Breathing/lung issues?

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 1/3/2009 3:44 PM (GMT -7)   
Well I'm 2 weeks from my first meeting about a lung transplant and I am getting nervous. I just don't think I will qualify. If you look at this link to the hospital where it says for adult lung transplant you will see some of the many tests. I'e had these test and they wern't good.
 
Anyway I was just wondering how many of you have or have had breathing problems? It just seems like lately there are a lot of people on here that have had trouble breathing. Also if you do have problems have they dx'd it?
 
thanks
 
love ya carol


 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 

Post Edited (okie) : 1/3/2009 3:47:50 PM (GMT-7)


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/3/2009 3:56 PM (GMT -7)   
Carol, I can't imagine how nervous you must be. I'll be praying that your tests come out in favor of you getting the transplant.

I don't have the severe breathing problems that you and some of the others here have. I get some shortness of breath but I know a lot of mine is from weight gain and being out of shape. My son who had juvenile arthritis has some breathing issues - shortness of breath and doesn't do as well as he should on the breathing tests. I think these autoimmune diseases can cause havoc anywhere. You've been in my thoughts a lot. Keep us updated when you are up to it. Lots of love and hugs and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/3/2009 4:07 PM (GMT -7)   
Awwww bless your heart hippi. I'm glad to see you are up and about just don't over do it. I had planned on doing a poll on here because it seem like there have been many problems. I don't know if you had heard that our sweet Barb is on o2 now.:(. and I know others are having it rough. I hope your boy doesn't get any worse with his breathing. I know he is active that should help some. Yeah I'm sure I could afford to loose a few lbs but the dr. said I have the lungs of an 80 year old. so the est I can do it pray and hope for a transplant and go to the gym try to work out a little bit.
take care sweetie
carol
 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/3/2009 5:47 PM (GMT -7)   
Hi Carol,

I have thought of you a lot lately as I know your meeting with the transplant team is coming near. I am sure with each passing day you must be growing more apprehensive. Please know that all of us on this board are praying for you and wishing for nothing but positive results for you and your meeting. I looked over the information on the website for the hospital and can totally understand how overwhelming the entire process can be. It appears the literally ensure that every part of your body is checked, from head to toe before they perform the transplant. I suppose that is not a bad idea, as they want to ensure other than the lungs the person is in relatively in good health.

I have been struggling with my breathing and going through pulmonary testing, heart echos and such, with the holidays I have yet to get any results back. I went to JC Penney just a while ago to get a couple of things and the experience was not pleasant, it took everything out of me. I became so short of breath it simply exhausted me. When I complain to of being short of breath I feel silly or even a little guilty because I know there are others out there such as yourself that are so much worse off than myself.

I know it is hard, but please try and put your mind at rest that everything will turn out just fine!

Keeping you in my thoughts and prayers!
Always,
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/3/2009 6:06 PM (GMT -7)   

Thank you Melissa, Yeah that list is quite overwhelming. shocked I appreciate your thoughts and prayers. I'm sorry you had such a rough time and penny's. Hopefully the summer months won't be as hard on you as the winter. It seems to work that way.

Please don't ever feel funny about talking about your breathing or anything else that is going on with you. You know it's not just a matter of weather you think it's a valid complaint or not. You are not just discussing what is going on with you. You just might have somthing to say that will help someone else. You have no idea how many times I have read some off hand remark that someone made on here just to have the idea flash on! We  help each other in ways that we don't even know when we join together and share what's going on.

Besides if you can't walk through the store without getting exhausted that is your body saying yeah Mel somthings wrong! Pay attention. I don't like that you are having theseproblems breathing. Have you seen a pulm? I can't remember. I trusted a reg. pcp with my lungs for 6 years. he said I had asthma. I went to a pulm. and he said throw out those meds you have copd. Your lungs are shot. Every time you get bronchitis penumonia anything invovling your lungs you do more damage. Damage that never heals.

LOL sorry I am jumping off the soap box now.

God bless and thank you for the prayers

carol


 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/3/2009 9:59 PM (GMT -7)   
Hi Carol ,
 
That's what I didn't understand, see I've been dealing with inflammation in my lungs and rib cage for several months now, I had no idea that could cause scarring in my lungs? I guess that's what has happened anyway. I don't know if I told you all or not, my memory these days, it's another issue, hehehe. Anyway, I was in the hospital in August for GI issues, while there I told my doctor I was having a hardtime with shortness of breath as well, he had an x-ray done and it showed some spots on my right lung, followed up with a CT w/o contrast and said everything was fine. So, I thought, well it was probably a shadow or something, who knows, didn't think too much of it, but the shortness of breath has continued. Well, my gp that used to see has returned to our clinic, so I switched back to her, I went to see her about a month ago and was really short of breath, she took it seriously and began sending me for x-rays, pulmonary testing, echos, etc. Since it's the holidays, I only know that I have scarring in my right lung, I haven't gotten anything back on the other tests yet, but she is at least working on this, she is also a very good friend and knows this is not like me to be like this.
 
