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 (http://www.algaecal.com/algaecal-ingredients/boron/boron-sources/)
Raisins and nuts are very high. Just need my Dr to prescribe some Cadbury's Fruit & Nut!:rolleyes1:

[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

[Pete]

You should be able to get hemastix at the drugstore. If not, they're available on Amazon.

I take my vitamin D as a combined calcium/D3 tablet at breakfast and supper time daily. If you've been on high dose pred for awhile, you may be developing osteopenia or osteoporosis.

[mrtmeo]

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 (http://www.algaecal.com/algaecal-ingredients/boron/boron-sources/)
Raisins and nuts are very high. Just need my Dr to prescribe some Cadbury's Fruit & Nut!:rolleyes1:

Here is a link to the study details.
Prunes May Prevent and Reverse Osteoporotic Bone Loss | Natural Medicine Journal (http://naturalmedicinejournal.com/journal/2012-07/prunes-may-prevent-and-reverse-osteoporotic-bone-loss)

[Carmen11]

Thanks ! I'm getting prunes ASAP !

[Jayne 14]

Welcome Carmen
This site is amazing , help & advice from people who totally get / understand what your going thro
Whenever I feel odd / low / weird I come here & learn its our crazy illness
I'm heavier too due to the pred - which I find hard
Prunes will help too if u get constipated too !!!
You are not alone xx


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[Carmen11]

Thank you Jayne , I can already say I feel a lot more sane knowing I'm not alone. I know my family loves me but they seem to think I'm just complaining to be the center of attention. They have no idea how hard this is and much how the side effects of the meds contribute to everything. I know they have their own problems and work , etc, etc, but sometimes they are so hurtful with the way they respond to me. I don't wish this is anyone but sometimes I wish they could step in my shoes just for day.. then maybe they'd realize I'm not exaggerating. I'm single and don't have a partner and my parents are deceased . I have three sisters who are all married and they were there EVERYDAY when I went through my hospitalization , but now that I'm home it's like they think I'm better..and just dragging this on .

[Jayne 14]

My situation has never gotten as bad as I C U / thank god , but over & over you hear people on here saying all they get is " u don't look sick " so I'm not Suprised u feel like that
But this is a tough tough road to follow - so - don't be so hard on yourself
I'm wide awake - horrific heartburn - feeling sorry for myself . Truly I hear you - we don't drag it on for the fun !!!!
Hugs x


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[Debbie C]

Hi Carmen,well now you have a "new family" and believe me we totally get it. Pred can be our best friend and our worst enemy. Sorry to hear all you went thru but thank God they didn't have to go through with the funeral.I hope you have drs. that are highly experienced with wegeners. This site is worldwide,so there is always someone on here if you ever need to talk,rant,cry..whatever. Oh and by the way..things will get better:hug2:

[Carmen11]

All of you have given me hope .. something that I had let fade , but I feel validated now and realize I should have became a member sooner . Thank you soooo much !

[Carmen11]

Why are you having heartburn ? About a few months ago , I had to have my gall bladder removed , it all started with severe heartburn , it turned out I had stones , so they ended of removing my gall bladder. Hopefully yours isn't stones . I'm sending you a virtual hug and I hope you feel better asap !

[annekat]

Welcome to the forum, Carmen. Your initial severe episode with WG was a little worse than mine, though I did have severe lung involvement which was cleared up pretty fast with oral CTX. I have not had any collapsed lungs or kidney involvement, so far. We never know what could happen in the future. I've had a couple of minor flares since I was dx'ed in 2011 but they were nothing like the original severe episode. What we have in common is the sinus and ear involvement, which does have a tendency to go on for quite awhile, especially if damage has occurred to those structures and to the eustachian tubes that connect the ears to the back of the throat, below the nasal cavity. I'm doing a lot better overall but still have some issues with dizziness and the ears' inability to drain and I have probably permanent hearing loss. To answer your question, as the others have said, YES, it gets better, and it takes longer for some than for others. Every case is a little different. Just keep reading the forum, asking any questions or sharing experiences, and searching the archives, and you will learn a lot. This forum has been a sanity saver and possibly a life saver for me and I'm sure others would say the same thing. It is a first rate group of people, and I'm glad you have found us and joined us.

[Carmen11]

I can't say it enough that I am already feeling like I'm NOT alone and that there people out there who do understand and this validates my worries and gives me a lot of hope. I know I'll sleep better tonight just knowing I can come here and get the comfort I need .

Thank you sooo much =-)

[me2]

Hi Carmen,
Welcome to our merry little band. You certainly have been through the ringer- and in a short time. All parts of your story are familiar to someone here and all of us can relate to most of it.

My own story is very long. But that's a good thing. hahaha Now I sound like the Martha Stewart of Wegener's.

