

Good job Jenny...you got thru the most critical parts...seriously...it will get better now, but, as vdub pointed out, it's a long road & it doesn't end. Altho, there are huge pauses as I'm now at 5 years after going thru what you did, am drug free, numbers are good, and living an almost normal life...I'm NOT normal! LOL...oh, it takes a great sense of humor too...vdub has one of the worst cases on here & has the best sense of humor...you will get it done. Best to you & your family.

[Pete]

Hang in there, Jenny. As both Vdub and Don have said, it's a long road back, but you can get there. Some things that have helped me are moderate exercise and a cleaner diet.

With exercise, start slow and gradually increase. As for diet, I eliminated fast food and ultra-processed food. Also stopped eating anything with transfats. I eat more fruits and vegetables, more oily fish, and watch salt and added sugars. It's helped get me back to within 5 pounds of my pre-wegs weight. I can now walk 3 miles comfortably and am ramping up swimming.

Hope you do well!

[drz]

Glad you are able to be here. Your ordeal sounds familiar to many of us who were also lucky to survive and be here years later, year six for me. As others stated recovery can be slow and often is not 100% but life with Wegs can still very good and often is more appreciated after a brush with death.

Don't try to rush things as your body needs time to heal and recover.

PS my joint pain and feet pain disappeared after I started treatment for Wegs and have never been that severe again. The pred meds really help a lot with such pain.

[Jennymfn]

Glad you are able to be here. Your ordeal sounds familiar to many of us who were also lucky to survive and be here years later, year six for me. As others stated recovery can be slow and often is not 100% but life with Wegs can still very good and often is more appreciated after a brush with death.

Don't try to rush things as your body needs time to heal and recover.

PS my joint pain and feet pain disappeared after I started treatment for Wegs and have never been that severe again. The pred meds really help a lot with such pain.
Thank you all I'm excited to keep reading all your stories. It was very hard on my family especially my husband he's the one that told me about this site and said I should tell my story.. it was very hard when I was first home because I was just starting to walk with a walker again and I was very swollen the hospital pumped me with so much fluids to keep my kidneys working but never gave me anything to get rid of the fluid when I left so the first few weeks were hard felt like I was walking around with cement blocks on my feet.. the nurse that visits u at home made me go back to the ER cause it was making my bp stroke level high.. they gave me LASIK and I ended up peeing 30 extra pounds of fluid off! I am walking without the walker just want to look like my normal self again I know it will take a while.. I've been loosing my hair from the chemo which sux and my neak is swollen I was told it was from the vasculitis I'm hopeing that goes down when I get a break from treatment

[drz]

I've been loosing my hair from the chemo which sux and my neak is swollen I was told it was from the vasculitis I'm hopeing that goes down when I get a break from treatment

Are you taking folic acid regularly and other vitamins. It is supposed to help reduce hair loss and other things. The Weg meds do have their side effects but none are as bad as a big Weg flare!

[Jennymfn]

Are you taking folic acid regularly and other vitamins. It is supposed to help reduce hair loss and other things. The Weg meds do have their side effects but none are as bad as a big Weg flare!

No I'm not currently but I know I'm going to get some like vitamin d for my teeth have become super sensitive and I'm going to shave my head soon which is gonna kille cause my hair was so beautiful went passed my butt now it's so fried from the chemo :(

[Middlesista]

Jenny - sorry you had to join our club but know you have friends here who truly can understand. Do continue to educate yourself and be sure you have a specialist on your medical team - it does take a team to take care of us!!

WOW 30lbs of fluid lost after Lasix! That must have felt better.

[Dirty Don]

Get the folic acid...seriously. Hair was falling out of my head too, doc gave me a triple dose of folic and in a few months not only did my hair start coming back in, it came back in curly...for a while!!! Always humor in WG!!!