So, for now, I haven't officially seen a pulmonary doctor, but I went to their office for testing. I'm sure my doc will set me up with one as soon as the results come back. She is very proactive. Had I stayed with the other guy heck, who knows, because now I have scarring which was probably there in August he just failed to catch it. I'm only 41 years old, I think he looked at me like I was making all of this up or something and didn't want to take it seriously, that's the only thing I can figure. He obviously is not educated in lupus, that is why I go to San Antonio (3hrs away) to a rheumatologist who is educated in the disease, but I can't do that for a gp, I don't have the energy for one thing.
 
Thanks for listen Carol, lord knows you don't need to bare my burden too, but it does feel good being able to talk to someone who can relate to what I'm going through. I appreciate this board more than anyone can ever know! You folks on here are just awesome! You lift me up when I'm at my lowest and bring a smile to my face just when I need it. Thank you.
 
Hugs and Prayers to you!
 
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/4/2009 8:39 AM (GMT -7)   
Hi Carol. I can't imagine the anxiety you must have about the transplant meeting, but you said something that made me think. I don't usually talk about the way I usually feel, 'cause I know you all have heard it before. Well, I've been short of breath (SOB!) since the onset of lupus. In 2007 I went to a pulmonologist who ordered lots of tests which were normal. I was so weak and SOB this summer that I was given one of those chemically induced stress tests which was also normal. So I don't know why I'm SOB, but my new year's resolution is to take a walk every day, no matter how short it is. I'll let you know if it helps being an SOB smilewinkgrin I sure wish all you needed to do was walk.  I'd really like it if you would keep us updated on how you're feeling emotionally. I think of you every day and you're in my prayers. (((Hugs Sweetie))) Love, Donna

Systemic Lupus ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS 
 CellCept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin,
actonel, tylenol arthritis, neurontin, phenegren,
flexeril, multi vit, C, flaxseed oil, acupuncture    Welcome to lupus where the strange is ordinary and nothing is normal :Donna
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/4/2009 11:30 AM (GMT -7)   
Carol,

Waiting is so hard. I know how important this meeting is to you and I've marked the date in my calendar so I'll be able to go with you. I'll take you out to eat afterwards and we'll do something fun. It will be great meeting you in person after having been friends for all these years. Let me know when and where.

Love,

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/4/2009 2:35 PM (GMT -7)   

Thanks everyone, I appreciate all of you. Donna I know the feeling of exhaustion from the breathing problems. in fact I have it right now. I have to lay down. I just wanted to give a quick shout. I will right more later.

Patty That would be great! I do have 4 people who want to go down there. Which the paper said I really needed all those who will support me. I know you will so please don't let that stop you. They are just my family and care giver. My caregiver and my brother is as goofy as I am. But the more support I have the better I'll feel since I will be to nervous to remember anything. Plus I know if they do run test I will be down there several times. I just pray to God I don't have Lupus in my lungs or that a high ANA won't stop me. If you want I'll tell my family to stay home lol. I'd rather meet you. I see them every day. I'm invisioning setting in class throwing spit balls. LOL

well I'm so tired I'm goofy,dopey and doc all at once.

write more later

love ya guys

carol


 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/4/2009 6:00 PM (GMT -7)   
Is your family going to be supportive of you? Do they finally believe that you're sick? I'll be anxious to meet them as well and get a feel for what you deal with at home, and am hopeful thay they are supportive. Lord knows you need someone to be!
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/4/2009 7:17 PM (GMT -7)   
HI Carol,
 
I've been away from the computer a few days, sorry I haven't been able to send my support your way sooner.  I'm glad you can have as many people as you want in the meeting with you.  Yes, I can picture you all making a lot of trouble, especially if Patty joins you smilewinkgrin . Hehe!
 
Let us know how we can best support you.  I know you want and need the prayers, so those are a given!  But anything else, just let us know okay!
 
