Well it has been two years and two months since my liver transplant, and I seem to be doing fine, working 60 hour weeks and traveling quite a bit. However I should point out that people will treat you differently if they know you have had a transplant. My experience is that your employer may be afraid to send you far afield because of possible liability if you become ill while traveling on company business. Also if you advertise the fact that you have been ill, and have had a transplant, this may make you unattractive to potential employers. According to the ADA (Americans with Disabilities Act) an interested employer cannot ask about your health during an interview, but there are inexpensive background checking services available to anybody, and these reports will reveal your health status in the blink of an eye. So don't kid yourself that a potential employer doesn't know your health status. On the other hand, the ADA requires that your present employer accomodate whatever disability your transplant may have inflicted on you. Unfortunately even if you are fully functional, you may be misperceived as being semi-disabled. Technically I believe that anybody with a compromised immune system is considered legally disabled. People being treated for cancer are considered legally disabled, and I suppose there are many other diseases that would "qualify" the patient as being disabled. Even if you have a note from your doctor blessing any and all activities, your employer may not treat you (a transplant recipient) the same as a "regular" employee. So you may have to expend quite an effort educating your employer and co-workers, but don't expect them to fully understand your situation. I really don't know whether the better course is to reveal all to your employer, or tell nothing. You will have to decide the best policy for your particular circumstances.
I even received an unsolicited letter from the Social Security Administration telling me how much money I was entitled to receive monthly should I chose to apply for disability payments. Along with my private disability insurance however, the total stipend would only amount to perhaps half of my current earnings. Besides, I don't consider myself disabled, and would personally take offense if anybody were to suggest that I was impaired. Of course we all have good and bad days! But if you want to work and you can make a valuable contribution that somebody is willing to pay you for, I suggest that you resist the temptation to take the easy way out. "Doctor, I used to do the work of three people, and now I can only do the work of two, so would you certify my disability so I can sit at home and watch tv all day?" I don't think so!
I talked to the hematologist Friday Mar 6, 1998, and he said that my low platelet count was simply the result of having an enlarged spleen, which is common in liver patients, and not a big deal. All the other tests he performed for abnormal blood cells and various infections were negative. The platelets hide in the spleen until needed. My spleen became enlarged many years ago because blood flow was impeded by the old damaged liver, and re-routed itself disproportionately through the spleen (portal hypertension increased the pressure on the spleen walls). Post transplant the spleen usually shrinks closer to a normal size, but not always. My liver function tests are "mildly elevated," which is common post-transplant, and also not a big deal. The LFT numbers were higher for the 20 years I had PSC. My magnesium is low, which is a side-effect of the meds, and I am going to fix that with a dietary supplement the same way I fixed the low B12. What this all boils down to is the fact that I would like my numbers to be perfect, but the doctors say I am healthy enough, in fact healthier than most. In the words of one of my surgeons, "Grant, the enemy of good is better."
As far as travel is concerned, my doctors say all I have to beware of is bad water or food that may cause prolonged diarrhea, which could reduce my body's ability to absorb the oral medications I am supposed to take. My resting blood pressure has been normal since I began a half dose of a beta blocker, and the episodes of momentary blindness have not recurred. The drug-induced diabetes went away when we reduced the prednisolone. The ulcerative colitis has been under control for over a year. The trouble I got into about ten months post transplant was related to the ulcerative colitis -- my body was probably not absorbing the meds adequately because everything was passing through too quickly. However the serum prograf trough level was always within normal minimums, so the jury is still out on this explanation. In summary I guess you could say that the profession of medicine can often be reduced to a matter of plumbing, so as a patient interested in doing what is best for yourself you must sometimes think like a plumber, too.
Having a suppressed immune system in my case is different from most, since all my liver and other health problems came about because of an over-active immune system (my immune system ate my thyroid, then my liver, and then started on my intestines). Having an over-active immune system probably explains why I have only had one cold in the 26 months since my transplant. My immune system is suppressed in order to prevent organ rejection, but is still better than most people's judging from my history. For example, I was exposed to influenza when every member of my family had it recently, but I never caught it. And except for the ulcerative colitis, which is now suppressed, I wasn't kidding when I said I have only had one cold in the last two years.
I need to run my blood labs once every 6 weeks or so at this time. Survival two years post transplant indicates the chances of long term survival are very good. I still owe Baylor money, so I imagine they will take care of me! Anyway, I hope all of you who have been in contact with me over the years can take a bit of encouragement from my survival story. I love hearing from you guys, so keep in touch. As you know I don't hold anything back -- ask me anything, and I'll do whatever I can to get you the nitty gritty facts. You are your best advocate, and the more you know, the better prepared you will be.
Here is the text of my latest abdomenal sonogram report dated 2/20/98 -- Clinical History: A 48 year old male 2 years status post liver transplant with thrombocytopenia. Findings: Evaluation of the liver and extrahepatic bile duct demonstrate pneumobilia. The liver otherwise has a normal texture and there is no evidence of focal mass lesion. The portal vein is patent and there is normal hepatopetal flow. There are normal waveforms in the hepatic veins and inferior vena cava. The hepatic artery demonstrates a resistive index of 70 to 73 percent. The spleen is enlarged and measures approximately 17.9 cm in the craniocaudal dimension. Both kidneys are normal in size, location and appearance. Evaluation of the pancreas is limited secondary to overlying bowel gas, however demonstrates no gross abnormality. Summary: 1) splenomegaly, 2) pneumobilia secondary to patient's history of roux-en-y, 3) hepatopetal flow and patent portal vein, 4) normal resistive index in hepatic artery.
Pneumobilia means gas in the biliary tree. This is common with people who have had a roux-en-y. Most liver transplant patients who were diagnosed with PSC have a roux-en-y, which is a direct connection between the liver and the intestines that replaces the common duct. Thus there is no sphincter of Odi at the ampula of vater to keep gas in the duodenum from refluxing into the biliary tree. What this means is that a patient with a roux-en-y may experience occasional RUQ pain if severe gas pressure builds up in the intestines. Personally I don't like the idea of intestinal junk backing up into my liver, but the experts claim it is not likely to cause problems, such as infection and liver inflammation (hepatitis). However, I would not rule out this cellar door as a possible source of trouble, and perhaps it might explain my chronically elevated LFTs. Perhaps somebody in the future will invent a trouble-free mechanical check-valve that can be installed at the time of transplant. A better solution would be to grow another common duct assembly in-situ, but I imagine such a medical advance will be a long time coming.
Here is the liver biopsy procedure dated 4-17-98: The right upper quadrant was prepped and draped in sterile fashion. A local anesthetic was applied to the skin and soft tissues above the biopsy site. Utilizing ultrasound guidance, two 18 gauge (G) Monopty-needle biopsies were obtained and tissue collected for pathologic evaluation. Patient tolerated the procedure well. No complication was identified.
Here is the surgical pathology report: Received are two pieces of mottled, tan-pink, soft, cylindrical tissue measuring together 1.1 x 0.2 x 0.1 cm. The specimen is totally processed. Sections reveal an adequate biopsy of liver. Focal mild portal lymphocytic infiltate is seen. No significant active piecemeal necrosis or significant portal fibrosis is seen. There is no evidence of rejection. Diagnosis: Liver, status post orthotopic liver transplant: Negative for rejection.