Seriously though, I can say that many here have suffered very serious illness and gone on to recover and lead happy and healthy lives. I was sick about 36 years ago and went to the hospital. I was extremely ill and came close to checking out.
Cytoxan was the main treatment back then and after almost two years of taking it daily I achieved a drug free remission.
This remission lasted about 20 years and then I got sick again.

Everybody's story here is the same in some ways but also unique. Since I first began this journey I have seen great advances in treatment and also in the education of doctors about this disease.

The invention of the internet cannot be overstated as a plus for those of us with this illness. Before the internet I could not find information and I had no one to talk to who had the same illness as myself. I was very lucky to find the Vasculitis Foundation when the internet came along and the first person I ever talked to with Wegener's was Marilyn Samson- the founder of the Vasculitis Foundation. After that I went to several VF events and got to meet lots of WG patients and some of the top doctors in the field. What I am trying to convey is we can have as much interaction with other people who understand our condition as we want or need.

Thanks for joining us. I hope you get so much better that you are too busy to come here much- it does happen.

Which brings me to another idea. Since you are relatively new to the illness and to talking to other people here with WG don't be discouraged with the stories we tell. Most of us here have been very ill. What is more common is that people get well and don't look for a place like this. Wegener's is a very treatable illness now. The people that come here (like myself) tend to be those who have had lots of problems - don't let that scare you.

I bring this up because I remember when I first encountered other people with the illness I was shocked and scared at all the stories of things that went wrong. I thought they might happen to me. Well, each of us has a unique path with this illness. The other stories are great and valuable to hear but should not be a source of discouragement. Most people do quite well (even if they have been very ill) and this is the hope that you should keep for yourself.

[drz]

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

I think that our time at diagnosis is often our low point, especially when the diagnosis has been delayed and major organs like lungs and kidneys have been attacked and our survival was uncertain. It was for me.

Recovery can be slow process and only a few get back to their state before the Wegs dog got them (a drug free remission with no residual symptoms or damage), but our new "normal life" can become very rewarding after we accept and adjust to our new limitations and learn to enjoy and appreciate the life we still have now. Almost everyone does improve substantially with proper treatment after they finally get the correct diagnosis.

[Carmen11]

I am trying to adjust to my new normal , but now that I'm being tapered from pred and starting the Cell Cept my new normal is changing again . I'm having more aches and pain due to the high long term use of pred. I have AVN in my left hip and a while back I fell in the bath tub which is when I fractured my back ( compression fractures ) . They seems to move around in different areas of my back and sometimes it feels like it's in my sternum which makes it even harder to breathe. It's keeping me from being able to exercise or rehab. I'm just scared I'll never be able to do anything remotely athletic . I played soccer almost all my life and now I can barely walk sometimes . It's very frustrating .. I kinda feel like a loser laying around and not doing much. Of course , I don't look anything like I used to , weight gain and I had to cut my hair due to the chemo . What if I'm alone the rest of my life ? Who's going to want this broken body ?

[drz]

I am trying to adjust to my new normal , but now that I'm being tapered from pred and starting the Cell Cept my new normal is changing again . I'm having more aches and pain due to the high long term use of pred. I have AVN in my left hip and a while back I fell in the bath tub which is when I fractured my back ( compression fractures ) . They seems to move around in different areas of my back and sometimes it feels like it's in my sternum which makes it even harder to breathe. It's keeping me from being able to exercise or rehab. I'm just scared I'll never be able to do anything remotely athletic . I played soccer almost all my life and now I can barely walk sometimes . It's very frustrating .. I kinda feel like a loser laying around and not doing much. Of course , I don't look anything like I used to , weight gain and I had to cut my hair due to the chemo . What if I'm alone the rest of my life ? Who's going to want this broken body ?

Wegs can have a negative impact on our body and its ability to function but this might be offset by improvements in your personality, increased patience and gratitude for life, more wisdom, better inner beauty and "soul".

I have lost a lot of physical function and gained a lot of weight but still feel over all I am a better person now with more to offer in a friendship than before my Wegs despite my high health maintenance issues.

[Dirty Don]

drz's on a roll today...the philosophy of WG...and he's right! It takes the abilities to adjust, wait, stick to it, try to stay positive, and most importantly, stay with your drug protocol. You'll get there...the hair, the weight, the 'why me', when will it be over...it's all a part of this illness. You have it, you deal with it, and your family and friends will see you in a new light, no matter how you may feel about yourself. Best to you.

[mishb]

Wow what a great bunch of people on here :hug3:

Hi Carmen and welcome to the clan.

I have been so busy at work lately that I have 2 pages of threads to catch up on:sad:

I'm so sorry for not welcoming you aboard sooner, but I see that you are in safe hands.
I'm glad you found us.