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Biomarker for Diffuse Scleroderma skin has been discovered!


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A less than stellar year so far!


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#1 Jeannie McClelland

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Posted 11 June 2012 - 01:45 PM

Seems like forever since I have posted anything on the Forums. It's been an interesting year so far~

One the 3rd of January I had the ACDF (anterior cervical discectomy and fusion) of 4 cervical disks. It went like a dream: virtually no pain and a hospital room like one in a very good spa. I am thrilled by the results, it did everything promised and the recovery was swift and easy, so much so that I was cleared to go abroad in February, a month after the surgery. We spent 3 weeks 'divvied' up between Zurich, London, and our old home ground, the West Riding of Yorkshire. We had a chance to catch up with friends and I actually got to meet Joelf, Amanda, and their other halves in the flesh! We spent a wonderful afternoon and evening with them and I'll treasure the memories forever.

We flew home on 20 February, spending a 5-hour layover with #1 son and his family. Unpacking and get the household woken up and running on schedule again took a few days, but I have to say, I was thinking more about the imminent arrival of our new granddaughter, scheduled for 27 February, than the state of the larder or housekeeping! On Sunday, the 26th, I woke up feeling more tired than usual and attributed it to jet lag. I decided to spend the day tucked up in bed, sorting out a troublesome piece of knitting. However, by late afternoon I was feeling decidedly rocky and thought I had better go to the ER (A&E) and get checked out, just in case I'd caught something I wouldn't want to take to the Maternity Ward the next day.

I remember seeing the ER doctor and being told I had a dangerously high fever and then nothing else for over two weeks. Our local hospital transferred me to a regional trauma hospital's ICU, fortunately affiliated with the Center of Excellence where I get my scleroderma care. That close liaison probably saved my life. I had caught a 'super-bug', a virulent strain of streptococcal pneumonia which rapidly turned septic. During the 2 weeks I spent on life support, the doctors managed to confirm all the medications I had listed as allergies and add a few more. I had several anaphylactic shock reactions to the meds and combined with the sepsis from the pneumonia, developed septic shock, which further complicated matters. Added to the pulmonary fibrosis from the scleroderma, things were looking grim. For two weeks, they kept telling my family to prepare for the worst.

When I was finally able to breath on my own and they had the pneumonia and sepsis licked, they 'woke' me up. That was a shocker: I had virtually no speech, had little or no feeling in my arms and legs, couldn't write or type intelligibly, and I didn't know it until a day later, had no swallow. My lungs had taken a real hit and I needed to be on O2 continuously. I had developed 'post critical illness polyneuromyopathy' or CIP/CIM for short.

It's now nearly 3 months since I was discharged (the doctors were not thrilled when I insisted on being discharged). I still have no swallow and my speech seems to vary from day to day. I have a lot of pain in my arms and some in my legs. I lost a significant amount of lung capacity and my diaphragm is weakened. My stamina is vastly reduced.

I have to tell you, getting all your food and drink via a PEG tube (directly into the stomach), is not satisfying. Remember my post a while back about how my rheumatologist had wanted me to lose 50 pounds? Well, I have done it. That counts as a silver lining, as does having to shop for an entire new wardrobe! Woohoo!!!

I'm mending, but have added to my '-ologist' list: neurologist, speech pathologist, otolaryngoloists (2 of them). I've been keeping my regular Ologists busy too - wouldn't them want to feel left out! There are more tests and treatments in store and later this month I have an intake appointment at a dysphagia (swallowing) center. I fantasize every day about what my first meal is going to be. I'm torn between cheese and garlic loaded mashed potatoes or a good greasy burger and fries! They'd better get my swallow back soon or I am going to be a real danger to the first person to stroll past me with a bag of popcorn.

Good news? The new grandbaby is a real honey and a very easy baby to boot. Her mama snuck her into the ICU to see me. That visit was worth a ton of pills and potions. I get quality time with her every week and no matter how down in the dumps I feel, she always cheers me up.

Jeannie
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#2 Joelf

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Posted 11 June 2012 - 02:15 PM

Hi Jeannie,

How fantastic that you're back in the land of the living and able to post again! What a dreadful disease to contract, no fun for you certainly and awful for the rest of your family and as for your poor husband......? It shows how resilient you must be to be able to come back so well from it.

I'm more pleased and relieved than I can say to see that you're doing so well and on the positive side, what a bonus to lose 50 pounds...... I should be so lucky!!! Tell me, can they feed gin and tonic through a PEG tube? ;) :lol:

My husband and myself were both thrilled to meet you and your husband and Amanda and Michael in the flesh and like you had a thoroughly enjoyable and happy time that day, the memory of which will stay with me forever.

My love and best wishes to you,

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#3 miocean

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Posted 11 June 2012 - 04:45 PM

Jeannie,
I read with increasing dismay your post. I was so happy earlier in this year to hear of the success of your spinal surgery and the lovely accommodations of your medical center. This post just made my mouth drop open.

