Tuesday, June 16, 2009

Back to normal

I have been home from the hospital for 5 days and everything is back to normal, at least the way it was before my bout with the Rotavirus. We even ate out at the Old Country Buffet tonight.

I had a short Dr appt this morning to get labs done and all blood counts were normal. Hgb was 15.4 and Hct was 45.3% so I can get back to my phlebotomies on Thursday. Platelet count was 167 and white cells was 10.9, both right in the normal range. Only my glucose level was high at 136, but that was right after breakfast. Before it was 91 and good.

I have an EGD endoscopy scheduled for Friday and an EMG of my legs scheduled for Monday. On Tuesday, I see the diabetes Dr again. Maybe I will find out if the numbness in my toes is due to the diabetes.

Thursday, June 11, 2009

Heading Home

The Drs were here this morning and said that I can go home after lunch. I had to see a dietician and have the IV removed from my jugular vein. I had a little scare after they removed the IV. It seemed like the solvent used to clean the bandage glue off my skin made me light-headed, flushed & hot and cough repeatedly. I called the nurse back, laid down for a while and everything cleared up

I will be on a restricted diet for a few weeks: no fats or lactose. My blood counts are coming back to normal and I have had several normal bowel movements. I am not scheduled to see the BMT Dr again until June 30, but may get back on phlebotomies before then.

I have been developing some numbness in my toes and had to cancel an appt with a neurologist last week. So I need to reschedule that appt and one for my orthopedist. Question is whether the numbness is related to my knee arthritis or the diabetes.

It may be a couple of weeks before my next post, but remember that you can sign up for automatic notification by using the "Atom" link on the lower right of this page. This has several options to keep updated on changes.

Tuesday, June 09, 2009

BRAT Diet

Well, it's another day and I get to eat additional foods. I have escalated to the BRAT level diet. No, not bratwurst, but bananas, rice, applesauce and toast with jelly in addition to the clear liquids that I was on yesterday. Seems like a smorgasbord in comparison!

I had a little scare yesterday when I thought there was blood in my stool. They took a test sample and said that it was just red dye from the berry gelatin that I ate earlier. I am pretty much back on my regular medications though some are still through IV. I don't take the Viokase since I am not eating any fats yet. My blood counts are a little low but not a concern. As expected my hematocrit was 35.7% where it would have to be over 38% for a phlebotomy. Hemoglobin was 12.2 g/dL where 13.3 to 17.7 is considered normal. Platelets were 101 where 150 to 450 is the normal range. Before my BMT, my platelet count was over 1000 and after it was down around 50 for many months.

After taking a shower yesterday, I was free of my IV for a while and took a walk through the skyway over to the Masonic Day Hospital. That was the location of most of my 90 blood transfusions prior to the BMT. Unfortunately, I didn't see many familiar faces since they have reduced staff over the last three years. I will continue to explore some more today.

Now just waiting for my bananas and toast to come. I think I will pass on the red dye gelatin (pun intended).

Monday, June 08, 2009

Liquid Diet

Never thought I would be glad to be on a clear liquid diet, but it is a big step up from the NPO. I had chicken broth, jello, flavored ice and apple juice a few hours ago. Drs will see how this goes today and maybe I can upgrade to a full liquid diet tomorrow. Then I can have a few soups, cream of "cereals", puddings, yogurt, etc. The IVs was turned down to 20 ml/hr last night, but I still had to get up every 90 minutes during the night. I must still be saturated. On a positive note, my kidneys are certainly working efficiently. During the day, the IV rate is turned back up to 250 ml/hr.

I have been on some medicine named Carimune, which is taken orally to get right to the source of my problem. The drug company does not show an oral version so I asked my Dr if this was experimental. It is a common variation that the pharmacist mixes up. Cost is $500 for 7.5 oz dose. At four doses per day over 3 days, the total cost is $6000. Certainly glad I have insurance.

I took several walks yesterday, one with my wife and one all by myself. I went down to the ground floor and played the piano near the back waiting room for 30 minutes. The piano was a little out of tune and I am a little rusty. Luckily, there were few people around. I don't think I will try that today with all the people around.

I spend most of the day on my iBook laptop with one eye on the TV. I have been watching the Food Network, building up my appetite for a trip to Famous Dave's for BBQ and beans

Thought now is I will be here for a few more days until the loose stools clear up completely and I can survive without IVs.