[Jennymfn]

O yes I felt so much better! My feet looked like big foot were so swollen thought they were going to pop I still have stretch marks on my feet and legs from all that fluid it was so bad I was leaking they called it 3rd spacing

[Jennymfn]

Thank you! When I go to the doc I will be sure to ask for it currently I'm only taking magnesium Prednisone my bp pills and some blue pill.

[Jennymfn]

I don't think there are any specialist on our disease around where I live people said they had to Google it to figure out what it was cause it's so rare.. a while back I had eat infection and my lyph nodes were swollen I had a rash I thought it was mono but maybe it was actually the weagners and I didn't know it yet

[drz]

Thank you! When I go to the doc I will be sure to ask for it currently I'm only taking magnesium Prednisone my bp pills and some blue pill.

Ask your kidney doctor about the magnesium. Usually extra metals are discouraged with kidney failure.

[Middlesista]

Jenny - check the Vasculitis Foundation page - they have lists of specialists. Hair falling out - like folks have said Folic Acid is helpful, esp if on Methotrexate although I did not note that you mentioned Methotrexate and it is usually only taken once a week - what is the "blue pill" you mention? Biotin is also helpful for hair loss although it takes a bit of time to work.

Keep asking questions and educating yourself - we have be proactive and vigilant with this disease. Take care!!

[Jennymfn]

Jenny - check the Vasculitis Foundation page - they have lists of specialists. Hair falling out - like folks have said Folic Acid is helpful, esp if on Methotrexate although I did not note that you mentioned Methotrexate and it is usually only taken once a week - what is the "blue pill" you mention? Biotin is also helpful for hair loss although it takes a bit of time to work.

Keep asking questions and educating yourself - we have be proactive and vigilant with this disease. Take care!!

Thank u I will check it out no I'm not taking the methotrexate the blue pill they have me taking is acyclovir 200 mg once a day and that's weird bout the magnesium they have me taking it twice a day!

[drz]

Thank u I will check it out no I'm not taking the methotrexate the blue pill they have me taking is acyclovir 200 mg once a day and that's weird bout the magnesium they have me taking it twice a day!

Some doctor must think you need it then for some reason but ask why. Some times they only look at "their" issue and over look other problems that they aren't dealing with.

[Jennymfn]

Well one day I went in for treatment they said my magnesium was low so they had me take some in the iv after the chemo since then they been having me take the pills twice a day I had to take potassium pills too but only for a few days

[annekat]

Welcome to the forum, Jenny, and I'm glad your husband is tuned in enough to have found this site for you! You will learn a lot on here by reading the posts regularly and by searching the archives, and will find a whole world of support and friendship. You have really been through the wringer with this disease, while some others such as me did not have quite so hard a time in the early stages. There is a lot of variability in people's experience with WG, and a multitude of different ways it can affect us. Plus there are several different meds that are used as standard treatment, depending on severity and what stage of treatment one is in. I'm thinking the prednisone might be what is causing your swollen neck, as it does tend to make us puffy in that area, which we call "moon face"... or there could be other things involved such as swollen glands. Anyway, I'm so glad you are on the road to recovery, not that any of us gets completely clear of this disease or the threat of relapses, but as others have said, things can really improve and you can get most of your quality of life back. There are certainly some inspiring stories on here of people who have managed to do that. Best wishes!

[Alysia]

Welcome to the family, Jenny. Wow, you were on the edge... and back... tough way..... but you have made it and you will get better and better with the treatment. Sending prayers ♡♡♡

[Jennymfn]

Welcome to the family, Jenny. Wow, you were on the edge... and back... tough way..... but you have made it and you will get better and better with the treatment. Sending prayers ♡♡♡

Thank you alysia yes I fought my way back to my family and I'm praying everything is good news at my doctor appointment Tuesday..I appreciate all the prayers

[Gab122]

Thank you alysia yes I fought my way back to my family and I'm praying everything is good news at my doctor appointment Tuesday..I appreciate all the prayers

Hi Jenny,

Let us know how your appt goes tomorrow!

Gab