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Posted 6/17/2009 11:11 PM (GMT 0)
Unfortunately it is sounding like it was all for nothing. I am so angry I have been crying. (I cry when I'm angry) I would have much rather been here with you guys.

As most of you know I have been doing everything under the sun to get on the lung transplant list. After 30 or 40 different tests they finally got me into the rheumy. I had been to the rheumy before and he thought it might be scleroderma. But he didn't give me any possitive or neg. on it. Well today there were two dr. he called the other one in and asked where the machine was to look under my nails. He said you don't need it. They looked my hands. asked a few questions went through my other tests and said Well carol you have scleroderma! Not the skin type so much as the organ type.

He said he had no choice to report to my transplant team that I would be a high risk for a transplant. He suggested they do a history on how successful a transplant would be on a patient with scleroderma.

They have put me through hell for the past 5 months and I've had it. No more tests. He gave me a shot in my arm and sent me to the hospital for a shoulder xray. People are telling me to think possitive that it still possible. I'm tired of trying to be tough and possitive. They don't what it's like. Why would any transplant team want to put a good lung in someone who as a body that is just going to destroy it.

Ok well after I get done destroying my pillows and screaming my head off I will come back and try to be a support to others. I have to be able to be worth something to someone. cry

love ya

Posted 6/17/2009 11:39 PM (GMT 0)
Carol,

You poor dear. What devastating news. I hate to hear that your got another diagnosis, and scleroderma can be a tough one. Don't fret over all the tests you've had run - it just gives everyone a complete picture of your medical conditions and your health.

Scream and cry all you want.

Did you have a birthday yesterday? Or have I lost my mind once agin. If you did, I hope it was better than today was.

Hang in there friend. I know just what you meant be being tired of trying to be tough and positive. You're always such great support to everyone here. Now let us try to prop you up for a while.

Many gentle huggies Carol.

Love,

Pat
Posted 6/18/2009 12:18 AM (GMT 0)
I am so very sorry that you are having such a hard time right now. I just wanted you to know that you are worth something to me. I haven't been on this forum that long, but I've been around long enough to know what a big part of it you are.  People like you are what makes this forum such a nice place to be. Even at your wits end your still thinking of others....which is so selfless and inspiring. You will be in my thoughts and prayers. :) Mellissa
Posted 6/18/2009 12:32 AM (GMT 0)
Oh Carol I am so sorry ((((hugs)))). I know you have been through a lot lately but like Pat said it gave your doctors a better look at your health and you may be a help to someone else. I think everything happens for a reason! Hang in there sis, scream, cry and pitch a fit smhair you need to get it all out. Love ya!
Posted 6/18/2009 12:59 AM (GMT 0)
Carol...when I read you post, I was in tears. I feel so bad for you. Things just don't seem to be getting any better for you! Please know I and many people are praying for you! Please keep us updated and if your birthday was yesterday....HAPPY BIRTHDAY!!!! Sorry the bday wishes are late.
Love ya and sending lots of hugs!!!
Posted 6/18/2009 2:17 AM (GMT 0)
Hi Patty,Mellissa, Stacy, Amy. Thank you guys for answering my post. I came home completely distraught and your encouragment went a long way to helping me get through the evening. Thanks for the birthday shouts too. Yes I was 52 yesterday. I was actually born on fathers day.

So my friend patty you were right both times. Yes it was my birthday and yes you are losing your mind turn . How's the kids doing or should I say how are you doing with the kids?

Catz how often do you have to get b12 injections? Do you do them yourself? I have to fast on monday and get a blood test tuesday because I'm anemic and my b12 isn't being obsorbed correctly. I'm already on the subliqal stuff or whatever you call it. Thank you for your kindness and your prayers.

Stacie, hey hun is that you with the red face and your hair sticking straight up? That's always the way I pictured you. yeah

Amy I didn't mean to make you cry but your prayers mean so much to me. As does the support.Thank you for the happy birthday it means alot especially since I only have one every 3 or 4 years. I hope you are doing ok. You are just to young to be sick!

