Liver Analysis

I was in to the clinic yesterday for more tests and spent 7 hours there. It was a snowy day, one of our cars is disabled, so my son drove me down and my wife picked me up. I met first with a liver specialist who reviewed my case and ordered a liver biopsy and paracentesis to treat my ascites (fluid buildup in my peritoneal cavity). They will also analyze the fluid extracted and relieve the pressure temporarily. No schedule yet on these tests. He mentioned that I have no evidence of hepatitis and my stool sample tests were all negative.

After a small lunch, I had a blood test which showed my liver function tests were still elevated, but other blood counts were ok. Instead of going back on Bactrim, I had a Pentamidine nebulizer treatment at the office to prevent microbial lung infections. I also have to collect 24 hour urine sample before my appointment next week. I have also switched from the warfarin to Lovenox for blood clotting prevention. This way I can stop Lovenox for a day prior to the invasive tests that I still need to have and avoid excessive bleeding.

After that I walked over to the hospital MRI lab for my MRCP (see last post), but had problems keeping my pants up as I walked. I look like a pregnant man with all the ascites fluid and need to find my old suspenders to hold up my pants. Anyway the MRCP took about a hour, requiring drinking of more contrast solution and an IV ofother stuff. They took at least 800 pictures and I must have held my breath about 30 times. They were supposed to do an MRV as well, but said that may be done another day after review of the MRCP.

Though I had diarrhea over the weekend, it let up Monday night and is still ok today. I was grateful I did not have to deal with that yesterday as well though I carried around supplies if I needed to clean up. What a relief, but I suspect there is more to come.

I will try to post again next Wed after my next appointment.
Happy New Year

Home again

I am home again and feeling somewhat better. My daughter had to pick me up at the hospital yesterday because my wife was heading to another emergency room to meet my son arriving with similar diarrhea problems. Not sure if we had some of the same bug or something, but he has recovered a lot faster than me. I still have loose stools, but can comfortably make it to the bathroom without messing up. I also ate a 6 inch Subway sandwich this evening so my appetite is back. I am still retaining fluid but on LASIX (furosemide) which seems to be helping. I am also taking Levaquin as an antibiotic to counter any bacterial infection that I might have.

It does not look like I will have a liver biopsy, but will have a number of other tests over the next three weeks. The main ones are an MRCP, an MRV, an EGD and extended 24 hr stool sample. The MRCP (Magnetic resonance cholangiopancreatography) is an MRI to visualise the biliary and pancreatic ducts and should tell us more about the functioning of the liver and pancreas. An MRV (Magnetic Resonance Venogram) is an MRI of liver and other abdomen veins. The EGD (Esophagogastroduodenoscopy) will check for esophageal varicose veins and take biopsies to check for GvHD in my upper GI track. The EGD will not happen until January 13th and is the one I feel will be most unpleasant but may mean the most. The MRCP and MRV are on December 30.

I will back in the BMT Clinic on Friday (26th) with the stool sample and another blood test. If anything changes then I will post, otherwise it will probably be next year before I report again.

Remember "the reason for the season" is Christ. Keep him in Christmas and have a Happy New Year.

Code Brown

I am writing this from the hospital where I was admitted early Saturday, December 20th.  This is titled "Code Brown" for the term they use here for diarrhea patients.  I had three bouts with it at home before my wife called the ambulance at 6am.  It continued every 1/2 hour until about 11am when they put in an anal catheter to catch the fluids into a bag.  I had good relief from all the mess until it started to back up in about 24 hrs.  Then I started wearing disposable diapers and now 50 hrs later it has just about cleared up.

Last week, I had three Dr appointments, many blood tests, an ultrasound of my abdomen and a complete torso CT scan.  I had to drink a barium solution with the CT scan and had diarrhea from the solution before and after the scan,

The current focus of study is of my liver, possibly complications of the iron buildup.  I may have to have a liver biopsy to check for cirrhosis.  My liver functions (blood test) are out of range.  I still have a lot of fluid buildup in my abdomen and around my lungs making it a little difficult to breath.

Since I started writing this about 4 hours ago, I have seen at least 3 more Drs.  Current thought is that I will go home after lunch and followup with some more out-patient tests tomorrow and see the Dr on Friday.  I will post here at least once more this week and more if anything develops.

Well, it looks like I will be home for Christmas anyway.  Remember the meaning of of Christmas and keep Christ in it.

Merry Christmas!

More GvHD

Just as I had about tapered off of prednisone, GvHD hit me again. I was on 2.5 mg every other day with a plan to drop off completely this week. But over the last month, I gradually started to feel more fatigue, nausea, loss of appetite, cramps, joint aches and breathlessness. I scheduled a Dr appointment for Monday where I discovered my Hemoglobin (Hgb) was down to 11.9 the lowest it has been for 14 months. Good news was that my platelets are up to 144, the highest it has been since my BMT 19 months ago. Before then my problems were too high platelets and too low Hgb. Normal range for platelets is 150-300 so that is not a problem now.

I also had a range of other tests: chest x-ray (ok), EKG (?), echo cardiogram (?), nose swab (?) and stool sample (ok). There was blood in my urine indicating hemolysis of my red blood cells and subsequent low Hgb. I saw the Dr again today and more blood tests were taken. I see him again on Tuesday. I wasn't supposed to see him for another month, but that was not to be.

In the meantime, I am back up on prednisone to 60 mg every day. After all the sleep I have been getting (13 hrs of last 24), I expect I will now be up until the wee hours of the morning. High doses of prednisone are known to do that until I run out of gas and crash.

Though I am anxious to get back to work, the last several weeks have shown that I was not ready. The Dr has indicated that we will review that possibility in May next year. By then, there may not be any jobs available though now I get at least one call a week.

As inspiration in this time of trouble, I was listening to CD titled "Be Still and Know" (Maranatha Music) which an 'angel' from our church gave me while I was in the hospital after my BMT. The CD has a track "My Beloved" which is narrated with a deep male voice symbolizing God. It goes "Our relationship is based on my faithfulness. Your faith may wax and wane, but my faithfulness endures forever. I will never let you go. So put your trust in me. In every situation remember these words. 'Don't be afraid! Just believe.' I know the plans I have for you. Plans to prosper you, not to harm you. Plans to give you hope in the future. But this will only happen if you put your hope in me, and live according to my word. Don't be afraid, just believe. That is your responsibility in our relationship. Believe that my love for you is unfailing. Believe and trust in my goodness. And when you get discouraged, quickly turn to me. Call out to me for help and I will deliver you from trouble. My faithfulness will be your shield and your fortress. I will fill you with joy and peace as you trust in me. So that you will overflow with hope by the power of my spirit. So don't be afraid! Just believe. ... When you hope in me, you will not be disappointed. ... Don't be afraid, just believe."