I know a fact is a fact and it is sometimes unnecessary or fruitless to go back but I can't help but wonder how you picked up the "super bug...." There seem to be so many variables.

You are one of several people lately who have commented on how doctors have told them to lose weight and then a medical crisis comes along and does it for them. It is not a fun way to lose weight.

As usual, you've maintained your sense of humor and strength through all of this. Congratulations on your new granddaughter and I very happily for me but incredibly sadly for you hand over my "Most 'Ologists" Award (see Fun and Friendship for All.)

miocean
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#4 amberjolie

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Posted 11 June 2012 - 05:24 PM

Wow - what a frightening and difficult time for you and your family! I'm so glad you're over the danger, but I'm sorry to hear about the swallow and lung issues. I think I would be absolutely devastated if I couldn't eat; but then again, I suppose the whole "being alive" thing probably outweighs that, doesn't it? Glad you can see the silver lining in losing the weight!

Hope you're able to regain strength and your swallow soon!

#5 suze932

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Posted 12 June 2012 - 01:45 AM

Soooo sorry to hear your frightening news and your ongoing problems with swallow and lungs. It must be so distressing and worrying for you and your family. You seem to have been at the head of the queue when the list of Ologists was being handed out! However, enough already, no more queueing!

Your story has really touched me and just goes to show what a resilient lot of people we are.

Wishing you a return to some semblance of normality and ability to eat and improve daily.

Congratulations on the arrival of your new grandbaby.
:emoticons-i-care:
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#6 Snowbird

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Posted 12 June 2012 - 01:40 PM

Hi Jeannie

Yes, it's definitely so nice to have you back with us! I'm really sorry to hear that you've had such a difficult time though, my goodness, you were so ill. I'm glad to hear that you are on the mend now and I do hope your pain settles down soon for you.

:flowers:

Congratulations on the new grandbaby from me as well!
Sending good wishes your way!

#7 Amanda Thorpe

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Posted 12 June 2012 - 05:12 PM

Well hey there Jeannie! Check you out on the forums again! I have missed you so and may I say that as fabulous and longed for as meeting you and your devoted hubby was it doesn't make up for missing you here everyday.

I am glad you're recovering and hope you'll post more, not just so we can here what you're up to but so we can soak up your gentle humour, dignity and love.

Take care of yourself and post often. You, or Tony might want to have a look at Michael's blog or even mine! How things have changed lovely lady!
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#8 Sheryl

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Posted 13 June 2012 - 05:27 AM

Jeannie, I'm shocked at all your news. So very glad to hear that you are coming around once again. It is so much fun meeting some of our special Sclero friends isn't it. Keep that weight off. Don't go eating any greasy foods for awhile either. Keep your meals simple so your tummy can handle things once again. Fill up on healthy things and take advantage of the gift of living through all of this. Welcome Back.
Strength and Warmth,
Sheryl

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#9 annkd

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Posted 13 June 2012 - 07:21 AM

Hi Jeannie! I am so happy to see your post. It has been so long and the forum just isn't the same without you! I can not imagine what you have been through. You are one tough cookie :) I also want to congratulate you on the birth of your grand baby. How exciting and what a motivator to the healing process. Please keep us updated on your progress. Welcome back !! - Ann

#10 Sandy B

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Posted 15 June 2012 - 04:03 AM

Hi,

Just wanted to say welcome back after your mega time!!! You have certainly been through it the last few months and I hope you make a full recovery soon, but from what you say, it may just take a bit more time, so keep on smiling. Have missed your witty posts so it is good to have you back.

Regards

Sandy B

#11 Buttons

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Posted 15 June 2012 - 12:53 PM

HI Jeannie

So glad to see you back posting but was so surprised to hear what you have been through since your neck surgery. Look forward to hearing more from you.

Do take care

Buttons

#12 Shelley Ensz

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Posted 18 June 2012 - 11:44 AM

Hi Jeannie,

As you know, your health crisis sure gave me quite a fright and we were all really pulling for you, behind the scenes. Although you gave an excellent recap here, you still managed to skip over quite a lot. Your tenacity and determination are totally astounding!

It is so far beyond great to have you back with us in Sclero Land, I find it hard to muster the words for it. We've missed you terribly around here!!!

I hereby declare this a Happy For Jeannie Day, one that we can all celebrate to help offset a few terribly challenging months enduring things most of us find even hard to imagine. :happy-day:
:emoticons-group-hug:
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#13 miocean

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Posted 18 June 2012 - 08:37 PM

:happy-day: :happy-day: :happy-day:Happy Jeannie Day!!! :happy-day: :happy-day: :happy-day:
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#14 judyt

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Posted 18 June 2012 - 10:50 PM

Hi Jeannie,

I just want to join in and welcome you back on HAPPY FOR JEANNIE DAY!!!!!!!! JudyT

#15 Joelf

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Posted 19 June 2012 - 12:56 AM

:emoticons-line-dance: :happy-day: :emoticons-line-dance: :happy-day:

Happy For Jeannie Day!!!