 

thank you all so much

love you God bless

carol

Posted 6/18/2009 2:59 AM (GMT 0)
(((Carol))) I'm so sorry to hear about this. I can't imagine what you must be feeling. I'm keeping you in my prayers that there is an answer to all of this mess for you. I hope that they can find a way to make this happen for you. Also Happy Belated Birthday to you!
Posted 6/18/2009 3:10 AM (GMT 0)
Happy belated Birthday. I wish I could offer more than a friendly shoulder and my support. If you were closer I would have hubby drive me over so I could make you tea and tuck a warm blanket around you. I am always cold, even in summer, and I figure you might just be cold occassionally too. Perhaps the transplant doctor will go ahead with the transplant anyway, you are young enough that you deserve a lung no matter if your body is just going to destroy it too. Besides you are too important here to all of us so they have to give one to you. I really hope you have good news soon. Blessed Be.
Posted 6/18/2009 5:32 AM (GMT 0)

Hi Carol - can't sleep - realized I missed your post first time through.  I'm so sorry.  It seems like it took an awful long time to get the scleroderma dx - especially if that was going to put your transplant into a marginal category.  Sometimes things (doctors) just don't make sense, I guess.  I hope you found a way to move through some of your totally understandable outrage and frustration - better out than in..... yeah .  You are such a special person - so caring and compassionate about everyone on here, and somehow you manage to inject humor and support and good old common sense on every post, in spite of your own tough road.  Salt of the earth, I'd say, and clearly so very much more than the sum of your ailments.  I'm betting on you, girl!  smilewinkgrin   

Birthday (((hugs)))) and wishes for better days ahead.

Lucy 

Posted 6/18/2009 6:58 AM (GMT 0)

Hi ya Bab's, redrose,Lucy, Thank you ladies for taking out the time to lend me your support. I'm having a rough night sleeping so I wanted to write ya back.

Hey ya Babs my goodness girl I thought I stayed gone for a long time. I had seen you were back but I just couldn't get my body to cooperate with my brain. My brain said carol give her a shout and my body said shut up and lay down! Hum so what's up? I see you are taking a prenatal vitamin? Did I completely miss somthing important here? what gives. I need information confused

Hey redrose, let me tell ya I freeze all the time too. I feel like my finger nails get frost bite. I went through your old posts a couple of days ago because I red one of your newest post mentioning a problem with inlaws. I was so sorry to hear the trouble with the baby and you must be horrified about what is going on. My ex DIL lipped on tile floor while carrying my 2 week old grandbaby. She was able to grab her foot but she still hit the floor. The baby had a cracked skull from one ear to the other. Of course child custody was called. Fortunately they didn't take the baby but things can happen so fast. Thank you for you kindwords and my prayers are with your family while this is going on.

Hey Lucy,Hey Ricky, sorry. Actually they just sent me to the rheumy. They put me through all the other tests first. But the rheumy they sent me to is one that I had been to before. So anyway he had written possible scleraderma in his old reports. It took him no time at all to say I have scleroderma this time. I feel like the transplant dr. had him against the wall. You know how hard it is to get a dx, well I don't think the rheumy wanted to be the one that missed a dx. So basicaly he realy is no more sure then the last time I was there it's just they pretty much wanted a decision. I mean I do have a lot of the symptoms but it isn't like he ran any more tests then he had before. I should have made them do my rheumy first before all these other tests. I feared this would happen.

