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Carole GibsonJoined this group yesterday and have lots of questions. I suddenly developed lymphedema in my right leg and it's severe. I've been hospitalized at my transplant center three times since October being treated with IV lasix which will bring down the... moreJoined this group yesterday and have lots of questions. I suddenly developed lymphedema in my right leg and it's severe. I've been hospitalized at my transplant center three times since October being treated with IV lasix which will bring down the swelling. However, only IV lasix works, oral doesn't do a thing. What kinds of treatments have others received and what works?
January 7, 2012
Steve Norton
Hi Carole, What seems to be the trigger for your swelling? Infections, blood clots? Lasix is usually used to draw off the extra water but is not a true treatment for lymphedema. What is your medical history briefly?
Carole GibsonSteve, I'm over 8 years post double lung transplant. Nobody can figure out why this has occurred though it could be an old (7 years old) DVT which is now nothing but scar tissue. The only lasix that really works is IV lasix but it was causing critical... moreSteve, I'm over 8 years post double lung transplant. Nobody can figure out why this has occurred though it could be an old (7 years old) DVT which is now nothing but scar tissue. The only lasix that really works is IV lasix but it was causing critical potassium levels so they stopped it in the hospital and now my oral lasix dosage as been reduced, not that it worked much. The lymphedema wraps have never really worked without the IV lasix. The PT said I was her only patient that didn't respond to the wrap. I now have a wrap for night and during the day can put on compression stockings but must wear an old fashioned garter belt to keep them from rolling and forming a tourniquet. My leg weighs an extra 35 lbs. I'm miserable, to say the least. less
Steve NortonCarole, I am unsure what could be underlying this problem but will need to research. Do you get pulmonary edema? Also is your heart function normal, any congestive heart failure in your history? Usually these really stubborn edema's where water pills are... moreCarole, I am unsure what could be underlying this problem but will need to research. Do you get pulmonary edema? Also is your heart function normal, any congestive heart failure in your history? Usually these really stubborn edema's where water pills are helpful come from the circulatory side. Kidneys and liver normal?
Carole GibsonSteve, that's the big mystery and why all my doctors are stumped. Nothing else is going on. My lung function is around 116% with no heart or other problems. My txp doctor - who I consider a total genius - told me I'm his first transplant patient to... moreSteve, that's the big mystery and why all my doctors are stumped. Nothing else is going on. My lung function is around 116% with no heart or other problems. My txp doctor - who I consider a total genius - told me I'm his first transplant patient to get lymphedema so he doesn't think it's a result of the transplant. His best guess is the old DVT. I've been to countless specialists in the past 6 months and am now getting ready to contact Vanderbuilt in Nashville to see if they have anything new to offer. less
Steve NortonEven if theres a history of DVT and swelling as a result, there should be some collateral blood flow unless its a major vein occluding the whole leg. Compression should address it adequately. Also DVT related swelling is not lymphedema but venous edema... moreEven if theres a history of DVT and swelling as a result, there should be some collateral blood flow unless its a major vein occluding the whole leg. Compression should address it adequately. Also DVT related swelling is not lymphedema but venous edema which responds well as I said to compression only. Lymphedema would involve your foot and probably toes creating a clay-like consistency when you push on it. The toes may change becoming square with dry, hard skin texture. With DVT history which we now would call post thrombotic syndrome or PTS (due to passage of time) you should have been wearing a stocking to prevent fluid accumulation. It is possible to develop lymphedema secondary to the PTS since it causes the lymphatics to work harder and wears them down but this takes years. Still compression with MLD Manual Lymph Drainage should help. HAve you had MLD too? During the lung surgery were veins harvested from the legs? I do not know that surgical protocol. less
Carole GibsonSteve, I was prescribed compression stockings a year before the lymphedema hit because of the DVT swelling and I wore them. Six months ago the swelling got out of control and the stockings no longer fit thus beginning the lymphedema saga. The lymphedema... moreSteve, I was prescribed compression stockings a year before the lymphedema hit because of the DVT swelling and I wore them. Six months ago the swelling got out of control and the stockings no longer fit thus beginning the lymphedema saga. The lymphedema goes from toes to the hip. I have to say the leg is not as huge as it was at the beginning but it's still very huge. I have not had MLD but have been shown how to do the massage but it's way too time consuming for me. Doctors assume the lymphedema is secondary to the PTS but know they will never be completely sure. No veins were harvested during surgery -strictly a lung transplant only. less
Carole Gibson
Oh yeah...spoke to Vanderbilt's lymphedema clinic and they have nothing new to offer me except the massage which would mean travelling 300 miles round trip twice a week - not gonna do it.
Steve NortonI understand your dilemma and wouldn't want to make you feel obligated to that kind of travel. A solid course of the proper therapy (CDT) including bandaging and MLD would be missing piece though since it always works when the therapist is well trained.... moreI understand your dilemma and wouldn't want to make you feel obligated to that kind of travel. A solid course of the proper therapy (CDT) including bandaging and MLD would be missing piece though since it always works when the therapist is well trained. Is there anyone you could stay with so that 2-3 weeks of intensive therapy could be undertaken? I also wonder if not at Vanderbilt, do you have friends anywhere in the country who would take you in? I have a vast network of trained therapists all over the country I could put you in touch with. Florida, NJ, NY, pretty much anywhere. less
Carole GibsonSteve, I've already had months of daily bandaging with a PT who has a PhD plus the PTs during my three stays in the hospital lately. I know I've had well-trained therapists, just not the massage therapy because it's too time consuming for hospital... moreSteve, I've already had months of daily bandaging with a PT who has a PhD plus the PTs during my three stays in the hospital lately. I know I've had well-trained therapists, just not the massage therapy because it's too time consuming for hospital personnel and the rehab company where I got the daily wraps (they just don't do it). I'm on disability with Medicare which only pays for so many PT sessions. Hospital physical therapists trained my boyfriend how to do the wrap during my last admission so he has taken over the night time wrap and I wear compression stockings during the day. I've requested my transplant doctors to rethink the IV lasix by trying a lower dosage and I'm waiting to hear about that. My next appointment there (Indianapolis) is late Jan so there's a chance they will admit me again and try one more time. What would 2-3 weeks of intensive therapy accomplish for the long run? Would the swelling go down and stay down without continuous therapy? less