Love
Ginny
 
 
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

34 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. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/5/2009 1:31 AM (GMT -7)   

Patty, good I'm glad the thought of them being there doesn't make you not want to come. I don't know how much help they are going to be. They said they want to be there. i have a sister that lives in florida that is my power of attorny should something happen. I asked my SIL to send her a fax from work of all my papers. She said she really didn't want to send her the papers because I had a DNR in there. It's not up to her. Anyway  you will meet them. But my bro is cool and my health care worker helps keep me sane. But yo are the only one that understands what living with the autoimmune problems is like.  You have been 1000 times more supportive to me. The last time we went to the doctor together I took them out to lunch afterwards and we got into a fight because she didn't like my attitude with my doctor. (that was a big help) shakehead . I'm just praying they get it this time. You will be a great support system for me that day.

Ginny if we get into trouble down there I will just blame it all on Patty. LOL. Thanks for taking up the mod job. I know you have a lot of your own problems and you are taking on a lot.

Hey Donna, if you don't have any improvment with walking after a couple of weeks you should probably talk to your pulm again. As for my emmotional well being I guess it just depends on what day it is. I know it's missing with my sleep. since it's 2 am and I didn't sleep last night either. dah lol. I get angry, I get sad, I get incredibly lonley sometimes and other times I just want to be left alone. As I said before dying doesn't scare me living like this scares me. I am greatful that this winter hasn't been as bad on me as the past 4 years. I think the permanent anti -b's are helping keep infections down. I also think the plaq. made a HUGE difference in my life. I'm going to start my diet tomorrow and start going to the gym tomorrow. even if I can only do 5 minutes working on my upper body strenth. There's no way I can do the tread mill. I know what you were talking about with the chemically induced test. Making your heart beat fast. That's a weird test isn't it?

Hey Melissa, Yeah that breathing test is a pain. Litterally. All my muscles hurt afterwards. and I needed a nap. I'm glad your dr. is taking this serious. Just remember the squeeky wheel gets the grease. Ya know the worse thing you can do is ignore it until it gets worse. I'm really interested in hearing your test results. Did you go in the machine that looks like a phone booth and take meds in between? or did you just blow into a machine setting a a table? Or was it at a hospital? You can have right side heart problems if your lungs get bad enough. I have what they call stiffening of the right side of my heart because it's hard to pump blood into my lungs. So I take inderal to slow down my heart beat and nitro spray if I get into trouble. Fortunately I have never had to use it. Oh I saw where you are 41. First of all I hate you! LOL tongue . No just kidding but I wanted you to know I was only 38 when istarted having trouble with my breathing. That's why they didn't take it seriously. They still say I am way to young to have these problems and I'm 51. So I just said that because they will look at you as though you can't possibly have lung problems at your age. I'm here to tell ya oh yes you can! well I reckon it's bedtime again.lol

love ya guys

carol


 
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,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/5/2009 3:52 PM (GMT -7)   
Hi Carol,

Don't know how you keep such a good attitude and humor girl with all this going on, but I'm glad to see you are! I guess it's the only thing that keeps us sane at times right? I read the stuff you wrote about your family, i.e. your SIL, it's amazing how they tend to put doctors on pedestals isn't it? You said she didn't like how you talked to your doctor at one appt, well, the doctor most likely deserved it! I don't know, I guess because we with lupus get pushed from doctor to doctor and so many of us either don't get believed ourselves about how we feel or read stories of how others are treated we tend to take the doctors down off of that pedelstal which is where they should be, they are human and many certainly should not be treated any differently than you and I, most have a terrible bedside manner.

The pulmonary testing I had done was in the phone booth type machine. They did give me the inhaler in between the testing to see if it made any difference, unfortunately, it did not. It burned a little bit, but made no difference in the testing what so ever. I have had issues with my heart for several years, actually before I was diagnosed with lupus. I have mitro valve prolapse. Also, have horrible family history of heart disease. Have a brother that died at 47 of massive heart attack, he had his first heart attack at 38. Another brother that had a massive heart attack at 29 which caused damage to his heart and caused him to be disabled and discharged from the Navy, he is just 3 years older than me. I am anxious to see the results from the heart echo to see if there is any change because I know my heart rate is up. This morning I checked my blood pressure and heart rate when I got out of the shower and got dressed, it was 116! They used to have me on heart medicine to control the heart rate, so I'm sure if nothing else I'll be heading back in that direction.

I appreciate you listen, I know you can relate and any advice you can give me is greatly appreciated.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/5/2009 8:00 PM (GMT -7)   
LOL Carol & Pat, you two may need adult supervision when you meet up ;-)

(((( Carol ))) I know you are nervous, I would be too. I am praying for you sis and trusting that God will bring you through this. Love ya!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
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)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/5/2009 10:50 PM (GMT -7)   
We just may make Carol's brother and sil run away.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

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