Well girlfriend I hope you finally got to sleep and that is where I am headed. Oh I could tell you must have been really tired when you called me the "salt of the earth" LOL tongue but thank you and thank you for the happy b-day.

love to all

Posted 6/18/2009 3:39 PM (GMT 0)
Carol... No, nothing to share on that topic...not trying to go there, especially on MTX :). My doc likes her lupus patients to take prenatals because they have more of the vitamins we need like the calcium and folic acid than the regular vitamins. Yes I was gone for a long time and don't really have any excuses besides life happens. Went through the whole denial of being sick, stopped meds got really sick and eventually pulled myself together. I missed you and everyone here!
Posted 6/18/2009 8:53 PM (GMT 0)
Hi okie, I get the B-12 injections once a month they prescribed 1ml.  I can't absorb it either. Thankfully my husband gives my the shots, I just don't think I could do it. I had a stomach biopsy to rule out pernicious anemia as a cause for my deficiency. After the docs ruled that out they weren't concerned as to what has caused it. Have they looked at pernicious anemia as a cause for your anemia & b12? Hope your having a better day. Hugs, Mellissa

Posted 6/18/2009 9:18 PM (GMT 0)

Hi Mel, frankly i have never heard of it. In the past few month they have turned me upside down and inside out. But I will get into it and ask my dr if they have checked it or not.

thanks for the info. yeah I'm not the needle kind myself lol. but Good for your boyfriend!

hugs

Posted 6/18/2009 9:44 PM (GMT 0)
Carol, So sorry to hear such sad news. And you have been such a trooper through this entire process. I hope that all these tests point the way for some better treatments. Hugs and prayers coming your way.
Posted 6/18/2009 9:55 PM (GMT 0)

Oh thank you Fran. Do you feel bad enough for me to let me beat ya at trivia? smilewinkgrin I really just want to stop dealing with all those drs. and scans and stuff. It's been nice to spend a lot of time on this sight today so I could catch up and keep all this stuff off my mind.

thanks for responding.

love ya

Posted 6/18/2009 10:40 PM (GMT 0)
Hi Carol.  I feel so badly for you and I know you're absolutely devastated. I haven't had half the tests you had and I still hate them. I think ur right that ur rheumy was backed into a corner so he had to make the diagnosis. It just really sucks. And why did he have to tell u on ur b-day? Like the others, I hope u cried, yelled, vented, then cried some more. Carol, u are the salt of the earth and funny too. You deserve better. I love u Sweetie. Donna 

Posted 6/19/2009 3:42 PM (GMT 0)

Hi Donna, actually it was the day after my birthday to wish I though "Is this an indication of what this year is going to be like?" confused

I feel so left up in the air. The board hasn't flat out denied me but I don't have high hopes. I have tried to think possitive but when I keep hearing people tell me "carol think possitive you don't know what they are going to say" The heck with them let them think possitive. Well crud I need to stop dwelling on this or I'll get frustrated again. I gotta go take a shower so I can go swet at the PT classes.

love ya gal and have missed ya too!

Posted 6/21/2009 7:16 PM (GMT 0)
Carol,
No one really understands the horror of all the testing and how exhausting and painful it is when your that sick! I know you must be exasperated! I'm so sorry Carol. I am so very sorry. I'm going to spend some time in prayer just for you today. I know how it feels to feel like you've can't take any more! I am praying God will lend you His strength and grace to face today. Love ya, Judy
Posted 6/22/2009 3:45 AM (GMT 0)

Oh Judy, your a sweet heart. I am even getting where praying is getting hard for me. I'm not scared of dying I just am sick spending my time waiting and running around keeping appointments, My energy is very low. I have physical therapy /pulm therapy 3 days a week and I don't even want to go. I guess seeing a pschy dr. sooner then later would be a good idea. I went into my dr. and she asked how things were going and I just started crying. I'm just so tired. I know you know what I mean. We all got stuff going on.

I just want you to know how much I appreciate you and all the support I have here.

love carol

Posted 6/22/2009 4:34 AM (GMT 0)
I wish I could offer a cup of sleep or energy or both. Wouldn't that be cool if we could all borrow sleep and energy from others willing to share? I suggest seeing the psych for a stress outlet.
Posted 6/23/2009 3:06 AM (GMT 0)
Carol, I hope you at least finally get some real answers and real treatment. At least the burden of research is on them, and they have to do it. I also have heard of people changing transplant centers when they get news like this. Places like Mayo will often do transplants when others won't. I don't know what kind of option that is but I'm just saying, the fat lady (me?) hasn't sung yet. The testing is not for naught, it may prove invaluable in the future, you don't know, and if you do switch centers for some reason, you shouldn't have to go through all that, they may want to reread your biopsy slides, wantto see films and such.

