New-- my story!

[CarrieZ]

I have been reading everyone's Threads, comments, stories, etc the past month and have finally decided to share my own. I was diagnosed with WG January of 2012.

It all started in fall of 2011... i just was not feeling right. Felt like i ALWAYS had a stuffed up nose and itchy ears. Felt like i had a cold or allergies that would not go away. I was very active and working out all the time but i started feeling really tired and started getting terrible joint pain -- in my knees, elbows, ankles, back pain. Just terrible. I was also getting swollen in my feet/ankle area and has some itchy red bumps. I knew something was not right and for 4 months had Dr. appt after Dr. appt with my primary care. She did what she thought was every blood test imaginable but nothing was coming up positive. I was so frustrated.

I went away on vacation for the new year with my family and did not feel great the entire trip. Once back home it got worse and 1 week into January on a friday night i could hardly walk my feet hurt so much. By that Saturday afternoon/night i felt as if i was having asthma and could not breathe right. By Saturday night i was coughing up blood. it was horrible. Sunday morning i was at the ER and by Monday I was diagnosed with WG due to the blood work as well as a biopsy they did one on of the red sores on my leg. By that Monday afternoon i was starting 60mg of Pred by IV. That Wednesday was my first treatment of RTX. I had 4 weeks of RTX/ 1 day a week. I was in the hospital for 7 days--- the longest 7 days of my life. When i did go home i was home and not working for about 3 weeks... but slowly i have started to feel like myself again.

I live in CT and was at Greenwich Hospital. I went into NYC a couple of weeks ago to see Dr. Spiera (a WG specialist) and it was so reassuring to hear him tell me that everything my Drs. did while at Greenwich Hospital was perfect and what he would have done himself in terms if treatment, time, tests, etc. My lungs and sinuses were what was the worst. did not have the kidney failure. my lungs are back to normal, my sinuses are feeling great, i am back to work full time, working out, really cant believe that 2 months ago the place i was in and where i am now. i feel very fortunate but also scared of if? when? will it come back. I am now down to 12.5 mg of PRED a day and on Bactrum. I am VERY thankful for the RTX treatment as I am a 28 yr old female and still hope to be able to have children in a couple years.

For now I see my Dr. once a month and that has been suggested forever. Have my blood drawn each month and just check in. So far so good.... but like i said i feel nervous about will it come back?????

I get married in August and in talking about the honeymoon i even feel nervous about leaving the country-- is this normal? do others have anxiety about these things?

Happy to finally share my story and so happy to have found this forum and be able to connect with others going through the same things as i am.

[annekat]

Welcome, Carrie, and congrats on your seemingly quick recovery. I'm glad to hear you got in with the right doctors early in the game and are doing so well. Of course, if you have been reading the forum for a month, you know all about how sneaky Wegs is and all of that. So I'll just say welcome, again, and keep joining in on the forum! I look forward to hearing more.

[Al]

Thanks for sharing your story, Carrie. Reading your narrative, I was worried that you were going to say that your kidneys had failed, what with the edema and back pain. But it sounds like you have weathered all this pretty well, considering what it is that you have weathered!

The only thing I can say about your travel plans is to watch where you go. Live-virus vaccinations (like for yellow fever) are highly discouraged for anyone whose immune systems are suppressed. Also, be very aware of sanitation and hygiene, as you are more prone to infections of all kinds. Otherwise, there is no reason not to live a normal life. As for the future, that is, of course, unknown (that is why it i in the future, after all!). Yet it is true that there is no actual cure at this time for WG, and most of us had more than a one-off flare. But you are young and apparently very strong. My personal advice to watchful but live your life.

Al

[mishb]

Welcome to the forum carriez. I am glad you have found it and I hope it can be of help to you in your journeys.

I am so glad that your doctors were on top of your care straight away and I pray that your 7 days of hell are the only ones you will ever go through with this illness.

I have travelled a few times, even while waiting for a proper diagnosis and there is no reason why you can't travel. Make sure you have the right travel insurance and also avoid the things that Al has mentioned. I travelled to Fiji whilst quite unwell and thankfully (whilst others have been sick due to poor sanitation and food handling guidelines) I was okay.

Take care, and .........

[Dryhill]

Carrie, welcome to forum and to this most exclusive of diseases. I am glad that you seem to be making such a swift recovery from what can be a very nasty illness.

As for your honeymoon, yes avoid going anywhere that requires you to have life-virus vaccinations and do be careful about hygene. As a taxi driver I am constamtly handling money and make sure before I eat anything to use an anti-bacterial hand wash. The latter are readily availbale in most supermarkets and chemists (I think you call them drug stores).

Oh by the way congratulations on your forth coming wedding.

Jim

[Dirty Don]

Welcome CarrieZ, thanks for sharing & welcome to the 'club' as it may be. Sounds like you are fortunate in catching the affectations of WG early...good on you! But, it is & will be with you, for now, for a very long time. So, as Al suggests, be wary but not anxious over it. Anxiety is natural in these cases, but that can be dealt with thru your own strength and determinations, and/or really good drugs & therapies. I am on Lexapro, and keep Xanax as a back up...not something I would choose, but they work and keep any anxieties I may endure to a minimum at worst. Good luck.

[Jaha]

Thank you for sharing your story Carrie. Welcome to the most valuable place for information you'll ever find. You really were forunate to have a local hospital caught the dx so quickly. My local hospital never did get it. It took me 7months after getting very sick and then referring myself to Cleveland Clinic to get dx'ed and treated. Glad you are doing so well.
Jana

[Debbie C]

Hi Carrie...I'm new here also but I really get alot out of reading other peoples stories and learning so much more than I did.Why were you in the hosp. for 7 days ..was it due to the rtx?

[Lightwarrior]

Welcome to our forum and congratulations on your upcoming wedding. I agree with Al's great advice. Life is a gift that is meant to be used, so... live!! Most flares mimic your original symptoms so watch for those. Stick with Dr. Spires.

[Sangye]

Hi Carrie, welcome! Wow, I cannot believe how fast you've recovered. While the recovery rate is highly variable (as well as the degree of recovery), there are very few people who reach your point of function so quickly with lung involvement. I'm 6 years into this and am nowhere near that--not even the same universe! LOL

Wegs doesn't ever go away, but it can sometimes go into remission for a long time. Flares are a concern for everyone. Take good care of yourself, follow Dr Spiera's instructions, stay vigilant but not paranoid, and enjoy your good health while you have it.