• Anonymous
      August 15, 2008 at 3:24 pm

      Hello to all, I haven’t been on the computer a lot in the last six weeks, since getting out of the hospital. I have a semi-perm port in now and will start receiving phresis treatments every other week, two treatments each time on Mon.
      The cardiac meds are keeping my heart mainly in a normal rhythm with freq spells of fast beats.
      My big issue is breathing and wondering if anyone else has had this issue.
      I get so short of breath with any activity. Moving in a chair can cause an epesode of shortness of breath. I am using the oxygen most of the time as MD ordered it.
      I just had a episode of CHF and am now back on diuretics. I do not have extra fluid at this time, some of the shortness of breath has eased, but contnues. Am thinking maybe i need a respiratory MD,
      ANyone’s thoughts or experiences would be most helpful to me.
      I am feeling very discouraged at this time. Treatments have had very little results, and more and more parts of mu body are breaking down and require treatment.
      Almost to the point, i should stop all treatment and just let the body do me in.
      MD’s say I have a lot of issues going on at once and we need to get some of them stable before going on to the next thing. Take care of the life threatening items first. I am so tired.
      Thanks a head of time for any and all info.

    • Anonymous
      August 15, 2008 at 9:16 pm

      Beth ~ please see a pulmonologist (respiratory specialist) asap. I had not a clue I needed one (I had a family doc that said “all in your head” 😡 ). I actually had a very rare lung disease with the GBS. Just don’t stop until you get answers. [I]AND[/I] please, please don’t “give up”. Most of us here know exactly what it feels like to be so tired, frustrated, and just plain overwhelmed. Keep fighting Gal; your family here cares and does understand. Right now you only have to do today. In the morning repeat that to yourself “I only have to do today”. Hugs, hugs, hugs.

    • Anonymous
      August 15, 2008 at 10:29 pm

      Beth, Let me echo what Judi has said. I don’t know enough about what is going on for you to comment but you need to keep on keepin’ on. As Judi said….work on just today.

      Sending you hugs as well and lots of prayers to go with them!

    • Anonymous
      August 15, 2008 at 10:48 pm

      Beth, Keep a positive attitude. You can get through this, look how far you have come Hun!!
      I still have resp issues, right now my dr is calling it chronic broncitis, because I’m very bronchil, and we aren’t positive what else is going on. Advair isn’t helping, and other meds didn’t work.
      You might want to keep a journal next to you and write down what you were doing when you became short of breath, time, and duration. It will help your pulm see what he is dealing with, and its easier then trying to remember everything on your own. I also have the shortness of breath, not from doing anything strenuous, because I can’t do that. Just bending over to tye my shoes does it, who would believe that.
      Like others have said, Just for today, you will look back and see how far you have gotten. Take care.

    • Anonymous
      August 16, 2008 at 6:12 am

      Hi Beth! So sorry to hear you are suffering so much and hope they can get you well again. I think I have to agree with the rest here! Seeing a Pulmonologist. I am on a Nebulizer with Abuterol but have asthma with mild COPD. Never had asthma a day in my life until I got Lupus. The asthma went into COPD. The Pulmonologist might be able to administer other meds that will help with breathing. Some neuropathies can cause a lack of oxygen to the blood vessels causing nerves and vessels in our lungs to constrict. Therefore causing the breathing problems or shortness of breath. But then some medications too can cause the shortness of breath. Finding out the reason is the best answer. Hope you feel better soon and don’t give up at all! Fight this as much as you can! I know it’s hard to do when you get very sick and weak. Having one problem after another. Been there and it’s not fun! I will keep you in my prayers!

    • Anonymous
      August 16, 2008 at 2:41 pm

      Beth-Judi is right-see a pulmonologist. The tiredness you are feeling may also be from your heart medicines-your heart is working hard to help you–the CHF-continue the oxygen and diuretics-you may not see the swelling in your hands or feet but you may still have fluid in your lungs and around your heart that would make you short of breath and tired. Seeing the new doc would give you a “fresh pair of eyes” and he may change some meds or treatments around for you that will help you better-that is his speciality. Conserve your energy the best you can, eat foods that are easy to chew, wear clothes that are easy to get on and off, rest when you are tired…..stay positive that you will get better…the docs are right-they have to take care of your life threatening problems first, but get to the pulmo. doc as soon as you can, so he can help you. Take care. You are in my prayers Beth.