Sunday, June 07, 2009

Rotavirus Continues

It is now Sunday morning and 5 days since I was admitted to the hospital for dehydration from diarrhea last Monday night. Drs say that there is still traces of the Rotavirus in my stools which are still very soft, but not very frequent. They also say that my intestinal mucosa needs to heal so I am on a NPO diet (Nil Per Os - Latin: Nothing by Mouth), no food or water except to swallow my pills. They pump 250ml of IV into me each hour and I run to the bathroom almost hourly to pee it out. Seems like a never ending cycle similar to what came first, the chicken or the egg. My weight is back to almost what it was before all this started so actually the benefit of the IVs is for me to filter out the 5% Dextrose for nutrition.

I feel fine and my blood counts and blood pressure are back to normal as well. I took two walks around the 4th floor yesterday. Maybe I will go to other floors or try to make an escape later today. Currently looks like I won't go home until Tuesday because they want to see how I react to a limited diet for a few days first. I will post at least a short status report each day. If nothing else, it is something to do to cut the monotony of this place.

This morning I watched a TV church show where the sermon was about Jonah and the whale, Made me wonder what the "reason for my affliction" is. There is something symbolic at least about being "in the belly" of the whale, but three days have come and past; I am still here. I need to ponder this some more and pray that I will be "vomited out upon dry land". (KJV version of Jonah 1 & 2 is quoted.)

Friday, June 05, 2009

Code Brown - Rota Virus

Just like my bout with diarrhea before Christmas, I am back in the hospital again. On Monday afternoon, I started feeling very hot and sweaty though I had not exerted myself much and had no fever. We barbecued some bratwurst but before eating I lost my appetite and felt nauseous. A short time later, I had my first run to the bathroom with diarrhea. After about 8 more episodes, the later ones with vomiting, I was getting severely dehydrated. I lost 10 lbs since the morning even though I had a good breakfast and lunch. During the night I tried to drink more water, but by morning I could not sit on the edge of the bed because I was too light-headed. I even dropped a cup of water, breaking it on the floor.

My wife called the BMT clinic and then 911. The paramedics came and took me to the hospital emergency room while giving me an IV on the way. All I had on was my disposable diaper, but at least I was still warm. After a brief stay in the emergency room, they got me up to the intensive care unit (ICU) where they put me on more IVs. To increase the flow they inserted a central line (with 3 lumens) into my jugular vein and at one point were pumping 2 liters of fluid per hour into me. I still had 2 other IVs inserted by the paramedics and ER staff. In the space of one day, my weight fluctuated from 208 lbs down to 198 lbs and up to 223 lbs, just due to losing or adding fluid. Back in December, my weight had been up to 235 lbs before we brought it down to around 198 through paracentesis plus diuretics.

A big complication of the dehydration was that my blood pressure dropped severely and my kidney function was decreased. My BP was down in the 60s/40s where normally it is the 120s/70s. Of course, my kidneys did not really have much fluid to remove, but Drs were concerned that the creatinine level was elevated. In addition, they discovered a heart problem called PAC, (premature atrial contractions) though not life threatening and not related to this situation. My white cell count was elevated indicating an infection while my platelets dropped. I skipped my phlebotomy yesterday if for no other reason they have withdrawn enough with blood samples over the past four days. All of my blood counts are now back to normal.

Anyway, one of the tests showed the Rotavirus, which is the leading single cause of severe diarrhea among infants and young children. I am now on a couple of medications to fight the virus and supply lost minerals plus a full liquid, lactose-free diet. They allowed me a regular diet yesterday until the diarrhea came back last night. Now I just heard they are taking me off everything by mouth except for medicines and ice chips. They want my gut to rest and heal.

For a while I felt like I was tied to the bed. I had 5 leads for EKG monitoring wrapped around my chest with IVs in both arms and the central line in my neck, all getting tangled together. One line was tied to a special instrument that monitored my central venous pressure. That was mounted on the wall so I could not walk with it to the bathroom. I had to use the commode by the bed. At least now I am down to just the central line in my neck which is used for one IV and blood tests. I can get up and walk around the room and take my "coat rack" (IV stand) with me to the bathroom. I still get poked 4 times a day for insulin shots though.

They don't let me out of the room and any hospital staff that comes in wear disposable gowns, masks and gloves. They are very cautious about spreading this contagious virus to others who have compromised immune systems in this ward. My wife also had a minor bout of diarrhea on Tuesday after me. She also learned yesterday that a student at the grade school where she teaches has the Swine flu. Luckily, it was not one of her students, but we have to be extra cautious if she gets any symptoms.

I probably will not be home until Sunday at the earliest if I can make it a day without the diarrhea.