Update on my transplant problems

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Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2009 11:26 AM (GMT -6)   
I apologize for not getting back to everyone about how I am doing. After a month in the hospital I have been pretty wiped out. Plus I have had to go to so many doctors since I have been home that I hurt alot.
First of all they took me off the steroids and I have very sore joints. However I don't have a choice if I want to get on the list. Now he wants me to get off the pain pills. So with no steroids and not pain meds I fear what will happen. My SIL had to put my blouse over my head for me because I can't raise my arms. sad
OK so the doctor has decided to put me on 3 months of pulmonary rehab 3 days a week. He is still putting me through all the test . I have gained so much weight since I moved here. I'm up to 200 lbs. He said I have to lose 30 before he sees me again.
So the plan he has is if the rehab works and thelosing weight works,( he also wants me to get down to 118lbs!) So do I but I can't see it happening. He whole idea is that if I get through the therapy and lose weight and continue with all the tests I need that I will be in better condition for a transplant.
He wants to try to wait for 2 years before I have it. I have good and bad feeling about that. The bad part is that I don't want to stay hooked up to these machines the good part is that there is no guerantees with transplants. 7 to 10 % of lung transplant patients die within 2 or 3 months. There is no guarentees with transplants. I could live 3 months 3 years, 30 years. With the Doctor first started looking at me he said I didn't have Lupus. By the time he got done reading my history he said I do. confused He looked at my back to hear my breath and saw the vessles all over it. We discussed my esophgus and a bunch of other things and decided he wants me to see another rheumy. I told him I don't want to have Lupus cause I was told I could have a transplant if I did. He said Carol you are a human being. We look at you first and decide if your quality of life will improve. We don't treat you like a number. There are lots of things that go into our decision.
I just had a cat scan of my neck done yesterday. I had to have my ceroded(sp) artery in my neck done. It's thinner than it should be but not that bad. I had my kidneys and blatter ultra sounds yesterday too.
I still have a bunch of tests left but at least I will know every part of my body when they are done. Well anyway I apologize for taking so long to get back to you about all this. I am still struggeling with the loss of my dad. Their anniversary is the 26th. I'm thinking of sending my mom flowers. I wouldn't do it every year but since it's been such a short time since he passed?? I remember when my hubby past everyone was afraid of mentioning his name like that would help me to forget about him or somthing. They were trying to be kind though.
ok if you got this far you must really have brain fog!
love ya all
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 4/21/2009 11:31 AM (GMT -6)   
That's alot for you to digest at once. I know how you feel on the weight loss issue, what a battle when you are so deconditioned! I personally think sending your mom flowers on their anniversary is a sweet idea. You continue to be in my thoughts and prayers. Love ya, Judy

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/21/2009 8:51 PM (GMT -6)   
Hi Carol ((((((((((((hugs))))))))))))))),
Yes, that is a lot to digest isn't it? You're going through an awful lot Carol. I'm sending you massive hugs and lots of prayers.  I also think that sending your mom flowers is a good idea blush .
Love ya,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 4/22/2009 9:48 AM (GMT -6)   

You are one strong lady, girl. The surgeon sounds like a real human being. He wants you to lose 60% of your body weight??? Let's run off to a deserted island together and live off the land and we'll both lose that much weight.

How's the rehab going? Do you go to Enid, and if so, who takes you. I admire you for that because if I'd get off my behind and go to physical therapy that often I'd be in much better shape. And I know a woman who comes to your home to give private yoga lessons. This lethargy and fatigue keep me from doing so much and I know you feel the same way. Maybe you'll be my inspiration. I know how much better you sounded after the rehab in the hospital. Keep it up Carol!

Isn't this Oklahoma Spring something short of miraculous? If this doesn't lift your spirits, nothing will.

By the way, I'm 60 today. That's pretty miraculous too....but I don't know how it happened!

Hope you're having a good day.


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 4/22/2009 8:48 PM (GMT -6)   
Carol, you ARE one strong lady! You have so much going on and all you can do is take one day at a time and keep the faith. Hang in there sis - love ya!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 4/22/2009 11:22 PM (GMT -6)   
Carol, I know you will pull threw all this, the last thing you don't need is to worry about how much time you have, I hate to say that... but focus on yourself. I think about you and Barb. and all the stuff that has being happeing to both of you!! I hope taking you off your meds. don't give you alot of trouble. I will be praying for you!! Lots of Hugs

Patty.. Happy birthday time flys by when your having. Have a good day
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 4/23/2009 7:03 AM (GMT -6)   
Hi Carol, sheesh what hard time you are having. I'm so sorry to hear you have to face so much without steroids and pain meds. I truly can't imagine. shakehead I sometimes wonder "why" for many things. All I can say is that my heart is heavy for you and I am praying for you. Blessings, Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 4/23/2009 8:11 AM (GMT -6)   
(((((Carol))))) Thanks so much for the update. I know it took alot of effort to write all that. It's great that ur out of the hospital. I worry about u so. Do u still have ur dog? My pets r great company to me. I think it's very sweet of u to send ur mom flowers. As for the dieting, I had to fast for a colonoscopy in January and I've been trying to diet ever since. I was at 210 lbs and I'm now at 196. I've tried to diet so many times. I still cheat, but so far this time it's going well. I understand the doc wanting u to diet for the transplant. I met a young woman at a lupus function who had to have gastric bypass surgery so she could get a kidney transplant, but I know that's out of the question with ur current lung condition. I'm praying for u and sending lots of positive energy yeah   Love, Donna
Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 4/23/2009 9:04 PM (GMT -6)   
(((((Carol))))) I'm so glad you are home and taking it easy. I totally sympathize with the part about them saying you don't have lupus, looking at your history, then saying you do. They did the same with me at Mayo, after alienating my rheumatologist. Sometimes they just don't have explanations for why we are falling apart and then the autoimmune thing becomes convenient, if even accurate. I'm glad they are still considering you for the transplant anyway. Waiting is awful, but maybe they will come up with something better in the meantime, and they can only get better at doing them during the time. I can't even imagine what you are going through now, being hooked up to machines and all, and the weight loss thing and no pain meds, I can only pray for you. It all sounds extremely difficult and painful. Sometimes I wonder seriously if they realize what they are asking, I suppose they do, being transplant docs, but not fully, they don't feel it and live with it.

I'm praying for you and sending good thoughts your way and hope your kitten, who is probably no longer a kitten, is doing okay.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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