I found a few things that seem to suggest that the idea that scleroderma patients are less optimal candidates for lung transplant may be ill-founded and that the outcome stats are the same. In the end its up to you, but I would definitely negotiate better rheumatological and pulmonary care through the transplant docs, get something out of the torture they putyou through.
http://www.ncbi.nlm.nih.gov/pubmed/16222454
One on stem cell transplant "for the sickest scleroderma patients"
http://www.scleroderma.org/medical/r&t_articles/Furst_2003.shtm

I'm so so sorry that things are going this way and you have been through so much. I hope that that injection helps and I'm glad to hear from you and that you are feeling well enough to be back. It just seems nothing can be easy anymore! Sorry haven't been on much.
I pray for you and think about you often, though I haven't been on much, having some problems.
Posted 6/24/2009 2:27 PM (GMT 0)

Hi Redrose and Marji, I'm sorry I didn't get back to you sooner I'm having some good days and bad days and the last couple just not so great. Don't ya just hate it when you are already to write a response and you have your figers on the keys and wham your mind goes blank! confused .

Redrose thank you, you are always there for me for moral support that and a cup of tea is all I need!I just wish there was something I could do with the terrible situation you are going through. I did find a dr. (pschy) in my area but I havn't made an appt. yet.

Marji, bless you heart! thank you so much for looking that up for me. I havn't looked at it yet but I will later today. I have physical/pulm. therapy in a couple of hours and need to take a shower before I go swet lol. Unfortunately the doctors that I went to are from the ones that the transplant team sent me to. and the good news is that the xray came back neg. for anything wrong with my shoulder the bad news is the shot didn't do anything. mad . The last time I got a shot like this it was in my back and helped right away. shakehead I don't get it.

Well I gotta get going. I'll let ya know what I get out of those links. I reallu appreciate you doing the reserch for me.

love ya guys

carol

Posted 6/25/2009 4:23 AM (GMT 0)
Might be that darn tendonitis. I was in tears, couldn't lift stuff or lift my arm over my head. Lasted a month and went away. All Mayo did was stick needles deep in themuscle and nerves and realy really hurt me for two hours straightpure torture they call and EMG--nerve conduction. Then told me it was the tendon, then about the levaquin. Love ya and am praying for you. Going on a church camp out this weekend. HopeI make it through. There's only one bathroom! I got my fingers crossed my bladder and bowels behave.;)
Posted 6/25/2009 12:00 PM (GMT 0)

Hey Carol,

I'm terribly sorry to hear your news.  If it's possible, I would recommend that you get a second opinion on the scleroderma (I know if you live rurally, that may not be possible).  My mother had the type of scleroderma that attacked the organs; I believe they called it scleroderma sans scleroderma (meaning scleroderma with just a few skin symptoms). 

It seems like a  nightmare with all of the testing you've had to go through, but I do know that things happen for a reason.  Hang tough, and know that we will be holding you close in our thoughts and prayers.

Elcamino

Posted 6/28/2009 4:33 AM (GMT 0)
Hi Carol,
Remember me? Emmie? Every now and then I check in here to be sure folks are hangin' in there. When I saw your post, I just had to respond.

I also have scleroderma. Knowing that you are in OK, I'm wondering if you could possibly try to get an appointment with Dr. Maureen Hayes. She is a "scleroderma expert" in TX, I cannot remember where right now. I'm sure a quick google would point you to her. It might be helpful in getting your lung disease treated properly. Cellcept is used now with good results with some types of lung problems in sclero. I was developing mild lung disease which has cleared up after being on cellcept for something else. That's not to say yours would since yours is so severe but..... My point is by seeing an expert who is truly up to date you have a better chance of getting the treatment that will give you the best quality of life.

Good reading up on all of you old timers and welcome to all of you new folks. Take care, all.

emmie
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