    • Anonymous
      August 17, 2008 at 10:46 am

      Beth, ditto what Emma said. The cardiac drugs can make you feel like a real dishrag, especially an ACEI. It does get better. Unfortunately, I do have a bunch of experience with CHF and respiratory issues. I was diagnosed with severe cardiomyopathy with clear coronaries 6 years ago. At that time I was transplant material, with an EF of 15%.

      I gradually got better heart wise and did not need a transplant, thank the Lord! But, the shortness of breath never went away. I was diagnosed with mild restrictive lung disease the same time as the CM. My CHF has mostly been well compensated, but the lung guy blamed the SOB on the heart, and the heart guy blamed it on the lungs. I DID have mild pulmonary hypertension, so it seemed for a couple of years that PH was to blame.

      Fast forward 4 more years and a zillion more tests, with right heart caths, several cardiopulm. stress tests and every blood test know to man for any autoimmune diseases, and we finally got an answer. Well at least we have PART of an answer!

      The pulmo finally had resp. muscle strength tests done in addition to the many regular PFT’s I had had done, and it showed significant resp. muscle weakness. I do not have paralyzed diaphragm, but severe bilateral weakness. The neuro initially suspected a mitochondrial myopathy b/c I have upper body weakness and it fits with the cardiomyopathy and my severe reflux. So I had a muscle biopsy done, which did not show a myopathy. Eventually I had an EMG of the diaphragm, and it showed an active demyelination and remyelination of the phrenic nerves bilaterally.

      So that’s where we are now. The neuro, from a university setting and a neuromusc. specialist, thinks I may have an atypical CIDP or possibly a multifocal motor neuropathy. From my research it seems that MMN can present initially with resp. muscle involvement. I do have some random other neuro things, but my right sided EMG and NCS were normal, and I have normal reflexes. I just finished my second round of empiric IVIG. I have been on oxygen at night for almost 5 years now, and as needed for 2 years. I started bipap 7 months ago (no sleep apnea)and it has made a huge difference in my energy level. I continue to get severe resp. muscle fatigue, especially out with friends and laughing and carrying on, which is a horrible feeling. The bipap gives my muscles a rest, but if I didn’t live alone and therefore don’t talk much, except to myself 😀 , I would need the o’s 24/7. Sometimes I have to go on the bipap during the day just to make it through. I DO NOT want to end up on the bipap or a vent 24/7! I desat to 85% within 30 seconds when lying flat and awake.

      Sooo, Beth, I would encourage you to see a pulmonologist asap, and get them to do the usual PFT’s plus the resp. strength ones. They are called MIP’s (maximal inspiratory pressure) and MEP’s (max expiratory pressure). Btw, my neuro now says my arrhythmias and CM are unrelated to the neuro stuff, and just bad luck!

      Speaking of bad luck, and totally off topic, I drove to northern lower Michigan Friday night and hit a deer on I-75! 😮 I managed to slam on the brakes when I saw her, but couldn’t avoid her and luckily the guy behind me didn’t hit me too! I am ok, but the car had to be towed. What a PIA! They had better get it fixed before I am due to drive back in 2 weeks!


    • Anonymous
      August 18, 2008 at 6:38 am

      Hang in there Buddy,
      yup life can definately ‘SUCK’ at times. With all this support around you and the great advise and positive thoughts from the forum here not to mention your hard work and constant determination i am sure you will get to a more optimal level of health. Hang in there Beth, let a crap day just be a crap day, but make sure EVERYDAY you find something to make you smile at least once!!!!! indulge in something pleasurable for yourself – you deserve it!
      Thinking of you and sending you lots of warm spring thoughts of positiveness and crisp yet warm rays of sunny hope for the days ahead!!! Yah the lambs are everywhere here and the daffodils and blossom in full glory. Each day, as hard as it is, is still a miracle. Take care and look forward to better days.
      All the best