:emoticons-yes:

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#16 lotokids9

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Posted 19 June 2012 - 11:52 AM

Wow, that is quite the experience. I am so glad to hear you are doing better.

#17 amberjolie

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Posted 19 June 2012 - 07:19 PM

Looks like for me, maybe a "Happy Belated for Jeannie day!"
:balloons: :happy-dance: :balloons:

#18 debonair susie

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Posted 26 June 2012 - 08:43 AM

Dearest Jeannie,

I am stunned, learning of the seriousness of the 'Super Bug' you contracted :crying: ... Liike miocean, my jaw dropped to the ground!
I just want to take this opportunity to remind you of how very special you are to SO many of us, here, on the Scleroderma Forum; as a community of folks that has gotten to know one another, (thanks to this awesome forum), some of us have gone beyond posting/chatting on the forum. I, for one, have forged friendships with very, very special ladies, with whom I am very proud to call FRIENDS and I count you as one among them, dear friend. Because of all you have done on this very forum, over the years (you and I became moderators at the same time, I want to let folks know, just in case they weren't aware :thank-you-2: ) and then you went beyond the call and took on even MORE responsiblity (which Jo has taken on), to keep all running so smoothly.
The sentiments of those expressed before me (on this thread of yours)...I echo. I am in awe of you and respect you so... You ARE "one tough cookie", as Ann said, but please know that we also realize the seriousness of all you have been/are going through and we are rooting for you and sending you ALL of the love, support, energy and :emoticon-hug: s that you have coming. We DO MISS your presence here SO much, but we will cherish any posts (this one, as well as any future ones) you are able to share.

I apologize for missing out on Happy Jeannie Day, but I just wanted to let you know.... We so appreciate your sharing and are SO very sorry you have been SO extremely ill, but hope you are able to "Conquer the Beast" and enjoy that precious grandbaby, as well as life, in a very special and wonderful way, my friend.
Special Hugs,

Susie Kraft
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#19 Jeannie McClelland

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Posted 10 July 2012 - 08:06 AM

I don't know how to thank you for all your kind words, good wishes, and keeping me in your thoughts! It seems I have now developed over-active tear glands!

Miocean, you asked if I had any idea where I caught the 'super-bug'. I spent a fair amount of time thinking about this and I think it was in Yorkshire. The family there had been sick just before I arrived and friends came down from Newcastle to see me and one of them was actively sick while she was visiting. I'd like to blame the idiot on the flight back to the USA who was in droplet range of me and didn't bother to cover his mouth during his frequent coughing bouts. Maybe it was him. Who knows? I sure didn't come up with any bright ideas that would guarantee no repeat performances!

It's now around 120 days since I came home from the hospital and there have been some ups and downs.

I have a partial swallow and the baby had better guard her rice cereal because I can eat it too. Well, actually, I can have anything from thickened liquids to pureed foods. Last night was my first 'solid' food: bangers, mash and beans. No bangers for me, but runny mash and thoroughly bashed beans were pretty wonderful. It's becoming a juggling act to balance nutrition / aspiration risk / and trying to keep the scleroderma-affected gut working. The great thing about the swallow coming back (other than the pleasure of eating) is that I can now take small pills by mouth, which means I will be able to restart Letairis for my pulmonary hypertension (PH).

The said PH seems to be progressing~ My last echocardiogram and BNP (a blood test that is an indictor of heart failure) weren't so hot. I'm experiencing more shortness of breath and more difficulty in keeping my O2 saturations high enough. I have PFT's tomorrow and it will be interesting to see the results. (This bit was the downside.)

On the upside, I finally made the decision to get my hair cut to a nice collar length bob that takes minutes to make presentable after a shower. Did you ever realize how much time, effort, and energy dealing with your hair takes? Too much! Better things to do, eh?

That's about it for now. We're enjoying some cooler weather after weeks of scorching hot and dry weather. You wouldn't believe what it is like when the temperature is 105F (41C) and 21% humidity! We even had some rain on the weekend which helped with all the smoke from the devastating wildfires and gave the firefighters a chance to make progress in containing the fires. We're in no danger here but we do get the smoke and there were days when the visibility was way down.

I hope everyone is having a great summer/winter (for all our friends down under) and staying healthy. Many warm hugs to you all.
Jeannie McClelland
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#20 judyt

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Posted 10 July 2012 - 03:53 PM

Hi Jeannie,
What a lovely long letter! So nice to hear you are on the 'mend' we might say. We have been reading about the devastating fires on the news and in the papers here - so sad for those affected. Our winter seems to be much colder than usual and with less rain - cold and clear with lovely sunny days in the North anyway.

Doesn't time fly by when you are having fun. All of a sudden you are talking about that new born being on rice cereal my goodness she will be starting school before we know it.

Love and best wishes to you from me
JudyT