I’ve been fighting edema in my feet and legs since right after my transplant in early June. It’s been worse—way, way worse, if… well, those who know, know. The rest of you, enjoy your ignorance.
I can’t shed the last 10–20 pounds of fluid in my legs and and abdomen. Exercise and diuretics have worked some because my weight has dropped 10 lbs in about two weeks. The doctors think it should’ve come off faster or more completely, too. They have scheduled a “Hepatic Venogram” to examine where the inferior vena cava connects with the hepatic veins. If it is narrow, they will put in a stent right then to help the drainage of the lower extremities.
I realized tonight that I’m really a square. I acknowledge I was one in high school, but had a brief wild period during my “doctoral studies” in college. “Hey, a lot of people go to college for seven years.” “Yeah, they’re called doctors.”
Hell, I’m not even fun to myself. I used to be the rowdy one I college—always ready to do one more shot, and get a laugh at my own expense. I WAS Ron White in the 1990s.
Now, I feel like I need to kick my own ass. Twelve years of complete sobriety changes a guy. From one point of view, I can have a drink again. However, with all the meds I’m on, I shouldn’t. Also, I still have the genetic defect that caused the liver failure in the first place. My new liver doesn’t have it, so in that respect, I’m cured. However, liver tissue has a limited ability to regenerate. Strangely, if I damage the new liver with alcohol, drugs or a disease, it will repair, BUT from my defective stem cells. I would have a mix of old and new liver. In theory, I could get cirrhosis again.
(This is my interpretation of what I’ve researched.)
Soooo, 25 years later, I’m recovering in my old high school bedroom and pondering the next 25 years.
In my case I have several distinct “teams” that have overseen and collaborated on my care. (Surgery, Hepatology, Urinary, Renal). Urinary and Renal were fairly brief once the shock of the surgery subsided and those organs chilled out.
The surgery team is cautious about turning me loose to drive and full activity without meeting a few milestones in Liberal—something about narcotic painkillers. I wasn’t listening because the crow in my room kept arguing with a lizard about about peyote and its importance in the TV show “Longmire”.
The long term team is the Hepatology (liver) Team. I’ve been under their care since 2002 and will have them for life. They are pleased with my progress and the function of my new liver. It worked within seconds of being plumbed up and has been perfect.
The Infectious Disease Team hovered in the background growing cultures and monitoring me for infections. They sprang into action when a culture came back positive for a fungal infection in my abdomen. All hell broke loose when they found two additional and different infections of my urinary tract and blood. God bless my family and specifically my brother, Jim and my sister-in-law Becky for giving me the IVs every four hours, 24 hours a day for about 10 days in their home!
Sometimes, my memory is faulty or not detailed enough to connect past and present symptoms with. On my June 9 post called “Thoracentesis” http://thirteencrows.com/post/88341829564/thoracentesis I discuss fluid in my lung and the minor outpatient procedure to drain the lung.
I’ve had the similar symptoms since July 2nd or 3rd, but associated the labored breathing with the pain killers. I felt so bad on July 4 that we I had my family take me to the local ER. Unfortunately, I’m a little fuzzy if I had a chest x-Ray there or at KU Med after transfer, but no matter, they found fluid in my right lung. Since it was the weekend, again, I’ve been in KU Med since July 3, being observed, treated with diuretics, and honestly, getting stronger. My brother and sister-in-law are hopefully getting some rest over weekend since they aren’t getting up every four hours to hang a new IV.
I’ve been told I have a thoracentesis scheduled for Monday (7/7) morning. That will fix the shortness of breath, for a while at least. Keeping the ascites and edema off will stem any re-accumulation of lung fluid.
It will be nice to sleep a stretch longer than two hours without an anxiety attack!
Early in the transplant, I couldn’t sing the praises high enough of proper and strong pain medication. I still believe it! I wouldn’t have made it through the first week without them. I was on strong self administered doses of fentanyl as well as oral Oxycodone. There might’ve been a third but I was too loopy to care.
The doctors have to start weaning you off the self administered stuff that is the most addictive. I get that! I noticed a disturbing effect of these narc pain killers that I do not believe was withdrawl or allergy. They started making me short of breath and anxious. My O2 sats were normal, but I could “feel” I was panting and laboring for each breath.
Yesterday I ran out of Oxycodone and was prescribed Vicodin (Hydrocodone + Tylenol). Vicodin is weaker, according to my research. I decided to cut them in half anyway. I might take a 500 mg Tylenol if I experience pain. I don’t have any Tylenol 325 mg pills. The Vicodin are 5 mg of Hydrocodone and 325 mg Tylenol.
Maybe Oxycodone takes a very long time to clear the system? Maybe it was withdrawl? A little pain is much better than the helpless feeling of not being able to breathe.